History

Journal History

Tuesday, December 26, 2006 11:09 AM CST

We had a nice Christmas with some of Ed's family. We got to see Roy, Lori, Tim, Amy and Jessica one evening and then Arnold, Elinor and Matthew were with us, mom and pop for Christmas Eve. It had been a few years since we had celebrated the Christ Child's birth with them.

Before we ate Christmas Eve dinner, we read a poem which was sent to us by Ed's brother and sister-in-law, Frank and Gwen, who lost their son in a car accident 3 1/2 years ago. I hope they don't mind if I print it here. Thanks so much for thinking of us and sending it! I hope you had a wonderful Christmas in Las Vegas with your sister and family.

My First Christmas in Heaven

I see the countless Christmas trees around the world below
With tiny lights, like Heaven's stars, reflecting on the snow

The sight is so spectacular, please wipe away the tears,
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear
But the sounds of music can't compare with the Christmas choir up here.

I have no words to tell you, the joy their voices bring,
For it is beyond description, to hear the angels sing.

I know how much you miss me; I see the pain inside your heart,
But I am not so far away; we really aren't apart!

So be happy for me, loved ones, you know I hold you dear,
And be glad I am spending Christmas with Jesus Christ this year.

I sent you each a special gift, from my heavenly home above
I sent you each a memory of my undying love.

After all, love is a gift more precious than pure gold.
It was always most important in the stories Jesus told.

Please love and keep each other, as my Father said to do.
For I can't count the blessings or love He has for each of you.

So have a Merry Christmas and wipe away that tear,
For I am spending Christmas with Jesus Christ this year.

In Loving Memory of Cameron Dalene

Isn't that beautiful? We ALL miss Cameron SO much and nothing was the same without him but we talked about him freely and reminisced about our memories of him. In a few days, we will be putting our Christmas decorations away and will move on toward the New Year. We will continue to rely on God to keep us focused on what He has for us to do here on earth until the time he calls us all HOME.

God Blessings on Everyone of you in the New Year.

Thursday, December 21, 2006 7:23 AM CST

Derek got home last night. It is so good to have him here. It is like a big piece of our puzzle has been put into place. There is obviously a big piece still missing and it won't be filled but we will rejoice in what we do have.

We will be going to Ed's parents' house in Schroon Lake, NY for Christmas. It has been years since we have been to their "Norwegian retreat" in the mountains and are looking forward to it. One thing just isn't right, though. It doesn't look like it will be a white Christmas. This is a part of the country that usually gets snow in October and it stays until March or so. This year, they have had some snow but it hasn't stayed around! Weird! Now imagine that, our friends and family out west! Even Albuquerque has had several inches of snow....then there is Denver. Wow, you guys got hit hard.

It was last year that we spent Christmas in Denver with Larry and Kathleen because Cameron wasn't able to go home to Santa Fe. We only had a little snow the whole time we were there from early Dec until early February. Cam and Larry actually went on a motorcycle ride on Christmas Day. What a difference a year makes. :)

I am thinking of so many families of kids who have passed away this year or in recent years. I am praying for all of us to find some joy even through the obvious pain of not having our dear, sweet children with us. Thinking of you, parents of Nick, Marcus, Jake, Quintillus, Carmen, Brandon B, Brandon M., Lauren, Clare and many others I am not thinking of at the moment.

I'm rejoicing, too, with many who have gone through incredible struggles with your children this year and still have them with you, whether they are doing well or if they are still facing difficult challenges. Enjoy every moment you have with them!

I love you all and God Bless You!
Merry Christmas! Juli

Friday, December 15, 2006 4:34 PM CST

Thank God for his faithfulness. He has helped us overcome more huge obstacles to finally close on this house. He has made it abundantly clear that he wants us to be in this house. All we want is to be obedient to do what He would have us to do. We want to honor Him and praise Him in this place or wherever He takes us.

I also want to give thanks that I am feeling so much better. The arthritis and anemia are still there, but somehow the pain has subsided significantly. Thank God. I am finally able to perform my daily activities without suffering significant PAIN!

I have purposed in my heart to praise God through this physical trial in the same way I purposed in my heart to praise Him through Cameron's illness and struggles. The joy of the Lord is our strength. Even when I don't feel very joyful, I can still have joy in the depths of my soul just knowing that God is sovereign and knowing that he loves me. He is the King of Kings yet he is actively involved in my little, seemingly insignificant life. How can one not rejoice when that realization comes into focus.

I will continue to serve Him. When I have questions about Cameron's death, He is there to hear my heart's cry and to put his arms around me and reassure me that He is in control. Nothing surprises Him. He knows how much I miss Cameron.

May God encourage you in the areas that you need it this holiday season. Joy To The World, the Lord has come! and He is still here.

Wednesday, December 13, 2006 6:27 PM CST

I was blessed to have a wonderful group of friends come to wish me a Happy Birthday on Saturday and again on Sunday. Thanks, everyone for coming. I feel loved :)

My doctor called today and said the blood test I had on Tuesday showed that my anemia has improved slightly so she told me to start taking iron and said I could resume the anti-inflammatory medication for the arthritis! Yeah! I hope it starts to help soon.

We are going to be staying in our house. The closing will be on Friday. It will be good to have that settled at last.

I was so sad to read that another little friend from St. Jude, Carmen, went to heaven this weekend. I'm praying for her family who were so faithfully at her side for months.

I'm still having a hard time getting into the Christmas spirit with the usual enthusiasm. I'm trying, though.
It was fun to go to a Christmas party for our Bible Study group. I plan to do some shopping and baking in the next few days.

....missing you, Cameron. I'm thankful for the time we had with you and the wonderful memories we have of your Christmas joy.

Saturday, December 9, 2006 7:55 PM CST

The gloom I felt last night has lifted. Oh, I still miss Cam as much today as yesterday, if not more. I know there will be days when the sadness descends. However, I know that God's spirit in me will not let me stay there for long. I have much to be thankful for and to enjoy.

Today we had a wonderful party with some dear friends for my birthday. It was fun and comfortable being with old friends....sort of like putting on a pair of comfortable slippers. Thanks everyone for coming. I love you all.

By the way....want to hear something incredible. Remember me talking about little 4 year old, Jake, from St. Jude. He earned his angel wings about a month after Cam. Well, his mother hit a jackpot on a slot machine at a casino in Louisiana and won $4.4 million!!! Can you believe that? Way to go Stacy and Don! God Bless you!!

Friday, December 8, 2006 9:41 PM CST

My heart is aching tonight. I can hardly see the screen through my tears. I felt I needed to write some of my thoughts down. I'm not sure why. Maybe it will help me to release some of the pain so I can get some sleep tonight.

I am so conflicted tonight. I am genuinely sooooo very thankful that many of our friends who currently have faced cancer or who have children who have faced cancer are doing so well. Nothing would make me more satisified in my life than to hear there was a cure....that no child would ever have to face any cancer ever again, No more chemo, no more radiation, no more pain, no more long-term side-effects, no more making our kids grow up way too soon. I never want another family to have to bury a child because of losing them to cancer!

None of my feelings have anything to do with jealousy or envy that many are doing well. I THANK GOD EVERY DAY that they are. But I have to ask the question, why, why, why, have so many of our kids and their families had to pay the ultimate price? Why do some make it and others don't. How does God look at these kids and decide which ones he will take home and which ones he will bless with longer life here on earth? Why are two more families that I know, facing the holidays as they are watching their children fighting hard to hold on to life?

I just wish Cameron was here. I wish Marcus, Nick, Brandon, Brandon, Clare, Jake and others were home with their families tonight. The knowledge of Cam being in heaven with Jesus is TRULY comforting. I don't know how a parent could face the reality of their child's death if they did not have that certainty in their hearts. But the human part of me just doesn't want to let him go tonight. I long to hold him and to talk to him.

I know I am usually pretty positive in my journal entries. I don't want to bring anyone down. I'm just being brutally honest tonight. Thank you for allowing me to release these pent up feelings. I hope you will continue to hold us up in your prayers.

...and those of you who have healthy children at home, give them a big hug and appreciate every minute you have with them. I am going downstairs now to do just that with Chad and will be glad to wrap my arms around Derek in just a week or so when he comes home for Christmas.

Thursday, December 7, 2006 3:27 PM CST

Thanks for the birthday wishes. Yes, yesterday was a big one for me. I turned 50!!! It doesn't bother me. It is just a number. I wake up and go through today the same as I did two days ago when I was ONLY 49! Ed and Georgianna are planning a party for me on Saturday so that will be fun.

I am trying to get excited about Christmas. It is difficult but I feel it is important to do that for Chad and Derek. Three years ago, we spent the hospital in University of New Mexico hospital and celebrated Christmas on New Years. Two years ago, Cam was healthy and we enjoyed a beautiful family Christmas with all the trimmings. Last year, Cam and I were in Denver staying with Larry and Kathleen. Ed, Derek and Chad joined us there. It was a beautiful time with family but Cam's illness was looming large; he was a very sick boy.

Cameron was the one who would get so excited about helping me make cookies, decorating the tree, putting out the Santa collection I have and wrapping the presents. He worked hard to buy just the right gift for everyone he cared about. He just enjoyed all of it. This year, he is spending it with the Birthday Person, Himself! I wonder if they celebrate Jesus' birthday in Heaven.

Thanks for checking in. Please continue to pray for Carmen and Baby Donovan. They are both hanging on to life and need miracles. www.caringbridge.org/in/babydonovan
www.caringbridge.org/visit/carmenwhite

God bless you as you prepare for Christmas. Please take time to spend with Him every day and to appreciate the real meaning of the Season.

Sunday, December 3, 2006 7:54 PM CST

Not much has changed since I wrote last week. We are still unsure about our house situation but it is looking more and more like we will be staying here. Chad would not be allowed to stay in Waterford if we rented anywhere else. There are still no suitable houses for us to rent in Waterford.

I am still feeling about the same. I didn't learn much from my doctor. She is just ordering some tests, a colonoscopy (YUCK) to try to see why I am anemic. In the mean time, I am still not taking any meds for the arthritis pain or the anemia so I am HURTING and still kind of dragging.

Last week was difficult. I cried a lot. I am sure hoping to get some answers soon about the house and the pain. I just need some peace...finally.

I got a job offer from Waterford Public Schools. I told my boss that I don't really think I am ready to work yet. When she told me that I would only be seeing one child, one hour a week and getting paid very well, I said I would do it. I start tomorrow. I am really kind of looking forward to it.

I am still looking to God for our direction. I know He has "plans to prosper us and not to harm us, plans for a hope and a future." I'm standing firm on that promise.

....missing Cameron.....wishing he was here.

Love to you all, Juli

Tuesday, November 28, 2006 6:59 AM CST

I am missing Cameron more now than ever. I miss his laugh, his enthusiasm for life, the sparkle in his eyes, his love of learning, his kitchen experiments, his "I love you soooo much", his hugs, his tenderness toward Chad and his joy in playing with Blaze. It seems to be getting more intense. Is it the holiday season, the stress from the house issue, or a natural progression of the grieving process? Probably some of all of those things and more.

I am still not feeling well. I learned about 3 weeks ago that I am "very anemic", had the blood test re-done last week and the numbers have dropped even more...explains the fatigue. I have an appointment with the primary care doctor tomorrow. I'll see what she says about it.

I won't go into great details but it has been an intensely stressful few days. We were supposed to close on the house today but have had some reservations about the house and felt the decision to buy was made too quickly at a time when we were emotionally still reeling from Cam's death and from the way the move was happening so quickly. We also didn't have the total amount of money we needed for all the closing fees,( For one thing, the money coming to us from Ed's company for the move hasn't gotten here yet.) So we thought maybe this wasn't the house for us and so we sort of decided we couldn't go through with the closing so we would lose the house and the down payment. We could also have problems because of the intent to buy contract Ed signed. Also, we knew they might ask us to move out in a matter of a few days!

We started looking for rental houses in Waterford. There were two we were interested in that were listed on the internet. When we called about the houses, they were both already rented out. We have called several realtors to ask them to help us find a house. There are NO suitable houses available right now in Waterford!

I called Waterford schools to see if they would still let Chad attend the school if we had to live out of the district. The answer was probably not but they would look into making a special exception in our case.

Last night, the owner of the house called us directly and says he wants to work with us. He offered us two more weeks to live in the house and that much time to sort through what we need to do. Thank God for the grace this guy has given to us...at least we aren't homeless. Maybe we will end up staying here after all.

Please pray for a couple of our St. Jude friends. Carmen is having a great deal of difficulty and our friend, Emily, was hospitalized in Florida with a high fever.

We could use some extra prayers for us to make the right decision about the house.

Thursday, November 23, 2006 4:12 PM CST

HAPPY THANKSGIVING! I hope you have all gotten your fill of turkey, stuffing, sweet potatoes, pumpkin pie, etc. We did. We had two places that were empty at our table. Derek and Cameron were greatly missed. At least we got to talk to Derek and he was spending the day with my parents and brothers and their families.

Even though we have had such a tough year and we miss Cameron dearly, we still have much to be thankful for. The biggest thing is that we KNOW where Cameron is. Praise God. The others include family, friends, being back in CT, God's provision, and all the people we have met in the past year.

We had planned to go visit Cameron's memorial site but it rained hard all day. We will do that tomorrow.

We are thinking of the other families who have lost their children this year.

Monday, November 20, 2006 2:20 PM CST

It is a good anniversary today. Ed and I have been married for 24 years. WE have been through a lot together in those years and we know we can depend on each other through thick and thin, richer and poorer, sickness and health, etc.

HAPPY ANNIVESARY, EDDIE! I love you,
Juli

HAPPY THANKSGIVING to all of you. It will be a difficult holiday without Cameron and Derek isn't going to make it home. However, we are happy that we can spend it here with our old, dear friends, especially Georgianna and Ray.

Friday, November 17, 2006 12:31 AM CST

I guess it is time to type a quick update about how we are doing. We are doing ok. We continue to miss Cameron so much. On a daily basis, the pleasant memories we have of him outweigh the grief we feel about his absence. The sadness does take over at times, though, and the tears flow. I'm sure it will be that way for a long time.

I am feeling quite a bit better. Tests showed that I am anemic along with the flared up arthritis. I got a new medicine which is helping some. I went to the grocery store today, walked the aisles with only moderate pain. That is a big improvement over how I was feeling a week ago.

We enjoyed a visit from Ed's brother, Arnold and Elinor last weekend. Ed spent a day with his brother, Stan, over on Long Island this week. I have had a chance to get caught up with some good friends. We are fortunate to be back here and reconnecting with these wonderful people. We, of course, miss the friends we left behind in New Mexico.

We are have run into a glitch in finalizing the closing on the house. It is a long complicated story but we have a week to figure out what we want to do....stay here or move out of this house into a rental while we take a little more time to look around at other places to buy. It has been stressful and we are looking to God for the direction we need to take.

Thanks for checking in and for your continued prayer support.

Wednesday, November 8, 2006 8:44 AM CST

We are finally back on line! Yeah! It has been an incredibly busy time since we got here and we still have a lot to do but we can take it at a slower pace and eventually we will get unpacked and organized. We had another painful "anniversary". On November 1, it was 6 years since we heard the painful words that Cameron has leukemia. That day changed our lives forever. I remember it like it was yesterday.

It is good to be back here in Waterford. We are picking up almost where we left off with so many dear friends, familiar town, and church family. Chad has adjusted back into school smoothly. The only problem is that he gets off the bus at 2:10! It is so early it feels like I have only a few short hours to get things done before he is home.

However, everywhere we go and whatever we do, we find ourselves saying, "Cameron would love this." or "Cameron used to ....." There is still such an emptiness that is undescribable. It is so painful to see the kids his age in church, growing up, enjoying life, planning their futures. Cameron should be right there in the middle of them. He, instead, is enjoying paradise with Jesus. How could I wish him back? It is just my flesh missing him sooooo much and it hurts.

I have been reading some books about Heaven. I just want to know everything I can about it now that my son is there waiting for us to join him. I get great comfort from knowing he is there in the presence of God.

I am still not doing well, physically. I have so much pain I can hardly do the most basic activities. So it is a big challenge to do the demanding tasks involved in moving into a new house. I am taking it slow and do what I can when I can. I called for an appointment with The Rheumatology Department at UConn. I was told I couldn't get in until Jan 19. I asked if I could be put on a cancellation list to try to get in sooner. Before the conversation was over, someone called and cancelled for the following day. So yesterday, I went there. Several blood tests and x-rays were taken, my medication was changed and hopefully, we can figure out what do to to help me. Please pray for some pain relief for me.

Ed is enjoying his new position at work. It will present lots of new and exciting opportunities for him.

Derek is doing much better. Thank you for all your prayers for him. He is going to be fine. We are hoping he can come home for Thanksgiving but haven't ordered his plane tickets yet. I don't know if we will be able to find a flight at this late notice.

So all in all, we are doing ok. We will never be the same. There will always be a HUGE hole in our hearts. But we have a lot to be thankful for. We find ways to laugh and have some fun. We are looking forward to what God has for our future. I just pray that Cameron's death is not in vain and that God will continue to use his life to change people and draw them into a close relationship with God. That is what he wanted more than anything.

We are sad that our friend, Marcus passed away about a week ago. I am thinking about you, Michelle. Our little friend, Kole and his family, have gotten the bad news that his cancer has returned. I am praying for you guys. We are thrilled that Jace, Stephanie and Emily are doing well. I continue to pray for the families of Jake, Nick, Brandon and Nathaniel.

Our new e-mail address is
ldalene@sbcglobal.net

Sunday, October 29, 2006 8:26 PM CST

October 29....it will always be a special day to us because it is Cameron's birthday. Today was emotional and I had many tearful moments as memories of him flooded my mind throughout the day. Our friends, Georgianna and Ray went with us to the cemetary and we prayed together and released 5 birthday balloons into the sky. We kept 3 to place on his site. Thank you to whoever put a beautiful handmade cross and angel on his site. It touched us so much to approach his grave and have it marked like that since we hadn't been back for several weeks. Please let us know who did that so we can thank you properly.

We went to our old church today and were blessed to be greeted by so many old friends and got to meet many new people who I know will become friends. We went out to eat with Pastor Brad and Debbie, MJ and Emily, Georgianna and Ray. We feel so at home here.

Yesterday was a busy day at the house. We had several friends stop by to help clean the house, cabinets, etc and then to help us unpack. Thanks to Christine, Tiffany, Rosita, Rusty, Stephanie (and their kids, Alex and Jacob), Judy, Anna and the Pfisterers, Dave, Suzanne, Gretchen, Daniel, John, Lydia and Ron.

Ed had to leave early in the morning to go to Chattanooga, TN for work. I am going to try to get Chad registered for school, although I haven't been able to find his medical records to show proof of his immunizations. I hope they still have a copy from when he attended there before. Or maybe I can go to his doctor's office and try to get a copy that way. If not, he will not be able to get started until I find the right papers!

I am so thankful that 15 years ago, God blessed our family with our beautiful son, Cameron. We miss you so much, honey!

Friday, October 27, 2006 12:17 AM CDT

Chad and I are taking a break back at the hotel room while the busy activities continue at the house.

It is great to be back in this familiar area. When we arrived at the house last night, we were met by 3 friends and 4 more came shortly after we got there. It is bittersweet, however, because Cameron would have been so happy to be back.

The drive went very well. I, however, learned that I am NOT cut out to be a cross country truck driver!! It was tiring but I DID it! We traveled 41 hours in 4 days. We went through 12 states and saw the beauty of each state. The colors were at a peak through eastern TN and Virginia. The mountains looked like they were blanketed with a quilt of beautiful fall colors. We will miss the unique beauty of New Mexico but will enjoy the trees, green grass and the beaches we have in CT. I even made it through New York City! I was fortunate to be following closely behind an experienced New York driver!! I nearly peed my pants but that had more to do with the large coffee I had an hour before we hit New York than nerves. There just isn't a good place to stop in all that heavy traffic!

The dogs were fabulous travel companions!! Blaze had traveled once to Denver but that was it. Dimitri hadn't traveled more than just to the vet. They were both relaxed and happy.

Chad rode the whole time in the jeep with Ed. They have become comfortable traveling partners through the past year of going back and forth to Denver and Memphis.

We stopped in Memphis on Tuesday. I had to return the posaconazole to the pharmacy at St. Jude. Because it is an experimental medication, it couldn't be shipped in the mail. It was emotional and difficult to walk through those doors without Cam. I was determined to go in and out without crying but when I saw some of the caring people we got to know there, it got to me. We got to see the people at B Clinic and Cindy, Mary and Drs. Hale and Barfield and Cam's teacher, Justin. We also picked up some stuff we left in storage at the Target House.

Now, we are beginning a new chapter in our lives. It is exciting to see what God has in store for us. It is also
sad and there is that big empty hole, sort of like the amputated leg I talked about earlier. But we will continue to learn how to "walk" in a new way with the help of God and our dear friends and family.

Thanks for your continued interest in our family and how we are doing.

Gotta get back to the house and see how much progress has been made in unloading the big truck.

Thursday, October 26, 2006 8:31 PM CDT

Just a quick note to let you know we arrived in Waterford tonight after 41 hours of driving over 4 days. We were fortunate that the moving van wasn't coming till tomorrow so we could extend the driving one more day. It helped. I'll write much more about the trip when I have a little more time. Right now, we need to get a good night's rest and be ready for a big day of moving all our stuff in tomorrow.

Thank God for giving us a safe trip!!!

Sunday, October 22, 2006 5:54 PM CDT

We have had a few busy, crazy days. Friday was one to remember! We house we were planning to rent in Waterford and move right into was no longer available. It seems someone was bidding to buy the house before we even got there. So, Ed decided to see if we could qualify for a mortgage to buy the house. We have had some credit issues that we have been working hard to resolve so we knew it was a long shot but we prayed that if God wanted us to have that house, that he would make a way. Well, within an hour and a half, we were approved for the mortgage!! We put a bid on the house which was accepted around 10:00pm! So Ed wasn't able to fly home until Saturday afternoon rather than late Friday night. We will be moving into the house and close on the mortgage later in November. Can you believe all that? I just kept asking God to make it happen if it was what He had planned for us and to close the doors if it was not of Him. Well....we will be moving in there around Thursday.

The movers got the truck all packed yesterday. We spent the night in a local hotel and cleaned the house today. Thank you so much to Jennifer, Brandi, Nancilee, their two girls and Kimberley for helping us clean. They were "merry maids" today but you will usually see them in classrooms teaching a roomful of kindergarten, first and second graders at El Dorado elementary school where I used to work and Kimberly teaching high school math at ATC. Thanks to Michele and John for loaning their vacuum and carpet cleaner, too. Ed and I couldn't have done it without your help cuz I am still really struggling with LOTS of pain.

Ed went down to try to see our "foster son" in prison but got there 10 minutes too late for visitors to be accepted so he didn't get to see him. We will stay in Santa Fe one more night and then hit the road, hopefully well rested, in the morning.

Chad has been "beside himself". He just doesn't know what to think about all the activity. He is acting insecure. He seems to like the activity but then gets upset. Thanks to his school for giving him a wonderful going away party on Friday. His teacher, Sharon, brought some great pictures for Chad to have to remember all his friends at Capital High School.

I am thankful how everything has come together in the past few days. Now, I am just asking for prayers for a safe trip and for me to feel BETTER!!!

Thursday, October 19, 2006 5:05 PM CDT

WEll, the packers have been here all day and there are boxes all over the house. They will have at least another half day tomorrow and will then start loading the truck.

I have to disconnect the computer tomorrow for them to pack it so this will likely be the last update for a couple of days. We will be staying in a hotel Friday and Saturday nights and I have my pc so I might be able to log on there.

Ed is so happy with his new job, at least the first impressions of what he will be doing and who he will be working with. He knows many of the people from working with them on previous jobs.

I want to thank David from Hawaii and Patty from Colorado for sending a book each. We look forward to reading them when we get settled in in CT. Thanks, too, to Jennifer from Memphis for sending the DVD. It came today so we got it before leaving.

I am sort of tailing behind the packers and cleaning a little bit but it is hard to do without getting in their way so most of the cleaning will have to wait until the truck is loaded. I am just too tired to do much anyway. I am getting so terribly discouraged at how exhausted I am and the amount of pain I experience even when I do next to nothing. Please pray that I will start to feel better FAST! I hate this because I am usually a pretty good worker with good stamina and I certainly have the desire to be doing much more than I can.

I am so thankful today that we have packers to do all this work and that the company is paying for it. I am thankful, too, for Ed's job.

Tuesday, October 17, 2006 9:44 AM CDT

Things are finally out of the hold pattern and we have a real plan for the move. The packers will be here on Thursday and Friday to pack our belongings, they will pack the truck on Saturday, we'll clean the house on Sunday and when that is finished, we'll hit the road. The house in Waterford is ready and waiting for us so we will soon be living in CT again....bittersweet without Cameron with us. He would have been soooooo excited!

Ed left this morning to go to Boston. He will be working there this week and come home on Friday night. He's looking forward to get back into the swing with work, I think.

I have been sick, again, for a couple of days. I can't believe how this is happening. I was in a lot of pain from the arthritis on Sunday, had a fever, upset stomach, just felt awful. Monday was a little better, still not feeling well, though. I know this is all related to missing Cameron so much. However, by the evening I felt good enough to go with Kimberley out for dinner and to see the movie about Esther, "One Night with the King" I think it is called. It was a good movie, I recommend it. It was good to spend that time with a dear friend I will miss a lot.

I have a lot to do today so hopefully, I will be up to the challenge physically.

But I am thankful that the move is underway and we will soon be settled in Waterford. I am thankful that Ed had a safe trip and got to spend that time with Derek and my parents.

Friday, October 13, 2006 9:33 PM CDT

We are still on our "extended vacation". We still don't know when the movers are coming or when Ed has to report to work so we are still hanging out.

Because of the extra time we have, Ed decided he really needed to go to Springfield and spend a couple of days with Derek. He can support and encourage him and help him get his car fixed. He is on h,is way there, now. He'll spend the night at my parents' new house that we haven't seen yet.

Unfortunately, he will miss Larry and Kathy. They are on their way down here for a couple of days to visit with Chad and me before we leave. We are looking forward to seeing them. We are planning on going to the Balloon Fiesta in Albuquerque tomorrow.

As for how I'm doing, I have times of tears and heavy sadness almost every day but the biggest thing I notice is that I continue to be so tired. I sleep pretty well and have taken short naps almost every day (which is NOT like me) but I still feel like I could fall asleep just about any time. I have read that fatigue is a common part of the mourning process. I am thankful that I have had the extra free time so I can better deal with this fatigue.

Tuesday, October 10, 2006 10:16 AM CDT

Our move is kind of in a hold pattern. I'm not sure why but I know God's timing is perfect so it will work out. In the mean time, Ed and I have gotten some much needed rest and time together.

As for how we are doing. Derek continues to deal with the stresses of his life as best he can. It has been pretty heavy for him. If anyone would like to send him a card or note, his address is Derek Dalene
Evangel University
1111 N. Glenstone
Kraus rm 224
Springfield, MO 65802

Chad had another melt down last night. He was grumpy at school yesterday, too. I sure wish he could verbalize how he is feeling! I'm sure he is just missing Cameron and doesn't understand why he isn't here.

A friend I met at St. Jude, Wendy, is the mom to Nick. Nick passed away only a week or so before Cameron. She wrote an analogy of how she is feeling at Nick's loss that I thought was so good, I asked her if I can borrow it. She compared losing Nick to having a limb cut off. she wrote, "Imagine waking up one day out of the blue and having your leg amputated for no apparent reason. You have two choices...to give up and quit walking forever or to learn how to walk again without your leg. I have heard that people who have endured amputations have what is called "phantom pains". This is when they actually feel pain in that leg that is not there. That is what I experience. It sometimes feels like Nick (or Cameron) is here in the house. For a split second I feel like calling him for supper and then I remember. How do you learn to climb stairs with one leg? How do we do the things we have always done without Nick (Cam)? What do you do with the one leg of your pants that is now empty? What do we do with an empty bed or room? Actually losing Nick (Cam) is much more painful than losing a leg. I'd rather someone took both of my legs right now if I could just have him back but that's not the way it is. You can eventually learn how to cope without your leg but you will never have 2 legs again and your life is changed forever."

Thank you, Wendy, for letting me share that because it so appropriately describes how I feel, too.

So Ed and I are learning, day by day, how to "walk" in a different way. It is only one month since yesterday that we buried Cameron so everything is still fresh and painful but we are going to be ok with God's help.

Thanks for continuing to hold us up in your prayers.

Friday, October 6, 2006 9:18 PM CDT

The sadness I felt yesterday was not nearly as intense today, thankfully. I went and visited our former "foster" son. He, unfortunately, is doing some time in the state prison in Grants, NM. We still keep in touch with him and encourage him to improve his life and to make better choices. It was good to see him and to put some focus on something different today.

We got some good news. We found a house to rent for a few months when we get to Waterford. It is only a few houses down from the house we lived in before! It isn't confirmed yet but it looks like it will work out. If we like the house after a few months, we will try to buy it. The best part is that we could move right in. We wouldn't have to put our household stuff in storage or stay in a hotel for any lengthy time. That would be very difficult with Chad and two dogs while Ed is working out of town. Getting into a house would be so much better. We still don't know the timing of when this will all take place. It will likely be late next week or the following week.

Those are the things I am thankful for today. God Bless you all. Enjoy this beautiful fall weekend.

Thursday, October 5, 2006 10:39 PM CDT

My heart has been so heavy today with intense sadness whenever I think of Cameron and how much I miss him. It actually physically hurts and I have cried many tears today. I do feel God's presence with me, though and it is not a desperate feeling; just such a devastating absence of my son that I love so much. Although I don't often write of Ed's feelings, he, too, is experiencing many of the same things I am.

The sorrow is even more intense as I read that little Jake has passed away today. He was at St. Jude when we were there. His parents have fought a hard fight with their dear son and I can relate too well with how they will be feeling in the next days, weeks and months. Thankfully, they have a strong faith in the Lord that will sustain them.

As I was praying for Derek and the stresses he is dealing with, I got a measure of peace knowing that Cameron doesn't have to deal with those stresses, frustrations, pain, rejection or any other negative emotions we deal with on a daily basis. In fact, there is a scripture that refers to that. It is in Isaiah 57:1-2. "The good men perish; the godly die before their time and no one seems to wonder why. No one seems to realize that God is taking them away from the evil days ahead. For the godly who die shall rest in peace."

We certainly would have preferred for God to heal Cameron. We know He has the power and ability to do that but He knows far more than we do and can see far beyond what are human eyes and minds can comprehend. David in the Psalms says that "Precious in the eyes of the Lord is the death of His saints." He loves Cameron so much and sees his death as precious. Now His grace will be sufficient to provide us with the comfort we need until the day when we will see Cameron again and be in the Lord's presence with him.

Tuesday, October 3, 2006 6:39 PM CDT

Happy Birthday to Chad!! He is 20 years old today and knows it is his special day!! They had a party for him at school. We are just having a very simple celebration with Dad, Chad and me.

I went to see the rheumatologist today. He has been wonderful to keep my prescriptions coming even though I hadn't seen him recently. I'm doing ok, feeling better but I am still very tired and usually not sleeping well. I understand that is not uncommon since it is only 1 month since Cameron passed away. It is all part of the process of grieving, I guess. It seems like soo much longer than a month since Cameron was here. I miss him so much, I can hardly stand it sometimes.

Go Yankees! Win the whole thing for a fan of yours, Cameron. I sure wish I could watch the post-season with him. My dad, and most of my family, are all Cardinals fans so Go Cardinals, too.

The move process seems to be on hold at the moment. I wish we would hear something but then I am enjoying having some time here at home, too.

I love you all for continuing to pray for us. Say an extra prayer for Derek. He had a car accident yesterday. Thankfully no one was hurt. He is just having a hard time with everything....

Friday, September 29, 2006 9:40 PM CDT

We are missing Cameron more and more each day. The huge hole he left in my heart hurts so much. I think some of the numbness has worn off and I am feeling the loss so much more. Cam sent a voice mail along with a picture from St. Jude to Chad on Ed's phone. I love to listen to it but it also hurts so much to hear his sweet voice and his gentle words to Chad.

Thanks to many of you for praying for me to feel better. I still have the cold but I am feeling better and am getting a little more energy. I have gotten a lot done toward the move. Ed's date to report to work in Boston has been postponed for about a week so he will be around here next week to help me. I'm so glad the pace of this move has slowed down. We thought we would be on the road by now!

We continue to get our strength from God as well as from each other. I am thankful today for Ed, Derek and Chad. What would I do without my guys?

Please pray for the family of Brandon Bushnell who earned his angel wings this morning. He was a 12 year old boy we met at St. Jude. I am so sad...

Wednesday, September 27, 2006 10:08 PM CDT

It is amazing that the whole time I was taking care of Cameron, I never really got sick. Now, I have a miserable cold and am really run down. If I had gotten like this when he was here, I couldn't have taken care of him like he needed. Huhmmm... Anyway, I am so glad we didn't have to do the hurry-up move this week when I am feeling lousy. We still don't know when the move will take place. Paperwork is being processed in the main office so we will know soon. Ed has continued to deal with turnover at the lab so he has been keeping busy there.

On Saturday evening, I was crying as I thought about Cam and Chad picked up on it. Although I quickly pulled myself together, he continued and went into a deep gut-wrenching cry. It was obvious that he had come to realize that Cam wasn't coming home and he was mourning. He doesn't talk but he kept signing "Cameron" and "Jesus" so he was telling us he knows Cam is with Jesus. I don't know what that really means to him, how much of that he comprehends but he understands that they are together somehow and that Cam isn't here any more. It was awful to watch him in that much pain. He has been sad at times this week but no more of that deep sorrow he exhibited on Saturday night.

Pastor Mike and his wife, Gloria, took us out to eat last night. It was such a nice evening with some wonderful people. Then we stopped by our cell group (Bible study group). We said goodbye to them cuz Ed will likely not see them again before he has to leave. It was not easy.

Monday, September 25, 2006 7:18 PM CDT

We still are not sure when we actually move out of this house. Ed will start work on Monday one way or another but Chad, the dogs and I will likely stay for another week or two. Then Ed would fly back to make the drive with us out east.

We are busy with typical move stuff....sorting through clothes and other things, discarding some, giving some away.

I have been pretty stressed out. (Does that come as a surprise to anyone?) I actually catch myself holding my breath sometimes and then have to consciously tell myself to take a deep breath. All this is happening so fast along with the other grieving we are doing. I'm not feeling very well physically, either, so you can add that to your faithful prayers for us. However, God is merciful and will help us get through this, too.

Lots more to do on my "to do" list for tonight so I'll sign off and say thanks again for all your loving support.

Saturday, September 23, 2006 9:23 AM CDT

My heart is aching this morning for some more families who have received bad news. Please pray for Brandon and Jake and their families. Both families have been told there is nothing more that can be done for their kids. They need a miracle or they will lose their children, too. I learned of another boy, also from St. Jude, who passed away this week. He, too, had gone home after being told there was nothing more that could be done.

It would be easy to get very discouraged but we need to "Fix our eyes on Jesus, the author and perfector of our faith.....so that you will not grow weary and lose heart."
Hebrews 12:2-3

Friday, September 22, 2006 7:24 PM CDT

When we were in Connecticut for Cameron's service, Ed went and visited at the main office for his company, The Shaw Group, which is in Stoughton, MA. He knows many of the top guys in that office and they were so happy to see him. They said they wanted him to come back and work out of their office. So we knew this would likely be happening in the near future. What we didn't know is that....get this....today Ed was told that it was his last day in Los Alamos. He is expected to start in Stoughton on October 2! How is that for crazy?

We will move to CT and Ed will commute the 1+ hours to the office for now so we can get Chad into his old school where he is familiar. Ed will also be doing a lot of traveling to nuclear sites in the northeast so Chad and I will be hanging out a lot with our friends there.

I don't know how we can get everything done in a week and drive all the way to CT by next Sunday! Ed's company will send packers and movers, but still there is so much to do.
Thankfully, we are renting our house so we don't have to worry about selling it.

My biggest regret in all of this is that Cameron is not moving back there with us. He was excited about moving back "home" and going to Waterford High School. It will be another hurdle we have to get over emotionally but it sure doesn't feel right around here without him either!!!!!

God's timing is unbelievable. We moved here only four months before Cameron's first relapse. Since then he has had HUGE medical expenses. Our insurance in CT capped off at $250,000/person. The insurance here went up to $2 million/person. At this point, Cam's expenses have totaled over $1.5 million. We would never have made it if we didn't move here but now that we don't need that insurance anymore, I guess it is time to move back. If for no other reason, that was good enough for us to move here for a few years. But in addition to that, we have made some dear friends, met lots of wonderful people and have enjoyed getting to know a little bit about this part of the country.

Whew! I'm tired already from the events of the past two weeks (or is it the past 14 months) and now this. God will have to provide the strength we need to do what we have to do.

Thursday, September 21, 2006 9:54 AM CDT

I spent an emotional day in Cameron's room yesterday, sorting through his clothes and things. It was comforting and heartbreaking at the same time.

When I was taking the pictures and things off his bulletin board, I saw that he had carefully cut out the lyrics of a song, one of his favorites, and pinned it up there. It was the only one he had there. I believe it is his testimony and would like to share it with others. It is by the group Pillar. He was so happy to get an autographed picture of their group while he was in Memphis (thanks to Jerilyn).

FIREPROOF
Here's a chance to show you how I feel
A chance for you to see it's real
To see just what I feel inside
and who it is that's by my side
I will never change my mind
Try to torch me and you'll find
You can't turn me or deter me
No matter how you try
You can't burn me

Chorus
I know where I stand and what'll happen if you try it
I am FIREPROOF
I know my heart and I just can't deny it
I am FIREPROOF
I tried to tell you but you wouldn't be quiet
I am FIREPROOF
I'll never bow down and you won't buy it
I am FIREPROOF

Now you know what I'm all about
There's no chance I'll ever doubt
The only one who can control me
I extol the Almighty
You want me to put it on the line
and give yield to you this time
See but I won't compromise and I realize
It's my time to rise

You'll never take me in the fire
You'll never take my own desire

Many wonder how we can have such assurance that we will one day see Cameron again. Cam was steadfast in his faith and we will continue and not lose hope either. We will be joined together, painless, whole and complete in the joyful presence of Almighty God.

Tuesday, September 19, 2006 12:28 AM CDT

It is a bittersweet day today. It is the first "holiday" we will be celebrating without Cameron. It is Ed's birthday. We went out to eat for the occasion on Sunday but won't do much more than that. We just aren't quite in the mood for celebrating yet.

I have had two days at home quietly reflecting, praying, remembering, crying, laughing, holding Cameron dear to my heart, and just getting caught up on things after being away for a year. It has been good. Ed had to get back into work yesterday. I pray he will have the strength he needs to do his job and do it well. Chad seems to be glad to be back at school. Derek is having to catch up on the classes he missed but seems to be doing ok, too.

Some of the Christian Songs I hear on the radio have taken on new meaning since we now know that Cam is in heaven. The one I heard today that struck me was by Mercy Me,

"I Can Only Imagine"

I can only imagine
What it will be like
When I walk
By your side

I can only imagine
What my eyes will see
When your face
Is before me
I can only imagine

Surrounded by Your glory, what will my heart feel
Will I dance for you Jesus, or in awe of you be still
Will I stand in your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine.

I can only imagine
When that day comes
And I find myself
Standing in the Son

I can only imagine
When all I will do
Is forever
Forever worship you
I can only imagine

Cameron can do more than imagine now. He is truly there in the Almighty God's presence! I may be wrong, but I think Cameron is dancing!

Thanks for continuing to keep us in your prayers.

Saturday, September 16, 2006 8:32 PM CDT

Ed, Chad and I got home to Santa Fe around 5:00 this evening. It was a pretty good trip. Chad was well behaved with only a slight hiccup at the security gate in Laguardia. It is so much fun to watch him during the take-offs and landings. His face is just filled with delight! Cameron always enjoyed watching Chad's reaction during those times.

It was much harder to come home this time even than when we were here for a few days last week. This time it seems so much more final, that Cameron really isn't coming home. The busy things we had to take care of before are now finished so we don't have that distraction. It has hit Ed and me really hard. I can't put it into words. There is just a huge hole in our hearts. Dear God, we miss him soo much!

Wednesday, September 13, 2006 8:31 PM CDT

We have had some quality time with dear friends, spent some time at the beach, and rested. We spent some time at the gravesite. Chad visited his old school today, Waterford High School, and was greeted with a lot of love and excitement. He remembered everyone and knew right where his old classroom was. It has been 3 years since he was there.

Derek had to leave this morning. It has left a hole, too. It was so hard to see him go but he has to get on with his young life. Now, it is Chad, Ed and me....

Monday, September 11, 2006 10:40 AM CDT

We have made a decision to stay in Connecticut for another week. We need the break before returning to the grind and we are here with very dear friends who are taking good care of us. Derek has extended his stay for 2 more days, too. It will be so hard to say goodbye to him for the semester.

On Wednesday night, we had the memorial service for Cameron at the Rock in Espanola. It was a beautiful service with the New Mexico flavor. Pastor Mike sang some beautiful songs in English and Spanish and provided encouraging words about Cameron's life of faith and scriptures about our responsibility to serve God like Cameron did to ensure we will spend eternity in heaven. Beautiful eulogies were given by Pastor Tom Kearns, our friend, Ercilia and my brother, Larry. The women of the church served an unbelievable spread of food following the service. Many of our family traveled from Missouri (Grandma and Papa DeVries, Sam, Patti, Nick, Jerilyn Osborn, Rachel Wells) Colorado (Larry, Kathy, JB DeVries, Aunt Esther Luckenbach, Louise Becket and David Luckenbach) and Tulsa (David DeVries) to be with us. About 300 people gathered for this service.

We slept a few hours and then were on our way to Albuquerque to board the plane for Laguardia. Chad passed through security without incident and was a champ on the first leg of the journey to Dallas. He didn't do so well getting on the second plane. He made a scene and Ed and I had to use all our energies to calm him. The rest of the flight was fine, we got our luggage, rental car and got to the hotel in Mystic around 12:30. Georgianna and Ray were there to meet us. THANK you to Larry's friend, Larry, who gave us 2 frequent flier tickets!!!

We spent the next day making more arrangements, seeing more friends, and Derek arrived, thanks to Larry's frequent flier ticket.

Saturday started with an hour of visitation/viewing in the Fireplace Room at Seaport Community Church for close friends and family. We finally decided it would be best for Chad to see Cameron. He appeared to be surprised but not bothered by seeing him in the coffin. He turned and grabbed me for reassurance that everything was ok.

We were so glad that Ed's parents, Hugo and Laila Dalene
were able to come from Schroon Lake, NY. It has become increasingly difficult for them to travel due to medical issues, but they managed to come. Thanks, Matt, for driving them. Other family came from Arkansas (Rick, Cindy, Matt and Megan DeVries), Missouri (Kenton and Teresa DeVries), Long Island (Frank, Gwen, Katherine Dalene, Stan, Joanne, Megan, Rickie Dalene, Roy, Lori, Tim Dalene), Vermont, (Amy, Jessica Dalene), New Jersey (Arnold, Elinor, Matthew Dalene). We are blessed to have so many cherished friends and family. About 300 were there.

The Celebration of Cameron's Life Service was beautiful. There were two slide shows of Cameron's life and eulogies were given by Andra Ingalls, Carbet Meyers, Arnold Dalene, Susanne and Daniel Pfisterer, Georgianna Shulte and James Levesque. Each gave a different perspective on our remarkable son's life. Chad was so well behaved through the entire service.

The internment was at the Jordan Cemetary in Waterford, CT. Again, a large group of friends and family gathered as we said our final goodbye.

A beautiful meal was catered back at the church. Thanks to Frank and Roy's families.

That is just a brief summary of the past weekend. Now we have to figure out how to go forward without Cam's physical presence with us. Our memories of him will never leave us and will bring us comfort.

Thanks for your continued support. At the request of many, I will continue to update occasionally to let you know how we are doing.

Sunday, September 10, 2006 2:57 PM CDT

I just wanted to stop by to let you know that we are ok. We have had two beautiful memorial services, or we prefer to refer to the services as "Celebration of Cameron's life" services. They were difficult and wonderful at the same time. I have been so busy visiting with family and friends. We fly home tomorrow and Derek will return to school tomorrow, as well. Then I will take some time to reflect on the past week.

We will be needing some extra prayers to get us through the next weeks, getting used to living life at home without our precious son. We miss him so very much.

Thanks and love to all of you.

Monday, September 4, 2006 8:38 PM CDT

Chad and I arrived home around 6:00 and were greeted by Kimberley and two very excited dogs. Kimberley also had dinner cooked for us and help us get settled in a little. Now we are alone and ready to crash. It has been another exhausting. Ed will be driving home later after staying to take care of a few more details.

The services will be as follows:
Wednesday, 5:00 - 6:30 for the visitation/viewing
7:00 the memorial service
at the Rock Christian Fellowship
919 Riverside Dr.
Espanola, NM 87532
(505-753-2094
Meal will be provided after the service.

Saturday, 11:00 the Memorial Service followed by the burial
Seaport Community Church
100 Daboll Rd.
Groton, CT 06340
(860)448-6224

Please keep Derek in your prayers. He is having a rough time and then had a nightmare today. When he flew back to Kansas City and went to get his car to drive back to Springfield, his car key wouldn't turn in the ignition. He waited almost 2 hours for the service truck and they couldn't fix it. Finally, he was able to get a rental car to drive home tonight, do what he needs to do tomorrow to get the new semester underway having missed the first 2 days and a delay in the processing of his student loan.

Thanks to Pastor Brad Whipple, David Giles, Rusty Miller and Shane Leroux for flying out from Connecticut to be with us last night and today, for encouraging us with their incredible faith and prayer.

Thanks to Larry for working tirelessly on helping many of us with travel arrangements. He is a pretty incredible travel agent. Thanks to all the others too who have helped make things come together. I better not name more names or I will get in trouble if I forget someone. That would likely happen since my brain is pretty numb right now.

Pray for Ed to get home safely tonight. I am headed for bed soon so I can face the challenges that face us for tomorrow. My cell phone battery has died and I don't have the charger right now so if you need to reach me tonight, call home. 505-424-4431

Update for Connecticut Services on Saturday September 9, 2006.

Flowers Connecticut Area

E. Johnson�s Florist
New London (860) 442-9478

Hoelck's Florist
Boston Post Rd. Waterford, CT 06385
860-443-7673 Michael Hoelck

Lodging
Remember this is a tourist area and you need to make reservations ASAP, they book up by Thursday for the weekend.

AmeriSuites in Mystic (860) 536-9997 $200 per night.
The Hampton Inn $169 has 9 rooms available right now, need to reserve them ASAP. Their number is (860) 405-1585.
The Sojourner Inn 860 445-1986 $79 Friday night and $109 for Saturday if they stay two nights, must say they are asking for Seaport Rate.

Check out Expedia.com where you can book Super8 for $75 on-line price. In Mystic: Comfort Inn $139, Best Western $132, Econo Lodge $100-you can do these on-line

Seaport Community Church
100 Daboll Road
Groton, CT 06340
(860) 448-6224
www.seaportcommunitychurch.org

DIRECTIONS TO SEAPORT...

Seaport Community Church
100 Daboll Road
Groton, CT 06340
Phone (860) 448-6224

Traveling South on I-95:

Take Exit 88 � CT-117/Downtown Groton.
Turn right onto Route 117 (North Road) 1.3 miles.
Turn left at intersection of Route 184 (Gold Star Highway) .02 miles.
Turn right onto Daboll Road.
The church is on your right.

Traveling North on I-95:

Take left Exit 86 towards Route 184 (Gold Star Highway) 2.4 miles.
Turn left on Daboll Road.
The church is on your left.
From US Submarine Base, Groton, Main Gate:

Turn left on Crystal Lake Road. (.23 miles)
Turn right on Route 12. (.44 miles)
Turn left at light onto Gungywamp Road. (2.04 miles)
Turn left onto Route 184/Gold Star Highway. (.68 miles)
Turn sharp left onto Daboll Road.
Turn left into parking lot at Seaport Community Church.
Approximately 3.5 miles or 8 to 10 minutes from the Base.

Sunday, September 3, 2006 7:44 PM CDT

We are making plans for our family and friends to say goodbye to Cameron. Right now, this is what we are thinking.

There will be a visitation around 5:00pm on Wednesday evening at the Rock Christian Fellowship in Espanola, NM followed by a memorial service around 7:00.

Then Cameron will be flown to Connecticut, along with the rest of the family, where we will have a service and burial possibly on Saturday. That part still has to be worked out.

Thank you for your prayers, support, gifts, calls. Please continue to pray for us in the difficult days ahead. We miss Cameron SOOOOO much.

Sunday, September 3, 2006 2:44 AM CDT

Our dear sweet Cameron went to be with the Lord around 10:20 tonight.

Saturday, September 2, 2006 8:51 PM CDT

Cam's temperature has come down to 38.9 or 102.2. We had lowered the temperature in the room and put cool cloths on him. The pulse has gone down, too, along with the temp.

He has stopped producing urine after a lot of output throughout the day. I don't know what that means except that it appears the kidneys are shutting down.

God, it is time for that miracle! It appears we are running out of time in the earthly sense.

Saturday, September 2, 2006 4:12 PM CDT

I just took Cam's temperature. It is an astonishing 106!!! His breathing is about the same but his pulse is very high at 151. The pulse rate usually goes up when the temperature is high. He cried a little indicating he was uncomfortable when Grant, the nurse, adjusted his position in the bed. Other than that, there has been no real response from him today.

Not much else to report right now. Just keep praying... where there is breath, there is hope in Jesus' name.

Saturday, September 2, 2006 9:45 AM CDT

The night was pretty uneventful. Cam's fever did, however, spike to 40.4 C. I think that is around 104.6F. It continues to be high but is more around 102.5. We just keep putting cool cloths on his head to try to make him comfortable.

He acknowledged me this morning briefly. Breathing is about the same as it was last night.

Sleeping in shifts, we all got some quality sleep. We are trying to keep up our strength to keep fighting with Cameron.

We keep trusting God to see what He is going to do...."He IS ABLE to do exceedingly above all that we can ask or think."

"...claiming things that are not as though they are."

Friday, September 1, 2006 10:45 PM CDT

9:45
Cam's breathing has become more labored so we are obviously concerned about that. He seems to continue to be comfortable. We're thankful that he doesn't seem to be suffering or in pain.

We were blessed with so many visitors today. We were surprised that Ed's brother, Stan and his son, Richie came from Long Island. I was also so surprised that our pastor's wife, Gloria Naranjo from Espanola NM and her sister, Jean came. They had a 6-8 hour drive. We were blessed by their prayers, encouragement and Jean treated me to a wonderful foot and hand massage.

Ed's Aunt Esther and cousin, David, who both live in this area came. Cindy, Ryan and Gary came again and of course Grandma and Papa, Larry, Kathy and J.B. continue to give us their loving, tender support.

Friday, September 1, 2006 9:59 AM CDT

It was a quiet, peaceful night for all of us. Ed and Chad were at Brent's Place. Derek stayed in the room with Cam most of the night while I slept across the hall in a parent room. Cam woke up briefly a few times but not for long.

Medically, his platelets were down to 6,000 today. He is getting a unit now. Hemoglobin is in the 8's, WBC is 1.5, blasts are at 78kidney and liver functions are almost identical to yesterday. He had a high fever last night, 104. It is a little lower today but we are trying to bring it down with cool cloths. He won't take anything orally and I don't think they have IV ibuprofen or acetaminephin.

We are continuing to trust that God can raise our boy up! He has touched so many people from near and far, people who know him and many who don't. He is only 14 years old but he has reached thousands. Imagine the impact he can have being healed from this place! "God, please hear our cries and we give You all the honor and glory because You alone are worthy. You are sovereign and know what is best for Cam. We trust that YOUR WILL will be done because he is Your child, committed to You from before he was born."

Thursday, August 31, 2006 10:39 PM CDT

Not much has happened today. Cameron is about the same. He has been restful and sleeping most of the day. There have been very few changes in his treatment, too. His WBC was down again to 1.3. I don't know how to explain that since usually leukemia patients have very high WBC. HGB is around 9.0 and platelets were at 21,000. No transfusions were given today. Liver enzyme functions... one was high and two were normal. Kidney enzymes were high, again indicating his kidney's aren't working properly.

Cam had a lot of loving support around him all day again. We brought Chad up to see him and Derek was here most of the day. Arnold had to go home to NJ. He was so helpful when he was here. Derek will stay at the apartment with Chad tonight.

We are overwhelmed with the support of prayer groups around the country and individuals who are continually lifting him up. We still believe God could do a mighty miracle and raise this boy up. What a testimony of God's power that would be!!! We continue to put our trust in Him who knows all things that we can't begin to understand.

With God, ALL THINGS ARE POSSIBLE!!!

Thursday, August 31, 2006 9:04 AM CDT

Cam was quite restful and comfortable most of the day. He didn't have fevers. Derek and my parents flew in about the same time so Larry picked them up. They arrived at the hospital around 10:00pm. He reached for Derek and said his name so he was obviously very happy he was here. However, about that time he began to get quite agitated, cried a lot and appeared to be in a lot of pain. I don't know if there was too much excitement or what set it off. Larry, Kathy, Grandma and papa and Derek left. Ed and I were the only ones here but Cam kept on being very uncomfortable for the next several hours. We kept increasing his morphine but it didn't seem to be helping. Finally, around 4:00am, he was given some ativan. That seemed to do the trick and he settled down immediately. He slept after that and is sleeping now. That was very hard for both of us to see. He kept calling for Dad or Mom, wanting us to help him.

Arnold stayed at the apartment with Chad all night. I think it went ok. We are so grateful that Arnold has been here but he has to fly home this morning.

Medically, Cam's liver function enzymes came back in the normal range yesterday. That was unexpected. However, the bilirubin was elevated some and his kidney function was up high indicating they aren't working well.

He got red cells and platelets. The extra volume of fluids in his veins helped his blood pressure to go up some. However, the extra fluids were building up and he wasn't getting rid of them. It can be dangerous for the lungs so they had to put a catheter in. That helped a lot and I'm sure it was more comfortable for Cam.

We are so thankful for so many people who are praying and interceding for Cam. We got a call at 3:00am from our church in Connecticut. There was a group of men gathered there praying for Cam and with Cam. I know there have been many others who have gathered for that reason, too.

More later.

Wednesday, August 30, 2006 9:11 AM CDT

It was a rough night. I had taken Chad over to the apartment and Ed and Arnold stayed with Cameron. Around 1:30am Ed called me and said I needed to come over. Cam's blood pressure dropped really low, 78/25 and his fever was near 104. It seemed that he wouldn't last through the night but he did. His BP now is 96/30 and fever is still over 102. He sleeps soundly but opens his eyes when we talk to him and he seems to understand what we are saying and has tried to talk. It is hard to understand what he is saying because it is so weak.

We are going to take a moment at a time and keep waiting to see what God is going to do. There is still breath so there is still hope. We are still not giving up even though it looks very bad.

More later

Tuesday, August 29, 2006 9:51 PM CDT

Cam has been pretty comfortable today partly due to the morphine pump he is on. He's sleeping a lot still. He's still running fevers almost constantly and is still getting the antibiotics. He is just worn out.

Ed and I had a talk with Dr. Gore. It was difficult but we discussed important issues and were in agreement on our decisions.

We have been blessed with a number of visitors today. Larry and Kathy, Ed's brother, Arnold, my cousin Cindy and her husband, Gary, my Uncle Dal and Aunt Judy and of course Chad finally got to see Cameron.

When Judy was getting ready to leave, she leaned over to give Cam a little hug, got her foot caught on a wire, tripped, fell and as she reached to catch herself, she fell on her wrist and BROKE it! We all felt so bad for her. The staff here quickly came to help her. The doctor looked at it and stabilized it, they got ice and Tylenol and walked her to the car in a wheelchair. Dal took her to their hospital closer to home. I haven't heard how that went. Too much excitement.

Thanks for not giving up....keep storming heaven for our boy.

Tuesday, August 29, 2006 10:55 AM CDT

Cam had a restful night interrupted by needing to use the restroom frequently. Ed and Chad arrived here around 11:30 and then Ed slept here at the hospital and I went to Brent's Place with Chad. We slept pretty well considering.

Cam's WBC today was 9.0----weird. It was 22. yesterday. His platelets were down to 7,000 so he is getting a unit of them right now. His HGB is 8.0. I don't think they are planning on giving him any red cells right now. They probably will later. His liver and spleen are very enlarged, full of leukemia cells. He gets confused pretty often likely from the morphine but most of the time when he is awake he is aware of what's going on around here. He tells me often how much he loves me, throws me air kisses and wants to know if everyone here is doing ok. He is so thoughtful, even now.

Ed's brother, Arnold flew in this morning from New Jersey. My parents are driving here from Springfield. They will be here tomorrow. We are being surrounded by people who love Cam and are supporting all of us. All the while, we are agreeing together that God is still able to do the miraculous and raise Cameron up from this weakened condition.

Thanks to all of you who have written in the guestbook. It is overwhelming to realize how many people from far and near are praying for all of us. Thanks for your calls, too. There are times when I am busy with Cam or talking to a doctor and I let the call go to voice mail. Please know I listen to your messages and appreciate the call even if I don't talk to you directly!!!

Monday, August 28, 2006 8:42 AM CDT

Things have gotten really bad during the night. The cultures that were drawn last night all came back positive for gram positive cocci. His fever was as high as 104. He is completely weak. He can't even lift his legs. He wakes up when we talk to him, takes a few sips of water and goes right back to sleep.

The new medicine is supposed to start today but I don't know if they will be able to start with active infection in his blood. We'll see what Dr. Gore says. I hope she comes in soon.

I am so scared....things do not look good. I'll write more soon.

12:15
Dr. Gore was in earlier and told us what we dreaded to hear the most. There is really nothing more that can be done for Cam. He is too weak to tolerate any more treatment. His stubborn leukemia seems to have been too much to overcome. When Dr. Gore told Cameron that is seems that the leukemia has won this fight, he said emphatically, "No it hasn't."
All we can do now is to keep him as comfortable as possible and wait. Ed and Chad are on their way here. I haven't talked to Derek yet.

Larry and Kathy have been here with me for much of the morning but have left now so I can try to get some sleep. I'm tired to the bone.

10:00pm
Cam slept from 9:00am until 4:15! He was in a deep restful sleep. Then he was awake, dozing off and on until around 9:30pm. He has continued to run fevers ranging from 100 to 103 all day. He is getting 3 different antibiotics.

Larry, Kathy and their son, JB spent several hours with us. Cam seemed to enjoy watching Flubber.

Ed and Chad are on their way. We were given an apartment at Brent's Place just a couple of blocks from the hospital where I will stay with Chad tonight while Ed stays here in the hospital with Cam.

Where there is breath there is still hope. We serve a God who is able to shock everyone, perform a miracle and bring Cam to complete health in spite of the dire circumstances. We still pray for that to happen but have to face that it might be possible that He will choose to heal Cam by bringing him into heaven to be with Him.

Thanks for continuing to pray along with us for our wonderful boy.

Sunday, August 27, 2006 8:15 PM CDT

It has been another difficult day. The morning wasn't too bad until he got a nose bleed. I called the doctor thinking he would need to go to the hospital for platelets. Sure enough, she said to come in. His fevers have been high ranging from 101 to 103.3 so it was decided he should be admitted. His White Blood Count also jumped from 6.6 to 22.!!! That big jump is NOT GOOD! His leukemia is gaining ground and we have to get these antibodies in to start the fight against them ASAP!!!

He is soooo weak he can hardly hold any weight on his legs. The doctor said it can be caused by the leukemia or the fevers. He is also sort of confused. This could be caused by the fevers, the pain meds, the leukemia or low oxygen. His SATS were dipping down into the 70's. With oxygen support, he gets back up to the upper 90's.

He was pretty upset at being admitted but I feel better having him here. He is just SO sick....too sick and weak for me to handle him at home at this point so I'm relieved to be in the hospital.

I am feeling a little better. My side pain is better. The other joints are still bothering me more than usual. Thanks for all of your prayers for both of us.
Keep storming heaven for our sweet boy.

Saturday, August 26, 2006 2:03 PM CDT

Cam is having a rough day. He had a 103.3 fever during the night. I gave him meds and a cool cloth on his forehead to bring it down which worked. Then he slept good for several hours. This morning, he doesn't have a fever but he is still VERY tired and VERY weak and has VERY much pain whenever he tries to move and is having nausea. Sounds pretty miserable, huh. Well he is.

I am just doing whatever I can to keep him comfortable, cuddling and praying as I sit with him. We just have to get him through the weekend and get on with treatment.

I could use some extra prayers. I am in a lot of pain right now. I'm sure a lot of it is from the stress, some of it from the trip and extra "stuff" that requires. I have pulled a muscle or something on my left side that is causing lots of discomfort. The knee and shoulder pain I have at varying degrees all the time is really flared up.
I need to stay physically strong so I can handle Cameron's needs.

I am thankful to be here with Larry and Kathy. They are such a wonderful support to us. I am also thankful for one more day to spend with Cameron. Every day is precious.

Friday, August 25, 2006 7:29 PM CDT

We spent the day at the Oncology Clinic at Children's Hospital. We went over the plan for Cameron's treatment, signed all the consent forms, he got labs drawn and got a unit of platelets. Of course, he also got his ambisome.

During the night, he ran a fever of 103. We gave him Tylenol and by morning he didn't have a fever. Later in the day, he had another one so they did cultures just to be sure. Dr. Gore feels pretty confident that it is more of the same...the stinky leukemia causing these fevers but it is best to check it out. He also was VERY weak during the night and again today. I don't know if that is because the trip took a lot out of him or what. He has been pretty tired, dozing off and on ALL day.

The plan is that he doesn't have to go to the clinic at all over the weekend unless something comes up. He starts the treatment on Monday. He couldn't get started today because the final forms approving Cam for this study were not complete yet. He will get started on Monday, though.

One concern, there always has to be at least one, is that one of his liver enzymes is a little higher than is allowed to start the study. The test will be run again on Monday before the Combotox can be given. PRAY, PRAY, PRAY that that number comes down.

My heart broke as I learned today that one of our friends from St. Jude lost his life today. Nick was a 15 year old young man with a wonderful family and seemingly a wonderful future. It is a terrible loss to this family. Please pray for them. Their web page is www.caringbridge.org/visit/nickavery

Hoping and praying for an uneventful weekend of rest and some good times together.

Thanks for checking in. We love you.

Thursday, August 24, 2006 5:24 PM CDT

We arrived in Denver about an hour ago and are safely resting at Larry and Kathleen's house. The trip was as smooth as you could expect, no problems with security, wheelchair assistance was right there for us but it all tired Cam out anyway. He will rest for the rest of the night and hopefully be re-energized a little for the clinic visit tomorrow morning.

I am so thankful for this home that we can come to while we are in Denver.

Please pray for Cam to gain some strength and for this treatment to get started quickly. The plan is for it to start on Monday. I'm going to see if it is possible to start it tomorrow...why waste 3 more days?

Thanks for your prayers and good wishes for safe travel. Thank God we are here.

Wednesday, August 23, 2006 7:18 PM CDT

It was a routine day at the clinic. Cam got ambisome and 2 units of platelets. His pain is about the same. The medicines he takes for the pain make him sleepy but that's ok. It's better than hurting.

We are all set to fly out to Denver tomorrow....finally. Cam will go to the clinic just to get some morphine to help him be more comfortable for the trip and then we will head for the airport. We have an appointment at 8:45 on Friday morning at their clinic. We'll learn more at that time about what to expect over the next few weeks.

Cam is especially anxious to see Larry and his family and of course, Sydney, their big sweet, beautiful dog. We had a great visit with the therapy dogs yesterday. Kicker, the Golden Retriever, kept coming up to Cam, nudging him and rubbing against him. He really liked that.

Thank you for checking in. And thanks for the tips on homeschooling programs. I'm checking them out.

Tuesday, August 22, 2006 2:17 PM CDT

We have some good news finally! I just got a call from Dr. Hale. He received an e-mail stating that it has been approved for the ComboTox drug to be used with Posaconazole. We are finally approved to go to Denver to blast those nasty cancer cells!

Cam continues to feel ok with pain meds. He gets very weak very quickly, though. He almost collapsed on the floor of the bathroom and he called for me to come in and help him. It scared both of us. We can't afford to have a fall and some broken bones.

Cam's counts continue to be about the same. The platelets from yesterday's transfusion were at 50,000. WBC is still at 1.5 and hemoglobin is holding in the 11. range. Liver and kidney functions are good and glucose levels are stable with 30 units of insulin in his TPN. Dr. Hale said that even though the WBC is staying low, it doesn't mean the leukemia isn't multiplying. It is just not kicking out into the blood but rather is packing more into the marrow. That is likely why Cam is experiencing the pain he is.

We are waiting to hear from Dr. Gore in Denver about if she wants us to try to come tomorrow or go ahead and come on Thursday with the plane tickets we have arranged now.

Although we are putting our hope in this new medication for Cam, we know the ultimate Hope is only in God and his
plan for Cam's life.

"We wait in hope for the Lord; He is our help and our shield. In Him our hearts rejoice, for we trust in His holy name. May Your unfailing love rest upon us, O Lord, even as we put our hope in You." Psalm 33:20-22

4:00
We have had so much on our mind that I haven't given much thought about school for next year. I realize it is that time when kids are headed back to school all over the place...everyone except Cam, it seems.
I know several months ago I asked for advice about computer based homeschool programs. I have misplaced the information I got before. If anyone has some info about some good on-line or computer based curriculum for 9th grade, please let me know. In the meantime, I'm researching.....

Monday, August 21, 2006 2:43 PM CDT

Cam if feeling pretty good today. He got his medicine and 2 units of platelets. Now we are at the Grizzlies House just waiting to hear from the VIP's about the study. Oh man, the waiting is difficult.

His counts were still holding. The blast percentage is down to 67fter being 89 I don't know how that happens. The WBC is still 1.5.

I'll write as soon as I know what we are going.....

9:15
We went through the entire day and don't know anything more so Dr. Hale suggested that we needed to delay our trip until Thursday. Once again, the NWA was terrific in changing the flight without penalty.

Thank God Cam is doing ok right now or this delay would be even more difficult. We will be seeing Dr. Hale tomorrow. I hope he will know more. One discouraging thing is that he let me know today that he thinks we would run into the same difficulty with the study at NIH...two investigational drugs and their possible interactions requiring FDA approval.

We got to meet our Memphis friend tonight. She came over and brought us some Quiznos. It was nice to meet a new friend and we enjoyed our visit. (We look forward to seeing you again soon.)

Thanks for checking in. We love you all.

Sunday, August 20, 2006 7:45 PM CDT

We have been in a holding pattern again today. That is the way it is on weekends. Not much happens unless there is an emergency. Thank God there has been no emergency. Cam has come through another day holding his own. He is such a fighter!!! He continues to have significant pain in his shoulder, ankle and now in his abdomen when he takes a deep breath but the pain meds continue to help. He had a slight fever this morning but not for the rest of the day.....fevers, stay away!!

His platelets were at 21,000 today so he will get at least one unit tomorrow before our planned trip on Tuesday. Hemoglobin has stayed pretty well at 11.5 and the good thing is that his white blood count has stayed at 1.8. If the leukemia was growing rapidly, that number would jump up quickly into the teens, 20's or higher.

Our prayers are sustaining him physically, emotionally and spiritually.

We are praying for good news tomorrow about Cam being accepted into the treatment study.

Ed should be in Denver by now. He will switch vehicles and then drive all the way home to Santa Fe....around 5 hours! It sure is a good thing he likes to drive! Chad has been having a good time with the Weems. It is Walker's birthday today so Chad got to celebrate with the family. They went bowling and to a movie. Those are things Cameron should be doing with his good friend instead of his brother taking his place! Oh well, next year. HAPPY BIRTHDAY, WALKER!!

We rest tonight knowing we are in God's hands. It would be so easy to despair about how sick Cameron is, or that Ed has to drive several more hours or that we can't live together right now as a famiy. But we know none of this has caught our Lord by surprise. He is still in control.

We have some friends who are really struggling right now. If you would like, Nick, Marcus and Donovan could all use extra prayers tonight.

Saturday, August 19, 2006 7:15 PM CDT

Cam has been feeling ok with the help of pain medications and Tylenol. As soon as it wears off, he is in pain and he starts to run a temperature so we try to keep on time with the meds!

He got ambisome in the med room and rested there.

We picked Ed up at the airport. He arrived around 4:30. His plan was to grab a bite to eat with us and then begin his drive toward Denver in the van. However, can you believe it, they LOST HIS BAG!!! He has to hang out here until 9:15 when it will come in on the next plane. Then he has to drive 15 hours to Denver, pick up his Jeep and drive home to Santa Fe to pick Chad up tomorrow sometime.

Whew! It is no longer "One day at a time." It has become "One Moment at a time."

I am so thankful, however, that we have had another day together, that Cameron has felt relatively good considering all that is going on in his body. We will have another day of rest tomorrow before learning what will happen on Monday with the drug companies and doctors.

Friday, August 18, 2006 7:38 PM CDT

Part 2 update for today

What began as a stressful day became even more so. After checking out of the Grizzlies House, many people making many preparations for us to fly without complications, Cam got extra platelets and red cells so he could safely travel, having medicines all lined up, TPN prepared to be sent by Fed Ex to Denver, and the van was going to arrive at 3:30 to take us to the airport, things abruptly changed.

We still had not gotten the green light from Dr. Gore in Denver saying Cam had been accepted into the study. We got the good news that the markers on his leukemia cells are what are necessary for the study and he doesn't have the antibody against the agent. However, the posaconazole issue is still not resolved. He needs to keep taking this to prevent the fungus from returning. It would do no good to get rid of the leukemia only to have the fungus return and threaten his life. He needs both therapies!

So Dr. Hale requested that we stay here until Tuesday to give the appropriate people time to work this out. It is felt it will be worked out but it will take the extra time.
So we are not leaving until Tuesday afternoon. Northwest airlines made the change in the tickets without any problem or extra charges. Thank God for that.

Cam was discharged from the hospital and we moved back into the Grizzlies House. The schedules of medicines Cam is taking is kind of crazy, some every 4 hours, some every 6 hours and some every 8 hours. Some once a day, some twice a day, some with milk, some on an empty stomach. It takes a lot of planning to do it right.

Ed drove Chad down to Raton, NM to meet Kimberley who is going to watch Chad while Ed flies out here in the morning to drive the van back to Denver tomorrow and then to Santa Fe on Sunday. I just hope and pray all this works out so we will indeed be in Denver on Tuesday and Cam can start the treatment.

Please continue to pray for guidance, strength, healing, rest and for the right treatment to be approved.

THANKS

Friday, August 18, 2006 2:07 PM CDT

Stressful is the best word to describe this morning. We are still on pins and needles waiting to hear if Cam is accepted into the study. We STILL haven't gotten the blood test results. Dr. Gore is going to let us know as SOON as she knows.

Another complication is that Cam is still on the posaconazole which is an investigational anti-fungal drug. It is closely monitored by the FDA and may conflict with taking another investigational medication. Things are so complicated but we have many competent people working hard to try to make it all work.

We plan to leave the hospital at 3:30 but the flight doesn't leave until 6:50.

Ed and Chad drove to Denver last night. They will pick us up at the airport tonight. Chad will stay with me while Ed flies to Memphis tomorrow and drive the van to Denver. He is such a great dad and husband. He will do whatever he has to do for all of us.

PRAY
Cam gets approval for the study SOON
Cam's pain and leukemia go away
No more fevers
Chad will be cooperative while Ed is gone
No complications going through security at the airport
No problems during the flight
Anything else God puts on your heart
Praise Him for providing friend who made this flight possible.

Thursday, August 17, 2006 5:59 PM CDT

Cam has had a quiet day today. He has been taking a lot of morphine for his pain. Every time it wears off, he has such awful pain in his shoulder, jaw, foot/ankle, hands. He had to get two units of platelets and will get two units of red cells tonight. His temperature has still been running around 102.5-103. Blood cultures are still coming back negative so it must be caused by the mean leukemia.

The big event of the day has been organizing the trip out to Denver. A friend from here in Memphis that we have met only through the webpage and e-mail has offered to pay for Cam's and my flight to Denver. She has worked hard, along with Ed to set up the flight and get approval for the TPN to pass through security. We are going to fly tomorrow evening at 6:50 and arrive in Denver at 8:30. Now Ed is trying to figure out how to get out here again to drive the van back to Denver. He still has the other half of the airline ticket he used yesterday but he now has the responsibility of Chad since Derek left today. We are tossing around several possibilities and I'm sure one of them will work out.

Gotta get back to Cam's room. He is finally awake after sleeping most of the day.

Thank you to our friend. I look forward to meeting you some day when we get back to Memphis.

Keep praying....Cam especially needs a healing touch tonight!

Thursday, August 17, 2006 10:51 AM CDT

Well, it is Dad's turn to write today.
I came home at Midnight last night from Memphis throgh the Denver Airport. I waited for six hours to get the last flight out. Anyway I do not need to tell you we need your prayer support to help strenghten Juli & Cameron to get both of them to Denver. I am working on getting him on the 1:45pm flight tommorrow so we can get him into the Denver's Children's Hospital over the Weekend if we need to. Cameron is still having 102.5 fevers and the blasts in the blood is now at 78%. We have had to have him off of the normal Chemo for up to two weeks. The earliest date that we can start him on the new medicine is Tuesday August 22, 2006. We will need to keep him on pain medicine until then. I was reading Kim Clements web site last night and I want to post his lastest word which Juli and I feel is very timely for our household at this time of need.
Kim Clements Word August 6, 2006(www.kimclement.com)

"Your household is about to have an intervention of a kind that you have never experienced before. Households are being prepared just like your household is being prepared. God's already doing it.

God said, get ready for an invasion of the Spirit of God into your house for there is a huge manifestation of rain that is coming to your home. Lift up your hands and shout to the Lord!

Nothing is impossible. You say, but he's HIV positive, he'll never make it. (Cameron's Lukemia is also as bad as HIV)

God says, could you come to Me and say to Me, is it too hard for you to do Lord? Do not insult me, says the Spirit of God, with your unbelief. Listen I am waiting for faith and if somebody would understand the words that I am speaking, says the Lord, you would understand that I will not allow an obnoxious odor of unbelief to come before Me. There must be faith. And if you understand that what I am saying to you today is that you could and should walk out of these doors with a miracle in your heart and your hands that your household should never be the same again, it is not becoming for you to be still when the Spirit of God says, I will do what was impossible when you walked into this building. It is obnoxious to Me, therefore open your hands and open your hearts and receive and say, YES, YES, YES, YES, YES!!

It's too late, God has taken over!!

This is a day where what was impossible can be made possible. No problem!

I hear a sound of an abundance of miracles!" Kim Clement

So hold on with us in prayer and thanksgiving for a faithful God.

A major sign was no Lukemia in his spinal fluid and thus making him approved for the next study in Denver.
Again Pray for Strenght for Juli and traveling mercies for Juli and Cameron.

Wednesday, August 16, 2006 11:40 PM CDT

We got back to the Grizzlies House around 4:00 and Cam took a nap. When he woke up, I gave him a hug and knew immediately that he had a high fever. It was up to 102.8 so off to the medicine room we went, again.

He was admitted, had to go through the whole admission process again and he just got settled into bed around 11:15. I came back to the room to try to get a good night's sleep. I am so drained and need to regain some strength.

Ed got to Denver on a layover and learned his connecting flight was cancelled. He had to wait for two more connections on standby and couldn't get on those. Finally he got on the 10:00pm flight. Then Derek and Chad had to drive to Albuquerque to pick him up. Flying isn't always the easy way to go, either. (Ironic isn't it that he ended up in Denver!)

Thanks for praying for all of us. We sure need all the extra support and encouragement we can get.

Wednesday, August 16, 2006 3:49 PM CDT

Cam is aching really bad today, again. Now it is in his hands, ankle, shoulder and other areas. He gets some relief from the pain with the medications. We know the source is the leukemia cells pooling in these areas and will only get worse until we get the treatment to reduce the leukemia. He had an ECHO/EKG today to check out his heart functioning.

The blood test was sent to Denver so we will know some time tomorrow for sure if we are going there. We got the results from NIH. His tests show he is eligible for their study. It is good to know we have that option.

After looking at all the possibilities, we decided Ed needed to fly home, thanks to Larry's frequent flier miles, to relieve Derek of the responsibility with Chad so he can return to school on Friday. I checked into Cam and me flying to Denver. St. Jude doesn't help with that cost and it is $700 per ticket. We also heard that some patients have had some difficulty with airport security issues if they had TPN or other liquid medications so we decided it is best for us to drive. The plan is to leave on Friday afternoon, drive a few hours and go the rest of the way on Saturday. Ed and Chad will meet us somewhere to escort us part of the way, again. It is just scarey driving so far with a REALLY sick kid. I just pray God will, once again, give us a safe, uneventful trip and that we can keep Cam comfortable the whole way.

That about sums up what is happening here. The whole decision making process both for Cam's treatment and how to best get him there is incredibly exhausting but we believe God has guided us and that we have made the right decisions.

Thanks for uplifting all of us in your prayers.

Tuesday, August 15, 2006 4:50 PM CDT

We finally got some good news! The spinal fluid contained NO leukemia cells! That means he is still a potential candidate for the antigen study/treatment in Denver. Now, a blood test will be sent tomorrow to confirm that he has the two protein markers, CD22 and CD19 on his leukemia cells and that he doesn't have an antibody against the agent they will be using. Dr. Hale said it is very unlikely that he won't meet those requirements so we are planning on heading that way asap.

Cam's hands are still bothering him along with one of his ankles. We are treating the pain aggressively to keep him as comfortable as possible until we get the next treatment going. He ran a fever again today but the docs feel he is likely ok since he is still being covered by the mirapenam antibiotic every 8 hours. We just have to watch that the temperature doesn't go over 102 and that he doesn't start feeling sicker.

I have a terrible headache today. The stress of the last few days (or is that weeks or months or years) is showing itself.

Keep praying. Thanks so much.
Love to all of you....Juli

Monday, August 14, 2006 7:01 PM CDT

Cam woke up this morning with excruciating pain in both of his hands and wrists. He couldn't hardly stand the pain so when we got to the clinic, he was given some IV morphine which helped. We waited for 3 hours after getting his lab work drawn to learn that because his platelets were low, the spinal tap scheduled for 1:00 was postponed once again until tomorrow. We were all so frustrated!!!

We expected to talk to Dr. Hale or Dr. Gore all day. We didn't hear from either one. I finally called Dr. Gore. She reiterated that we have to know if the cells that were found in his spinal fluid were contaminated by blood that seeped in through the needle poke or if there are cells growing there independently. If it is the latter, he cannot participate in this preferred study. See why we were so frustrated that the spinal was postponed again? We also have to send a sample of his blood to check if it has the two essential protein markers on his leukemia cells. Everyone involved feels that he does fit that criteria. That should have been done today but I didn't hear that until 5:00 this afternoon!

She said if he does have the leukemia in the CNS that she could possibly recommend another study but it would not be one if our first choices. Does that mean we still might be going to WashingtonDC? I guess it might.

We enjoyed seeing our former neighbors from the Target House, Tricia and Emily Lester. They are here from Florida for a check-up following Emily's transplant. She is doing well. Thank God for that.

Pray that
1. Cam can finally get the LP (lumbar puncture)tomorrow
2. The pain in his hands to go away
3. The leukemia disappears...a true miracle!!!
4. Patience on our part until we know where Cam goes next
5. No new complications
6. Continued protection on Chad and Derek at home

Thanks, Kimberley, for watching Chad for a few hours today to give Derek a break. Thanks, Teresa, for sending the next book in the series we are reading. Thanks to all of you for your thoughts and prayers.

Sunday, August 13, 2006 6:56 PM CDT

Ed took Cam to the clinic so I had a little break from the routine there. I ended up going to the medicine room and hanging out with them later anyway while he was getting his ambisome.

His platelets were 22,000 and Hemoglobin was fine so he didn't need any other blood products today. He will need platelets tomorrow. We are still trying to find the right insulin levels. His glucose has been on the low side so the amount of insulin they told me to put in the TPN last night was too much. They told me to put in less tonight.

He is not feeling well today. He is very achy in several places due to the leukemia cells. As he sat up in bed last night, he tweeked another spot on his right wrist and it has been hurting really bad all day. The thumb on the left hand is still sensitive although somewhat better and now this. He feels like a "cripple". He says he can't use either hand without a lot of pain. Poor guy has had about enough of all this...but he still is trying to keep his chin up.

Thanks for checking in and thanks to all of you who have written in the guestbook. We always like to read those.

Saturday, August 12, 2006 6:08 PM CDT

Cam was released from the hospital around 3:30 just moments after Ed arrived. The source of the infection was identified so we know which antibiotic is the best for fighting that bacteria. I will be giving it to him by IV every 8 hours for a couple of days. That means one of them has to be given at 2:00 am....yuk...oh well.

He is still feeling pretty good with some complaints of pain in his feet. That is likely caused by the leukemia in his marrow. He is feeling sensitive to touch, too. I don't know what would explain that.

Derek is at home handling things there, especially Chad. We're so thankful for how helpful he has been this summer. He will be returning to school in Springfield, MO next Friday.

We will enjoy tonight and tomorrow before a big day on Monday. Monday we will find out if Cam is eligible for the study in Denver. The one thing that might exclude him is that they won't accept anyone with CNS involvement meaning any leukemia cells in the Central Nervous System. Cam does have 4% in his CNS. He will be getting a spinal with chemo on Monday so hopefully that will take care of it. Please pray that it does so he can be treated on that study. Dr. Hale is still checking to see if Cam meets the eligibility requirements for the NIH study in case we need to go that direction. It is very hard to plan very far ahead. One day at a time.

Pray for
- a total miracle of healing
- acceptance into the right study for Cam (we would like Denver but God knows where we NEED to be)
- no further complication
- Derek and Chad to be all right at home alone

Thanks for checking in. God Bless you all.

Friday, August 11, 2006 5:45 PM CDT

Cam was scheduled to have a spinal tap with chemo today but they cancelled it because of the infection that is present in his blood. It was rescheduled for MOnday. His
HGB and platelets were low so he got transfusions of both. After he got his platelets, he broke out in big welts of hives. It started off just on his leg and it was very quickly on both legs, arms, head, face and back. He had already had benadryl before the transfusion in case of a reaction but he had the reaction anyway. So he had to have more benadryl and hydrocortizone. Because of those doses of benadryl, he has been drowsy all day, sleeping off and on. Other than that, he has felt pretty good.

I spoke to the research nurse at NIH about their study. Then Dr. Hale and I spoke to Dr. Gore about 4 possible studies that Cam would benefit from and be eligible for in Denver. One of those studies in particular seems to be the most desirable of all the choices. An added benefit is that we would be going back to a hospital and a team of doctors we are already familiar with. Plus, we would be close to our family again. :) There are a few loose ends to check out before the final decision is made but we are leaning that way. Our hope is that Cam's blasts would be greatly reduced by these antibody therapies and even remission achieved. Then we could come back to St. Jude for the NK cell treatment or transplant.

Ed had an interesting morning. He had to go to court to be officially named Chad's legal guardian. He is almost 20 years old and we have been trying to make this happen for 2 years! It finally is done today. The weird thing is that only one parent is named as a legal guardian and so I am NOT! That kind of freaks me out since when we are home, I am the one who always takes care of doctor appointments, school meetings, etc. We will have to cross that bridge when we come to it, I guess. At least Ed can legally sign for him now. Ed said when the hearing was finished and the judge hit his gavel on the bench, Chad started clapping and clapping. Then he waved bye to the judge. He is such a character!!!

Ed left Santa Fe and is on his way here with our newly fixed van. We had replaced the transmission about a year ago and it was faulty so with the warranty, we got a new one free.

God is good and is faithful. We have made it through another day by His grace. Tomorrow we will face whatever challenges it presents.

Thursday, August 10, 2006 2:29 PM CDT

As soon as we arrived at the clinic this morning, we were told the staff had been looking for us last night because they needed to admit Cam. His cultures from two days ago turned positive and they wanted to start treatment as soon as possible. I guess when they called our room last night, I was on the dial-up connection on the computer so they couldn't reach us. They called this morning but I was in the shower.

Cam was distraught about being admitted but after a firm pep talk, he is doing better and trying to take it in stride a little more.

I have talked to one of the research nurses from NIH. I'm waiting to hear what Dr. Hale has learned about other opportunities.

I'll write more later.

A verse that has replayed in my mind on continuous replay is
"Lean not on your own understanding. In all your ways acknowledge him and he will direct your paths." We are trying to do that.

Part 2 7:00pm
What a remarkable transformation in Cameron's attitude since he was first admitted and we had our pep talk. He decided in his heart that he was going to make the best of it. He has been perky, joking, walking around the room, he ate some real supper from the hospital menu!!! and was played a game of Sorry. Now that is soooo much better than sulking and feeling sorry for himself. I know he is entitled to some of that but he can't stay there long or it will destroy both of us.

He continues to feel pretty good. He's had no more fevers, just waiting to see exactly what the positive cultures were growing.

I haven't heard any more from Dr. Hale yet. I'm sure he is still doing research for us before he makes a recommendation.

For now, we are doing fine. He even told me I should plan on sleeping at the Grizzlies house (just a block away) if I stay here late and come back early. :)

Wednesday, August 9, 2006 5:17 PM CDT

I just typed a LONG (20 minute) update and it just vanished off the screen! How frustrating is that?!

I will write more later when we get back to the Grizzlies House. The Grizzlies House is a hotel here on the grounds of St. Jude Hospital that houses people who are here for a short visit or waiting for longer term placement ie: the Target House.

Right now Cam is in the Med Room receiving red cells and platelets, ambisome and two IV antibiotics. His marrow isn't producing any good cells now so he will need frequent infusions.

He is feeling really good today! His spirits are up, he is talkative and positive. Thanks for praying for that.

I had a meeting with Dr. Hale in which we discussed some possible options. I will write more about those when I have a little more time.

Gotta get back to my handsome warrior.

Part 2 8:40

The discussions we had with Dr. Hale included possibilities at NIH (National Institute of Health) in WAshington, DC with Dr. Alan Wayne. I have talked to him before. We will send a blood sample to them to screen to see if Cam is eligible for their study. I will talk to Dr. Wayne tomorrow and ask a trillion questions I have going through my head.

Dr. Hale is going to pursue what other studies might be out there that can get the blasts under control. I suggested he call the doctors in Denver we had worked with before and he will do that. They just might have another appropriate study to reduce the blasts to bridge the gap between now and when he could take part in the NK cell study here at St. Jude.

The bottom line is that we just don't know what the best things to do it yet. BUT we know THE ONE who does know the right way to go. We are asking for Him to clearly guide us.

Thanks for checking in. I just want to add one verse that comes to mind today.

Philippians 4:6-7 Do not be anxious about anything but in everything, by prayer and petition, with thanksgiving, present your requests to God and the peace of God, which transcends all understanding, will guard your hearts and minds through Christ Jesus.

Tuesday, August 8, 2006 8:21 PM CDT

The news we got today was VERY BAD! The bone marrow results showed that 100 percent of the cells in the bone marrow are leukemia cells!!! There were a lot of cells there, too. The marrow was not sparce like we thought it might show but it wasn't totally packed, either.

Cam had his ambisome and we got back to the Grizzlies' House around 4:30 when Cam realized he was really warm. He had a temp of 103 degrees so back to the Medicine Room we went. He got two IV antibiotics and was allowed to come back to the room with me, again, rather than being admitted since he doesn't have any other symptoms that would indicate he has an infection. The fever is most likely caused by the leukemia. He is feeling pretty bad, aching all over and weak.

My heart is sick but I tenaciously holding on to the hope that we have in the Lord. I don't understand why Cameron can't get a break, why he has to suffer so much but I still believe he is going to make it. Ed and I are soooo thankful that we got back to St. Jude when we did because they keep coming up with treatment options and have not given up yet, either. I want to hear what Dr. Hale has to say tomorrow.

Please continue to pray for
- Us to find the right treatment
- Cam to feel better and for remission, one way or another
- Cam to have peace of mind
- Me to have the endurance I need to keep going when I face these ordeals one after another.(I feel like I could sleep for a week, right now.)
- The rest of the family who are also heartbroken with this latest news.

Thanks for your faithfulness.

Tuesday, August 8, 2006 1:03 PM CDT

It has been busy so far today here at the clinic.

Last night, when Cam was getting platelets, he ran a slight fever of 38.1. They consider anything 38 and above as a fever. They made plans to admit him into the hospital but Cam and I protested saying he had been running low fevers almost every evening that went away without Tylenol. Cultures had been run 3-4 times in Albuquerque and showed nothing. They decided we could go sleep at The Grizzlies' House....yeah. Cam and I slept very well.

He, however is still very tired today. It might be left over from yesterday's activity.

Glucose has been kind of low today. The pharmacist is working on coming up with the right formula for the TPN and insulin. It is a tricky balance.

He had some x-rays of the abdomen...not really sure why. He complained a little of some pain but not a lot.

He is in recovery now from his bone marrow biopsy and spinal tap. Dr. Hale said if the bone marrow results show that there are very few cells in the marrow, we will continue to treat him here to try to find what will work to get him into remission or the study. If the marrow is full of leukemia, he wants to make a referral to Dr. Alan Wayne at the National Institute of Health in Washington DC. They have a study that uses antibodies on certain proteins of leukemia cells to attack them and kill them as opposed to chemo therapy. Dr. Hale is sending some samples of his bone marrow and blood for them to run preliminary tests to see if his cells carry that particular protein.

Cam will get ambisome in the medicine room and then we will be free for the rest of the day.

It has been good to run into some friends, again. A couple of them have left to go home and happened to come back today for their follow-up appointments. Some are still here in the midst of the battles for their childrens' lives.
One in particular that is really struggling is Marcus. Please keep him in your prayers and his mother, Michelle.

I have to go see if my sweetie is waking up. I'll write more when I know more.

God is still in control. We know Cam is in His hands...the Great Physician, Omnipotent, Omniscient, Omnipresent God. What a reassurance that give us.

Monday, August 7, 2006 9:10 PM CDT

Our trip to Memphis was pretty smooth but it was an exhausting day for Cam. We left home at 5:00am and arrived at the Grizzlies' House at 4:30. Cam took an hour long nap and then we had to be at the clinic for labs around 6:00. That took forever for some reason. Finally around 8:00, we were told that his platelets were at 10,000 so he would need platelets tonight. That's ok, we expected that he would need them before his bone marrow biopsy tomorrow. He got settled into a bed in the Medicine Room. However, I just got word that the blood bank has some delay and the platelets won't be ready for another hour! Yikes! that makes for a long day. We won't be back to the room until 11:00 at the earliest.

He has been a trooper but truly is exhausted tonight. I'm praying he gets a real restful, beneficial sleep tonight before another big day tomorrow.

I'm feeling fine but tired. I have to do all the carrying, loading, running to check things out and being the strong one for Cam to lean on. I'm used to Ed doing a lot of that when we all travel together. We know we need to be here but it didn't take long to remember how draining this place can be, too, with all the waiting.

Everything will look a little brighter tomorrow, I believe, after getting a good night's rest. Thanks for checking in.

Sunday, August 6, 2006 3:16 PM CDT

Cam has been subdued today, weak and inactive but trying to stay upbeat. His friend, WAlker is spending some time wtih him which is good medicine.

We had a minor glitch yesterday. Cam's blood sugar soared into the high 300's so I had to contact the doctor to see how much extra insulin he should have. It ended up being manageable from here, no need for a visit to the ER, thank God.

Our friend, Ercilia, came and spent the evening with us, too yesterday.

Thank you to those who have offered help with Ed's ticket home. We'll let you know how things go.

Gotta go pack. Our flight leaves at 7:30 in the morning from ABQ so we have to leave here by 5:00.

Thanks for checking in.

Saturday, August 5, 2006 9:46 AM CDT

Dr. Hale and Dr. Frost decided it was time for us to go back to St. Jude so we will be flying out on Monday morning on a commercial flight that was planned for us by the travel office at St. Jude. Ed said it was too short notice to connect with Angel Flights this time. Ed will drive the van out some time and fly back so we will have the van there.

We enjoyed the visit from the Weems. We played some Pictionary and just hung out. They helped me get some of our bags to the car to get ready to leave. While I was in the parking lot, Cam's temperature was taken and it was 101.8....a glictch in our plans to go home? The doctor decided to go ahead and give him the 2nd unit of platelets and give him an IV antibiotic before we left.

We finally got home around 9:00. Cam was exhausted and headed right for bed. Chad wanted my attention but I had the nighttime routine to go through for Cam. That routine looks something like this.

Take temperature...101.5...give Tylenol
Take glucose lever...154...good
Give insulin shot...25 units
Give VP-16
Count out and give other evening meds
Give Posaconazole
Thankfully, I had already mixed and hooked him up to his TPN before leaving the hospital.

Finally, I was able to sit and cuddle with Chad...boy oh boy was he happy.

Cam continued to fun a fever of around 101 through the night. I gave him Tylenol every 4 hours.

Please pray with us for an uneventful, enjoyable weekend at home before we head back to Memphis. Then pray for the flight to go smoothly and for Cam to handle it ok.

Thanks for checking in again. We love you all.

P.S. I am just going to put this out there and if there is anyone who can help, great. If not, it's ok, we'll work it out.
Do any of you have frequent flyer miles you would not be needing soon and would like to donate to Ed to fly home after delivering the van to us in Memphis. The flights are so expensive, especially one way flights. He could possibly fly out of Little Rock or Nashville if he needed to fly Southwest Airlines. Thanks..hope no one is offended by this request.

Friday, August 4, 2006 12:56 AM CDT

The day has gotten off to a pretty good start. First, we got his lab results that showed his blasts are down to 25 percent. Thank God. His platelets were low so he got a unit of platelets.

Dr. Frost said his ct results were all good. There is no more fungus showing up in his lungs, liver, kidneys. Thank God, again. The pancreas is a mess but we knew that. The kidneys are enlarged most likely due to the leukemia collecting there.

The glucose and potassium are at acceptable levels at the adjusted TPN formula. Dr. Frost kind of wanted to keep him here for the weekend but I told her I thought it would do Cam and I a real boost if we could be home so she agreed to let us go this afternoon. He will get another unit of platelets to tide him over a little longer.

She will be talking to Dr. Hale today about the next plan, if we will be going to Memphis next week or waiting a little longer....one day at a time.

Thanks to Pastor Tom, Becky and their friend for coming down on Wednesday night to visit and pray for Cam. We are also looking forward to a visit from Kimberley, Calden and Walker soon.

I'll let you know what Dr. Hale and Dr. Frost decide about next week.

Thursday, August 3, 2006 4:58 PM CDT

It is 4:00 and we haven't even seen the doctor yet. She has been busy with patients with "higher priorities". In the mean time, Cameron's glucose and potassium are better. Since they are the reasons he was admitted, I asked if that meant he could be discharged but I guess they are still going to keep an eye on glucose levels. I have questions about all of this but only have been able to express myself to the nurse and the resident doctor. Oh well, I guess we would just have to turn around and come back in the morning anyway.

Cam is going to have a CT scan in about an hour. It will take a closer look at the abdomen,chest and pelvis...checking on fungus, etc. He also had an xray of his thumb,wrist because it is still bothering him a lot.

The bad news...the blasts were up to 58 percent! I can't believe it is jumping like that when he is actually getting the VP-16 and vincristine now. I want to know how long we should expect to wait until we see the chemo working and bringing those blasts down...another question for the doctor.

Cam has been quite nauseated today so he has tried to sleep most of the day as a way to deal with it. It has been way tooooooo quiet in here. At least during this boring, uneventful day, he has been relatively comfortable.

I'll add any new information I might get after seeing Dr. Frost.

6:30 - Dr. Frost came in. She is concerned that the blasts have not been reduced by the chemo. She thinks the best plan is to go back to St. Jude and get into the treatment with the NK cells. She's going to talk to Dr. Hale about it tomorrow.

Wednesday, August 2, 2006 6:57 PM CDT

I just typed a long update and it disappeared. I'll try again.

We came to the clinic this morning for ambisome and labs, hoping for a short day so we could get home at a reasonable time. Instead, I am typing this update from room 338. He was admitted again.

His potassium is high at 6.0 and his glucose is high again at 400 . Both are issues that have to be handled in the hospital because they are too dangerous to mess around with.
His platelets were at 11,000 so he had to get another unit. His ANC is still 0 and his blasts are AWFUL at 45BR>
While Cam was getting his ambisome, he had to use the restroom so we walked into the room pushing his IV pole. Someone had placed a big bag of saline on the pump. When the pole hit a slight bump, it knocked the bag on Cam's PICC line. He immediately screamed and cried cuz it hurt a lot. He said it felt like the whole line had come out. We took the dressing off to get a good look at it. It was bleeding a lot (remember his platelets were only 11,000). It looked like the place where the line is held in with some stitches was torn slightly but the rest of the line was intact and is working fine. Whew! That was close and very scarey for Cam!!!

Needless to say, it has been another long, exhausting day. We certainly didn't come prepared to stay here so Ed and the boys are coming down tonight with a few things for us.

Please pray for
1. quick resolution of these chemistry issues
2. blasts to go down and stay down forever
3. pancreas to start regulating his insulin
4. wisdom for the doctors who are treating him
5. emotional, physical and spiritual strength for all of us
6. no more complications until we can get him to transplant or to the next treatment.

The book of Romans talks about "claiming the things that are not as though they are" in the name of Jesus. I am doing that for my dear son's health. Nothing is impossible for God.

Thanks. We love you all

Tuesday, August 1, 2006 1:51 PM CDT

It's official. We are going home today. He ran a fever of 101 again this morning but the doctor gave him an antibiotic that covers for 24 hours, drew more cultures from his lines and says he will be fine at least until tomorrow when we have to return to cilnic in the morning anyway. Cam is soooo happy to be going home.

Now we are waiting for the TPN to be mixed and delivered, for Cam to get his vincristine, to pick up his prescription for insulin at Walgreens.

He is feeling pretty good this morning with the exception of a strange pain he has developed in his left thumb area. It is similar to the one he got in his right wrist a couple of months ago. It is painful and he can't use the thumb. who knows what that is all about. I sure hope it is no big deal and Cam can manage to deal with it.

His blasts were up to 32oday....Just what I don't want to see! Platelets were all the way down to 8,000 so he got a unit of those, hemoglobin is holding pretty good. ANC is stil WAY down next to nothing.

Derek says Chad is very anxious for us to come home. He has been asking for MAMA all day yesterday and today. This has to be so hard on him but he sure is lucky to have Derek there with him as a caretaker.

Update 2 today, 9:30 pm
We finally got home around 5:30 after stopping at the Apria Home Health Agency to pick up his TPN. I had to hook him up right there in the lobby because he can't go long without getting the glucose. He was without the glucose for only 30 minutes and his level went down to 73 from 137. That is scarey.

Anyway, we got home and the attorney representing Ed and me in the guardianship case for Chad was here for a meeting. Ed had forgotten about it but I was there to take care of it...tired and a bit frazzled but we talked about the upcoming hearing to make the matter permanent for us. Chad's attorney was supposed to come tonight also but he didn't show up.

Cam was tired and not feeling well. I took his temp, it was 102.9! I called Dr. Frost and she said he had been given 2 long acting antibiotics before he left the hospital so we should just give him Tylenol and watch him during the night. Thankfully, she didn't think it was necessary for us to bring him into the ER. We have to be in the clinic at 9:00 in the morning anyway.

Chad finds it very hard to see Cam sick. He gets upset and fusses and cries. He also wants me to be right beside him all the time and gets upset when I have to take care of Cameron's needs. He probably is confused every time we leave not knowing how long we will be gone each time....a few hours or 5 months!!! I hope he handles it better with time because it was pretty stressful tonight.

Gotta go get Chad settled down and tucked in. Thanks for your continued prayers. We desperately need God's continued touch for Cam.

Monday, July 31, 2006 5:38 PM CDT

2nd update for today. It is 4:35 and we finally feel like we have a plan for the next week or two.

Dr. Frost (here) and Dr. Hale (St. Jude) have come up with an agreement for treatment. They feel Cam should go back on the VP-16 and another dose of vincristine to attack the leukemia cells. They both feel it is best handled here because of the benefits of being at home or at least closer to home. He will be discharged in the morning after vincristine and if his potassium is better than it was today. He will come back here on Wed and Friday for ambisome and for labs.

By this Friday, further discussions will take place about how Cam is responding to the chemo toward getting him to remission. (If he is responding well, it would mean proceeding toward the haplotransplant) Or if it doesn't look like he is headed for remission, the other treatment would be the way to go involving the NK cells. That study will be open in about two weeks.

He is scheduled to go back to St. Jude for an appointment and bone marrow biopsy next Monday-Wednesday. If it looks like he is doing ok here and tolerating the chemo, we might put off that visit for another week and then move back there at that time.

Have I mentioned that our mottos are "One day at a time", "Trust God because He is in control." and "Keep fighting, never give up." You have undoubtedly seen those repeated on this webpage often.

Although this has been a frustrating and confusing day, I know that "All things work together for good to them that love the Lord" so we can count on this decision being what's best for Cam.

Cam has felt pretty good all day, has been playing Nintendo and is resting now.

Thanks for your continued prayers and support. We are very aware of your love and concern and it means so much to all of us.

Monday, July 31, 2006 9:55 AM CDT

Good morning. I am sorry I didn't update yesterday. It was an unusual day because I spent it at home with Chad, Derek and the dogs. Ed was at the hospital with Cam. Cam had a good day. He had to get a unit of platelets and his blasts were up to 12%. His glucose is beginning to level off with the twice a day Lantis shots.

This morning he isn't feeling very well. He has had a stuffy nose, headache and some stomach upset. He also has a fever of 38C which is 100.4F That is the cut off for what they consider a fever.

We have a teaching session with the Diabetes Trainer about how to control the glucose with diet as well as insulin. TPN was restarted last night. We'll see how that affects the glucose. If Cam can eat a little more, hopefully we can taper that down from 24 hours to having a little freedom during the day without carrying it around.

I am anxious to talk to the doctor this afternoon about the plan Dr. Hale has suggested for treatment this week. I also am anxious to hear what the ultra sound results look like. We are hoping to go home today but with a fever today, I don't know if that will happen.

I'll update more after talking to the doctor. I haven't gotten his lab results yet this morning, either.

Saturday, July 29, 2006 6:31 PM CDT

Cameron is still in the hospital. He ran a fever last night so they took some cultures. I haven't heard of anything that is growing. He also had an ultrasound of the abdomen, liver, pancreas, spleen, kidneys. I haven't heard the results of those yet, either.

The good news is that the blasts were down to 2% today! Yeah! His ANC is still very low. Red cells and platelets are ok. His glucose has been fluctuating quite a bit so that is what the doctor is concentrating on. We are trying to get a good base rate of slow release insulin and then can supplement with boosts of faster acting insulin as needed. That's the goal.

Dr. Hale and the leukemia experts at St. Jude have come up with a recommendation for the doctors here for treatment for the next week until we can get back to St. Jude. I am anxious to hear what that recommendation is.

Derek came down to spend some time in the room with Cam so I came home about an hour ago. Cam always perks up when Derek is around. Ed just left to go down and spend the night there. Derek had plans to go to Connecticut tomorrow and then to the Sturgis Motorcycle Rally in South Dakota with the worship band from Seaport Community Church. He was excited about going but realizes the importance of staying here to help with Chad since Cam is back in the hospital. It is a real sacrifice for him but then the whole family has had to do whatever it takes...one day at a time.

Thanks for riding this rollercoaster with us and for holding us in your thoughts and prayers.

Friday, July 28, 2006 5:57 PM CDT

Not too much has been happening today. We did see the endocrinologist who is going to work on giving insulin through injections as opposed to in the TPN. It is so complicated and we don't know why his glucose spiked like it did. He will be having an ultra sound shortly that will hopefully give some insight. One thought is that there might be a cyst in the pancreas that could be blocking the duct that releases the insulin. The docs feel they can get this problem under control by Monday or so and that it can be managed at home.

The blast count went down to 18% probably in response to the vincristine. He had to get 2 units of red cells during the night. It was very disruptive because he had to get his blood pressure taken every 15 minutes. It took 4 hours! Cam was beside himself with frustration. This is the exact reason he hates being in the hospital. He tried to sleep a lot today to make up for it.

He also had to get another unit of platelets this morning. I don't know yet what the procedure is for having platelets donated directly for a patient but I'll ask.

I talked to Dr. Hale at St. Jude on the phone for 30 minutes last night. He discussed some options that might be available and the pros and cons of those options. Bottom line is that we are way out on a limb in terms of treatment possibilities. We know that but Cam continues to fight and believe for better days ahead. Dr. Hale didn't think it was a good idea to travel back right now because of risk of infection with low counts and his low stamina. Ed and I want to get him back there whenever possible because we feel they have a good grasp of the big picture with all of his complications. Also he would be there to begin alternate treatments when he is ready for them.

My mind is kind of jumbled right now and I am very tired so if this seems a little incoherent, please excuse me. Sometimes when I read back on these updates, I notice how disjointed they are.

We are continuing to trust that God is in control. I just love this young man so much. What an incredibly brave young man he is with unshakeable faith.

Thursday, July 27, 2006 7:35 PM CDT

It has been an incredibly difficult day. Cameron felt awful from the moment he woke up. He was nauseated and so tired he could hardly get out of bed. He just felt awful. I finally took his glucose level and it was WAY TOO HIGH at 486! I called the clinc and left a message that I needed to talk to someone. Two hours later when I hadn't heard from anyone, I called back. Then we were told to slow down his TPN because it has a lot of glucose in it. Then we had to come to clinic. He was admitted into the hospital because they need to monitor the glucose as well as give him red cells. Th hemoglobin was 8.9 and platelets were at 34,000 after the transfusion yesterday. ANC is still very low. We learned that his basts were up to 28% yesterday. That is soooo scarey!!! I do not know what can be done about that! Dr. Hale doesn't think it is a good idea for Cam to travel back to St. Jude right now. He will discuss treatment ideas and options with the docs here, though.

Cam is relatively comfortable right now. The TPN has been stopped, glucose is down to 366. He got 2 nausea medications.

I'll write more later if there is any more news. Right now, I'm trying to put all of this into God's hands and trust him rather than being scared about what we are looking at in the natural sense. He is still bigger than all of this and is able to turn it around for good.

thanks, again, for your prayers and for checking in on Cam.

Wednesday, July 26, 2006 10:29 PM CDT

Ok, prayer warriors. We need more urgent prayers, again.
We had a long day at the UNM clinic again. We got the complete lab results from Monday which showed 19% blasts!! There were 0 blasts in his blood on Friday at St. Jude. We are very concerned because his ANC is still too low to get the VP-16. He got the vincristine on MOnday but I didn't see the blast count from today's labs.

He is feeling AWFUL! He is extremely tired, achy, nauseated, throwing up, pain in his abdomen ...just REALLY BAD! It could be because of the vincristine or from the leukemia or a combination of both.

We left home at 8:30, got to the clinic at 9:30 and didn't even see one person from the clinic until almost 12:00. We learned later, after I found someone to ask, that there was a child who had a reaction to a medicine that required the only doctor there to utilize almost the whole nursing staff. Finally, Cam's labs were drawn. His platelets were down to 6,000! so he got a unit. That unit had to be brought in from out of STATE! A nurse told us there were NO platelets in all of New Mexico! Needless to say, we were there a long time and didn't get home until after 6:00. That could make anyone tired, even good old mom.

Chad is really upset tonight because he senses how badly Cam feels. He is super sensitive.

So please pray for all of us. I've contacted Dr. Hale at St. Jude about what his impressions are. Hope to hear from him in the morning.

Tuesday, July 25, 2006 8:38 PM CDT

Cameron has not felt well today thanks to stinky vinky (vincristine) he got yesterday. He has had an upset stomach and just felt achy and bad. I know his hemoglobin is low. He looks pale and is lethargic so I'm sure he will get red cells tomorrow. We shaved off what little hair Cam had left so he is now bald for the 4th time. He still looks good, hair or not.

On a positive note, it seems that arrangements are being made that Cam will be able to get ambisome 2 times a week here in Santa Fe rather than having to drive to ABQ 3 times a week. That will save a lot of time and gas money.

Walker and Kimberley came by for a visit. It was great to see them even though they didn't stay long because Cam wasn't feeling too well.

Keep praying for remission and for his counts to recover. Thanks for checking in. We appreciate your continued support.

Monday, July 24, 2006 8:19 PM CDT

We had a good clinic visit to UNMH. Dr. Butros did an excellent job of understanding what Cam has been through and what is being done for him now. She was so supportive of him complimenting him on being a really remarkable guy and a strong fighter. He got his vincristine and his ambisome. We were glad they were willing to run the ambisome over 1 hour like they do at St. Jude. His WBC was up just slightly but they didn't have the ANC figured yet when we left. His platelets were at 31,000 and his HGB was at 8.2. He will likely need both of those on Wednesday when we go back unless his bone marrow kicks in and starts making those cells.

He was a trooper through the whole day but he's really tired out now and feeling yucky all over. He's laying down and resting now. I'm glad he will have the day off tomorrow.

How nice to come home at 6:30 to a delicious dinner Derek had prepared for us. What a guy! I'm so proud of him.

Thank God for his mercies. They are new every morning. We rejoice that we have come though another day with Cam, another day closer to him being whole and strong, again.

Sunday, July 23, 2006 11:14 AM CDT

I want to take a few minutes to journal our experiences of the last couple of days.

Friday was a day we would not like to repeat. It started off early so we could get out of the clinic early in case we got the green light to leave today. We got there at 8:00. Everything went as planned, got labs which were all as expected. ANC is low at 100 so he can't resume the VP-16 yet. Platelets were at 8,000! very low so we knew we would be getting a unit of those. After he got his ambisome, the platelets were ready to go. What we didn't count on was he started having slight chest tightness. It was assumed it was a reaction to the platelets. So we had to have some more labs drawn, a part of their procedures, wait for those results and see if he needed a second unit of platelets before hitting the road. The platelets count was 43 but we all decided he could use another unit to tide him over until Monday. It took a long time for this whole process.

AFter talking to UNM Thursday, we thought the problem they had was that they didn't have anyone to provide the TPN while we were there. St. Jude said they would provide it by FED-EX as long as we needed it or until we got a provider here. We thought we were good to go. Then at 4:30, we got a call from UNM Friday. They said the problem wasn't a TPN provider but they didn't have a home health nurse available to supervise it since he gets 60 units of insulin in it. They were still hesitant about us coming home because of this. Then they said, go ahead and come home and if we need to, we'll put him in the hospital to supervise the insulin until we get him a home health nurse close to home. I said, we are not going 1,000 miles just to sit in the hospital! If he gets sick or has a fever, that is what we need to do , but NOT just to supervise the TPN he has been getting for 3 months! The pharmacist from St. Jude said they would be monitoring his glucose and would be responsible for it so we decided to leave.

By the time we got out it was 6:00 and I hadn't finished packing. We needed to pack the van and a few more things for storage. It was 102 degrees and HUMID so I was soaking from sweat and exhausted by 8:00 when we finally were ready to leave.

The first hour was fine but then I started sensing a problem with the van. We started praying and pleading with God to help us get to the hotel without problems. The problem eased up but then we ran into a big thunderstorm....downpours! Then I had to pull over to mix the TPN to hook up to Cam! To make a long, tedious story short, we got to the motel in Roland, OK by 1:00 am exhausted and SOOO thankful to be there safe and sound.

During the day, while we were heading west, our two knights in shining armor were heading east to meet us. Ed and Chad were coming to escort us home in case of any trouble. They didn't come on white horses but came in the white jeep! They pulled into the same hotel around 2:00am.

We got up in the morning and met Roy and Ruth Svenson for breakfast before hitting the road. Thanks for giving us a nice place to sleep, again!!! They own the Interstate Inn in Roland, OK. Check it out if you are passing by there.

We were glad they were with us on the rest of the drive. Ed put water in the radiator and transmission fluid in which took care of most of the van concerns....enough to get us home without any incidents. (I know nothing about cars except how to turn it on and put gas in it.)

Cam felt good all day and tolerated the drive like a champ. We were tired but so happy to be home around 9:30. The dogs were crazy with excitement. They have both grown around the middle and Dimitri seriously needs a grooming but other then that, they are the same sweet boys.

Derek had worked very hard for 2-3 days thoroughly cleaning Cam's room, the kitchen, the carpets, and more getting the house ready for Cam. It looks great. Thanks, Derek!!!

We have the day off today and will go to the clinic in Albuquerque tomorrow. Thanks for your prayers.

Our prayer focus is
1. Cameron will have NO complications of any kind while we are home, especially no return of the fungus.
2. Cameron will achieve remission and can proceed to transplant as soon as possible.
3. Guidance for the doctors here to know how to handle Cameron's complex issues and to be comfortable with him.
4. For Cam to continue to gain strength in every way.

Saturday, July 22, 2006 11:34 PM CDT

Just a quick update to let you know we arrived HOME at 9:30 tonight. We are tired but doing fine. I'll write more tomorrow to let you how the trip went and how Cam is doing.

For now, thanks for checking in and for praying for a safe trip.

Thursday, July 20, 2006 6:15 PM CDT

I have been busy today, packing and moving stuff to storage to get ready to head home. It is SO hot and I have to move stuff from Target House I to the other house. Besides that, I have not been doing anything very physically demanding for the last 5 months. Now, all of a sudden, I'm lifting and dragging and pushing and bending...
Now I'm hurting.

I just got a call from UNMH in Albuquerque. They just heard today that Cameron is on 24 hour TPN and they are having a hard time coordinating a home health agency to provide that. We might be delayed in leaving here for a day or two. We won't know until tomorrow morning. If we are able to go tomorrow, I will have to finish packing fast after our clinic appointment. I just feel like I want to yell, or cry or something out of frustration. I'm sure it will all work out in the end but I don't like these last minute surprises.

By the way, Cameron is doing really well. He looks good, is eating pretty good, is getting around so much better, is upbeat. The BEST NEWS is the CBC done on Tuesday showed NO blasts in the peripheral blood. I am believing the blasts are disappearing from the bone marrow, too! God is able to do this!

God Bless you all....keep praying.

Wednesday, July 19, 2006 4:53 PM CDT

We got to do something fun today with the St. Jude's school program. We went to see the Magnificant Desolation IMAX movie. It's about the Apollo moon missions. Then we walked around the Pink Palace Museum a little bit. Cam did real well but tired out from all the walking. We went back to the clinic and got the ambisome.

Tonight, we are packing. I can't believe we have accumulated so much stuff in 5 months. Yes, it has been 5 months today since we left home. It is 1 year ago today that we left Santa Fe and headed to Denver for the 2nd transplant. What a year this has been!!!

Thanks to Jennifer for dropping off the DVD of the service. I am anxious to watch it.

To Roy and Ruth Sventson, Cam and I are hoping to stay at your motel on Friday night. I hope that is ok. Ed will be calling you tonight or tomorrow.

Gotta get back to packing. Thanks for checking in.

Tuesday, July 18, 2006 6:11 PM CDT

I am typing this update from the library in the hospital because Cam is having a marathon session in the medicine room. We had a late start on the day, we didn't get to the clinic until 12:15. He got lab work drawn, had OT (his wrist is doing MUCH better, almost back to normal), then the clinic appointment followed by ambisome, red cell and platelet transfusions!

Labs results are as follows for anyone interested in the technical side of things, like me.
WBC-.5, ANC-200, HGB-7.9, Platelets - 23,000

I didn't get the differential results so I don't know if there were any blasts in his blood sample. He has gained a couple more pounds. He is up to 110 lbs.

Dr. Hale is ready to release us to go home. He is just waiting on the final ok from Albuquerque and for them to set up an appointment. We will likely come back here in 2-3 weeks for a check-up and a bone marrow biopsy. We have decided to drive home. We weighed the pros and cons back and forth and finally decided we sure could use the van at home, we can bring more "stuff" home, etc. We will probably leave here on Friday, drive to Ft. Smith (4 hours) for the night and then make the longer drive on Saturday (11 hours). Please just pray Cam doesn't get any fevers while enroute home!

It got up to 100 here yesterday and again today, I think. Yukkkkk! I know it is hot everywhere.

Thanks for checking in. We love you all.

Monday, July 17, 2006 7:54 PM CDT

We had a surprisingly short day at the clinic today. Cam's potassium was too low to get ambisome today so they said he could just miss it today. He did get his vincristine (chemo). Since we got out early, we decided to go see Pirates of the Caribbean 2. Cam really liked it. I thought it was ok, just not really my type of movie.

Tonight, he was kind of shaking and really cold. I checked his blood sugar and it was down from where it usually is. He had a drink with some sugar in it and ate supper so I'll check it again in a couple of hours. He could be starting to feel the effects of the vincristine, too.

When I watched Cam walk around the clinic today, I was so proud of how well he is doing. He is more independent of me and gaining strength. Then when we go out into the real world, the movie theater, it is such a harsh reminder of everything he is dealing with. He wears his mask and carries his backpack with TPN tubes coming out and going into his arm. He walks slowly and carefully and gets stares from people, especially children. He pretends not notice but later he tells me it bothers him a little. That is one of the great things about the Target House and St. Jude. In those places, all the kids are in the same situation so no one feels out of place with the masks, TPN, wheelchairs, walkers, artificial limbs or bald heads.

Thanks for your continued support and prayers. Please remember our friends, Spencer who had his transplant a couple of days ago and Jace who has started his pret-transplant chemo. Also Marcus continues to have a great deal of difficulty and is in the hospital for the 5th straight week. They are all teenagers having to deal with such big stuff.

Sunday, July 16, 2006 5:32 PM CDT

Cam and I started the day by "attending" Cornerstone Church via DVD thanks to Jennifer. We enjoyed singing along with the worship team and listening to the sermon. It is the next best thing to being there. Church has always been such a big part of our family's lives and now it has been impossible for us to go due to clinic visits, low counts, hospitalizations, not feeling strong enough, etc. Thanks, Jennifer. I saw your comment in the guestbook and would love to have a DVD of today's sermon about faith.

We were at clinic by 9:45 and didn't leave until 3:45. He had to get ambisome and then 2 units of platelets because they were down to 12,000. WBC is low and ANC is only 300. All victims of the VP-16. Then Cameron had me on a "bean bag chair" hunt. He has decided he would really love to have one of the nice ones, big enough to lay on and get really comfy. So I went to Sears, Target, Linens'n'Things, Bed, Bath and Beyond, all with no luck. I could only find the little vinyl ones. I might have to order one on-line or if I wait long enough, he might decide it isn't worth it. ;)

We have been watching a lot of comedies. We watched Bowfinger and Rebound yesterday. Tonight we are going to watch The Ringer and maybe The Jerk if we have time before we get too tired.

Gotta go make some supper. It is a delight to cook for Cam when he actually feels up to eating!

I forgot to thank David for sending the goodies from Hawaii. I haven't gotten brave enough to try the candied squid yet but the gummies and the plum candy are wonderful. Thanks to "Grandma Janice", too for the cards and money. We appreciate you thinking of us!

God Bless you all,

Saturday, July 15, 2006 5:14 PM CDT

It has been a good day. As the Psalm says, "This is the day that the Lord has made. Let us rejoice and be glad in it." Cameron has had the all-over-the-body aches but it has been manageable with pain medication. He has eaten good and is getting around with decent strength and stability. We have been finding a lot to laugh about. "A cheerful heart is good medicine." Keep the jokes coming in the guestbook.

It is too hot to do anything outside. It is 98 and humid and his counts are too low to go anywhere in public so we are just hanging out here at the Target House. I saw the weather map showing that the whole country is dealing with hot temperatures. Staci, have you reached the record high you mentioned? Record highs in Las Vegas must be pretty HIGH!

I am thankful today that Cam is feeling good and that Derek, Chad and Ed are all doing fine at home. Derek told me today that since he has been doing a lot of what my usual responsibilities are at home, that he has a better appreciation of what I have done for the last 20+ years... laundry, childcare, cooking, cleaning, yard work, shopping, etc. etc.

Try to stay cool and enjoy your day!

Friday, July 14, 2006 6:20 PM CDT

We had an appointment with Dr. Hale this morning. He looked Cameron over really good and we talked about the delicate balance between too little chemo and too much chemo causing low counts and the painful side-effects. So, today his WBC dropped to .7 and ANC to 400 so his etopicide (VP-16)has to be held until his counts come up. The vincristine is causing lots of different pain in his body. So to keep taking the vincristine, we are trying two different pain medications to deal with that. One that he took today seemed to help enough that he was able to eat an omelet for supper....that's good!
The blasts wer down to 1%. I asked Dr. Hale what he sincerely thought the chances of Cameron achieving remission with just these two chemo agents. He said it is a long shot and it could take a while but we'll keep on this course for now and possibly make changes later if we need to. He said if we get the bone marrow down to 5% it is considered remission and we could proceed to transplant.

I know that God's grace is sufficient and certainly he is able to heal so I am not going to worry but continue to keep trusting God. I heard a song on the radio last night on "Hallelujah FM" that says "You shall live and not die" over and over and over. It also reminds us that if God said it once, we need to stand on that word, believe it and don't lose faith. Those are the EXACT words we received from Pastor Brad the night Cameron was first diagnosed with leukemia in November, 2000. Thank you, God for reminding us of that! We will keep the faith... Hebrews 11:1 says "Now faith is being sure of what we hope for and certain of what we do not see."

Plans are underway to get us home in a couple of weeks if things work out to get treatment in Albuquerque or Santa Fe.

I am thankful, (and sad) that our new friends and neighbors, Emily and her family get to go home to Florida tomorrow. She got good test results from her 100 day post-transplant testing! Thank God for that, too. We will miss you guys. Cameron is down in the dining room watching Pink Panther with them right now so I'm going down to join them.

Thanks for checking in and continuing to pray.

Thursday, July 13, 2006 3:26 PM CDT

We are "home" back at the Target House. After 12 days of being in the hospital, it is good to be out. Cam hasn't run any more fevers and his C-RP is better at 4.3. Blood counts are dropping, WBC is 1.4, ANC 600, HGB is ok and he has to get another unit of platelets this morning. Blasts were down to 2%. Now the doctors are trying to find the balance between too much chemo that knocks the counts too low and high enough to continue the assault on the leukemia. They will adjust it daily, if necessary.

Cam is tired so he is taking a nap. I know he will sleep good tonight! so will I! His mouth is very sore, not really typical mouth sores but generally the gums and teeth are hyper sensitive and painful. So when he feels like finally eating, now it hurts! Can he ever get a real break?

I haven't heard for sure, but I know inquiries are being made between Dr. Hale, here, and UNMH in Albuquerque about
Cam getting treatment there so we would be able to be home for a month or so. It would be a nice break away from here and good to be home.

I am thankful to be here with Cam and that he is well enough to be out of the hospital. Once again, I am thankful to have this wonderful apartment to come "home" to.

Wednesday, July 12, 2006 7:08 PM CDT

It was a good day. Cam hasn't had any fever for 48 hours and he has been feeling ok. He still has some mouth and jaw pain but pain medication works well for that.

Our friends from Santa Fe came around 12:00 and hung out at the hospital while Cam got his IV antibiotics and then we went out on pass. We went to the Target House and showed them around and played a game in the Music Room. We both enjoyed the visit very much. It tired Cam out. The boys, Walker and Calden, were their normal, energetic selves and Cam just isn't even near that energy level yet. But it was good for him and me. Thanks, Kaaren (grandma), Kimberley, Walker and Calden for coming! You are great friends.

Cam's labs were good. His WBC is going down slowly and is at 1.4 with an ANC of 1000. His HGB was fine and he got some platelets this morning. The Blasts were down to 3%. I can't wait for them to be back down to 0!...then especially 0 in the bone marrow! C-RP was down a little from 8.3 to 6.8 so it is still quite high but it is decreasing.

We are pretty sure we will be discharged tomorrow (but how many times have I said that recently?) God only knows for sure.

Thanks for checking in and for your comments in the guestbook.

Tuesday, July 11, 2006 3:45 PM CDT

We're still here...in ICU room 3004. Last night, right around 8:00, he had a fever, again. It was 38.9C, anything over 38 is a fever. Every night it is the same time of day that his fever goes up. It goes down without Tylenol and stays down all day. The C-RP was up too so they are doing cultures, again! If his cultures stay negative for around 48 hours, he can go home to Target. That means the earliest is Thursday afternoon! We told the doctor that Cam's friends, the Weems, from Santa Fe are going to be here tomorrow. He said we could probably get out on a pass for a couple of hours tomorrow. That would be a nice compromise.

Blast count was down to 7% so the leukemia is responding to the chemo. Unfortunately, he has jaw pain and feels kind of crummy, thanks to the chemo, also. He was so down in the dumps this morning that I had to give him a good pep talk. He just wants out of here.

I am thankful today that God is the same yesterday, today, and forever. He was the healer of many in Bible days and he is still the healer today. We continue to trust him for Cameron's complete healing and long, happy productive life.

Monday, July 10, 2006 1:35 PM CDT

Cam got his new PICC line today. He was upset because they decided to put it in his left arm after they had told him they would put it in his right arm,again. It probably is better to have it in the left arm. He just doesn't like surprises like that. He came out of it fine although sleepy and his throat and arm are a little sore.

He is feeling pretty good...still not eating and didn't get much sleep last night. He had to get 2 units of platelets and a unit of red cells during the night. They both require frequent blood pressure checks while the cells are being transfused.

His counts are fine after the transfusions. WBC is 2.6 and ANC is 1,900 so they are holding up with the chemo so far.
Blast cells were down a little to 10% in the peripheral blood. C-RP is still high at 7.2.

We had a nice surprise this afternoon. We had a visit from Country Music Artist, Faith Hill! She and her husband, Tim McGraw had a concert in Memphis last night. Today, she came to visit all the transplant kids. What a nice treat. She was so nice and posed for a picture with Cam. I'll try to post it later.

We haven't seen a doctor yet this afternoon but I doubt we will be discharged today. Hopefully, tomorrow. We are so ready.

Thanks for looking in on Cam.

Sunday, July 9, 2006 10:00 AM CDT

It was a good night (except for the numerous interruptions). Thanks for praying for Cam's pain to go away. The last pain medication he had was at 1:00 yesterday afternoon and he hasn't needed any more. His pain is gone! That is the good news!!! The bad news is that his peripheral blood showed 14% leukemia cells this morning. It is going in the wrong direction! He also had another fever last night around 8:00. The C-RP was at 10.2 which is very high and indicative of some inflammation. The NP thinks both the fever and the C-RP could be caused by the leukemia. We'll see what the doctor says. There are no other signs of infections.

The VP-16 or Etoposide chemotherapy drug has been doubled and he got vincristine this morning. Pray these poisons will kill those nasty cancer cells and leave all the good cells alone!

He had to get red cells yesterday and will get platelets today. He continues to get cefapime and vancomyacin, both strong IV antibiotics. He continues to get ambisome, the IV antifungal every day, too. He still has TPN, 24 hours. Those are in addition, of course, to chemo and lots of other oral meds. It is NO surprise that he doesn't feel like eating much and that he is tired a lot It IS surprising that he can feel anything close to "good" or "normal". What a fighter our son is. Thank God for that inner strength he has and faith that he will be healed.

I want to say a BIG THANK YOU to Lisa Fuller and family for sending the nice Apostale hat you sent for Cam and for the wonderfully smelling soap you sent for me! How thoughtful of you and your boys to think of us. Thanks, too, to Regina from Santa Fe for sending homemade goodies. What a nice treat! I shared some with another mom who is stuck in the hospital with her son, Marcus. And the cute kitten with socks card, thanks Staci! You are all wonderful.

We are especially praying today for Spencer, Kole, Marcus, Emily, Jake, Samantha, Kent, Stephanie, James, Liam, Jace, Brennan and the tiny baby next door to us in ICU. Each of these kids are patients here at St. Jude in various stages of treatment facing unique, unbelievable challenges. I pray for them to have good health, long life and strength for the families and wisdom for the doctors who are treating them.

Thanks for checking in and for your prayers.

Saturday, July 8, 2006 9:08 AM CDT

We have another prayer request.

After a really good day yesterday, around 9:30pm, Cam started complaining of some lower back pain and pain in his buttocks and tailbone area. By 10:00 it was excruciating pain. On a scale of 1-10 with 10 being the worst, he rated this pain at a 15! He was crying and begging for some medication to help. The codeine that had been ordered for him didn't help AT ALL. I asked to see the doctor on call. It took (what seemed to us) to be a long time before he came. He didn't know what to think but ordered some morphine for the pain. It took another "long time" for that to come. He laid in agony for over an hour before he got some relief. He cried and screamed, pulled on his clothes, bit the blankets, and squeezed my hand to try to cope. I've never seen him like that! By 11:30 he had some relief and was able to go to sleep. The pain returned around 4:30 and they had to go through the process again to get more morphine ordered. He didn't get the medicine until 6:00. The nurse had drawn labs and she wanted to get those results before talking to the doctor so she could report the latest numbers. Something doesn't seem right about that. He should not have to have that much pain for that long when he is right here in the hospital and the doctor is right next door. I should have gone to get him myself.

Well, we were hoping for a good day like yesterday but the morning is not going well. He has a fever of 38C or 101.1 so they are going to draw new cultures from his port. Orders have now been placed for morphine as needed rather than having to get the doctor's order every time.

We are both scared. We don't know what this means or what is causing that much pain.

I'll write more later when we know more about what is going on. Please pray for us to have wisdom to know what is causing this pain and for it to disappear as quickly as it came. Thanks.

Dr. Woodard came in and said he thinks the pain is caused by the leukemia in the bone marrow. Cam's peripheral blast count was up to 12o the bone marrow has a lot of leukemia. The fever could also be caused by the leukemia.

The morphine is controlling the pain...Thank God for that! He is quite comfortable and feeling pretty good, if you know what I mean.

Dr. Hale and Dr. Woodard consulted and decided it was time to give a second chemo, vincristine. It has negative interaction with posaconazole, one of the anti fungal med he takes so he has to be off of it today, take the vincristine tomorrow, be off the posaconazole Monday and resume it on Tuesday. That will be repeated for the next few weeks. Pray, Pray, Pray this puts him into remission!!!

We have to move down into ICU today, not because he is so sick but they need this room for a patient coming in for a transplant. There are no rooms on the 2nd floor, either. They thought about letting us go "home" but he needs to stay here for the pain control.

It seems there is always something new to deal with. God, give us the strength we need day by day.

Friday, July 7, 2006 4:35 PM CDT

It has been another day of ups and downs. The big up is Cam has felt MUCH better today. He hasn't been nauseated or thrown up all day. In fact, he said he wanted Quiznos so I got that and he ate half a sandwich! Nice! He has had more energy and been much more alert, too.

The chemistries are a little better, calcium is down to 11.3 from 12.1 yesterday after getting pamidranate(sp). Postassium is down to the normal range. Chemo was started last night which is certainly a good thing because his blasts were up to 7% today! I pray for a drop in that tomorrow.

He has had no more fevers and his cultures are all negative now.

The bad news is that they couldn't (or wouldn't) place his new PICC today. They have postponed it until Monday. So we were told he would have to stay inpatient until after that was done. Cam asked the doctor, if he hasn't had fevers and his cultures are ok, why couldn't we at least go to the Target House for the weekend? He said he would consider it if the calcium comes down a little more by morning.

Dr. Hale said we will introduce another chemo agent probably next week to try to get him into remission. After that, he suggested, once again, that we go home for a month or so because the next transplant trial study doesn't open for 6-8 weeks. It is something we need to consider and discuss. Cam is more stable and stronger this time so maybe it would work out.

I ran into some friends from the past, from Springfield, MO in the cafeteria today! Unfortunately, they are here because their son was recently diagnosed with a rare cancer that is being studies here by St. Jude doctors. It was wonderful to see them but I wish it was under different circumstances. Please pray for Kent.

I am so VERY thankful to see Cameron in better spirits and feeling better today! Thank you God for answered prayers. Please, God, continue to answer our prayers for remission and gained strength.

Thursday, July 6, 2006 1:14 PM CDT

So far today, we have heard some good things and some not so good things. Cam's basic blood counts continue to look good. His chemistries are kind of messed up, though. His calcium jumped up as well as his potassium. So it was decided to hold the TPN for a while and just give fluids for now since his TPN has potassium. He will be getting the same medicine he had before to bring the calcium down. I asked about the insulin he usually gets in the TPN. I guess they are working on what to do about that.

The bad news is that his temp went up to 38.2 or a little over 101 early this morning. They will usually not release from the hospital until he has been nonfebrile (no fever) for 24 hours. The good news is that the cultures drawn from his port are negative so far.

We haven't seen the doctor yet so Cam is hoping to convince him to let him sleep at Target tonight and come back tomorrow for the meds he needs. We'll see what he says.

Thanks you all so much for the comments in the guest book. It means so much to both of us to read your words of encouragement. Cam has had a couple of mini meltdowns cuz he says he is just so tired of all of this stuff. Then he seems to find the strength he needs to perk up again. It is so incredibly important for him to remain positive which is hard at times.

I'll write more later if there is anything new to report, like if we get to leave :0). Seriously, I just want what is best for him to get better. We'll just have to deal with the rest.

4:30
The doctor came in with some not so good news. He said the peripheral blood is showing 3eukemia cells, again. Those crazy, relentless evil cells just keep coming back! Chemo will be re-started tonight. I had a feeling that might be happening because the last time his calcium went high, it was because the leukemia was returning. It seems to be the same this time.

He continues to be very nauseated and throwing up often. The doc said that can be caused by the imbalance in the chemistries. He has been given ativan which helps fight the nausea by helping him sleep through it.

There is a discussion about Cam getting another central line maybe tomorrow. They usually want to wait a few days after all the cultures come back negative. But, he really needs the extra lines so we'll see what they decide. The bottom line is that he will not be discharged for at least 2 more days to give them a chance to get the new line (maybe) and get the chemistries balances out.

He is getting weaker, again, the longer we stay here. He went for a short walk and had to sit down and rest half way through because he was so winded. It is frustrating to both of us!

Wednesday, July 5, 2006 1:52 PM CDT

Cam's blood cultures are still coming back positive so the decision was made that the PICC line has to come out. It will be removed some time today. Cam isn't happy about that because now they can just use his port. It is only a single lumin port and they need to have more access to his veins for TPN and other meds. They will decide in a few days after he has gotten only negative cultures back, if they will place the double lumen hickman or broviac. He will need that before transplant anyway and we are still believing that will be happening before too long.

Cameron is really not happy about having to stay here another night or two. He said he had a lot of interruption to his sleep. I slept in the adjacent parent room and slept pretty good. He continues to have a lot of nausea and some vomiting. It is probably worse than usual because of the antibiotics. His counts continue to be good. In fact, they are improving.

So for now we bide our time here in room 4017. I try to get him out and walking but it is not easy. He usually prefers to stay in the room. He will have PT some time this afternoon, I think.

Keep praying... Thanks. It would be great if you took a minute to write in the guestbook. We check it often.

Tuesday, July 4, 2006 5:12 PM CDT

I expect that most of our friends and family are out enjoying cookouts or picnics. I wish we could join you. Instead, we have had a long, veerry slooow day here in room 4017. The good news is that Cam is feeling pretty good. His back is hurting and he still isn't eating much of anything but he got up a few times and walked around and he's been in good spirits.

We have learned that the cultures from one of his PIC lines came back negative but the other one is still positive for this gram-positive cocci infection. (I think I heard the doctor refer to it as a staph infection, also.) He said that the last time the cultures were drawn, there had not been a real significant chance for the antibiotics to work so the cultures were drawn again this afternoon. If these come back negative and if he doesn't run any more fevers, we will likely go back to the Target House by tomorrow evening. Then, he would come back in for more IV antibiotics in our 2nd "home away from home", the Medicine Room. God is good and we are continuing to trust Him to get Cam through this, resume chemo and get straight into remission.

Last night, around 9:45, we heard some loud booms outside. We realized they were fireworks so we went down to the 2nd floor lobby which has a huge window facing the downtown area, and watched a fireworks display. I have heard that there is another one tonight at the AutoZone Park, the stadium where the triple A baseball team, the Redbirds, plays. We'll have to see if we can see that one from here, too.

I hope you enjoyed your day. Thanks for checking in on us.

Monday, July 3, 2006 12:47 AM CDT

It is 12:45 and we are still waiting to see the doctor. However, we have learned a few things already this morning. Cam had a chest x-ray this morning. It came back showing no signs of pneumonia. We are thankful for that but are not really surprised. We didn't expect that he did have it but he has been having a cough for a few days so it needed to be ruled out.

The cultures taken from his PIC lines came back positive, both of them. That seems to be the culprit for the fever. These are long term IV lines that are inserted into his inner, upper right arm into the aorta as a central line where he receives his TPN in one and gets labs drawn and other medicines in the other line. We were told this type of infection should respond quickly to the antibiotics he is getting. Another set of cultures were drawn a few minutes ago to see if the infection is responding to the antibiotics he has already received.

Now the question will be if the doctor feels we need to remove the PIC line so we don't risk more infections.

Hopefully, this will all clear up soon and we will be out of here by tomorrow or Wednesday and get back on the road to recovery, gaining strength and getting into remission.

Cam felt ok this morning but is very tired and headachy this afternoon so he is sleeping. His stomach has not been feeling good, either.

I'll write more later after we see the doctor.

Hope you are enjoying your day and planning some fun for the 4th.

3:00 The doctor came in a while ago and clarified some things. Not only were the cultures positive that were taken from the two PIC lines but also the one taken from his arm. So that indicates that the infection is in the blood, not just in the lines. He said it was a good thing we came in and got started on the antibiotic when we did. I asked him, if we didn't catch the fever and start the meds when we did, would it have likely turned into something more serious. He said, "Oh, yes." with a very serious look on his face. Thank God for keeping Cameron safe from more complications.

As we thought, the good news is that the bacteria that has been identified is one that usually responds well to antibiotics. The cultures are continuing to be watched in the lab to narrow down the specific bacteria even more, if possible.

Cam continues to feel pretty lousy and nauseated. I hate to see him like this. He said he would be ok for me to go to the Target House to get a few things.

Sunday, July 2, 2006 7:04 PM CDT

Just a quick update to let you know Cameron was admitted to the 4th floor about an hour ago. He came to clinic for his regular ambisome and started running a fever.

I have to run over to the Target House to get some of our things. I'll write more after I get our computer.

8:30
I am back and sort of settled into Cam's room. We came to get our routine ambisome and Cam didn't have a fever but wasn't feeling very good and was weak and a bit shaky. After about an hour of waiting, he started feeling chilled so I asked the nurse to test his temp. It was just over 101. An hour later it was 102.5. He was given an IV antibiotic, cefapime (sp?), cultures were taken to try to identify the source of the fever and plans were underway for him to be admitted for observation.

His ANC was up to 1400 which is nice and means he will likely start back on chemo tomorrow. The one number that was not good was the C-Reactive Protein which is an indicator of some inflammation in the body. It was .8 on Friday which is normal and 3.6 today which is high so something is going on.

He is really scared tonight. He doesn't get frightened very often but he thinks this might lead to much bigger things like the last two times he was admitted. I am hoping and praying that it is just a virus or an easy to treat infection. He has had some slight "cold" symptoms the past couple of days.

So we didn't even make it close to the big picnic on the Target House grounds. It might be just as well since it was so hot and crowded.

So he is in need of some extra prayers again tonight. I hope I can report good things tomorrow.

Love to you all and God bless you.

Saturday, July 1, 2006 7:26 PM CDT

We had a quiet day after getting the medicine at the clinic. When we were leaving the hospital, Cam was so tired and weak he could hardly walk. I was pretty concerned but he said he just needed a nap. He slept for 3 hours and woke up feeling much better. I guess the extra activities of the week caught up to him. I wish so much that he could be the energetic, fun-loving kid he used to be. He is much better than a couple of weeks ago but has a long way to go.

He isn't eating hardly anything. He gets about 1/2 bowl of cereal down or something like that. That's it for the whole day. I don't know if it is because of the TPN or if something else is going on. I would like to taper the TPN and see if that picks up his appetite but we can't do that until we get the insulin issue figured out. Everything is so complicated.

The Target House Campus which includes two Catholic retirement homes, a high school and a chapel, is getting ready for their annual St. Peter's picnic. They have tents set up in the front yard and are expecting up to 20,000 people. This picnic has been held for about 130 years! The public will not be allowed into the Target Houses but they will be swarming all around it. It is expected to be near 100 degrees tomorrow.

Thanks for checking in. Have a good weekend.

Friday, June 30, 2006 7:35 PM CDT

It was a pretty routine day at the clinic today. His counts have come up some. WBC was 1.2, ANC was 800, HGB 8.8 and platelets were up to 46,000. That all means his bone marrow is recovering from the chemo and that chemo can resume next week to keep attacking the leukemia.

We went to camp this afternoon but were pretty tired so we didn't participate much in the "wacky science experiments". This camp was provided by two churches from out of state; Grace Community Church in Blairesville, GA and Treasure Coast Community Church in Palm City, FL. They generously gave of their time and resources to help lift the spirits of our kids here and did a great job.

Thank you so much for your continued faithfulness in praying for Cameron. When you pray for him, could you petition God for the other kids here at St. Jude? There are so many children facing heartbreaking struggles along with several who are walking/talking, heartwarming stories of success in their battles.

Enjoy your holiday weekend with your families. Thank God for them, tell them often that you love them and give them lots of hugs.

Thursday, June 29, 2006 7:39 PM CDT

It was another good day. We had the lab work, chemistries only and the medicine room.

We were concerned last night when Cam's glucose went up to 446!(the goal is 100-200). I called the doctor and he said to test it again at 2:00 am to see if it had gone down since we had raised the insulin in the TPN back to 20 units. At 2:00, the glucose level was at 300 so we feel the 20 units is working for now. The only other thing that was pointed out is that the calcium is a little high, again.

This afternoon, we went to the C.A.M.P. again at the Ronald McDonald House. Cam disappeared with his new friends and I made a little scrapbook with some other moms. We had tacos and came back to the Target house. He is now downstairs watching a movie tonight.

I am so thankful that Cam is feeling well enough to be social. I only wish we didn't have the relapse hanging over our heads. I wish his appetite would pick up, too.
God is good and so faithful to meet our needs as we honor Him.

Wednesday, June 28, 2006 8:15 PM CDT

It was a smooth day at the clinic. Cam had OT, PT and med room. The only concern we had is that his glucose was really high today. Last night, we had been instructed to reduce the insulin I put into the TPN down to 10 units from 20. The desired range is between 100 and 200. His level was 361 this morning and 291 this afternoon. We were told to raise the insulin back to 20 units tonight.

This afternoon, we went to the Ronald McDonald House for C.A.M.P. Wishing Well. There was a fun magician and then we had some pizza. There were other activities for the younger kids. Since Cameron has been feeling more like his real self, he enjoyed hanging out with some of the other teens.

Ed and Chad should be home by now. It was another long ride but they both like driving/riding so it works for them.

Do you remember a couple of weeks ago I mentioned that Newsweek magazine was here interviewing some families? The article came out in today's issue mostly talking about the great work Target does in giving to worthy causes.
You can check it out at

www.msnbc.msn.com/id/13530147/site/newsweek

I hope that link works. If not, pick up a copy of the magazine if you are interested in reading the article.

I am thankful again today for this place that does so many marvelous things for our kids. They do a great job of treating the whole child (and their family) while working hard to save their precious lives. May God bless all of them for their efforts.

Tuesday, June 27, 2006 5:17 PM CDT

Cam had an appointment with Dr. Hale so Ed and I both had a chance to talk to him about what he's thinking.

He is pretty encouraged about how Cam is doing...gaining strength, gaining a little weight, tolerating the chemo, his leukemia has responded fairly well to the VP-16. The plan is, as soon as his WBC count comes up a little, we will resume the VP-16 to keep fighting the leukemia. Another chemo will be added soon to try to get him completely into remission, vincristine or PEG alsparganese. In the meantime, he will hopefully keep gaining strength and stamina. If things keep going well and when he does achieve remission, the transplant will likely happen in August.

Cam's counts are still WBC .6, ANC 200, HGB up to 9.0 and platelets were at 23,000. His glucose is in the ok range, too so we are reducing the insulin, again tonight. Then. he got his ambisome and platelets in the good ole medicine room.

Chad was a good boy as he hung around the clinic with us for several hours. Then it was time for them to go. They headed out around 3:30 and will sleep in Ft. Smith, AR tonight. We will miss them all over again.

Thanks to Jerilyn for sending the signed picture of "Pillar" several days ago (sorry I forgot to thank you earlier) and to those who have sent cards and keep remembering us. You are such a wonderful support group.
Thanks to Derek for holding down the fort while Dad and Chad were here and for taking good care of those furry boys, too. We sent some "dirty" or should I say "used" socks that Cam has worn for the dogs to remember him by.

Monday, June 26, 2006 6:31 PM CDT

Ed went to the clinic with Cam again while I did some laundry. Then I took Cam to see the endocrinologist about the glucose/insulin issue. He was a little confused and not sure how to proceed because he didn't have all the information he needed. We are going to gather some information over the next several days to see how the gluocse level reacts when Cam eats. All this is to see how he might be able to reduce his TPN with insulin for a few hours a day. Cam got sort of upset thinking he might be diabetic and have to deal with this for the rest of his life. I told him there could be worse things but I hope this gets resolved....another thing to pray about.

Chad has been so happy to be here. Last time they were here, it was when Cam was in ICU and it was such a stressful time. It was difficult having Chad around here but this time, it will be hard to see them go. They are heading home tomorrow afternoon.

I am thankful that Cam continues to feel pretty good. I am very thankful that Ed and Chad have been here to give us an emotional boost.

God Bless you all, Juli

Sunday, June 25, 2006 8:21 PM CDT

Ed spent the morning and part of the afternoon at the clinic with Cameron. Chad and I stayed at the apartment. Cam's white blood cell (WBC) count has dropped to .6 with an ANC of 200. HGB was 8.8 and platelets were at 28 so he didn't need any transfusions today....probably will tomorrow.

Last night, Cam's glucose level was up to 231. We are supposed to call the doctor if it goes over 220. The dr. said he wasn't too worried about it and that it would be checked in the morning. This morning it was 193 so it had come down a little but we might have to increase the insulin in his TPN again. We have an appointment with the endocrinologist tomorrow so we'll see what she says.

Please pray that Cam's WBC count starts to come up quickly again so he can start back on the chemo and so he won't be at risk for more fungus and other infections.

Thanks for your love and support.

Saturday, June 24, 2006 7:49 PM CDT

We spent the morning at the clinic. His potassium was borderline so we have to start giving more supplements so he can keep taking the ambisome. There is such a delicate balance in all the chemistries, it is amazing how the body works!

He hasn't had much of an appetite today but he is not really nauseated. We just have to keep encouraging him to eat. His hair is coming out more so we will probably shave it off tomorrow.

Ed and Chad got here around 4:00. We enjoyed visiting with some other families around here at a barbeque provided by a local Methodist Church. Now we are watching the movie "Eight Below" and enjoying being together.

Have a good evening and Sunday.

Friday, June 23, 2006 8:57 PM CDT

I don't have anything to report. It was a much shorter day at the clinic getting only the ambisome and having OT. Cam's wrist is getting much stronger but he still wears the brace for now.

We went to see the afternoon matinee of the movie "Cars". (Thanks, Janice ;0)) Cameron loved it and laughed so hard it almost hurt at the tractor/cow scene. I loved it because he loved it.

Ed and Chad are on their way. They got a late start so I don't know how far they will get tonight or what time they will get here tomorrow. I do know I am especially looking forward to Chad's big bear hug and the gleam in his eyes.

God bless you all with a good weekend. Take time to enjoy your families.

Thursday, June 22, 2006 6:51 PM CDT

We had a leisurely morning because we didn't have to be at the hospital until 11:30. It is almost 7:00 now and Cam just got his red cells so we will be here until around 8:30. That makes for a long day.

Cam's counts all dropped. The WBC was 1.0 and an ANC of 600. It is low enough that we have to stop the chemo again until it jumps back up. His HGB was 7.7 and platelets were 16 so had to get both today. There was confusion on who ordered the blood products so no one ordered them. It took over an hour to get that all straightened out...delays, don't you just love them.

Cam's hair is falling out more. We are finding a lot on his pillow and on his shoulders. He is trying not to mess with it to preserve it as long as possible but is prepared to shave it when it starts coming out in clumps. He is sad about it but isn't letting it get the best of him. It has been his trademark around here...so many people comment on his lovely hair.

Our friend, David, spent the day with us again and left this afternoon. It was a blessing to meet a new friend.

The medicine room was a hub of activity for a while this afternoon. Marlo Thomas was there with camera crews filming interviews and taking pictures of many of the patients. Cam wasn't asked to participate this time...that's ok. We hope to see the finished product when it is done.

Thanks for checking in. God bless you and thanks for your prayers.

Wednesday, June 21, 2006 7:41 PM CDT

We did not get the results of the bone marrow aspirate we were hoping for. The aspirate, which is not as detailed or as conclusive as a biopsy, showed that there is still 5% blasts. The bone marrow was hypocellular (it didn't have many cells) so it is hard to determine if it is much improved from the last one. Dr. Hale is on vacation so we won't know what his next plan might be until at least next week. Until then, we'll just continue going as we are. Cam started feeling more of the chemo effects today but still felt pretty good. He is very tired tonight. We are going down a little more on the insulin tonight in his TPN.

We had a guest, David, come visit us all the way from Maui, Hawaii. He has been praying for Cam and following him on this web page. He was going to be in Kentucky so he decided to drive down here to see us and encourage us with his faith. He happened to come on the day the day camp at St. Jude was having a "Hawaiian Luau". We thought that was pretty great timing.

Then we got a call that my brother, Rick, was flying home from a business trip and had a 2 hour layover in Memphis so we met him for a snack. Great to see him, too.

God is so Good and we are not going to get discouraged that we didn't get the remission miracle we were praying for yet. It will come at another time in another way.

Tuesday, June 20, 2006 7:20 PM CDT

It was another good day. The bone marrow biopsy went well but we don't have the results yet....likely in the morning. He ate good, walked around and we even got to pet the rescued grayhounds...Molly and Colin. They are so sweet and gentle.

Cam's counts are holding good. His WBC is 1.8 with ANC of 1,400, HGB is 8.6 and platelets are kind of low at 28. Liver functions are still a little high but are about the same as they have been. Bilirubin and C-RP are normal. Glucose is coming down so we are lowering his dose of insulin in his TPN tonight. We are hoping that means his pancreas is starting to produce some insulin. He has gained a couple of pounds.

We're staying in tonight, doing laundry, etc. It was around 97 and HUMID today. Yucky! They keep telling me, "just wait till July and August, we haven't seen anything yet." We're not looking forward to that.

Marcus is doing well after his lung surgery.

Thanks for checking in. Don't stop praying now. Even though Cam is feeling relatively good, he still has a long fight ahead.

Monday, June 19, 2006 8:13 PM CDT

We left Santa Fe 4 months ago today and haven't been home since then. No wonder we are missing Blaze and Dimitri! At least we have seen Ed, Chad and Derek a few times and talk to them almost every day. Ed and Chad are coming this way this weekend....we are anxious to see them.

It was a good Monday. Cameron continues to show increased strength, eating good and feeling good. He's walking wherever he goes, often by himself. He is down in the "Music Room" watching a movie with our next door neighbors. I'm glad he has been enjoying life in the past few days after such a long time of just holding on and working hard to get through the day.

He thinks he might be starting to lose his hair. If he loses it, it will be hard but he can handle it. He's had to deal with it 3 other times before. We'll see what happens in the next few days.

Tomorrow, Cam has a bone marrow test to get a look at how the chemo is effecting the leukemia. We are praying for astonishing results.....remission. Wouldn't that be wonderful, a real miracle! I believe it can happen.

I'll let you know the results when I know them. I haven't heard how Marcus' surgery went.

Thanks for checking in. Have a good evening and God bless you.

Sunday, June 18, 2006 8:17 PM CDT

HAPPY FATHER'S DAY....ESPECIALLY TO ED

We spent 5 hours at the hospital today. I'm not sure why it took so long but he did have to get platelets as well as ambisome.

Cameron felt good again except for pain in his ankles from lots of walking. So, after clinic, we went to Olive Garden for a bite to eat. We celebrated Father's Day without "dad". HA It is nice to be able to get out since his ANC has rebounded. We, of course, are still careful in public.

We are looking forward to having a good week for us as well as so many other patients we have gotten to know. We will be praying for Marcus tomorrow when he has to have the same surgery Cam had to remove fungus in one of his lungs.

I am thankful today for my terrific father, Mel DeVries and Ed's father, Hugo Dalene. Both have set wonderful examples as husbands and fathers.

Saturday, June 17, 2006 6:31 PM CDT

It was an uneventful day except we had to say good bye to my mom and dad. They had been here a week and needed to get home. It was great to have them.

We spent a few hours at the clinic getting ambisome. His chemistries are good. He is feeling really good today with just some complaints about his ankles hurting.

The Target House I parking lot is being resealed so it is closed for a few days. So in the mean time we are parking in the Target House II lot which is quite a walk for Cam but he surprised me and did it, just using my arm for a little support! He even went up 15 stairs to get there. That is progress. Then, of course, he had to do the reverse when we came home from clinic.

We had a thunderstorm blow through here a little while ago. It is kind of fun to watch when we are tucked dry and safe inside.

Here's to more "uneventful" days! Good day to all our friends and family!!! We love you all.

Friday, June 16, 2006 4:36 PM CDT

It was a long, but not too bad, day at the clinic. Cam had PT where he worked hard on leg strengthening and OT where he worked on increasing the strength and flexibility in his wrist. Then we had medicine room for 2 1/2 hours.

His counts were good today except he had to get platelets. The WBC was good enough at 1.8 and an ANC of 1,400 to start the chemo again tonight. Thank God for that! We need to continue to bombard those leukemia cells. All the chemistries, bilirubin, calcium, potassium were in the normal range.

He will be having a bone marrow next Tuesday to see if we are getting closer to getting remission.

The Morning Memphis tv show is airing at St. Jude next Friday so we didn't get there early today like I wrote yesterday but will do that next week.

I am thankful today that Cameron is feeling good, eating quite well, and gaining some strength every day. Thanks to Elinor for sending me a nice package. She said "everyone needs to get a package once in a while."

It is hot here...too hot to do much outside so we are hibernating inside. In the evening, it usually cools down enough to sit outside for a little while.

Enjoy your weekend....thanks for checking in.

Thursday, June 15, 2006 6:06 PM CDT

There is really not much to report except that Cam has been feeling good. He continues to have quite a few different aches and pains that bother him to varying degrees. He is eating some and keeping it down. He got his ambisome and that was all at the clinic. I took Mom and Dad on a tour of some of the sites of Memphis. We just drove by but didn't go into Graceland, the Peabody Place, the Fed Ex Forum, Mud Island, Beale Street.

Ed, Derek and Chad seem to be doing fine.

That's it for now. We will have a little more to report tomorrow because he will have PT, OT, lab work.

The local morning news is broadcasting live outside of St. Jude. We are planning to get up a little earlier than required to go watch the program.

Love and God Bless you all, Juli

Wednesday, June 14, 2006 5:15 PM CDT

I'm so sorry about no update yesterday. I wrote a long update and thought it went through until just now when I logged on and saw Monday's update.

It was an eventful day yesterday. Cameron felt better except some pain in his hip when he walked and a few smaller, manageable aches.

We met with Dr. Hale. He reported that the lab results from Friday showed that there were no blasts in the peripheral blood! There is almost certainly leukemia in the marrow but at least the chemo is working some. The ct scan from Monday showed that the pancreas is looking good except for a benign cyst that has been there, the liver looks the same and the lungs look good. There is no obvious reason for the abdomenal pain he has been having.

Another sign the chemo is working is that his blood counts have dropped dramatically. The WBC is 700, ANC less than 500, HGB was 8.1 and platelets were only 10,000! He got red cells and platelets yesterday. Because his counts are low, the doctor doesn't want to take any chances on the fungus flaring up so he has reordered the daily ambisome. That will require medicine room visits every day, again. Oh well, that's ok. Also, because the counts are low, the chemo is being stopped until the counts start to recover again. Hopefully that will be soon so we can keep attacking the leukemia!

Now, on to today. He has felt pretty good again. :) I pushed him around the clinic in a wheelchair because of hip pain but even that is feeling better right now. He had PT and OT (the wrist is improving).

Last night we had reporters and photographers from Newsweek here. They are doing a story on the Target House for an upcoming issue.

Mom and I went shopping this afternoon. Dad and Cam hung out and watched World Cup Soccer together.

That's about it for now. Please pray for the families of two little boys who lost their fights with cancer this week, 3 year old Will, www.caringbridge.org/ky/will and 5 year old, Jacob, www.caringbridge.org/fl/jaob. My heart just aches for them.

I'm thankful for the small improvements with Cam. He is even looking forward to eating some "chicken broccoli casserole" tonight....his request. Gotta go cook!

PS. Today marks the 17th year since my sister, Linda, went to be with the Lord. She fought an incredibly resistent leukemia (AML) and underwent a bone marrow transplant in Seattle. She passed away from complications from the cytomeglovirus. We continue to miss her all these years later.

Monday, June 12, 2006 3:58 PM CDT

This has not been a very good day for Cam. He is having significant more pain in his liver area as well as other bone, joint pain. He has thrown up twice, too, something he hasn't done lately. He especially had pain when he was walking around the clinic to the point of tears and not knowing if he could keep walking. Fortunately, it wasn't a long day at the clinc. He had PT and then a ct scan. That was all. The rest of the day he has spent laying down here at the apartment.

It is my mom and dad's 54th wedding anniversary. They are going out to celebrate tonight.

Derek took Chad to summer school this morning and was offered the job of being Chad's one-on-one assistant. So Derek will get paid for taking care of his brother at school. He did this same job two summers ago. They both seem to like this arrangement.

Please pray specifically for Cam's liver, for him to go into remission with as little chemo as possible, for his pain to go away and for me not to get too discouraged seeing him feeling so awful. It is tough!

Thanks for checking in. God bless you all.

Sunday, June 11, 2006 5:16 PM CDT

Cam has been pretty tired all day but he tried to do a few things with us. Stanley and Richie came over to the apartment around noon with stuff to cook out. We made use of the beautiful Tiger Woods Pavilion in the backyard and had a delicious cookout. It was pretty warm but it was comfortable in the shade. We all took it easy while Cameron rested and then we went for a ride. It doesn't take much for Cameron to wear out so we weren't gone for long. He walked quite a lot today without the walker.

Besides being tired, he is complaining of a lot of pain in his liver area. I am concerned that the chemo is causing the liver to protest! It was a concern when Cam relapsed that his liver might not be strong enough yet to tolerate chemo drugs. I will be anxious to hear what the doctors think is going on. He is scheduled for a ct scan tomorrow afternoon.

Stan and Richie left a little while ago. Their plane takes off from Memphis at 6:30. It was so good to have them come. I'm sure they are going away with a better understanding of Cameron's struggle and admiration for his courage. Thanks to Joanne for sharing them with us for a couple of days. And congratulations to Stan and Joanne's older son, Alex. He will be graduating from high school in a week or so.

Saturday, June 10, 2006 9:52 PM CDT

It has been a good, busy day. We slept in....that felt sooo good. Then this afternoon, Ed's brother, Stanley and his son, Richie came from the Hamptons on Long Island for a visit. We hadn't seen them in a few years so it is a treat to see them. They took us out to eat for a nice, late lunch. Cameron didn't feel up to eating because by that time, he was feeling a lot of pain in his back and liver area. After eating, we came back to the apartment to give him a chance to rest. When he woke up from his nap he felt so much better.

My parents arrived here this evening, too. We showed everyone around the Target House, then I took Stanley and Richie over to St. Jude to give them a mini tour. We are looking forward to another day with all of them tomorrow.

Mom and Dad were pleasantly surprised at how much better Cameron looks compared to when they were here last. He was still in the hospital at that time and barely able to sit up in the chair. Now, he is walking around with no walker.

Not much more to report today. Thanks for checking in.

Friday, June 9, 2006 6:52 PM CDT

It is an uneventful Friday night here at the Target House. I am feeling restless and would like to find something to do but Cam isn't feeling well at all. The chemo he has been taking is catching up to him or the leukemia itself is making him feel bad. He is complaining of aches in his wrist, back, ankle, ribs and stomach/liver area. He is more tired today, too. He had to get red cells for the first time in quite a while....another indicator of the chemo working. WBC is 3.3, ANC 2,900, HGB 7.6, platelets 65,000. I didn't get the differential so I don't know what the blast % was today.

Good News! The spinal results showed no leukemia in the CNS (Central Nervous System)!!! Calcium, bilirubin and glucose levels were all normal. We like to see that. He is still getting insulin in the TPN.

We don't have to go to the clinic all weekend unless he continues to feel really bad.

Thanks, Elinor for sending the Deluxe Yahtzee and to those of you who have sent cards and notes.

I am thankful today that Derek is home to help with Chad. He even took him grocery shopping today. That can be quite a challenge but he said Chad was pretty good for him. We are looking forward to having my mom and dad come again, tomorrow.

Enjoy your weekend

Thursday, June 8, 2006 5:32 PM CDT

It was another pretty good day. Cam worked hard in PT. The therapist is very pleased with the strength he has gained. That was the only thing we had at the clinic today. His wrist is still bothering him a lot but the brace on it seems to be helping a little bit. I cleaned the apartment and we still had the afternoon and evening ahead so we decided to go to a movie. We went to see "Break Up". I wouldn't really recommend it unless you like to see two people, cute as they are, just angry and yelling at each other.

Cameron walked into the theater just holding my hand, no walker or wheelchair. Of course, we have to carry his TPN in his backpack cuz it is still going 24/7. When we got home, he was exhausted and is now taking a nap.

We will have lab work drawn, PT and OT tomorrow. Thanks for hanging in there with us on this long, hard journey.

Wednesday, June 7, 2006 9:37 PM CDT

I am just recovering from a near panic attack. I wrote an update on this page and then it went blank. The whole web page was GONE! It was at least an hour before I got it back. I thought it was accidentally deleted for some crazy reason. I haven't even backed it up and use it as my journal of Cam's illness. Well, I am feeling better now , whew! I am so relieved it is back. Ed was in a near panic, too. Now that it is back he is backing the whole thing up in case we lose it for good some time.

Well, it was a good day overall. Cam's wrist is still bothering him a LOT. He got a splint/brace for it to keep it stabilized. The OT seems to think it is a tendon or ligament pull but it is possible that it is leukemia cells collecting there. We know it isn't broken because the x-ray was negative from yesterday.

He had a consult with the nutritionist and OT today. That was all. tonight, there was a cookout provided for the Target House families then we had some visitors....sort of extended family. I have a cousin, Mark, who is married to Jane. Jane's sister, Jennifer and her husband, Dwayne came to see us. They live here in Memphis. It is a small world and nice to have those kind of connections.

Cam is exhausted tonight but is generally doing well. If we didn't know he had relapsed, we would be very encouraged that he is gaining strength and eating, too.

Paul says in Philippians 1:6 "...being confident of this, that he who began a good work in you (Cameron) will carry it on to completion until the day of Christ." Praise God for all he has done and will continue to do for Cameron.

Thanks for checking in and God Bless each one of you.

Wednesday, June 7, 2006 9:30 PM CDT

Monday, June 5, 2006 1:25 PM CDT

We went to clinic only for Physical Therapy today. It wore him out riding on the exercise bike and he walked a lot with the walker going into the clinic and back out so he has really exercised today. I'm glad he isn't depending on the wheelchair so much because I hurt my back lifting it in and out of the van. I don't want to hurt it even more.

He didn't even have to get labs today. I misspoke yesterday when I wrote that all the other labs were ok. The calcium continues to be high but it came down a little so we were encouraged by that. We'll get labs tomorrow and he will have a spinal with chemo to rule out relapse in the Central Nervous System (CNS).

It is a beautiful day...quite warm but not so humid. We are going to try to get out and enjoy the sunshine.

Sunday, June 4, 2006 7:08 PM CDT

It has been a great day. Cameron has felt really good all day. Rick and Cindy went to the clinic with us. Cam had to have a lab check to look at his chemistries. His bilirubin is down to 1.2...only .2 above normal! The other numbers were all fine. We showed Rick and Cindy around the hospital, the Danny Thomas Pavilion and Memorial Garden. I wish you could all see it. It is a remarkable place.

We came back and rested a little while then went out to eat at Houston's. We had a delicious meal and Cam ate 1/4 a big cheeseburger! Then they had to head back to Arkansas. It was a short but very nice visit.

Derek is on his way home to Santa Fe. He will be so helpful to Ed and fun for Chad to have around. I think Blaze will be glad to have him to wrestle with, too.

I'm so thankful that Cam continues to feel good and gain strength. Who knows what this week will hold. Every day is a new adventure with some good and some not-so-good surprises.

Saturday, June 3, 2006 10:34 PM CDT

This is the first day since we have been here that we didn't have to go to the clinic. It was great to have a day off!

Cameron felt pretty good today. He is not feeling the effects of the chemo yet that he began last night. He will have his second dose tonight. He walked around with his walker and seems to be getting a little more steady.
We ate lunch at the Olive Garden and he ate pretty well without his stomach getting upset.

My brother, Rick and his wife, Cindy came from Fayetteville, AR for a visit. They have to go home tomorrow. It is just wonderful how many of our family and friends have given their time to come and spend some time with us.

Thanks for checking in and God bless you all.

Friday, June 2, 2006 2:31 PM CDT

Our meeting with Dr. Hale went well. Our greatest fear was that he would say there is really nothing more they could do. Instead, he has considered all the options for chemo therapy drugs that can be safely used for Cam. Most of them that have worked for him in the past are not good options now because of his other complications. For example, steroids stimulate fungus, vincristine is especially hard on the liver and cannot be used with posaconazole, alsparganese is hard on the pancreas. So he came up with VP16. It is only a single agent chemo so it will not likely put him totally into remission but will likely reduce the leukemia and give more time for the other areas to heal and then other chemos could be added. They will be watching the liver VERY closely because any chemo stresses his already stressed liver.

We asked him to please talk to Dr. Alan Wayne, the doctor we have been in contact with at the National Institute of Health at the National Cancer Institute. He called him immediately. They have a study that Cameron might be eligible for. It is a study that is looking at antibodies and their effect on leukemia. It is a phase I study and there have been very few people who have had this therapy. It would require a blood test to determine eligibility to even to look further at eligibility! The blood test would take 2 weeks and then if he is eligible, he would go to D.C. to do more testing. All that just to determine if he was a candidate!

Well, we decided to stay here and start the VP16 tonight. If there comes a time that we know this route is not working, we could still try the NCI study. We all agreed this was the way to go.

Ultimately, we know that no matter what decisions we make, Cameron's life is in God's control anyway. We are praying that the leukemia will respond to this chemo quickly and effectively and surprise everyone!!!

Cam is aching a lot. His back hurts from the BMB yesterday and his joints hurt, likely from the leukemia. BUT he is using a walker instead of the wheelchair today. He walked all the way from Rehab to B Clinic and back! That is a pretty long hallway. I was so surprised and pleased. He then walked from the parking lot of the Target House up to the apartment. He tends to get hard on himself so I told him he needs to take great pride in those accomplishments!

The bone density tests from yesterday showed that his bones are at the "fracture point". This means that it might not even take a fall to break a bone but could take just a hard bump or a wrong twist. The best things we can do to help build the bones is to do weight bearing activities and to
build muscles to buffer the bones more.

The calcium was down to 13.0 today from 15.1 yesterday. Bilirubin is still at 1.7. This chemo he is starting will bring his blood counts down which is what we need to also destroy the leukemia cells.

What a battle.....whew! Fortunately, Cam is sleeping well at night, the TPN is giving him the necessary nutrition until he can eat more and Cam still says "I know I'm not going to die, Mom. I just know it."

Those are the things I am so thankful for today. I am also thankful for doctors who are going to keep fighting for his life and not just throw up their hands and give up!!! Of course, I am always thankful for our "Team Dalene"...all of you who pray faithfully for him and our family.

Friday, June 2, 2006 8:35 AM CDT

we are meeting with dr hale at 10:00

Thursday, June 1, 2006 3:34 PM CDT

Cam had his bone marrow biopsy and the results are in. He has relapsed. I can't believe this on-going NIGHTMARE! All we know is that the marrow is 50eukemia and his blood was up to 4 The calcium was even higher today at 15.1 and the doctors are trying to figure out why that is happening....could be related to the parathyroid or that his bones are not absorbing the calcium as it should. Both are being checked.

I will be talking to Dr. Hale tonight to see what he is thinking about "what next." The big difference between other relapses and this one is that before, he was still relatively healthy. Now he is not....not even close to healthy with the liver, pancreas, fungus, etc......

I'll write more later. Pray for direction for us and the doctor.

9:30
I am not purposefully keeping you waiting. I just haven't heard from Dr. Hale yet. I take it to mean that he is probably researching what we need to do next. It is certainly not routine! There is no set protocol for this situation. Ed and I felt it was best to just wait and see what he recommends.

Cameron wasn't feeling good tonight. His back was hurting a lot from the bone marrow biopsy today. He did eat a little supper. He was just quiet but didn't want to really talk about the relapse. I prayed with him and just cuddled with him a lot. Derek's girlfriend from Springfield came here last night. We just met her for the first time. She seems to be a very nice girl. So we all played a game together and sort of got our minds off things for a while.

There really are no words to express the emotions involved in the last couple of days. One thing that remains is that we know God never changes in spite of our circumstances. He knows everything about us and will sustain us. He will give us strength and wisdom. He is still in control because we choose to surrender to His plan for our lives. And most of all He loves Cameron even more than we do. He hates to see him suffer. I am going to rest tonight knowing Cameron is in His care.

Wednesday, May 31, 2006 2:24 PM CDT

I don't even know how to write this. I don't even know what to think, much less write so I might ramble.

Last Friday, we got word that there was a "blast" or leukemia cell found in his blood work. I, of course was devastated but was told the other markers that would normally indicate another relapse did not seem to be going that way....the lymphocytes, the LDH, WBC....we were told that sometimes one cell just pops up when the marrow is suddenly producing a lot of new cells and then disappears and they never see it again. The only way to tell what really is happening is to do a bone marrow biopsy. Since we learned this on Friday afternoon before Memorial Day weekend, it meant waiting until Tuesday for the procedure. We couldn't do anything but wait so we tried to compartmentalize our emotions and thoughts and were hopeful that it wasn't the big "R". We went about our weekend as usual. The blood test results on Sunday showed zero blasts! We were cautiously optimistic about that.

Yesterday, I thought we were going to get some answers and was so disappointed that the procedure was postponed until today and the test results were not back to tell us if the blast showed up again or not.

Today, we showed up at 7:15 to get this day going. The lab results showed that there was one blast in the blood yesterday and 3 today. That is NOT GOOD!!! Then as Cameron was laying on the bed in the procedure room, doing routine pre-treatment stuff, the anesthesiologist was asking routine questions, etc. He learned that Cameron's calcium level was all the way up to 14.9. That can make anesthesia VERY dangerous so the procedure had to be postponed, again. Cam has never had a procedure with no anesthesia and he really didn't want to start now! He is being given an IV medication that will hopefully bring the calcium down. The med takes 4 hours to administer and then he has to get ambisome so the med room is our home today.

We are scared but trying to hold on. I've been fighting tears all day. Cameron's response was "Well, I'll just do whatever I have to do." I'm so glad Derek is here with us and I wish Ed could be here, too.

I have told the clinic that I NEED to talk to Dr. Hale. He sent a message to me that he will call tonight. I don't have any idea what he is going to say. I don't know what, if anything, can be done if Cam has indeed relapsed, again.

I'll write more when I know something. Thanks for your awesome support. We need it now more than ever.

Tuesday, May 30, 2006 3:43 PM CDT

This has been a sort of disappointing day. Any Tuesday after a holiday weekend is crazy at clinics everywhere. St. Jude is no exception. It was busy with lots of delays. We were expecting to have a bone marrow biopsy but it was changed until tomorrow. We were not given the part of the lab test results we were anxious to see because the pathologist hadn't gotten to it yet at 3:00. We were expecting to have an appointment with Dr. Hale but he is covering the inpatients this week so we saw only the nurse practitioner. Cam had physical therapy, worked hard there and then we were done for the day.

And then we finally got back to the Target House at 3:00 anticipating meeting the guest who was coming today and we got a notice that he cancelled due to illness. The guest who was coming is Tiger Woods! He was coming without any publicity and wanted only to meet with patients and families at the Target House. He didn't want the public or even the people at St. Jude to know he was here. I don't know if he is rescheduling his visit or not. It sure would have been fun to meet such a famous athlete.

Derek and Cam went to see a movie tonight and I am headed to the grocery store.

I am so pleased at how much stronger Cam is every day. Make no mistake about it, he is still incredibly weak and has low stamina but he is MUCH better than even a week ago when we came home from the hospital. Thank God for that!!!

Please say an extra prayer for Cameron tonight. It is going to be a big day for him tomorrow. I'll explain more later.

Monday, May 29, 2006 7:49 PM CDT

Happy Memorial Day. I know this day is designed to remember those who gave their lives in defense of our country. I also want to remember so many children who have lost their battle with cancer. It is way too many young people who have lost their lives in both cases. May God bless all the families who hold fond memories of their loved ones today.

It was another good day for Cam with a little better strength and a little bit of eating. Tonight, he isn't feeling great but a lot of it is that he is tired, I think. His bilirubin was 1.9...nice, calcium is still too high, all the other counts are in a good range.He will start back on one of the chemo drugs tonight at half dose. Then they will keep an eye on how the liver handles it and increase it to full dose when they feel it is safe to do so.

Kathleen had to fly back to Denver today. We will miss her. Cameron sent a "dirty" sock home with her to give to their dog, Sydney, so she will think of him. Cute. :)

We have a surprise guest coming to the Target House tomorrow. I'll write more about that tomorrow..... I'll be posting some new pictures soon, too.

Sunday, May 28, 2006 10:12 PM CDT

Sorry I waited until so late in the day to update. We had a good day, probably the best day in a long time. Cam felt good most of the day with occasional nausea, the clinic went pretty smoothly even though we had the usual long waiting time. While waiting, we took a walk out into the Danny Thomas Memorial Garden. It is a lovely little garden right in front of the hospital. It is a peaceful garden with waterfalls and beautiful flowers and is the burial place for Danny and his wife.

Cam's counts were similar to yesterday but the bilirubin did come down to 2.1 That's the lowest it has been in over a month. Calcium is still high. All the other numbers look good.

After clinic, we rested for a little bit, Kathy and I watched some of the Indy 500 and then I got a real treat. Larry and Kathy treated me to a full body massage at a beautiful spa. I had never had one before and really loved it. It was such a stress-reliever....so relaxing! The dizziness I was experiencing has gotten better in the past couple of days, since leaving the hospital. I don't know if it was caused by stress, lack of good sleep or what. I'm just so glad I am feeling better. Thanks for your prayers.

Saturday, May 27, 2006 4:57 PM CDT

It was better today at the clinic. His counts were ok. His bilirubin inched down to 2.5 so if it stays at that level for another day, he will get started back on low dose chemo. His calcium is too high so he has to take in more fluids. The danger of high calcium is that he can get kidney stones or crystals that can block the ducts....we don't want that! His glucose has been fine so we are reducing the insulin he is getting slightly. He didn't have any negative reactions so he got his ambisome and we left. It only took 4 hours...haha.

Last night, Cameron actually ate a whole piece of pizza and half an apple! He even kept it down. Today, however, he had a tummy ache from eating more than he was used to. His legs seem to be getting a little more steady.

We drove around Memphis this afternoon. It is hot, 93, and humid but we have air conditioning wherever we go. Thank God for that. It is great to still have Kathleen and Derek here. Thanks for checking in. Please, please, keep praying. We have such a long way to go!!!!!

Friday, May 26, 2006 5:25 PM CDT

It was a long, difficult day at the clinic. Cam just isn't feeling good today. Then he had to have an hour of tough pulmonary evaluation. He got half way through the ambisome infusion when he got slight hives on his arms and stomach so they stopped the medicine and gave him benadryl. Then he reacted to the benadryl and got extremely jumpy, restless arms and legs. Then they gave him ativan to help that! By the time he was settled down, he had to get the rest of the ambisome. What seemed like would be a routine day turned out to be frustrating.

Kathleen was there with us. Then we got a visit from my brother-in-law, Sam and his friend, Doug. They drove their motorcycles from Springfield, MO to see us and spent a few hours with us. It was GREAT to see them. More wonderful support from our wonderful family! Thank God!!!

I'll write more later. Right now, I'm exhausted, ordered pizza and waiting for the delivery.

Thursday, May 25, 2006 8:03 PM CDT

This was an unremarkable day at the clinic. He had an echo cardiogram to take an in depth look at his heart function. I don't know when we will get those results. Lab test results were good except I am a little discouraged that the bilirubin has stayed the same for 3 days. It was going steadily down until 3 days ago. It was still 2.8 today. Cam is still having some nausea and threw up twice this morning. We also get discouraged by that. I hope it will get better with time and healing of the gut. He seems to be getting stronger. I am encouraged by that and he looks great!

We are thrilled to have my sister-in-law, Kathleen, here from Denver. She arrived this afternoon and will stay until Monday. We gave her the grand tour of the Target House. It is such a nice place and a pleasure to share with others.

I am thankful today that my strong, sweet young son is coming through such an incredibly difficult challenge. I am thankful, too, that Kathleen is here with us. Thanks for checking in.

Wednesday, May 24, 2006 8:09 PM CDT

Our first day back to the clinic on an out patient basis went smoothly. He had physical therapy, an appointment with the physician's assistant and the medicine room. We also had teaching on how to test glucose levels with the fingerstick method. We were still back to the Target House by 2:00. Cam took a nice nap and then had a good evening. Cam ate a few bites of supper and then we all went for a walk outside in this hot, humid Memphis evening...(Cameron of course was in the wheelchair) Cameron laughed, really laughed for the first time since ...well, I don't know when.

Lab results were good. He is making his own platelets and red cells now finally. His bilirubin was up .1 but that can be just a difference in the lab testing. The ct scan results showed that the 4 fungus spots in the liver were smaller than they had been previously, the spots in the spleen were essentially gone and there were still some areas in the lungs that could possibly be scarring rather than fungus. The pancreas still shows that a large part of it was damaged pretty badly.

Thank God for this beautiful place to come "home" to. It feels so good to be here with Cam and Derek. We still miss Ed and Chad. Tomorrow is Chad's last day of school.

Tuesday, May 23, 2006 3:37 PM CDT

We are preparing to leave the hospital as I am writing! :)
The pharmacy is getting his medicines ready. We have a wheelchair and a walker to take with us to use until he gets stronger. We have to come back to the clinic tomorrow and every day after that to get his ambisome again like he has in the past. We will get his ct scan results then, too.

His glucose levels have been pretty steady so he will be getting insulin at a constant level in the TPN. He will have to have that 24 hours a day so he'll carry it with him in a backpack.

He walked down the hall again today. It tired him out again so we will have to watch it so that he doesn't get too exhausted.

Derek got here last night late so we didn't see him till this afternoon. My sister-in-law, Patti's friend and co-worker at Evangel University, Betty Schofield, was in Memphis so she came by to visit for a few minutes. Thanks, Betty for coming. It was good to meet you and thank you for your prayers.

Thanks to Morgan and Tanner for the wrist bands...courage, faith and strength!

I've got to go get us signed out!!!

Monday, May 22, 2006 6:26 PM CDT

It is 4 weeks ago today that Cameron had the sepsis episode and progress has been slow but he is getting much better.

This was a banner day. Cam got up and took a shower. It was a real chore and it wore him out but he did it. Later in the day, for physical therapy, he pedaled a bike for 5 minutes then walked out to the nurses' station and back. That is by far the most he has walked in a month.

His nausea has been less, he is drinking more but not eating yet. His counts are all still inching down closer to normal, bilirubin was 3.0 from 3.2 and C-RP was 1.5 from 2.2. It has been a few days since he has needed any blood transfusions.

Because he is feeling better, he is much more aware of his weakness and it is bothering him. He is also keenly aware that he has a long way to go because he hasn't even had the transplant yet! As soon as he is feeling strong again, he will get knocked back down. :( He is also feeling the walls closing in on him and he is anxious to get out. Dr. Barfield said he is going to try to make that happen tomorrow or Wednesday if possible. He has the ct scan scheduled for tomorrow. I'm anxious to see what that shows.

We had a great time here with Kimberley. She had to fly back to Santa Fe this afternoon. We'll miss her. Thanks to Storm, Calden and Walker and her 5th grade class for loaning her to us for a few days. Derek is driving here now so he'll be here later tonight.

When you pray for Cameron, can I ask for you to pray for me? I've been real lightheaded and dizzy for a few days. It doesn't seem to be going away. There are times when I feel like the room is spinning. I took my blood pressure but it was fair. I think it might be caused by stress and lack of good sleep. I'm not terribly worried but I could sure do without it!

Thanks for your prayers for both of us.

Sunday, May 21, 2006 5:31 PM CDT

The night went well with Kimberley staying here with Cam and I got a good night of sleep at the Target House.

Today has been good, still more small improvements in the lab numbers. He walked around more than he has before and we got him out in the wheelchair and pushed him around the floor. As he rolled by, the nurses all cheered for him like a real celebrity. The biggest challenge now, besides getting him stronger, continues to be nausea.

I am thankful to see the progress in the past few days. Thanks for checking on us.

Saturday, May 20, 2006 5:46 PM CDT

It was a pretty good day. The glucose levels have been steady all day. His blood pressure went pretty high at one point requiring a medicine to bring that down and he has had a headache off and on all day.

Bilirubin was down to 3.4 from 4.0 yesterday, C-RP was down to 2.2 from 4.7 yesterday. WBC, HGB and platelets were all acceptable.

I figured out, later the doctor concurred, that the arm and leg jerks, spasms, restlessness, whatever you call it is likely caused by the withdrawal from the continuous morphine drip he had been getting for a few weeks. It was decreased slowly until the last day he got it on a continuous basis was Thursday. He can still push the button to give himself a boost if he feels he needs it. He has been pushing it occasionally today to alleviate the muscle problems so he has been more comfortable.

He got up and walked several feet with me in the room. He is still incredibly weak but I do feel there is some improvement. He has been more talkative today, too which is nice.

Kimberley stayed with Cam for a few hours to give me a break. She is going to sleep in his room tonight so I can sleep at the Target House and get a good night's sleep. That will be a treat for me. Hopefully before long, Cam will be sleeping there, too, so he won't have so many interruptions during the night.

Thanks for checking in. Love to ya'll.

Friday, May 19, 2006 6:13 PM CDT

It has been a pretty good day. All the numbers are good except the glucose gave some concern this morning...it was high over 430. Then just a little insulin and it dropped suddenly so they were concerned that it would drop too fast. However, it has leveled out now. His blood pressure was pretty high twice today, too. Who knows why.

He has had a real restless feeling in his muscles today. It has caused him to be pretty uncomfortable. Even as he sleeps, his legs are jerking. He has gotten up quite a bit which is really good for him.

The experimental antifungal med that was discontinued after the sepsis episode will be started again tonight. It can cause liver problems so they will watch him closely to see how the liver responds. If the liver handles that ok, next week they will introduce low dose chemo, again.

My good friend from Santa Fe, Kimberley, came this afternoon for a visit. Her sister, Sue's family and her parents who live in Paducah, KY also drove down. It is great to have a friend from home here.

I continue to be so thankful for supportive friends and family. I don't know how we would have gotten through all this without it.

Thursday, May 18, 2006 4:45 PM CDT

Our surprise for today is that Cam's glucose went really high during the night, 460. He was given 2 shots of insulin and it only came down to 413. He got another shot with a larger dose and it still went up to 428. So, the doctors have this challenge to find the right balance.

All the other numbers were good including liver and pancreatic enzymes. Nausea is still a problem but he has been encouraged to try to eat bland foods. The doctors are going to try giving another antacid which might help the stomach/nausea issue. I sure hope so!

Physical therapy went ok, again. Cam gets scared because he is so weak he feels like he will fall. To us, he looked a little stronger as he walked around the room. I hope he gets more confidence along with strength.

My mom and dad left this morning. They will come back another time. It was great to have them.

Thanks for checking in.

Wednesday, May 17, 2006 7:35 PM CDT

Well, Cam's progress took some baby steps backwards today. His glucose level got pretty high so he had to have two shots of insulin. Dr. Hale is not worried about it. He just says we need to find the right balance and he expects with time, his pancreas will recover completely. His bilirubin went up slightly, too. This happens often when a patient gets red blood transfusions. Also the test could just vary a little so we were told it is not a concern.

He also fought nausea most of the day, threw up twice. He had not had that problem for a few weeks so it was discouraging for us. So he was told to hold off on the eating, just drink for now... the pancreas and stomach must not be quite ready for food.

He walked about 60 feet today outside of the room. He was pretty nervous about it but he did it. He is so stiff from laying in bed so much.

Because of the high glucose level, Cam had to pee VERY often during the night. Neither of us felt like we slept much all night. I hope tonight will be better. Fortunately for Cam, he was able to nap quite a bit today.

My dad treated me to Corky's BBQ tonight. Grandma stayed with Cam. I have the best parents. They are going home tomorrow but will be back later.

I am thankful today that Ed's company has been helpful and supportive of him during this stressful time for all of us. It makes all the difference in the world to have that support.

Praying for a better day tomorrow....no nausea, more strength, healthier liver and pancreas function.

Tuesday, May 16, 2006 3:39 PM CDT

I could just write "ditto" from yesterday. Everything continues to improve in baby steps.

Bilirubin 3.9 normal is .3 - 1.9
C-RP 7.9 normal is 0 - .6
WBC 9.1
He got more platelets and red cells today.

The insulin he has been getting in the TPN has been lowered considerably because he is making insulin in the pancreas.

He got up and walked around the room which is a big step toward regaining his strength.

He ate several spoonfuls of applesauce.

Like I said, just baby steps but all headed in the right direction.

Thanks for checking in.

Monday, May 15, 2006 6:57 PM CDT

It is three weeks ago since the "sepsis episode". Cam has made tremendous progress in healing since then. Today, again, showed progress in the labs as well as in how he looks. His blood counts are good, bilirubin down to 4.2, C-RP down to 8.5.

He had a chest x-ray this morning. It was difficult but not as challenging as last week. He was able to take off the heart, oxygen, pulse monitors that were attached by wires to leads on his chest. That is a big relief to get rid of those. The pain medication was also decreased. He has less pain and the medicine makes him drowsy so that's good, too.

He has been trying to eat a little but that is still difficult after a few weeks with no food. It will have to come gradually. He is drinking a little more with some variety, juices, milk and water.

He even laughed a little and talked more today, both indicators that he is feeling better...yeah!

So thank you for your prayers. Most of all, Thank God for his healing touch.

Sunday, May 14, 2006 1:41 PM CDT

HAPPY MOTHER'S DAY to all you dedicated, giving, loving mothers!

I wish I knew how to put one of the lovely graphics to say that but I'm just a plain text kind of computer user.

Cameron is about the same as yesterday, still tired, a little nauseated but looking much better. His counts continue to go the right way. He is off supplemental oxygen and his oxygen levels are fine. The doctor said his lungs sound considerably more clear, too. All of that seems to be pointing him toward the door. They are beginning to talk about discharge from the hospital as soon as he gains a little more strength...likely this week sometime.

I'm happy to be able to celebrate Mother's Day with my mom for the first time in many years. We are going to go out to eat together and leave Papa in charge of the patient here at the hospital.

Today I am most thankful for a faithful, God-loving, praying, fun, unflappable example I had for a mother. I hope I am as good a mother as she was to us. Ed was fortunate to have that kind of mother, too.

Saturday, May 13, 2006 6:30 PM CDT

I don't have much to report except that Cameron has had a good day. The numbers continue to go in the right direction, WBC a whopping 4.9, ANC at 2891! HGB is 9.1 and he will be needing platelets as they were at 16,000.
Bilirubin was all the way down to 6.0 so his color is much better with a rosy tint rather than that yellow/orange hue and C-RP is 10.2. Don't those look better than a few days ago?

Cameron continues to be tired. The doctor said that is no surprise. He compared the energy used to heal after a trauma like Cameron had to running a marathon. It is exhausting. I did get him up in the chair for over an hour and he gets a little more confident putting his weight on his legs each time he does it.

He still is pretty flat emotionally. But I got a kick out of him teasing grandma a little. She's always been fun to tease. It even brought a little smile to his face and a sparkle to his eyes which is worth a million dollars to me!
That is what I am thankful for today.

Friday, May 12, 2006 4:17 PM CDT

It was another day with some improvement. Dr. Barfield said he has been "very pleased" with his progress this week. The bilirubin went down to 7.8! ANC was 1000
platelets were good at 31 and the C-reactive protein was down a little at 12.1. He is coughing less and having still less pain. He drank some orange Fanta and water yesterday with no apparent negative reaction in the pancreas. He did have to get more red cells today.

PT was also pleased with the effort Cam gave today. He sat up in the chair for over an hour.

Mom and Dad got here last night around 5:00. It is not an easy drive for them any more but they made it ok. They were happy to see Cam and vise versa. With them here, I was able to get away for a couple of hours to do some laundry, etc. at the Target house.

I'm so thankful to have my parents here. They have always been such a wonderful, positive, steady influence in my life.

Thursday, May 11, 2006 3:43 PM CDT

Things continue moving in the right direction. Cam's ANC was up to 600! His hemoglobin and platelets were low again so he got even more transfusions. Bilirubin is slightly less than yesterday. The doctor says he still hears the fluid in his lungs but his pain is a quite a bit better today when he coughs or uses the breathing apparatus. That is a big step.

Cameron tolerated Physical Therapy a little better today. He showed slightly better strength and mobility getting in and out of bed.

This morning, we had a couple of visitors. Rusty Miller is a friend from our church in Connecticut and Glenn McKenzie, who used to be the youth pastor in that church but now pastors a church in McMinnville, TN. It was so great to have them come to visit, laugh a little and especially for them to pray over Cameron. Thanks Stephanie and Andrea and kids for sharing them with us for the day. My parents are driving here from Springfield, MO and should arrive any minute.

I am thankful for faithful friends and family who have stood by us in so many ways through this battle. Thanks!!

Wednesday, May 10, 2006 1:54 PM CDT

Most of the numbers are still going in the right direction.
Bilirubin is 10.5, glucose is 198 after getting a little higher dose of insulin in TPN, and the WBC was up to .5 and an ANC of 300! I like that. Platelets were down to 21 and HGB only 7.0 so he has gotten more transfusions of both.

Another lab test that we have been following is the C-Reactive Protein. It is a measure of concentration of protein that indicates inflammation. Most healthy people have a 0- .06 level. Cam's has been in the 14. to 18 level. Today it was, again, at 14.8 so he still has significant inflammation somewhere in his body, likely the pancreas and lungs.

He hasn't been out of bed yet but we'll have to get him up soon. I hope it will start to get a little easier for him. Yesterday, it was very difficult!

I got to go to the Target house today for a shower and to get our mail, etc. I hadn't left the hospital at all since Saturday.

The gastro-enterologist doctor was just here. He didn't have any new information. Just says that the pancreas is still inflamed and needs more time to rest before eating and the liver is improving slowly.

Thank you to the 8th grade class at ATC for the beautiful signed poster and picture. Cam loves them. We have them displayed here in his hospital room.

We are looking forward to my parents coming here tomorrow afternoon and Derek will be headed here soon too. He would have been here by now but, unfortunately, his car broke down and needed to get a new engine, OUCH! Always something.

I'll write again if anything new comes up. Otherwise, enjoy your night and give thanks for your children, that they are healthy. Good health in kids is something most people take for granted.

Tuesday, May 9, 2006 7:08 PM CDT

Today was just more of the same. Cam is weak, tired and just ever so slowly improving in his liver, pancreas and lungs. His bilirubin went down to 11.8, the lowest it has been for 2 weeks, he had the chest tube removed, glucose levels are still too high so they are increasing the base insulin they are giving him in the TPN. The good news is that the WBC was up to .5 and he actually has an ANC of 100 for the first time in a long time, too. Those white cells can help fight the inflammation, too. HGB was very low this morning, 6.6, so he was even more tired than usual until he got his cells. He had to get more platelets, too. Remember to go donate, if you can!

The doctors really want him to get up more, take deeper breaths, cough and use his little breathing apparatus, the acapella. BUT those are the things that cause LOTS of pain. So they have increased his pain medication so he will do what he needs to do to stimulate those lungs.

Our nurse today, we discovered, grew up in the same small town on Long Island where Ed's family lived, St. James, NY. They got all got their hair cut at Harry's Barbershop, ate at the Dairy Barn and stopped in at the 7-11. Small world.

I am thankful that Cam is resting comfortably and things are moving in the right direction.

Thanks for checking in.

Monday, May 8, 2006 4:27 PM CDT

It has been a fairly good day. Hopefully, Cam is just healing inside as he rests. He will be getting his chest tube removed tomorrow. It will be nice to have one less thing to deal with. He had another chest x-ray and it was about the same as yesterday. He still has a little fluid in his lungs. He is still on some oxygen support. The bilirubin count was about the same as yesterday. He had to have another shot of insulin early this morning. Other liver enzymes, chemistries are pretty good. Platelets were very low at only 7,000 again so he got a transfusion.

He got his new bed. It is nice, designed to give at the pressure points so he doesn't get any pressure sores. It also has a built in scale so he doesn't have to struggle so much to get up twice a day for the weigh in.

It was a work out for him to stand and get into a chair so they could change the beds out. He has a long way to go to regain that strength.

The doctor who is on the floor this week is pleased with how Cam has done in the past two weeks since his sepsis episode. He told us how very surprised he was to that it happened to Cam and that it was a very big event. It will just take time to heal. I somehow thought that the sepsis started from pancreatitis. He, however, said it was like a total body sepsis that caused the damage in the organs and then inflammation set in. It is all kind of confusing but then I think the doctors can't really explain exactly what happened or why.

So, here we sit vegging out waiting......and praying

Sunday, May 7, 2006 2:37 PM CDT

It was another day much like yesterday. The good news, again, is that the bilirubin took another dip down. This time to 12.8, down from 15.9. Nice drop....and no fevers. There isn't any more fluid draining from the lung. He had a chest x-ray that showed there is still some fluid there, however. The glucose took a jump up to 349 during the night so he had to have another shot of insulin.

WBC took a baby step up to .3, hemoglobin and platelets were on the low side so he will get infusions of both of those today.

Cam is trying to do some leg exercises in bed to try to strengthen them some. Even those tire him out a lot. Twice a day, he has to be weighed. It is so difficult, painful and causes difficulty breathing that they have ordered a bed that has a scale built in so he won't have to get up to weigh in.

Saturday, May 6, 2006 12:59 AM CDT

Cam's night was pretty uneventful. The good news is that his bilirubin dropped slightly again to 15.9 and he has no fever today. The bad news is that his glucose was very high at 335. He was given two shots of insulin and that brought the level down to 140 or close to that.

He is still in considerable pain when he coughs or is expected to move around very much. It was quite a chore to get him to stand up to get his weight this morning. When he just sits or lays in bed, he is fairly comfortable and alert. He watched the Chronicles of Narnia again today and actually stayed awake for the whole thing.

So far, I would say it has been a pretty good day. Thank God.

Friday, May 5, 2006 3:12 PM CDT

This will be a long journal entry. I'll do the short version first and if you want to read about more details you can read on.

What started off to be a day with the liver and bone marrow biopsies at 9:30 under "conscious sedation" turned into 3:45 and he is in ICU on a ventilator with a PICC line (Peripheral Internal Central Catheter) in his right arm.

Backing up, at 4:00 this am he woke up and was complaining of chest pain. The nurse contacted the doctor who came in to check him out. He felt it was caused by the pneumonia in his right lung causing the pain. He increased the pain medication and said they would keep an eye on it. He had to go to the bathroom, so I helped him and then sat him on the edge of the bed while I placed the urinal down. When I turned for a split second, because he is so weak, he lost his balance and he fell off the bed onto the floor. The nurse was there with me. He was scared but not really hurt. It was difficult to get him back on the bed though.

His temperature had now spiked up to 103 but the nurse said he couldn't have any tylenol because of the procedure scheduled for the morning. I put cool washcloths on his forehead to try to bring it down. Finally, at 8:00, it was still high so they did give him tylenol. It slowly brought the temp down to 101. The good news came that the bilirubin was down to 16.7 from 21 yesterday. YEAH!

At 9:30, they were ready for him in the x-ray dept where they were going to do the biopsy through the jugular vein in his neck, down the vein into the liver. Because he has pneumonia and has liver issues, at the last minute, the anesthesiologist decided to do full sedation with a breathing tube and ventilator because he was high risk for breathing problems with the other sedation. He told me his intentions and then I was asked to leave the room.

I got a visit from one of the doctors who said when they had the ultra sound helping them guide the line into the liver, they could see that he had a "moderate" amount of fluid in his right lung. They suggested that they should insert a chest tube to drain that fluid. I gave my approval for that.

I got another visit from one of the doctors who said they would like to leave a catheter in the jugular vein as another central line, similar to the femoral line he had had last week, to receive medicines through rather than needing IV's in the hands that needed to be changed every few days. I gave my approval for that, too.

Then I was told he had been taken to ICU because he is on the ventilator...standard procedure. He is the kind of kid who likes to know what is going to happen with no surprises. Well, he woke up with the extra tube in his neck and on a breathing tube which prevented him from speaking, with a chest tube hanging out of his side and in a strange room. He was confused and not happy. I reassured him that all of this was for his good. He seemed to relax but wanted to write me some notes so he tried.

Then, it was discovered that no one had "capped off" the catheters going into the jugular. It had been clamped but the catheter tips had not been kept totally sterile. So, Dr. Madden said we can't take any chances it will have to be pulled. We can't risk any infections so they pulled that line out.

THEN, since he was still on a ventilator and still under sedation, the ICU doc and Dr. Madden decided it would be a good idea to put a PICC line in his arm since the other one didn't work out. It turned out to be another major deal because it had to be done with the x-ray machine to guide the line. SOOOO, he had to be taken back downstairs, ventilator and all to have that done.

He is back in the ICU now, sleeping off the anesthesia. The doctor said when he wakes up more, they will pull the ventilator tube and he will more than likely be brought back up to the transplant floor this evening. If they keep him overnight, I will have to move all of our stuff out of that room into the room down here. I have lots of beautiful cards you all have sent on the wall up there I would rather not have to take down.

What a day. I'm exhausted but hopefully all this will bring about good results. We should get some of the results from the biopsy tests this afternoon.

Now I have caused you all to be exhausted from reading about our trying day. Go get some rest like I am going to try to do. I will try to post later if I hear any results from the tests.

9:45
We just got transferred out of ICU and got settled in the on the 4th floor.

He got his breathing tube removed around 6:30. As soon as he could talk, he expressed that he was mad and asked, "Why did I need that!!??" It wasn't fun to have that thing pulled.
He is still running a fever. It is 103.3 right now.

The good news...the initial tests on the bone marrow showed few cells in his marrow but there are NO leukemia cells. They have sent the aspirate sample away for further tests.

The preliminary liver tests show that there isn't any particular virus or disease in the liver. But there is a tremendous build up of bile that is sitting around in pools. It is not escaping through the ducts as it should. There is no obvious blockage in the ducts though. The explanation I got is that there must be infection there that is not allowing it to drain out properly. Maybe the drop in the bilirubin today is a sign that it is beginning to open up. I'm praying for that!

The day has been long and difficult. Cam has been a VERY SICK YOUNG MAN for a long time now and I am sooooo ready for things to start to look up for him!

He is resting quietly and comfortably now so I am going to do the same.

Thursday, May 4, 2006 11:30 AM CDT

I'm frustrated this morning. I haven't seen a doctor to ask my questions but Cam is having sharp, severe pain in his pancreas area again. He is taking pain meds and trying to sleep to deal with it. It reminds me of how he was feeling right before the Code Blue. His bilirubin went up to 21...not the right direction. I don't know what the doc will say about that. It is possible that just a few sips of apple juice was too much for the pancreas to handle.

His WBC went up slightly to .2, hemoglobin didn't go up much since yesterday so he was given another unit of red cells this morning. His platelets were at 13,000 so he also got a unit of those. He ran a fever of 102.4 last night...tylenol brought it down.

I slept pretty good except getting up to help Cam go to the bathroom. I was tired to the bone yesterday. It is hard to get sleep around here and almost impossible for me to get a nap. It is no wonder Cameron naps whenever he can. He never wants me to leave so when I do go out, I rush as fast as I can to get back to the room. The stress of seeing him so sick is unbelievable, too. It has been catching up to me the last few days.

Right when I was typing this update, Cam was sleeping soundly when the aide came in and said she had to get his vitals. He was laying on his right side and it has to be taken in his right arm. It was excrutiating for him to roll over. Then, she got his temperature at 101.6.

I've requested to see the dr. asap. I don't want to wait until late this afternoon to get some answers. I'll write more when I know more.

3:45
The doctor was in and thinks the pain is likely from the apple juice. He is now restricted to just ice chips again to give his digestive system more time to rest and heal. I'm glad to say the pain is less this afternoon although still more than yesterday. His temp jumped up to 102.4 this afternoon so that takes a lot out of a person, too. Poor guy.

Dr. Madden said all the doctors here who have discussed Cameron's situation are stumped at why his counts are still so low and why his liver is not doing what it should by now. The ultra sounds, ct scans, virus tests, lab results, etc. don't indicate why. The biopsy of the liver will be done tomorrow morning to try to come up with an explanation.

Ed went to the school's IEP meeting for Chad today. I have always been the one to do that, to discuss how his year has gone and to set new goals. He said it went fine. His teachers are pleased with how he is doing and have seen some progress in how much Chad seems to understand. Thanks to the team who works with Chad every day. He likes school and loves you all.

Wednesday, May 3, 2006 10:02 AM CDT

Cameron's night was quite restless. He was up and down quite a bit and ran a fever off and on. He is coughing a lot, too, because of the pneumonia. He coughed up some phlegm that was lime green! It was sent away to the lab for analysis. Dr. Madden was pleased that he is coughing more. He needs to get those lungs opened up more.

I just got a copy of his lab results. The bilirubin took a step down from 23.5 (I think) to 19.5. That is still high but it is moving in the right direction! Yeah! Other liver function tests are ok.

Glucose is high indicating the pancreas still isn't working exactly as it should.

The doctors are puzzled as to why his blood counts are so low. His WBC is down again to .1, platelets were at 15 so he got a unit of those already this morning and his hemoglobin was all the way down to 6.9! That is critically low. He will get red cells soon. His chemo has been held since last Monday and he is getting GCSF to try to boost white cells so they don't know why the counts are staying so low. He is just feeling lousy. I hope the red cells perk him up a little.

Thank you to our friend, David, from Hawaii for sending the Healing book. Also thank you, Carrie Underwood, for sending an autographed picture. That was a real surprise!

6:00
Although Cam didn't feel well all day, he continued to run a fever off and on and his stomach bothered him some, the doctors are still very pleased that things look like they are moving in the right direction. They even gave him permission to start on some clear liquids. He is drinking some apple juice right now. He's also sitting up in the chair. He can handle that for only about 20 minutes and then he tires out. We'll try to build it up a little each day.

The biopsy on the liver will be cancelled if his bilirubin doesn't go up. Yeah! He will still have a bone marrow biopsy on Friday.

Thanks for checking in. Please keep praying for that complete healing we need!

Tuesday, May 2, 2006 9:16 AM CDT

Cam already had another ct scan this morning. I didn't even know they were thinking of doing one until the aide came in and said we were going in a few minutes.

I ran into Dr. Madden in the hall. She said the ultra sound didn't show any blockage in the liver ducts which would explain why the bilirubin has stayed so high. They are going to do a biopsy of the liver later this week to try to find some explanation.

Today, his bilirubin didn't rise. It stayed almost the same at 23.5 from 23.9 yesterday. His platelets were down to 10 again so he is getting platelets now. WBC continues to be .2 and HGB was ok.

The night was pretty much the same as the last two nights.

I'll try to update later if we get any further news about the ct scan results.

4:00
The ct scan results showed that he has some pneumonia in both lower portions of the lungs. This is from being in bed for several days. He has to get up in the chair more often and do breathing exercises.

The other thing it showed is that the liver has the spots that are likely the fungus spots we already knew about although they were not larger. It confirmed what the ultra sound showed, that there was no blockage or any other obvious explanation for the high bilirubin. Because of that, they will do a biopsy of the liver as soon as possible. The pancreas looks pretty good.

He had PT and then really tired out. He is feeling crummy now, is running a fever of 101.5 and resting. Have I mentioned lately how much I hate this stuff. I want him to be WELL! I told him that and he casually said, "I will be. It's just going to take time."

I'm thankful that the bilirubun did not go up today and he generally felt a little better this morning. I am very thankful that he continues to have faith that he will be well again.

Monday, May 1, 2006 2:08 PM CDT

I have been waiting to see the doctors before entering an update but they are still not here yet. I'll just write what I know so far today and update later if there is any new information. His night was about the same as the night before....lots of getting up to go to the bathroom and the usual interruptions for vitals and blood draws, etc.

Cam's bilirubin is even higher today at 23.9. After getting platelets yesterday, the platelet count today was only 13,000 so he got some more this morning. HGB is up after the transfusion but only to 9.1. WBC is .2 and ANC is still zero.

He had physical therapy today. He did some very simple exercises and walked a few steps and really got tired out. He seemed to enjoy playing a portable air hockey game as he sat up for a while. He beat both the therapist and me.

I am frustrated because the wireless internet service we had at the hospital worked beautifully. Now, it isn't working at all and I am told it is a problem with our wireless card or something. I don't know much about it. I just like computers when they work, get frustrated when they don't. I guess I will stick to the dial up for now.

Gotta go to Ultrasound. I'll write more later if I have anything to report.

7:30

The Radiologist came in to see Cam when he was getting the ultra sound. He was surprised that the pancreas looked fairly good but was concerned about something in the liver. I reminded him that we have been working on getting rid of some fungus in there. He remembered that and didn't say much more. I'll have to wait for further interpretation from the other doctors.

Doctor Madden came in late while both of us were taking a little nap. She just reiterated that they are looking for the cause for the liver problems. She hadn't seen the ultra sound results yet. He got permission to eat some ice chips. That made him a happy. He is munching away as we watch the Yankees vs Red Sox. Sorry Papa and Larry :)

I am thankful that Cam's pancreas seems to be better and that he can get some relief from the dry mouth. He has also gained a couple more pounds.

Sunday, April 30, 2006 9:20 AM CDT

It was a pretty good night. He continued to use the oxygen support as he slept. He had to go to the bathroom about every 1 1/2 to 2 hours. Now he is missing that convenient foley catheter. Because he is so weak, he needs assistance to stand to go so I stayed in his room to help him with that.

I was quite astonished to get his blood counts this morning. His platelets were at 7,000! I have never seen it that low, ever. That is a critical level. He is getting a unit transfused now. He also has to get red cells. The HGB was at 7.8. White cells continue to be almost nonexistent at .1 with an ANC of 0. His bilirubin was up even higher at 21.7 from 20 yesterday. I hope and pray that starts to drop soon.

Derek got home last night and continues not to feel real well. He has a sort of acute pain in his lower right side. I told him he needs to go have it checked out if it doesn't go away today. All we would need is for him to get very sick, too, with appenticitis or something!

Whenever I see the nurse hang a bag of platelets or red cells, I whisper a "thank you" to the donors. Please consider donating these gifts of life if you don't already.
Someone will be very grateful.

8:30
Derek is feeling quite a bit better so he didn't feel he needed medical attention. Who knows what that was all about.

Cam has been lethargic today. He has done next to nothing. We did wash his hair and got him all cleaned up. That is quite a job for him and wears him out. He got some red cells and platelets so hopefully, they will give him a little more energy tomorrow. He continues to use a very small amount of oxygen support. He has complained of his stomach hurting. He describes it as hungry, or heartburn, or just feels bad.

Ed and Chad are still driving. They will be home around 9:00 MDT. Chad holds onto the parking permit for St. Jude and shows it to Ed repeatedly. It is his connection to us here and his way to let dad know he is thinking of us. Isn't that sweet? We miss them already.

God Bless each of you and thanks for your support and prayers.

Saturday, April 29, 2006 1:25 PM CDT

What a busy morning. We got Cam moved out of ICU into a room on the transplant floor. He is tired out now but tolerated all that moving pretty well. He got his femoral central line removed this morning as well as his foley catheter. Those are both good indicators that he is making progress. He did have to get another peripheral IV in his left hand to get his medications.

During the night, Cam slept well but his oxygen level dropped when he went into a deep sleep so he had a little oxygen support. His bilirubim is even higher today at 20 so he continues to sport the "yellow" look. I guess there is nothing that can be done for that except wait for the liver to heal itself. He has gained about 5 pounds. Some of that is fluids but some is likely from the TPN and no vomiting for the last 5 days! Yeah!

He is on just a very small bit of insulin, continues the three broad coverage antibiotics, still gets ambisome, the antifungal med. The experimental antifungal, posaconazole, had to be discontinued for a week or so because it can cause problems with the liver...we can't add that to the already existing complications.

His biggest complaint still is that he is still NPO, nothing by mouth. It is actually a treat when he has to swallow some pills with a sip of water.

Derek came down with a stomach or intestinal bug of some kind so he is staying at the apartment today and will head back to Springfield tomorrow. Ed and Chad will likely head west this afternoon, drive a few hours, sleep in Fort Smith, AR and drive home tomorrow night. Ed feels that Cam is stabilized now and will likely need him to be here more later when he actually gets to transplant.

When I went to get a bite to eat last night in the cafeteria, I saw Marlo Thomas. I shook her hand and told her my son was in ICU. She very sincerely said "God Bless him."

So we continue to pray for...1, to stay in remission, 2, fungus continues to resolve, 3, infection in the pancreas heals, 4, liver resumes normal functioning and 5, he gains strength. He is VERY weak right now.

I am so thankful for the progress he has made!

I can't get my computer on line in his room right now for some reason so I am typing this from the library. I need to get back. Thanks for checking in. Love to you all, Juli

Friday, April 28, 2006 5:11 PM CDT

I just saw two doctors, the transplant doctor and the neurologist. The neurologist said the MRI did not show any neurological damage in the brain or spinal cord. However, the examination shows some weakness in his legs and hips, a little in his arms. He said these could be from the vincristine, steroids or other meds he had for transplant. He expects them to get better with time.

Dr. Leung said the MRI showed significant damage to a large part of the pancreas but that there is enough not damaged that it should be able to function fairly well. Right now, it is functioning by producing some insulin. We won't really know how well it will work until he begins to eat and drink. Usually, they don't allow eating or drinking for 10-14 days to give the pancreas time to rest and recover but they might move it up a couple of days because he is recovering quite well. Dr. Leung said he has done a lot better than they would have thought originally and that "we are very pleased at how he is doing". Thank you, Lord, for answered prayer! The MRI also showed that there is good blood flow to the liver and kidneys. The enzyme numbers are much better. The bilirubin is high so he is jauniced, quite yellow skin and eyes.

I would say he is feeling better than yesterday. He is more awake but not thinking really sharp because of the morphine. The hardest part is that he is VERY thirsty. He is getting IV fluids but his mouth is so dry. He was allowed to only have about 5 ice chips this afternoon. He hasn't had anything else since the episode.

We were told Cam would be moved from ICU onto the transplant floor tonight but now they have decided to wait until morning. They are putting the insulin supplements he has been getting into his TPN so they want to keep a close eye on his glucose levels through the next several hours.

I am sooooo thankful that he is recovering from that awful episode and at a faster pace than the doctors expected. Continue to pray for a complete healing of all the organs.

Friday, April 28, 2006 5:11 PM CDT

Friday, April 28, 2006 11:43 AM CDT

I haven't seen Cam yet this morning because Ed spent the night there but I talked to him. His voice sounded a little stronger and Ed said the doctors that did rounds this morning were pleased that his stomach didn't hurt as much when they pressed on it. It has been extremely painful when they would touch it. I think that means the swelling is going down.

He was going for an MRI of the spine, brain and abdomen. We will get the results of that later today. I am believing for good results. I haven't heard about the chemistries so I will report those later. If you are interested, check back.

I've got to go for now. I'll write again after I get to the hospital and learn more.

Thursday, April 27, 2006 9:44 AM CDT

It was a quiet night. Sometimes the medications cause Cam to become a little disoriented but nothing too serious. The doctor was in. The ultrasound showed that the spleen is functioning well but they couldn't get a lot of information about the liver or pancreas. Tomorrow, he will be getting an MRI or the brain and spinal cord because of the unsteadiness he was having and now they are going to add the abdomen to get a better look at the liver and pancreas. Both are still producing high numbers so they are not functioning properly yet.

I can't write more now but I'll add more as we get more information.

4:00
Nothing too important has happened today. The transplant doctor came by and was just here a minute when he got called away on an emergency but he just said all the numbers are looking better and we just have to keep waiting. Cam's insulin continues to fluctuate a lot. His bilirubin is still high so he is jaundiced. He was moved to another room in ICU because he doesn't need as intensive watching and they needed the other room for a sicker child. He will likely be moved from ICU tomorrow or the next day.

He has been more alert today although he is napping now.

Thanks for your continued support, love and prayers.

Wednesday, April 26, 2006 11:44 AM CDT

Cam continues to be stable. There are not many changes. When his body shut down, the liver and kidneys also took some trauma and they are not back to functioning normally yet. Those chemistries are still high. Hopefully, they will resume normal functioning in time but we just have to wait. Waiting is hard but God will give us the patience as we need it. He has been running a low fever which is totally understandable with the infection still in his pancreas. The pain continues to the point that he will be getting a continuous morphine drip to try to keep him more comfortable.

We got him up in the chair this morning to get him cleaned up and the bed changed. It was quite a job but his legs were strong enough to hold him. PT will be coming in this afternoon to try to keep working his legs.

Ed stayed here in the hospital with Cam last night and I got a really good night's rest at the apartment with Derek and Chad. Tonight, Ed definitely needs the sleep!

I am so thankful to have the whole family here! There is strength we get from each other when we aren't separated by all those miles.

Thanks for checking in. I'm going to the apartment now to stay with Chad so Derek can spend time here with Cam. Sometime today, we will bring Chad here briefly. He gets toooo excited in this environment to stay any longer than a few minutes but he needs to see Cam and vise versa

4:30
No changes. We are still waiting patiently for God to do his work in Cam's body. Cam continues to rest a lot, dozes off and on throughout the day. He just had an ultra sound done here in his room. I don't know the results or specifically what the doctors were looking at. He still is weighing 99.0 pounds so at least he hasn't lost any, in fact he has gained 2 pounds.

Ed has had the opportunity to talk to the doctors today. I'm glad he has heard from them first hand rather than just from reports from me.

Chad just came for his brief visit. It went well. Cam was happy to see him and Chad was excited but not overly so. He was certainly manageable.

Tuesday, April 25, 2006 3:16 PM CDT

Well, the doctor just came in and gave us the ct scan results. The Physician's Assistant talked to me earlier but I wanted to talk to the doctor before I reported. This doctor is a surgeon and not the transplant doctor or the endocrinologist. We need to talk to them, too.

The news is bad. The scan showed that the blood supply was somehow cut off to the pancreas. It severely damaged all but a very small section of the pancreas. The pancreas does not restore once it is damaged. The whole thing is badly inflammed with infection. The first thing we have to do is get the inflammation healed up which will likely take a good week or two. The only way to do that is with the antibiotics he is getting and he cannot eat or drink ANYTHING for at least 2 weeks. He continues to get TPN and fluids in his IV. We are not even allowed to eat around him because it can stimulate gastric juices in his mouth that can upset the inflammation in his pancreas. He gets very thirsty but he isn't even allowed to swish water in his mouth!

The good news is that the fungus spots in the liver seem to be healing well. I want to hear Dr. Hale's interpretation of that, too.

The other good news is that the pancreas infection will not interfere with Cameron getting a transplant. Ultimately, we still have to get rid of the leukemia once and for all.

I will be talking to an endocrinologist who specializes in pancreas issues. Cam will likely be on insulin and other digestive enzyme supplements for the rest of his life because those are the functions of the pancreas. That is my VERY elementary understanding of it at this point.

He remains stable and is still resting a lot. Those are good things which promote healing. He will likely stay in ICU for a few more days.

Ed and Chad will be arriving around 5:00. Can't wait to see them.

Thanks for continued prayer and support. It means more than you can possibly imagine.

Tuesday, April 25, 2006 9:22 AM CDT

Cam was stable through the night. His potassium is low and his glucose is high. He needed some more platelets. Vitals has all been good and stable. He says he slepts ok. The pain continues in his belly area but they are trying to control it with morphine every hour. That makes him incredibly sleepy but he communicates with us when we need to ask him something. He had diarrhea a few times this morning so that is giving the doctors some more information about the source of the infection. He tried hard to give me a smile this morning when I came in the room. His sweetness is still there through all of this.

An amazing thing to me is after having several days of repeatedly throwing up, he didn't throw up at all yesterday. He had to drink a lot of contrast this morning before the ct scan and he kept that down, too.

It was quite an ordeal to get him down to ct scan with two IV poles, oxygen, monitors and 6-8 tubes going into him. They are real professionals here and they know what they are doing.

Derek got here around 10:00 last night. I can't tell you how good it felt to have him walk in here. I felt a weight lift off my chest to have him here. I haven't talked to Ed yet this morning so I don't know where they are or when to expect them to arrive.

I slept for about 5 hours in the parent room. I was exhausted but couldn't sleep any more than that. With Derek here, I might be able to take a nap later.

I'll write more when we get the ct scan results.

You are all incredible with your concern, support and prayers. I was blessed by the e-mails, voice mail messages and comments in the guest book yesterday when I felt so alone. Thank you.

Monday, April 24, 2006 3:44 PM CDT

Cam continues to be stable. His vitals are good, pulse, temperature, heart rate, temp, blood pressure. The electrolytes, blood counts, chemistries, etc are being watched VERY closely and adjustments are being made as necessary, i.e. he got a small dose of insulin because his glucose level was high. He got albumin, bicarbonate and is getting platelets right now. I'm sure there are other things but I can't keep them straight at the moment.

The doctor just came in and said the next 24 hours are crucial. We will be able to determine if he will get sick again or if the antibiotics are doing the job. He thinks in the next few days, we will be able to start to plan a little. In order to plan for the transplant, we have to
be sure 1. his kidneys and liver are in good enough shape after this episode to tolerate a transplant, 2. the fungus is gone, 3. the nutritional status is much improved, and 4. the leukemia is still in remission.

He is going to continue to try to organize how the ambisome would be given if we were to go home for a few weeks. It might turn out to be too complicated to handle at home and we might end up staying here....I don't know...whatever works out, we will do.

Ed and Chad left Santa Fe a little while ago and are driving here. Ed needs to be here to see Cam. Chad makes things a little complicated but we'll make it work so daddy can spend some time with Cam, too. Derek might drive over here, too if he can get away from school this last week before finals. It will mean a lot if we can all be together to pull for Cam.

I'll write more later. thanks for your prayers and support.

6:20
Since yesterday, Cam has complained of a lot of pain in his stomach. I thought it might be from throwing up so much that he was having cramping and sore muscles. Now the pain has gotten worse so more doctors have come in to try to figure this out. It could be the source of the infection. A few minutes ago, he had another x-ray of his stomach. It was very painful for him to have the film plate slid under him and then he had to lay on his side. It should help the docs figure out why it hurts so much. He is scheduled for a ct scan of the abdomen tomorrow morning at 8:00.

7:45 the surgeon came in and said the x-ray doesn't seem to indicate anything that would require surgery but we don't know that for sure yet. However, he did mention that the pancreatic enzymes are VERY elevated. The other symptoms seem to suggest pancreatitis, too. That is what they are leaning toward now. I read about it on the internet which can be good or bad. It sounds pretty serious. I asked to talk to the doctor on call to ask her opinion, if that is what the infection is.

Derek is on his way and will be here in a couple of hours! Yeah! Ed and Chad are traveling, too. Unfortunately, it is a much, much longer trip.

Monday, April 24, 2006 10:47 AM CDT

URGENT PRAYER REQUEST!!! Cam CODED this morning at 8:00am.

He is stable now in ICU but getting massive amounts of antibiotics because the doc feels he has a serious infection...sepsis.

I'll write more later but wanted to call for extra prayers immediately.

12:45 CDT
I got my computer working in Cam's room so I can keep in touch with you now. They still do not allow cell phones in ICU so my phone is turned off. I will check my e-mail often is you want to leave a personal message or leave a message on my cell phone...I'll get it when I can.

ljdalene@yahoo.com

I will try to journal the events of the morning later. Right now I am still sort of shakey...the effects of coming down after the adrenoline rush has hit me. I feel like crashing.

Cam is resting fine. His vital signs are stable...that's a good. He had another central line placed in his femoral artery. It has a 3 port access because he is getting so many medicines. They are loading him with antibiotics or all sorts to cover the gamit of possible bacterial culprits.

He handled the line placement procedure like a real champ. He was awake but didn't move a muscle as I held his hand. They usually ask the parent to leave the room but Cameron insisted that I stay. We are a great team.

More later.

Sunday, April 23, 2006 7:15 PM CDT

Today was only slightly better than yesterday. His stomach is still very upset and nauseated. The pain in his abdomen/liver area is better. He was awake a lot more than yesterday because I worked to keep him awake. I made him walk in the hall with me twice to get those leg muscles working and his lungs opened up. Since he slept so much yesterday, he was restless last night. I hope he sleeps better tonight.

His HGB and platelets were ok today but the white blood cells were down some so he got GCSF to boost those. His potassium is low although supposedly he is getting the vitamins and supplements he needs in the TPN. He has had to take 2 extra doses and now we are waiting to see if it is high enough for him to get the ambisome.

It broke my heart when he cried and said "I'm just a bum. I can't do anything but lay here!" I told him that he was in NO WAY a bum....he is a very sick young man and he is working very hard to get better. I can't wait till that day comes when he can run around, ride his bike, jump on the trampoline and play with the dogs!

Well, we'll see how the day goes tomorrow. One day at a time. (Or is it one moment at a time.)

I'm thankful that I can be right here with my precious and son, to give him hugs and tell him how much I love him. (and to hear him tell me he loves me, too, SOOO much)
I know it is incredibly hard for Ed to not be here with him when he knows how much Cameron is struggling.

Saturday, April 22, 2006 6:24 PM CDT

What a trying day. It was for me anyway. The TPN (Total
Parental Nutrition) was started last night. That is the good part. The bad part is that Cameron was sick to his stomach all day. He threw up 4 times already, hasn't eaten anything and has slept all day because if he woke up or tried to sit up, his nausea immediately got worse.

He had to get an IV in his arm because the TPN is going into his central line and he needed to get the ambisome, red cells and platelets. He wasn't happy about that but it had to be done.

I went to the Target House briefly to pick up a few things. While I was there, the girl whose family lives in the apartment next to ours was coming home for the first time since her transplant. Her transplant was on March 31 and she is doing well. That's what I love to hear. It was also nice to get out in the bright sunshine.

I hear that Daddy actually cut Chad's hair! That is a job I have always done but he was getting pretty shabby since I have been gone for so long. He has also been deep cleaning the house since we might be coming home soon. Then Ed called and let me talk to Blaze and Dimitri!! They reacted to my voice. How sweet.

Please pray with me that Cameron's stomach will be more settled tomorrow. I truly hate seeing him like this.

Thanks for checking in

Friday, April 21, 2006 6:20 PM CDT

Cam had the chest x-ray and the ultra sound of his abdomen this morning. I haven't heard any results of those yet. Then we were moved upstairs and Cam was admitted. He has been receiving his regular medicines and fluids. The TPN will start this evening. The neurologist came by and did an exam. He wants to do further testing because he feels there might be some damage to his spinal cord due to all the high level steroids he has had over the years. That would maybe explain the wobbliness and poor balance. Dear God, I pray that isn't so!!

He lost another pound so he is under 100 now. Blood counts were good, WBC 2.6 with ANC of 2600, HGB 9.4 and platelets were 66 after the transfusions yesterday.

Emotionally, Cam is fragile! He doesn't want to be here as an inpatient although he knows it is for the best. He is easily frustrated and oversensitive to the slightest things. He is sick and tired of feeling sick and tired. It breaks my heart but I feel that this is the right thing to do right now.

Thanks, El Dorado Elementary, for sending yet another gift box! You guys are wonderful to think of us and support us like you have been.

I hope you enjoy the new picture of recent visitors. They are Kaaren and Buck Mayfield, Jerilyn and Nick Osborn, Patti Osborn, Rachel and Justin Wells and my brother Larry DeVries and of course, the guest of honor, Cameron David Dalene!

Keep praying and we'll keep believing for Cameron's healing.

Thursday, April 20, 2006 8:50 PM CDT

I have some good news! The bone marrow biopsy showed no leukemia is returning and the ct scan of the brain was clear, no fungus growing there. We were pretty concerned about that because of some of his neurological symptoms, wobbly legs, etc. What a tremendous relief.

I got to talk to Dr. Hale about my frustration with continuing on as is, weak and throwing up, etc. I also talked to him about this new pain by the rib cage. It is right in the area of the liver. This is the plan we came up with. Cam will have another chest x-ray and ultra sound of the liver tomorrow and he will have a neurological consult with the neurologist to rule out anything Dr. Hale might not be aware of. Then, he will be admitted tomorrow to start the TPN or nutritional supplements through his IV (central line). He will have to be in the hospital for 3-4 days to monitor the TPN and to get the right balance for him.

If there are no surprises and he handles the TPN ok, we will likely be going home to Santa Fe for a little while. Dr. Hale feels strongly that Cam will gain strength, begin eating better and be more psychologically prepared for transplant if he can be home for a while....4-6 weeks maybe. He will still need to get ambisome IV every day to continue to fight the fungus, stay on the maintenance chemo to keep the leukemia away and will be monitored closely by the Albuquerque doctors, get nutritional supplements at home as long as he needs it. He will be flown back here to be seen by Dr. Hale every 2 weeks for 2-3 days. Although I know there are some unknowns and questions still but I agree that Cam (and I) needs to have a little home time. All of this is tentative but I think that is what is going to happen.

Today was a LONG day. He had to have the ct scan and then we were in the medicine room for 7 hours for meds, red cells and platelets. We didn't get back here till 6:30. Although he threw up twice this morning, he kept down a little food tonight. Yeah!

What a day. Cam is tucked into bed and I won't be too far behind. I feel good that he will be starting to get the MUCH needed nutrition tomorrow. I hope and pray his strength will increase along with it very soon.

I am SOOOOO thankful that the fungus has not spread to the brain and seems to be decreasing in the liver. I'm also soooo thankful that the leukemia has been kept away!!! What HUGE victories these two things are.

Thanks for your love and concern for our precious, wonderful son. It is such a comfort to know that he is not only Ed's and my son but he is a child of our loving God, too.

Wednesday, April 19, 2006 5:51 PM CDT

It was a frustrating day again. We started at the clinic at 7:15 and got home around 4:00. Cam had ANOTHER evaluation, a "Resting Energy Expenditure Pulmonary Function Test". This is designed to measure how many calories Cam expends while laying still. They were suspecting he was expending lots more calories than most kids his age and size. The results showed that he is exactly average so it doesn't explain the weight loss.

He has another new pain in his right lower rib cage area. Who knows what that is!!

No news on the bone marrow biopsy results yet.

He didn't eat anything at all, again today. He ate a little last night and threw it up. I can't tell you how frustrated I am getting with all of this. We/he has tried and tried to eat, drink the supplements, etc. It just isn't happening. In the meantime, he is continuing to wobble on his weak legs and sleep or at least lay down whenever possible!!! I don't want to wait another week to see how things are going and then meet with Dr. Hale again. I am hoping to talk to him and get some real nutrition in him. I can't take it any longer. He didn't even have the energy for OT or PT today. They are both supposed to help him build up stamina! Isn't that ironic?

The new pump worked better last night. It only beeped once during the night. Much better.

One thing I am feeling very good about and am thankful for is that Chad's graduation has been put on hold until next year. He was supposed to walk through the graduation ceremony in May although he will still attend school for 2 more years. It was becoming quite obvious I would not be able to attend because of the timing of the transplant. I was SAD about that but felt trapped. Now we can look forward to next year when we can all be there together to participate in that big event for Chad. I talked to Chad and his teacher, Sharon, on the phone today. He loves school thanks to his teachers and friends. I am so pleased about that! He even got to go horseback riding with the class today.

Thanks for checking in. I guess I needed to vent a little of my frustration.

Tuesday, April 18, 2006 8:22 PM CDT

There was really not much difference in how Cam felt today from the last few days. He doesn't sleep quite as much but is still wobbley on his legs and generally very weak.

He had a bone marrow biopsy today but I haven't heard the results yet.

When I met with Dr. Hale today, I impressed on him that I really want to know what is going on with Cam. He said how he is feeling could be a result of the marinol (the appetite stimulant he was on). Although he hasn't taken it for 5 days, it could still be in his system. It is actually a cousin to marijuana. To make sure it isn't something more worrisome, he has ordered a ct scan of his brain to take place on Thursday.

Today we got the results of the test on his stomach and duodenum. The doctor was checking to see if his stomach is emptying properly. There is an area just below the stomach that showed that the stomach content slows down there and doesn't pass smoothly. It can be explained by the fact that he has lost so much weight very quickly and there is a large artery that is usually cushioned by a layer of fat. Since he is so thin, it lays heavily across that section of the duodenum partially cutting off the flow. There is actually a name for that condition...I can't remember it right now. This can be corrected just by not laying on his back, especially for a while after eating. We'll see if that makes a difference.

The crazy fluid pump beeped a lot again last night. I got a new pump from the home health agency so hopefully it will be better tonight!!

Thanks for checking in.

Monday, April 17, 2006 6:37 PM CDT

I would say this day was a little better than recent days. Cameron has not thrown up all day and has eaten some. His energy was somewhat improved although he still walks very unsteadily and he still took a long nap this afternoon. He had to have some x-rays to see how his stomach is getting food and emptying it. I don't know yet what the x-rays show but they are supposed to help explain his vomiting and low appetite. His weight has stayed stable for a few days at 101. I'm just glad it hasn't dropped.

Last night was aggravating. He is getting IV fluids during the night. this is the 4th night. The first 3 went smoothly. However, last night, the pump beeped indicating there was air in the line. I fixed the problem and went back to bed. 45 minutes later, it beeped again, I fixed it again, back to bed...30 minutes later, it beeped again, I fixed it again, back to bed...an hour later, it beeped again, I half sleep-walked back into Cam's room and fixed it yet again. By this time, about 1/2 the fluids had gone through. I went back to bed and laid awake expecting it to beep again. It didn't beep for 2 whole hours. By that time, I just disconnected the crazy thing and told Cam to drink more water! Neither of us felt ready to get up when the alarm rang this morning.
I think the tubing was defective or something. I sure hope it goes better tonight!

Thank you, Ellen, for sending the knitting supplies! I am so anxious to try one of the projects in the book. A great big thank you to Chari Kaufman's class at El Dorado Elementary School, the school where I work, who held a bake sale to raise money for Cameron. They sent a very generous check and nice encouraging cards made by the students. We loved reading each one.

Thanks for checking in.

Sunday, April 16, 2006 8:00 PM CDT

It sure didn't seem like Easter today. It was just another day a lot like all the others. We had our time in the medicine room where Cameron slept. Then we went and got a bite to eat at Chili's. Cam actually ate some tortilla chips and about 1/3 a hamburger! Yeah! By the time we got back, he fell into sleep again for a few hours. He is sitting up with me now for a little bit before heading back to bed for the night.

Cam was nostalgic today, I guess because it was Easter. He was really missing our friends from Connecticut and New Mexico. He was missing Chad and Ed. He was reflecting on how we usually celebrated Easter in the past. I reassured him that we will have many more Easters to celebrate with friends and family.

I am praying for a better week, for Cameron to have better energy, strength and appetite. Of course, I'm especially praying for the leukemia to stay in remission and for the fungus to shrink down to nothing. I continue to pray for Jase, Spencer, Stephanie, Nick, Cole, Donovan, Andrew and so many other children who are fighting childhood cancer.

I am thankful that we serve a living God. The grave could not hold him but he is alive and active in our lives. Thank you, Lord.

Saturday, April 15, 2006 7:22 PM CDT

Cam's eating habits returned to previous days this week. He hardly ate at all and threw up a couple of times. He was still weak but didn't nap because he wanted to spend the time with Patti, Rachel, Justin, Jerilyn and Nick. They spent the morning at the medicine room with us. They played some games which made the time go a little faster.

We spent the afternoon here at the apartment until they had to leave around 5:00. He has been sleeping ever since they left. It was so great to have them here. They are so supportive and considerate of Cam, his needs and feelings.

We received a beautiful box of gifts from my school, El Dorado Elementary. I will certainly enjoy using the lotions, soaps and bath salts. I have already started one of the puzzles you sent. You guys are the best!!

Happy Easter to you all. I hope you have a special way to celebrate the Risen Lord!

Friday, April 14, 2006 5:43 PM CDT

It has been a better day for Cam. I didn't give him the appetite stimulant because the nutritionist suggested it might be also making him sleepy. Well, he was able to keep down a piece of bread with peanut butter. He had an hour of school and while he was in class, our family arrived. I showed them around the hospital a little and then they got to wait with us for the medicine room. :) fun, fun, fun.

Cam had to get ambisome, platelets, albumen (sp?) and methotrexate so we were in the med room for several hours. Patti stayed with Cam and I took the others for a quick mini tour of part of Memphis. While we were out, Cam called me and said he had a "hankering" for Quiznos!!! Well, we acted on that right away thinking he might lose interest if we didn't act fast. I was prepared for him to eat one or two bites and be done but he ate the whole thing! He slept some but was more awake than any other day this week. By the time we left the clinic, he was exhausted so he is napping now. The family went out to eat Memphis bbq to celebrate Nicholas' birthday. I clearly remember 26 years ago when he was born. Wow! I am getting old.

I am so thankful for our family who has rallied around us, for several dear friends who have called when I really needed a friend like Ercilia, Kimberley, Georgianna, Kathleen, Gloria, Velma...for the wonderful cards and thoughtful gifts that have been sent to Cam and to me. Thanks, Stacey and family for the absolutely ADORABLE doggy Easter placemats. How sweet!

Happy Easter or Resurrection Sunday to all of you. Remember to take some time to praise God today and every day.

Thursday, April 13, 2006 4:00 PM CDT

It was more of the same today. Cameron's stomach has been upset all day and he has not kept anything down. He continues to want to sleep and has difficulty walking because of the weakness. He had PT this morning and they got him to ride the bike for a little bit and did some leg exercises while laying down. Later, he spent an hour doing school work but couldn't really give it good attention. He is sleeping again now.

I was encouraged last night because he got up around 6:30 and stayed up for 3 hours. He even ate 1 1/2 egg sandwiches! I was so hopefuly today would be better based on how he was last night.

We have more family headed our way tonight. They will get here later so we won't see them till tomorrow morning. The people who are coming are my nephew, Nicholas and his wife, Jerilyn, my niece, Rachel and her husband, Justin and their mom, Patti. Nick, Rachel and their brother Nathan are my sister, Linda and Sam's kids. Linda passed away almost 17 years ago following a bone marrow transplant. Patti has been married to Sam for many years now and has been a great mom to my niece and nephews. It will be so good to see them even though Cam will not likely have much energy to really enjoy it as much as usual.

I am thankful today for another beautiful Spring day. It is actually almost too warm, in the 80's I am thankful, too for your continuous prayers. I don't know what we would do without them. God is our Hope at all times.

We want to thank the Project Angel Hugs for the wonderful Easter basket you sent. You do a wonderful job of encouraging our sick kids. Keep up the good work.

Wednesday, April 12, 2006 4:57 PM CDT

Today was a lot like yesterday. Cam slept most of the day and didn't eat much of anything. His blood counts are dropping a little because of the chemo he is getting. His Hemoblogin was 8.2. They usually transfuse below 8.0 but they went ahead and gave him a unit to hopefully give him a little more energy. He will likely need platelets tomorrow. ANC is still 1,900 with a WBC count of 2.2.

Instead of having to go to the clinic to get hooked up to fluids every night, I was taught how to program the pump so I can hook him up and get the fluids started myself. I'm back in the nurses' role but I have done this many times so it is no big deal.

He missed school today because he was sleeping and couldn't get himself awakened enough to concentrate on school work. The nutritionist came and brainstormed with us about what to do to get him to eat. We will just continue to try the appetite stimulants at the increased dose and the supplements for a couple more days. If it doesn't work, we will go to TPN, tube feeding.

Thanks to Gloria for calling just when I really needed encouragement last night. Thanks to our friend, David, from Hawaii for sending the tape. We will watch it tonight. I love to show the pictures of your dog to our visitors. He is one amazing dog.

I am going to run to the store while Cam is sleeping, AGAIN! I might even go to the knitting class tonight. It depends on how Cam is feeling

Thanks for checking in. I love to read your comments in the guest book. I get a lot of encouragement from them.

Tuesday, April 11, 2006 6:25 PM CDT

This was a weird day. Cam threw up almost as soon as he got up. Not a good start. He had a physical therapy eval first thing and he was so sleepy he could hardly focus on what he was supposed to do. Because he was feeling so tired, he was given a bed in the clinic to rest while we waited for his counts and approval for the medicine. He slept until it was time for the medicine room and then slept there. We came home for a couple of hours and slept. Later in the afternoon we had an appointment with Dr. Hale. When we got back here, he slept some more and is sleeping now.

Dr. Hale was pleased that the fungus spots were slightly smaller and there were no new ones in any of the organs. I was disappointed that there was not more progress. The transplant will definitely be delayed...probably another month. Another ct scan will be done in two weeks.

Dr. Hale gave us some suggestions on helping Cam to feel better. He will get fluids again tonight. He increased his appetite stimulant which also has a anti-nausea component. Hopefully, if he eats more, he will feel better. He is going to do a test to see if he is digesting food properly to try to address the nausea. If he can't start eating soon, he will be given tube feeding either in his line or through the nose.

I am fighting discouragement tonight. Mostly because it is so hard to see Cam so totally lethargic!! ...and almost wasting away in front of my eyes. I am discouraged, too, about the delay. Dr. Hale said we could go home for a while but Ed feels strongly we should, again, stay here where his doctors know best what he is dealing with. The way he is feeling, he couldn't even handle a trip right now. If we leave, we also lose our apartment and go back on a waiting list. Cam would also still have to go to ABQ every day for ambisome. So, we might as well settle in and forget about going home any time soon.

I am thankful that things are going well at home. We miss our guys a lot, though. God promises that he will meet all our needs, even the ones that seem like hugh obstacles right now.

Monday, April 10, 2006 5:51 PM CDT

Our day started early so we could take Larry to the airport before going to the clinic. Cam managed to throw up before we even left the apartment...not a good start. He was feeling very weak when we got to the hospital, weak enough that I had to find a wheelchair to get him around. He felt like he was almost ready to collapse.

We soon learned one of the reasons he was so weak and tired. His hemoglobin was low at 7.0. He was also dehydrated from throwing up. So while in the medicine room for his ambisome, he also got red cells and some fluids. He had his ct scan and by the time we left, he felt a little stronger. Unfortunately, as he came up to the apartment, he stooped to pick up a paper off the floor and he fell. He could hardly get up. Because of his weakness, he will be referred to physical therapy.

Tonight, Cam has to get fluids during the night. It has been a while since I have started fluids so we are going to the medicine room around 8:30 to get the fluids started and I will disconnect it 8 hours later. I really hope the extra fluids help to make him feel better.

I am so anxious and a little scared to get the results of the ct scan tomorrow. I hope and continue to pray that the results will show the fungus is gone. We'll see what Dr. Hale recommends.

I am thankful today that Larry could come visit even if it was a short stay. Thank you, Kathleen, for sharing him with us. I am thankful, too for the beautiful Spring day it was today. The bright sunshine helped to highlight the gorgeous flowering bushes that are in full bloom in Memphis.

Thanks to the Hog Club of Denver for sending Cameron a t-shirt. Thanks to the church kids from the Grand Avenue Baptist Church in Ft. Smith, AR for the beautiful cards you made for Cam and for your prayers for him.

Sunday, April 9, 2006 6:59 PM CDT

We spent the morning at the clinic. Cam was feeling pretty good. He even ate a little breakfast. After clinic, we went to Steak and Ale for lunch. Larry worked for that chain of restaurants until recently. He worked with the General Manager of this restaurant, Jason, so we met him. He very gracously treated us to dinner. Thanks, Jason. Cam was able to eat some salad, bread and a few bites of steak. Then we went to the Harley Store. By that time, Cam was exhausted! His legs could hardly carry him up to the apartment. He slept for a couple of hours and woke up feeling better. We enjoyed the rest of the evening watching a movie and laughing together.

Saturday, April 8, 2006 9:31 PM CDT

Cam has felt pretty awful most of the day. He fought nausea all day. Poor guy. He slept in the medicine room this morning and took a long nap this afternoon. He is still tired tonight.

The highlight of the day is that Uncle Larry flew in from Denver for a visit. While we were at the airport to pick him up, Cam had to throw up twice! Not fun at all. I hope he feels better tomorrow so he can enjoy spending time with Larry. I know he is just happy to have him here.

We are thankful tonight to have Larry here. We are looking forward to sharing our day with him tomorrow.

Friday, April 7, 2006 7:14 PM CDT

This day got started on shakey ground. Cam had a hard time getting his morning meds down. He fought hard until about 11:00 when he lost everything. After that, he seemed to feel better for a little while. He lost another pound....down to 103.6.

He got a dose of methotrexate this afternoon. It didn't seem to bother him. Not yet anyway. After the medicine room, we were interviewed by the ALSAC group that does fundraising for St. Jude. They video taped it and might use some of it for promotional materials...maybe even nationally! We'll see what comes of that.

Cam, although weak in his legs, felt pretty good after the interview so we decided to go to the Peabody Place to check it out. It is a famous landmark in Memphis. It has shops, theaters, restaurants and a hotel. We went in and watched Ice Age 2. It was a fun diversion for a couple of hours. Now we are just relaxing at the apartment and keeping an eye on the weather. There are tornado watches and a severe thunderstorm warning in the area. The city is pretty on edge after the deadly tornados that hit near here last Sunday.

Thanks, Aunt Elinor and Uncle Arnold, for the fun box you sent, again. Cam always enjoys your surprises. :)

Thursday, April 6, 2006 7:09 PM CDT

It was an unremarkable day. Cam was back to his old eating habits, not eating without forcing himself. He threw up this afternoon while waiting for the medicine room. He has lost more weight. He's down to 103.5. I ran into Dr. Hale in the hall and he said the appetite stimulant might take another day or two to really kick in. He was also started on a low dose which can be increased if it this not effective. So we wait and see, again.

I am beginning to get to know some of the other families around here. We run into the same people at the clinic and at the Target house. I am not naturally outgoing so it takes an effort for me to initiate a conversation with strangers. But I enjoy talking to people once the ice is broken. Everyone has an incredible story about their children; some more heartbreaking than others. Our story has scared a few people who are early in treatment for leukemia. They don't want to believe their child could face 3 relapses. I sure hope none of them have to face that either!!! In fact, St. Jude has about a 90% survival rate for children with ALL. Unfortunately, there is still that other 10% who have to continue past the first round of chemo and deal with transplants, etc.

Tonight we are praying for Jase, Cole, Spencer and Quintilles as well as the regulars we have prayed for for months from the ALL List.

Wednesday, April 5, 2006 6:18 PM CDT

We were excited this morning. After taking the appetite stimulant, Cam ate a good breakfast and really enjoyed it. Usually, he eats begrudgingly knowing that he has to eat. When the medicine wore off, he didn't want to eat during the day, again. Tonight, he took the pill before supper. It didn't work the same magic. He ate some supper and then almost immediately threw up. We'll have to see how it goes.

He had school and medicine room and was pretty much dragging again today. I think it is from the chemo he got yesterday. We have met a few patients who live here at the Target House who have undergone haplo transplants. Most of them are doing really well. One little girl is dealing with some pretty bad graft vs host skin rashes. We just have to get to transplant as soon as possible. Please continue to pray with us that the fungus will GO AWAY and never return. We are so blessed to have an army of people who believe in prayer behind us. Even Cam's doctor told us he believes in the power of prayer. He has seen the difference it makes in a person's life when dealing with life's toughest challenge...a very sick child.

I am so thankful for this incredible place, St Jude, for the incredible dream Danny Thomas had so many years ago and for all the people who helped it become a reality. I'm thankful for the dedicated people who work here, too.

Tuesday, April 4, 2006 5:55 PM CDT

Cam had another good day. He felt good most of the day. We had an appointment with Dr. Hale. He continues to think Cam is doing well except for the fungus and his weight issue. He put him on an appetite stimulant he will start tomorrow. He has dropped from the 50th percentile for his age/height to the 25th in just a month or so. He ate fairly good today.

He will have another ct scan next Tuesday. If the fungus is not all gone or MUCH improved, there will be another delay in the transplant. Because the new antifungal medicine has a bad interaction with vincristine, one of the chemos he has been getting to keep him in remission, two other chemos have replaced it, 6mp and methotrexate. He has taken both of them before. He will also continue the PEG shots. He got them today, again. YUK

That's about it for today....just the chemo changes and the addition of the appetite stimulant.

I hope you enjoy the new picture. Some of them are not very clear or too dark but you can get an idea of the people who have been here to see us. Kyle, Derek, Ed, Chad, David and Kenton.

Thanks to you who have recently sent cards, pictures and gifts and to those of you who have called. We really appreciate your thinking of us in those ways.

Monday, April 3, 2006 7:12 PM CDT

It was a good day although it started off a little shakey. Cam threw up all of his morning medicines. He had OT 8:00, had his blood drawn and had lost another pound. He is down to 47.6 kilos which is about 104 pounds. He has been up as high as 126. Then he took a little nap up in the library on the comfortable couch. After he woke up, he felt much better and stayed that way all day!

His hemoglobin is only 8.2 so it is low but not low enough to transfuse. ANC was a whopping 5,600! All those white cells have to help to fight the fungus!!

He spent some time in the teen room this afternoon and is there, again, tonight. We ate the delicious dinner provided for the Target House families catered by the famous Corky's bbq.

A little piece of good news is that St Jude reversed their policy of no cell phones! Yeah! That will especially help us when Cam is inpatient.

Ed and Chad had a good weekend of getting caught up around the house. Chad didn't have school today so Daniel was staying with him. Derek is focusing on getting a couple of big term papers done. We miss you guys!

I am thankful that Cameron has had a good day! God is faithful to meet our needs. Thank you, Lord.

Sunday, April 2, 2006 5:35 PM CDT

We had to say good-bye to Kenton and Kyle this morning. They came to the medicine room with us and had to leave from there. Thanks to Teresa and Ashley for loaning them to us for a few days. Maybe you can all come next time.
Thanks, too for the books and puzzles you sent.

Cam's day was about the way it has been for the last week or so. No particular pain but needs to rest a lot and struggling with his stomach being anything from unsettled to nauseated to hungry but can't eat. We went to the mall for a few minutes but that was about all it took before he said he didn't feel good and really had to go. Oh well, we tried.

I'm thankful that we got to spend time with Kenton and Kyle. I'll try to post some pictures of some of these visitors soon.

Saturday, April 1, 2006 8:16 PM CST

We enjoyed having Kyle and Kenton hang out with us at the hospital this morning. The morning went pretty smoothly. The rest of the day we just hung out here at the apartment, played games, and the boys played some pool. While Cam took a nap, Kenton and I started on a 500 piece jigsaw puzzle. By the time he got up, we were almost done with the puzzle!

There were no big differences with Cam. After he had a nap, he perked up for a while.

Kyle and Kenton were surprised at how much hair Cameron still has. They expected him to be bald. I still don't know why he hasn't lost it. He's going to need a haircut soon if the chemo doesn't take care of it first.

Thanks for checking in. We love you.

Friday, March 31, 2006 7:39 PM CST

It was another long, tiring day at the hospital. We got there at 7:30....too early for us. We didn't leave until 3:00. He had to have some pulmonary function tests and then before he could start the new experimental, antifungal medication, he had to have another EKG. So I signed the consent for him to get this new med. It is called posaconazole and is supposed to cover a wider spectrum of fungal infections.

I am still concerned at how LOW ENERGY Cam is and how WEAK he is. I don't remember him being this way even after the first or second transplants. The infectious disease doctor said that can be caused by the medicines he is taking, the chemo he had or due to the fungal infection itself. Also, when he is making a lot of new white cells, it can be tiring. Yesterday, his white cell count was up to 4.0 with an ANC of 3600! That is really high for him. His hemoglobin was 8.4 which is kind of low so it can contribute to his fatigue, too. He lost a little more weight, too.

We are expecting Kenton and Kyle to be here soon. We're looking forward to spending the weekend with them.

I am thankful that God is still in control even when things do not look like they are going in the right direction. We can continue to trust Him.

Thursday, March 30, 2006 8:21 AM CST

Yesterday Cameron "just didn't feel good" most of the day.
I'm sure it was from the chemo on Tuesday. Last night he had a temperature of 100.3. Anything over that requires a call to the doctor and a visit to the hospital. I think that, too, is from the chemo. He is better today with no temp.

He is in school this morning already and I'm in the library. We should hear some news about the ct scan. I'm so anxious to hear the good news we have been praying for.

We are looking forward to a visit from my brother, Kenton and his son, Kyle this weekend. They will be driving here from Springfield, MO.

I read a quote this morning that I really like. It said,

"We enter this world crying and everyone around us is laughing. Try to live your life so that at the end of this life, you will leave smiling and everyone around you will be crying."

2ND UPDATE FOR TODAY
We got the results of the ct scan. It showed that the areas in the lungs are nearly gone as before. The spleen and kidneys areas are reduced BUT the liver has a mass that is significantly, or "markedly" larger than before..."enough to cause concern". The specialists came and talked to me and said the only thing they can do is keep treating with medicines at this time. They have a new experiemental drug that has been used on only 18 patients here at St. Jude but it has had promising results in getting rid of the aspergillus fungus. The doc said this is a fungus that comes mostly from the Southwest part of the country so she wasn't surprised to hear that we are from New Mexico. We will have to sign up for this study and then start tomorrow or the next day. This could mean another set-back in getting to transplant unless the fungus responds rapidly to this new medicine.

I am trying hard to not get too disheartened by this news but honestly, it is hard. Cam doesn't seem to be bothered. Then, again, he may not completely comprehend the seriousness of this awful fungus. I know of one kid who lost his fight against leukemia because of fungus infections after a transplant. I honestly don't believe that will or can be the case with Cameron but that is how serious this stuff is.

Please keep praying. That's our BEST weapon against the fungus!

Wednesday, March 29, 2006 9:50 AM CST

Our internet server was down at the apartment last night so I couldn't update. We are here at the hospital library this morning. He already had his ct scan of the sinuses, chest and abdomen.

Yesterday, we had another long day. Cam started off the day with sharp pain in his back near the incision site. The PA took a look at it and just decided to treat the pain with meds and to see if it gets better or worse. The pain lessened through the day and is much less this morning. Then we waited for the medicine room for 3 long hours and then were in there for another 2 1/2 hours. He missed his school session but his teacher came up to the med room and told us he wasn't worried about it. Cam is doing well in all of his subjects.

He got the ambisome, microfungun, vincristine and 3 PEG shots. He amazes me. They don't allow the numbing cream, EMLA, here to numb the skin before PEG shots. They think it can mask a possible allergic reaction. Anyway, Cam took those shots without even flinching. Afterward, they hurt really bad as the medicine was spreading into the muscles more.

A highlight of the day was we spent some time with the visiting dogs. They have 5-6 wonderful, beautiful dogs that come every week to visit. We got to pet them and cuddle them. One was a Golden Retriever much like Blaze. His name is Kicker. Another gorgeous dog that I fell in love with is a Cavalier. I forgot his name.

We had tickets to go to the Grizzlies NBA game. I was really looking forward to it because not only am I a big basketball fan, but it was something fun to do to break the routine. Well, Cam just didn't think he felt up to it. It would have required quite a bit of walking from the van to the seat, etc and he just isn't very strong. I was more disappointed than I thought I would be.

We are both feeling a little emotionally tired. I guess that is to be expected from time to time. It was also a let down when Ed and Chad had to leave. We have to continue to look to God to give us the strength we need every day.

Thanks for checking in. We love you all. (Or should I say ya'll) :)

Monday, March 27, 2006 6:45 PM CST

It was a good, although long, day. We saw Dr. Hale. He seems to be pleased with how things are going for Cam. We made him aware of his appetite issues and low energy. He just feels they will improve with time. If yesterday and today are an indication, that is beginning to happen. He ate good today and gained some weight. He was tired this morning and when we got the blood counts, it was obvious why. His hemoglobin was 7.1 so he had to get red cells today. Also, his albumin was low so he had to get an infusion for that, too, over two hours. Albumin is what helps the body maintain the "osmotic pressure" that causes fluid to remain in the blood stream rather than leaking into the surrounding tissues.

His ct scan that was scheduled for tomorrow was postponed until Wednesday. Tomorrow he will get another round of chemo, vincristine and PEG shots.

Tonight, Cameron is down in the Teen Room watching a movie with other teens from the Target house. That is good progress socially for him and is indicative that he truly is feeling better.

I talked to Ed. Their drive home was going smoothly...much better than the drive here!

I want to say thank you to the class at El Dorado Elementary school for sending the beautiful cards they made for Cam. Thanks to all of you who continue to offer your encouragement...especially to those of you who are going through this battle with your own children and grandchildren. I pray they will win their battles without complications now or in the future.

Thanks, John and Michele, for watching our furry boys while Ed was gone!!

Psalm 29:11 The Lord gives strength to his people; the Lord blesses his people with peace.

Sunday, March 26, 2006 6:28 PM CST

Ed and Chad left a couple of hours ago to head home. It was great to have them here even if it was for a short time. I think it was good for Ed to experience first-hand how Cam is doing after not being around him for a few weeks. It is not possible to really understand from long distance. And I got my share of big bear hugs from Chad!!!

Cam is feeling quite a bit better today. He has eaten probably twice as much today than he has been. His energy has been a little better. When he feels good, his mental status is more upbeat, too.

We are going to watch a movie and get ready for a new week. The ct scan will be on Tuesday so we'll get a report on the status of the fungus. I am praying that it is ALL GONE. Will you all agree with me for that?

I am thankful for the time we were together and praying for them to have a safe trip back to Santa Fe. Thanks to the Svendsons for giving them a place to sleep again tonight.

Friday, March 24, 2006 7:22 PM CST

Ed and I switched roles today. He spent the day with Cameron at the clinic and I stayed at the apartment and hung out with Chad. It was good for all of us to have a change of pace.

Cam's counts are still good but his hemoglobin is still only 8.1 so that explains some of his fatigue.

We went out to the Wolfchase mall tonight and walked around and ate at the food court. It was fun to get out.

I am thankful we can get big hugs from Ed and Chad instead of just talk to them on the phone.

Thursday, March 23, 2006 6:26 PM CST

Ed and Chad drove all night through heavy snow in Oklahoma. They arrived in Fort Smith, AR at 6:00am and slept at our friends' motel. They slept till early afternoon and are due to arrive here any minute. Boy, will they be happy to get here!!

Cam's day was pretty routine with no big surprises or set backs.

Thanks for checking in.

Wednesday, March 22, 2006 9:17 PM CST

This was another rather routine day. Cam's potassium was a little too low to get the ambisome so he had to take an extra dose and wait to get the medicine, again.

I'm a little concerned that Cameron continues to struggle to eat, has painful heartburn at times and has thrown up at least once or twice a day. He tires out SO easily, too and needs one or two naps a day. I wish I knew why he is continuing to struggle with these things. He is supposed to be gaining some strength before he heads into transplant. I hope to talk to Dr. Hale this week to see what he thinks. I guess it could be explained by the medicines he is taking.

Ed and Chad left home headed this way about 10:00. However, they ran into a MAJOR traffic problem. Interstate 40 was shut down in New Mexico for something like 8 hours!!!!! There was ice on the roads and about 15 trucks were involved in an accident. They sat for hours not going anywhere. Talk about frustrating!!! They finally got going around 6:00. Those of you who know Ed are not surprised that he is determined to drive as far as he can tonight. I would have turned around, gone home and left in the morning. I just pray they are safe as they cover the 1000 miles to get here!

Tuesday, March 21, 2006 6:08 PM CST

There is really not much to report today. Cam had school, lab check and medicine in the med room. No surprises except that he lost a little more weight. He has thrown up the last two mornings when he takes his medicine. Then he can't keep anything down so he goes to the clinic on an empty stomach. I think that is why he weighs less. he is eating a little better, I think.

We are looking forward to Ed and Chad coming on Thursday. They will be driving tomorrow and Thursday. Chad is on Spring break this week. Daniel has been staying with him yesterday and today. Thanks, Daniel.

Monday, March 20, 2006 9:29 PM CST

It was a better day at the clinic. We didn't have as much waiting, wasted time. Cam had OT, school, got his meds, and got his lab results. His counts continue to be good and his chemistries, (potassium, etc.) were fine today, too. He is maintaining his weight better. He is still taking the high calorie boost drinks and trying to eat as well as he can.

We went to the grocery store and Cam was able to walk through the whole store with me. It wasn't easy but he did it.

Thanks to the staff at El Dorado for the nice card. It was good to read all your comments and know that you are thinking about us. Thanks to all of you for checking in. We appreciate your love and concern.

Sunday, March 19, 2006 6:28 PM CST

I was a much better day at the clinic today. There wasn't as much waiting time and another thing that made it better was that we had some visitors. Some friends of my parents, David and Lynn Bowman, were driving through Memphis and asked if they could stop and see us. We visited in the waiting room for a while and they prayed with us. They are very nice people and it was thoughtful of them to take the time for a visit.

After clinic, we had some time and went out to the Germantown area. It is a part of Memphis we hadn't seen yet and were impressed with the area.

I was reading in Philippians 4 today and was reminded by the Apostle Paul that we need to find a way to be contented in any circumstance life throws our way. Even if we don't think we can do that ourselves, God can give us the ability to find that contentment, peace and joy.

I am thankful that God has helped Cameron to feel a little better today. Please keep praying for him to gain more strength.

Saturday, March 18, 2006 8:55 PM CST

It was another long day at the clinic. Cam gets exhausted!! His potassium level was borderline so he took some more potassium but that wasn't the hold up. We realized after waiting for over 4 hours for the medicine that the hold up must been that he cannot get the medicine any sooner than 22 hours from the last dose. He got the dose late yesterday so it delayed the medicine today. Of course, we figured that out on our own. We were not told why there was such a long delay. If we had known, we would have left and come back. We are definitely going in later tomorrow although he is scheduled to be there at 8:45.

Cam had a relaxing bath tonight and the last of the steri-strips from the incision on his back came off. The scar is big but it looks clean and well healed.

I am thankful today for our home away from home. It is so great to have a nice place to come to and just relax.

Friday, March 17, 2006 6:17 PM CST

This was another stressful day. It started off ok with labs drawn and an hour of school. Then we got the lab results which showed that his potassium was too low to get his ambisome so they ordered some potassium. That took 30 minutes. Then he had to wait an hour to recheck his levels....waited 45 minutes to get the results....still low...waited for more potassium....another hour to recheck his levels...another 45 minutes to get the results....the levels were ok. Then it took another 1.25 hours for the medicine room to call us to actually get the medicine. We thought it would be a fairly short day but it turned out to be another marathon. It is hard and exhausting, especially for Cam.

He was disappointed, too, because guitar lessons were offered here at the Target house at 4:30. He wanted to try that out. Then there was a pool tournament at 6:00. We didn't get back here until that time and haven't eaten yet. Besides, he was just too tired to participate.

We learned that Derek is the preferred donor as we thought. The only problem is that he has to be here for a week and it is toward the end of his semester at school...term papers, finals, etc. He said he will do the best he can to work it all out. Now the transplant is projected to be around April 20 or 21st.

We are trying to unwind, watching a little of the March Madness basketball and resting for another day tomorrow at the clinic.

Thanks for checking in and for your prayers and support. We are constantly aware of friends and family who are out there pulliung for Cam.

Thursday, March 16, 2006 6:26 PM CST

The day started off pretty good although it was early, 7:15. Cam lost another 2.2 pounds but we got some more supplements so we will just focus on getting those down.

We had an appointment with Dr. Hale. He said the fungus in all areas is much better. He has even said Cam can take one of the antifungal meds orally so he will only have to have one IV med/day over one hour. That will reduce our medicine room time a lot. Yeah!

Then Cam had his bone marrow biopsy. He is usually sedated with versed and ketamine. The anesthesiologist today wanted to use versed and fentanyl instead. Well, it didn't work as well and Cameron was awake through the whole procedure and says he could feel it, too. He was pretty upset and sort of resented it all day.

Later, we waited and waited to be called into the medicine room. It caused us to be delayed and he missed school. One good thing is that the pastor of our friends, Kaaren and Buck Mayfield from Paducah KY, came and visited us. It was so thoughtful of him to spend that time out of his busy schedule to see us even though he doesn't even know us.

Cam later had OT, we went grocery shopping and came home to rest. Cam was exhausted and slept for about 1 1/2 hours.

I am thankful today for continued progress with Cameron.

Wednesday, March 15, 2006 4:38 PM CST

We had a good day at the clinic. Cam lost another pound and we had a consult with the nutritionist. She was just a little concerned that he has lost several pounds but said he is fine if he doesn't continue to keep losing. She gave him some nutritional supplements, pediasure, ensure, and a couple of others to try.

We got a vague report on the ct scan. The report was that the fungus is looking a little better. We have an appointment with Dr. Hale tomorrow so we will get more detailed information. He also has a bone marrow biopsy tomorrow.

He has been feeling considerably better today. There is a spaghetti dinner served tonight here at the Target house so we will go check that out.

Tuesday, March 14, 2006 5:09 PM CST

My brother, David, headed home this morning and we went to the clinic. Cam had the ct scan, got labs, had school, got his meds and we were home by 4:00. I am cooking here in the apartment and we don't have to go out any more tonight. There is a knitting class offered here that I might try.

The only problem is that Cam's appetite continues to be a concern. He lost 2.2 pounds again today. The nutritionist will meet with us tomorrow to discuss some ideas on what we should do.

It was great to have David here...thanks bro for coming.

Monday, March 13, 2006 7:55 PM CST

We enjoyed a leisurely morning for a change. It is great having David here. He always makes us laugh when he tells stories about his kids. They are great kids. Cam didn't feel good most of the day. He had OT and school and participated in both like a champ, though. Then he got his medicine at the med room. We came back to the apartment and ordered some Papa John's Pizza (in honor or you, Larry). It was just what we wanted. Cameron even ate 1 1/2 pieces. Yeah! Then he felt like he was going to be sick cuz it was too heavy on his stomach. So far so good. He's kept it down.

Cam's counts are good. They are WBC 3.1!! ANC 2500!! Platelets 57,000 and HGB 9.2.

He is scheduled for another ct scan tomorrow and for another bone marrow on Thursday. I had understood from the doctor that they were going to wait on both of those tests until next week because he didn't think there would be much difference already this week. I guess he changed his mind. So he will get a ct scan tomorrow. Pray for surprising results!! I would be great to move ahead sooner than they anticipate.

That is about it for today. Thanks again for checking in.

Sunday, March 12, 2006 7:41 PM CST

It was good to sleep in and be lazy this morning. Later we drove around Memphis and became a little more familiar with the main streets around the city. Then off to the clinic. Unfortunately, we were there for 4 1/2 hours.

Cam is feeling punky tonight....I'm not sure why if he is exhausted or what. He has lost 2 pounds in one day. The doctors are not going to be happy about that. He is trying to eat but has no appetite and gets full very quickly.

Now we are looking forward to my brother, David, coming here any minute. He drove in from Tulsa to spend a couple of days with us. thanks to Terri, Sierra and Aaron for sharing him with us for a few days!!

.

Saturday, March 11, 2006 7:40 PM CST

There isn't much to report today. One good thing is that the IV med he has to take tw ice a day was changed to one that is administered once a day. Now he can get the ambisome and the microfungeal (sp?) at the same trip in the middle of the day and we won't have the 8am and 8pm this week. This change was made because the one he was taking can interfere with the vincristine he had yesterday. This change will only be for a week and then we will be back on the morning and evening schedule, again.

We used some of the free time to drive around Memphis a little. We went down by the Mississippi and walked around a little. It was warm and humid....near 80. That humidity is really noticeable to us after getting used to the Santa Fe desert.

Cam made more of an effort to eat today and he had a little better energy. He had little or no pain. All in all it was a better day. I am thankful for that.

Friday, March 10, 2006 5:02 PM CST

Cam had to get his chemo, vincristine and 3 PEG shots, OUCH!!! this morning. He also got his regular voriconazole and then had to get some red cells so we had a long morning. We came home for a brief time and then he had to get an MRI of his hips and knees. Now we are having another break before going back tonight. He has felt fairly good all day but I am a little concerned about his low appetite. It is likely caused by all these meds he is getting. He is still very low energy, too.

Derek drove back to school. It took 4 1/2 hours again, not bad. We will miss him a lot.

Thanks for your prayers and support. God is good and he continues to give us all strength, day by day, to do what we have to do.

Thursday, March 9, 2006 5:07 PM CST

The day started off kind of rough. Cam didn't feel good and then threw up before we even left the apartment. By the time we got there at 8:15, he felt a little better and gradually improved through the day. We had an appointment with Dr. Hale about the ct scan yesterday. The lungs look good. The aspergillis fungus that was in the lungs is almost completely gone. The canada (sp?) fungus that is in the liver and kidneys has improved but the areas in the spleen have gotten worse. That is likely because he has a lot more white cells that are going to fight the fungus which makes it show up on the ct scan now when he didn't before. The meds he is on are effective against both types of fungus. The plan is that he will likely receive the antifungal treatment for another month before proceeding to transplant.

We were give the option of staying here to get that treatment or going home. Ed and I talked about it and feel Cam is better off here in case other issues arise. Also, we are not sure who would administer the twice a day IV meds, Santa Fe, Albuquerque? They are in a good routine at home and us coming home might really upset Chad's comfort again when we would have to leave in a couple of weeks. Cam is in a good routine here, too. He is receiving the school tutoring and Occupational therapy as well as the essential medicines. I have very mixed feelings about it. I would love to be home for a while but know I couldn't give Cameron the level of attention he needs if I was pulled in all the directions home requires.

Cam had OT and school today and we had the surgery consult to check the incision. It looks good and there are no stitches that need to come out, it is just steri-stripped on the outside.

Derek is leaving tomorrow so we thought we needed to try out Memphis' famous barbeque restaurant, Corky's, before he left. We enjoyed that for lunch....yummy! Derek has a couple of friends here in town so he has spent some time with them when he wasn't hanging out with us in the med room! We'll miss him but know he will be back.

Gotta head back to the med room soon. Thanks for more cards and pictures!!

Wednesday, March 8, 2006 3:56 PM CST

This is the second update of the day. I have a little more time to write now.

Cam continues to improve gradually in his strength, less pain, range of motion in his shoulder/back and his appetite. It is all slow progress.

Yesterday when we saw Dr. Hale, he said we are just waiting to see that the fungus is clear. After there is a clear ct scan (they will do one each week), he will likely go inpatient a week or two later depending on the bed availability. So far, he is still in remission and will get chemo to keep him there. He had a ct scan today so we should get those results tomorrow.

He started school yesterday. He meets in the school room 3 times a week with the teacher. He had OT again and we continue the 8am and 8pm for the antibiotics in the medicine room.

Derek finished his testing for a potential donor. I think he is planning on going back to Springfield tomorrow. They are down in the teen room playing pool right now.

I am thankful today that Derek and Cam have this time together. They are both great kids.

Wednesday, March 8, 2006 7:25 AM CST

Our internet server was down here at the apartment last night so I couldn't update. Sorry if you checked yesterday and there wasn't anything new.

I'll write quickly and more later cuz we are in a hurry to get to the clinic.

The bone marrow biopsy was clear. He is going to get a boost of chemo, vincristine and PEG shot, today to insure he will stay in remission. He has the ct scan today to determine how the fungus is doing. Dr. Hale expects it to be reduced but would be very surprised if it was gone.

Gotta run.

Monday, March 6, 2006 9:40 PM CST

Cam had a fairly good day...the normal meds in the am and pm, his counts were good so he didn't need any blood. Some of the meds he takes and the anesthesia from the surgery can cause some constipation so that has made him pretty uncomfortable. He got something to help that. Hope it works quickly. He started occupational therapy to help him stretch out the shoulder and back area from the surgery. It hurts and is stiff so this should help him restore that movement.

He has been pretty stoic today saying he just doesn't have any energy. All of this takes its toll on him, understandably.

Derek had his appointments. He has to have a physical on Wednesday and then I understand the decision will be made about whether he or Ed will be the donor.

We will see Dr. Hale tomorrow. We'll get the bone marrow results and discuss the plans and timing for transplant, I think.

I want to say a special thank you to those of you who have sent cards, gifts and pictures to Cameron. We are saving them up to put up in his transplant room. You are all so supportive. Keep up the good work, it helps.

Monday, March 6, 2006 6:47 AM CST

We had a marathon session at the medicine room last night and didn't get home until 10:30. The good thing is that Derek arrived in town at 7:00 so he kept us company while we were there. It was a 4 1/2 hour drive for him from Springfield, MO. It is great to have him here.

Yesterday was pretty quiet, Cam napped a lot and he did a little school work. Then a friend came by to visit. This friend, Aubrey Cole, worked for my father several years ago and I knew him casually. He has been working for St. Jude for the last ten years as one of their main fundraisers. We had a nice visit and look forward to seeing him again and meeting his wife. He even brought us some homemade lemon cake!

I woke up this morning to Cameron saying he has a "running bloody nose". So we packed it and laid him down. It has stopped now but I'm sure that will mean we will need platelets today.

Derek has a few appointments today as a potential donor. We're going to have a full day. I'll write more later.

Saturday, March 4, 2006 9:59 PM CST

I was very worried this morning about 4:00am when Cameron came in my room crying that his back and chest hurt and he couldn't breathe very well. I gave him his pain medicine and prayed for him and he went back to sleep. When he got up later to get ready, he felt better but his back was still hurting pretty bad. We realized it is the pain from the compressed vertebrae in his back rather than the incision pain. I think he has been more active since being released from the hospital so he is having that pain again. I think the chest pain is related to that. We will talk to a doctor about it if it gets any worse. Otherwise, we'll wait until Monday when we see a dr anyway.

Later in the day, after the morning meds and labs, he felt good enough that we went to a Mall close to the apartment and walked around a little. It was good to see something in the real world. We ate out, too, but Cam ate a few bites and was full. He was disappointed he couldn't eat more.

He got his night meds and now we are ready to go to bed to start the routine over again tomorrow.

Thanks for writing in the guest book and for calling. We need that contact out here in this "foreign country". we love you all.

Friday, March 3, 2006 5:48 PM CST

Cam had his morning medicine at the clinic and then had a bone marrow biopsy. We don't have those results yet. His counts were fair, ANC 800, WBC 1.0, HGB 13.6!!! great and his platelets were 28,000.

He felt a little better and a little stronger today. There are many fun activities going on around here at the Target House and at the clinic/hospital. So far, Cameron is not interested in doing any of them. I hope he starts to feel better soon so he can enjoy some fun, social activities before heading back into the hospital.

Here is our new address

Target House 1
1811 Poplar Ave.
Memphis TN 38104
Room 403

The phone number to our room is 901-545-0403

Gotta go back to the hospital

Thanks for checking in!!!

Thursday, March 2, 2006 3:34 PM CST

How wonderful it was to be here at the apartment together. We didn't get here until around 10:00 last night after he got his evening dose of vorconazole, an anti-fungal medicine. Then we had to be at the clinic at 8:00 this morning. We were seen by triage right away but then waited 1 hour and 45 minutes to get into the medicine room for his morning dose of vorconazle. We came back here to the apartment and rested, unpacked, toured this building and will head back to the hospital at 7:00 for 2 more iv meds. One of the meds takes 2 hours to drip and the other one takes 1 hr 20 minutes. It is still better being outpatient, though!

Cam is feeling slightly stronger and less pain in his back where the incision was. Every day makes a big difference.

I am thankful for this beautiful apartment we have been blessed with to call our home for now and for Cameron being here with me.

Wednesday, March 1, 2006 4:59 PM CST

Good News!!! First, the fungus in his right lung has decreased significantly, not completely, with the medicines. The ct scan also showed there were some fungal spots in the kidneys, spleen and liver but those spots were not new and are likely going away with the meds, too.

More good news!! Cam is being discharged tonight! I went and started getting moved into Target house and bought some basic groceries.

Cam's day started with the ct scan at 7:15, then had appointments in the eye clinic and dental clinic as a part of the pre-transplant work-up. Then he had quite a work out with PT. He was exhausted by the time they were done.

So as an out-patient, we are going to be very busy. He has to come in twice a day every day at 8:00 am and 8:00pm for iv antibiotic, antifungal meds and for labs. He'll be good unless he runs another fever. He is close right now at 100 degrees.

Blood counts look good, WBC 1.0, HGB 8.8, Platelets 73 and an ANC of 900.

So I am thanking God for the fungus decreasing and that Cam is well enough to be discharged. He will feel so much better.

We can still get mail here at the hospital but I will also post the address at the Target House tomorrow.

Thanks for your prayers!!! Keep it up.

Tuesday, February 28, 2006 7:34 PM CST

It was another day of non-stop activity. Cam had 2 chest x-rays that he had to go downstairs for, he had PT, and the school teacher came by and will start working with him this week. The biggest thing was he got the chest tube pulled. It was sort of traumatic but the anticipation was worse than the actual thing. He also got his iv pain medication taken off. He is taking it by mouth as needed now. He is moving better, too, but still with pain in his back. The awful, acute pain he had in his chest yesterday has been gone today.

I got oriented to the Target House and will move in tomorrow. It is a BEAUTIFUL apartment building with 2 bedroom apartments provided for patients and families by Target Stores.

Tomorrow will be a big day when he has his ct scan of the right lung. It will show if the fungus has decreased or if he will need surgery on that side, too. Dear God, I hope not!!!!! It will also determine if he can be released as an outpatient soon to come join me at the apartment. Pray...pray...pray!

There is a Mardi Gras party out in the hall for the BMT patients. We will go join the fun for a little bit.

Monday, February 27, 2006 5:01 PM CST

It has been another busy day. We have people in and out of the room almost constantly. The night was pretty disrupted, too. He is getting so many fluids that he had to pee every hour or so and he needs help to do that. Then every 2 hours, he had the respiratory therapist come in to do breathing exercises.

Today, it has been all the different doctor specialists including the Infectious Disease for the fungus, the Pain Management, the Nurse Practitioner for BMT, the BMT on-call doctor, the surgeon, and we hope to see Dr. Hale. Then there was the x-ray technician who did another chest x-ray at 6:00a.m., social worker, the physical therapists, dietician, the Child Life Specialists, the nurse assistants for vitals, the nurse with lots of different medicines and last but not least, the housekeepers. Sound busy?

We had two other people we were very glad to see. Kimberley Weem's mother and step-father, Kaaren and Buck Mayfield from Paducah, KY drove down to see us. It is about 2 1/2 hours. They stayed with Cam while I ran a few errands. Thanks, Kaaren and Buck, for coming!!

Cam is feeling significantly better and has been moving around better, thanks in large part to morphine. He still has the chest tube in his lung. He ran a fever last night up to 102.4 so he was put back on the antibiotic they had discontinued. They are planning on doing the next ct scan on his lungs on Wednesday to see how the right lung looks. We are praying the spot there is gone and they won't even have to consider operating on that lung, too!!!
There is a bone marrow biopsy scheduled, too. Now that he is getting higher blood counts, they feel they can get a better look at the cellularity of the marrow.

These are the things we specifically need to pray for today.
- the fungus to go away completely
- no fevers or other infections
- rapid healing of the incision from the surgery
- strength for both of us, physically and emotionally
- the leukemia to not return during this delay

I am thankful for the Mayfields and for their thoughtfulness to come visit us when we only met them once before. I'm thankful that Cam is feeling fairly good at the moment.

Sunday, February 26, 2006 3:10 PM CST

This day has seemed so long. It can't believe it is only 3:10 here! Cameron was really sore and highly sensitive this morning but I got him settled in and comfortable and I went back to the Grizzlies House to shower. I was only gone about an hour but while I was gone, the surgeon came in to see Cam and talked to him. Cam was totally overwhelmed talking to him and got very upset. I felt terrible that I wasn't here. The doctor came back later so I got to talk to him then. He is please with how Cam looks. There is about a one inch in diameter tube coming from the area where the surgery was. It is draining excess fluid and air from the lungs and the area around the lungs. The doctor said that can be removed in a day or so.

He hasn't spiked any fevers...good news. The source of the fevers was, more than likely, the fungus infection.
He continues to be on morphine for pain and he is continuing breathing exercises every 2 hours. The plan is for him to get up out of bed twice today. We are not looking forward to that but we know he has to do it.

His counts are lo
oking pretty good again today. WBC .7 with 88 neutrophils, ANC is 616. HGB is 9.9, platelets are 89,000.

It sounds like Ed and Chad are doing fine at home. Marko is still staying there for the time being to help out and be a support to Ed. Derek has a week of mid-terms and then will be coming here to be tested as a possible donor for Cam. This weekend, his band played in a couple of venues in Chicago. Sounded like they were excited about that opportunity.

Thank you for your continued support and prayers. Thanks to those of you who have written in the guest book or called. I know Cam would like some cards or pictures to help decorate his room if anyone would feel like sending something like that. The address is
St. Jude Children's Research Hospital
Cameron Dalene #23295
332 North Lauderdale St.
Memphis. TN 38105

We love you.

Saturday, February 25, 2006 3:10 PM CST

Cam went down for the surgery at 8:00. They actually began the real surgery at 10:10. The surgery went well as well as the anesthesia. He is on a morphine continuous pump with pulses as needed for the pain. The area of fungus that they removed was about the size of a baseball...pretty big. The incision is about 6 inches. He is going to be very sore for the next few days! The most important thing for him to do is to cough and to gradually take deep breaths. Both of those things are hard and painful but he has to do it to keep him lungs opened up.

The good news today is that his WBC is up even more. He actually has an ANC of 700!!! That is the first time he hasn't been neutropenic since the middle of December! That's got to help with him fighting the fungus infections.

Thanks to all of you who have called and prayed. I'll try to call back as I can get out to use the cell phone. I'll write more as things change around here. For now, he is snoozing away...his main job for today....rest.

Friday, February 24, 2006 7:11 PM CST

Cam had his lung biopsy this morning. We don't know the full results, meaning what kind of fungus is it, but it is definitely fungus. Most likely "aspirgillus". Later in the day he had the CT scan of his brain. The good news is that there was no fungus found in the brain!! The bad news is that the surgeons feel it is VERY important to remove the large mass of fungus in his left lung asap. So, they are actually bringing in a team to do the surgery tomorrow, Saturday. Cam is scared. I am too, but we both know it is necessary and he will get through this, too. The back pain has been caused by this and all the raspiness the doctors heard in Denver was maybe caused by it, too. It didn't show up on x-rays but it did on the CT scan.

Did I mention that the chest x-ray also showed that he has two compressed thoraxic vertebrae? That is caused by his bone loss from the radiation he had in Philadelphia and from massive amounts of prednisone. We have to find a way to build up those fragile bones so there won't be any more damage.

His white blood count was up a little to .5!! Dr. Hale was excited about that saying white cells would be very helpful to naturally fight the fungus along with the massive amounts of heavy hitting anti-fungal meds.

All that said, just please pray for a successful surgery, as little pain afterward as possible and for the remaining fungus to GO AWAY!!!

Thanks everyone

Thursday, February 23, 2006 6:05 PM CST

What a big day we have had today. He had an audiological exam, Child Life consult, Social Worker consult, Physical Therapy consult, CT scan of the abdomen and chest, and an ultrasound of his neck. He also had a bone marrow biospy, aspirate and spinal.

Good news/ bad news. Dr. Hale was just in here to say the bone marrow results were good, no leukemia and the spinal fluid was clear. The bad news is that the CT scan showed a large area in one of his lungs and a small area in the other lung that are likely fungal infections. He will have to have a biopsy to determine exactly what the areas are. If it is certain identifiable fungi, they might be able to treat with anti-fungal medications. If it is others, they may need to do surgery. They also need to know if it has spread to the brain so he will have a CT scan on his brain on Monday. If it has spread to his brain, it becomes much more complicated. The bottom line is that they have to TOTALLY get rid of ALL fungi before they can proceed to transplant. If they went to transplant with fungus present, it would spread rapidly and be fatal very quickly. This didn't even show up on the chest x-ray. Thank God they did the CT scan that many transplant hospitals do not do routinely.

This is all scary for Cam and us but God is greater than this problem, too. All of this is caused by him having such a low WBC for such a long time. His body just doesn't have the white cells to fight bacterial and fungal infections like it should. We have a battle with time, too. While we are delaying proceeding to transplant to clear the fungal issues, we are facing the possibility that the leukemia could return. These are the things we really need to focus on in our prayers.

I am thankful that Chad and Ed are almost home and their trip has gone well. I am thankful, too , that we have so many of you who believe in the power of prayer that we can count on to bring these needs before the Living God.

I'll update as we get any new information so you can know how to pray.

Wednesday, February 22, 2006 6:43 PM CST

After I wrote last night, around 8:00, Cam said, "I hate to say this but I think you need to take my temperature." Well, he was right. He was running a 101.0 temp. I called the doctor and he said he would need to come to the hospital and probably be admitted. We spent the next 4 hours getting his port accessed, getting triaged, getting an iv antibiotic, getting all the paperwork processed for inpatient status. He wasn't happy but understood this is what they needed to do to be cautious.

Chad was thrown into a tailspin when we disappeared rather abruptly. Ed had his hands full at the hotel room. Finally, he settled down and slept good through the night.

This morning, Ed and I had a conference with Dr. Greg Hale. It was informative and we felt quite a bit better about the treatment plan for Cam. They have made tremendous strides in the last few years in identifying more information about the genetic markers they use to match people for bone marrow transplants. It is WAY too complicated for me to articulate but I am pretty sure I understand the general concepts.

One thing I learned is that I will probably not be the donor because I have rheumatoid arthritis. It is an immune suppressive disease so the pre-treatment I would need could be harmful to me and set off a pretty bad flare-up. It could possibly also be passed on to Cam through the stem cells. If I was the only possible donor, they would probably accept me but Ed is available and Derek is also a possibility Dr. Hale is going to look into further.

Ed, Cameron and I all had ekg's and Cam had an echo cardiogram. Chad had to have a blood test because when Cam's new bone marrow starts engrafting, they have to be able to determine if it is Cam's, Chad's or the 3rd donor. Pretty complicated, huh? Then Ed and I had to have a physical with an outside doctor across Memphis. We drove in unfamiliar streets in the rain and finally found the office. (While we were there, Cam called to say that his fever had spiked up to 102.6. It is down now, again. He has to be without a fever for 48 hours before he will be able to be released from in patient.) Ed and Chad left from the doctor's office at about 5:00 to head home toward Santa Fe. They will stop in Fort Smith, again and make the long drive on Thursday.

Every hospital we have been to has different ways of doing things. One policy that they have here that they didn't have at the other 4 hospitals is that they don't let us use cell phones!!!!! YIKES!!! That is our life line to our world. So if anyone wants to reach us here at the hospital, you can call 901-495-5404. You can try my cell number but if I don't answer, it is because I can't. If you leave a voice mail, I will try to call back when I leave the hospital building.

While Cam and I will miss Chad and Ed terribly in the next several weeks, we are relieved that they are on their way home to get into their routine. Chad is just a HUGE handful around here and it unfortunately distracts all of us from Cameron. Now I'll be totally focused on the reason we are here.

Enough for tonight. Thanks for checking in!!!

We love you all.

Tuesday, February 21, 2006 4:17 PM CST

We have been quite busy since I wrote last. On Sunday, we left at 9:30 am and drove 11 hours. We slept at the hotel our friends own in Roland, OK, just outside of Ft. Smith, AR. We met my parents, brother, Rick, and his wife, Cindy for breakfast. They drove down from Fayetteville, AR so it was great to see them for a brief visit. Then we drove the rest of the way to Memphis, 4 hours. The total drive was a long 15 hours.

We went directly to the clinic at St. Jude. The transplant coordinator, Mary, met us and showed us around a little bit. We got Cam registered, he was seen by a doctor and had a blood test. We were told he would probably need platelets and red cells because the CBC from Saturday showed his HGB was only 7.1. They usually transfuse at anything less than 8.0. He had been getting platelets every other day, too. But when the lab results came back, his HBG was up to 8.3 and his platelets were at 60! His marrow was making new cells. So we got checked in to the Grizzley house.

The Grizzley House is run by the Memphis Grizzley NBA team. It is a beautiful hotel on the St. Jude Campus which is used only for St. Jude patients and families who are just checking in or here for a very short stay. The rooms are suites with two beds, a little sitting area and a kitchenette. Soon we will be moving to the Target House for the rest of our stay in Memphis.

Today, we had a very full day. We had meetings with the nurse, transplant coordinator, a physical exam for Cam, blood tests for Cam, Ed and me, chest x-rays for all three of us. Chad had a really hard time understanding what was going on and being traipsed around everywhere, so after lunch, we split up. Ed stayed with Chad while Cam and I did our tests. Then Ed went and had his done while Chad stayed with me.

Again, Cam's blood tests came back good enough that he didn't need any transfusions today. Yeah!! We are going to eat a "Special Dinner" at the Grizzlies House and relax.
Cam is having a lot of back spasms, again, so he needs to relax and get some rest.

Tomorrow, we have a full slate of tests and conferences, too. The most important, I think, will be the conference with Dr. Greg Hale. He will be filling us with information about what is to come and what to expect with this transplant.

I am so thankful for a safe trip here and for this marvelous facility where people are dedicated to helping our kids who have cancer and other terrible diseases.

Saturday, February 18, 2006 8:08 PM CST

This has been quite an exhausting day because we are packing to leave. Cam needed platelets this morning and Ed took him down to ABQ for that. I got a break from the clinic. That was good so I could get caught up on laundry, etc.

I've been having a hard time emotionally, too. That is mostly because of what is ahead with Cameron but its also the thought of being gone for a few months again.

We made a pretty bad mistake. Our neighbors have been so nice to watch the dogs whenever we were going to be gone for a few days. We made the mistake of thinking they could do it again and waited until the last minute to make that contact. Well, they are going to be out of town the same days Ed will be gone. The kennels were all closed so we couldn't put them there. We tried to locate Ed's friend, Charles to come stay with them but failed at that. Just when we were starting to really get worried about what to do with them, our friend, Marko, called. He lives in Los Angeles and is driving this way on a road trip. He doesn't have any definite plans in the near future so he offered to come stay with the dogs. He will arrive tomorrow evening. God is so good in helping things come together. "Trust in the Lord with all of your heart and lean not on your own understanding. In all your ways acknowledge Him and he will direct your path." We learn to do that more and more every day.

Another way God directed our paths was this. Some friends of Ed's parents from years and years ago, Roy and Ruth Svendson, contacted Ed a few weeks ago. They had heard about Cameron's illness and were praying for him. They felt they should call Ed and let them know they were thinking about us. Well, they live near Fort Smith, AR and their son owns the Interstate Inn there. They offered for us to stay there any time we were coming through that area. It is a perfect place for us to stop and spend the night so we made those arrangements for tomorrow night. We will drive around 10 hours tomorrow and sleep there. On Monday morning, we will get to meet my brother, Rick and his wife, Cindy for breakfast. They live in Fayetteville, AR and will come meet us. My parents are visiting at their house this weekend, so we will get to see them, too. Then we will have about 4 hours to complete the trip in Memphis.

All of those hours of driving would be so much better if we didn't have to drive both vehicles. Oh well, we'll make the best of it....we always manage, somehow.

I doubt if I will be updating at all tomorrow but I'll let you know how the trip went when I can get to a computer in Memphis.

Please pray for traveling mercy and for good weather. Pray for Chad, too. He seems to be coming down with a cold....we DO NOT need that right now!!!! It could be a pretty bad set back if Cameron got a cold right now.

Friday, February 17, 2006 10:17 PM CST

There is nothing to report today. Cam has felt about the same all day. His friend, Walker, spent the day with him. He played hooky from school to spend some time with Cam before he leaves.

Thanks to all of you who have signed the guest book with words of encouragement. We check it frequently. Thanks for all your prayers, too, as we head into the next step of our journey.

Thursday, February 16, 2006 9:47 PM CST

Cam and I had a good day around here. Cam worked hard on his school work and then around 3:00, we got a call from the clinic that the blood test that was taken this morning by the home health nurse indicated that his platelets were only at 13,000 and he needed to come to Albuquerque right away to get a transfusion. So we picked Chad up at school and headed down there. We just now got home.....over 5 hours later. That's just the way it goes.

His hemoglobin was steady at 9.4 so he didn't need any red cells. I don't know what the WBC was, I'm sure it wasn't up much, if at all. The thrush is slightly better so I guess the medicine is doing its job.

I'm trying to do all those things that need to be done before leaving for a few months. I know Ed will be here but I am trying to get ahead on some shopping, cleaning, paperwork, etc. to help him out.

I am thankful for those people who so generously give of their time and of themselves by donating blood products. When Cam needs platelets or red cells, a call is made and those essential, life saving blood products are right there. Please consider giving if you are not a donor and are eligible to donate. Your help is so very much appreciated by us and so many others.

Wednesday, February 15, 2006 6:57 PM CST

The plans are underway for going to Memphis. We plan to leave on Sunday, drive most of the day, stop overnight at a hotel and drive the rest of the way on Monday.

Cameron hasn't been feeling very well today. His mouth continues to be a problem. The onc said it is thrush so we got some more medicine to treat that. Our pharmacists know us well. His back hurt a lot last night. It was spasming. A heating pad helped him relax and he was finally able to get to sleep. He is having terrible cramping in his hands, too. It is likely a side-effect from the vincristine. It bothers him especially when he tries to write for his school work. The prednisone is hitting him pretty hard. He has gotten pretty bloated in his face and stomach, he is still always hungry and moody. Poor guy. There are only 5 more days of that awful stuff.

We were happy that Randy and Tanner Vaughn stopped by for a short visit this afternoon. I wish we could have seen Nancy and Morgan, too. We will plan on it when we get back from Memphis.

We are looking forward to cuddling under some blankets as we sit on the couch and watch the Olympics together tonight. Although it is still pretty warm here, the wind is HOWLING outside tonight so it will be good to stay inside!

Tuesday, February 14, 2006 4:37 PM CST

Cam had another clinic appointment in ABQ this morning. He got another transfusion of platelets and a spinal tap with Ara-C chemo. It all went pretty smoothly and we were home by 2:00. Then he took a nice, long nap when we got home.

His counts looked like this yesterday
WBC .1 - I can't believe he is still functioning with such a low white cell count!!!
HGB 9.2 - low but not yet requiring a red cell transfusion
Platelets - 19,000

The pain in his mouth now looks like it is caused by the vincristine and thrush. There are obvious white patches in the back of his mouth on his gum lines. Fluconasole should take care of that.

While we were at the office, the transplant coordinator from St. Jude called so I got to talk to her. The plan is for us, that is Ed, Chad, Cam and me to drive to Memphis next Sunday or Monday and to begin pre-transplant testing on Tuesday, Feb 21. They want to have both Ed and me have a complete physical and some other tests to see who will be the best match for Cam. Then Chad and Ed will come home. Cam will be admitted as an in patient on March 6. So, as you can see, we are moving full speed ahead now. All it took was for them to hear that Cameron was in remission.
Dr. Frost admitted today that she is so relieved he is in remission because she wasn't so sure he would get there! Yikes. We never really doubted he would achieve remission.

Happy Valentines Day to everyone. Ed and I are going to a banquet at our church tonight. Daniel will be staying here with Cam and Chad. It will be good for us to have this night out before we have to live in separate states again for a while.

I am so thankful today for many things. Cameron is in remission, plans are moving ahead toward a cure, I have a wonderful husband to celebrate Valentine's Day with and for the Children's Cancer Fund of New Mexico. They are giving us some money toward our trip to Memphis.

Monday, February 13, 2006 1:11 PM CST

Dr. Frost called a few minutes ago with the good news...Cameron is in remission! YIPPEE

That was the good news. Her concern is that not only are there no leukemia cells, but like we have been discovering during the recent bone marrow tests, there are so few normal cells, too! She, like me, is SO surprised he is not having fevers and LOTS of other complications due to the long period of time with so few healthy cells. She said most kids would have been hospitalized the whole last three weeks since he started re-induction. She said, he just seems to be "different" from other kids. I believe it is all the powerful prayers that are being said for him. Thank you, God for Your touch on Cameron's life and body!!

Dr. Frost will be contacting St. Judes with an update on his most recent test results. I plan to contact them, too, to see what their time frame likely will be for us to come out there.

I am so thankful today that rather than being in the hospital dealing with various serious issues, that Cameron has been home with the family, doing his school work, eating "real" food, playing his video games, seeing his friend, playing with his dogs. He even went to the mall with me yesterday for about an hour. Besides that, I am home to do "normal stuff", too!

Sunday, February 12, 2006 3:42 PM CST

The weekend has been pretty quiet. I went to church this morning. Cam's friend spent the night last night. He has been super sensitive and gets impatient particularly with Chad, thanks to the prednisone. His mouth continues to bother him. No other complaints, though. We will be happy to get the results of the bone marrow biopsy tomorrow.

We have been enjoying watching some of the Winter Olympics. They are some incredible athletes in such a WIDE variety of specialties.

Thanks for checking in.

Friday, February 10, 2006 8:08 PM CST

Well, I got a call late this afternoon that the bone marrow biospy was a good sample but they had not come to conclusive results about the chemistries yet. In other words, they couldn't say if there were any leukemia cells in the marrow or not yet. We should know by Monday. Have I mentioned anything lately about WAITING.....and WAITING....and WAITING some more. I am leaning toward thinking there is remission but that is just a gut feeling with no science to back it up.

Cam felt pretty lousy last night and today. The high dose prednisone that he has been on for almost 3 weeks now is really getting to him. He is SO emotionally sensitive. He gets upset about the smallest things and then gets mad at himself for seemingly over reacting. His nerves are just on the edge. His back hurts from the procedure yesterday, mouth continues to hurt, too. He tries so hard to keep positive but all of these things are getting the best of him right now.

We will just thank God for another day He has given us, no fevers, no infections, and we are home. And we will continue to ask Him for strength to face whatever tomorrow may hold.

OH and HAPPY BIRTHDAY, MOM We love you so much.

Thursday, February 9, 2006 7:55 PM CST

It was another LONG day at the clinic. We left here at 8:30 and got home at 5:30. He was hungry, being on the prednisone and not being able to eat after midnight. So they were mindful of how he felt and did the procedure first so he could eat, then gave him platelets and he needed a unit of red cells, too.

The doctor called and said they couldn't tell much from the preliminary results because, again, the cells were so sparce. Hopefully, they will be able to tell more from the biopsy tomorrow. If now, I don't know what they will do, just assume he is in remission since there are so few cells, maybe??? We will wait and see what they say tomorrow. More waiting.....

Cameron is sore again in his back and really just "worn out" tonight. His mouth is still bothering him, too. He slept a lot today but not really the restful kind of sleep. While Cam was waking up from the anesthesia, the nurses brought in a tiny, maybe one month old baby, who had just had a procedure done. He was crying and crying. The parents were doing everything they could to comfort him but he could not be consoled. I felt so bad for them and especially for the baby but honestly, that crying really started to get on my LAST nerve. After a while, I asked if we could be moved somewhere else and they did find another room for us.

It was great that Daniel was here all day with Chad. They seemed to do fine. We are just chilling tonight.

I'll report the results as soon as I get them.

Wednesday, February 8, 2006 4:35 PM CST

I got a call from the clinic a little while ago. They said the bone marrow test could not be read because there was not an adequate sample of bone marrow. The cells in the bone marrow are so sparce and there is a lot of scar tissue from repeated bone marrow aspirations that it difficult to get a good sample. He has to have it repeated tomorrow morning. Sounds like fun! HA

We have had a quiet day at home doing school work and other chores. Chad doesn't have school tomorrow because of teacher's conferences but thankfully, Daniel will be available to watch Chad so we can go to the clinic.

So we continue to take one day at a time.

I am thankful for the gorgeous 60 degree temps and warm sunshine here in mid February. It's wonderful.

Wednesday, February 8, 2006 9:16 AM CST

Our day at the clinic went pretty smoothly. Cameron got platelets first and then had the spinal with Ara-C and the bone marrow. He got another dose of vincristine, too. He wasn't as heavily sedated as last week so we stopped to get something to eat at Mimi's Cafe.

We haven't gotten the results of the bone marrow yet. I am waiting anxiously to hear from Dr. Frost!!!!! I'll write as soon as I know.

His counts were low as they have been. WBC .2, Neutrophils 26, HGB 9.2, Platelets, 21,000.

He was a little sore in his back last night but seemed restless so I took him to the Bible study at Velma and Randy's house in Espanola. It was good to see friends, get some Bible teaching and prayer. Chad and Ed came home after visiting a little while.

His jaw and mouth pain continue to be Cam's biggest complaint. The vincristine is the culprit where the jaw pain in concerned. But part of the problem is that he is having pain where the wisdom teeth seem to be trying to come in. At this point in treatment, there isn't much that can be done about that except take something for pain.

It is unbelievable that those are the only concerns he is having. Prayer is, once again, protecting him from what could be much worse.

So for now, we are just waiting to hear.......

Monday, February 6, 2006 7:32 PM CST

It was a good day today. Cameron was a little tired from a busier than usual weekend but he felt pretty good. He got quite a bit of school work done. He got a blood draw from the home health nurse at 8:15 this morning but at around 5:00 the clinic had not gotten the results yet. He is scheduled to be at clinic at 9:00. I think he might need platelets and then he will get another bone marrow biopsy and aspirate and another spinal. We are hoping and praying that he will be in remission!!!!! If he is, we will just continue as we are now until plans are made at St. Judes. If he is NOT in remission, Dr. Frost said they will give him another chemo agent to attack from another direction, donorubicin, doxirubicin or another PEG shot.

I was noticing Cameron's hair today. If he doesn't lose it soon, he might need a trim :) We thought he would have lost it by now but it is not even starting to come out yet. You just never know....sigh.

I will post tomorrow as soon as we have some results. I know many of you are praying with us that there will be remission.

"...with God all things are possible."

Thanks you to all of you who have written in the guest book lately. We love to read your comments.

Saturday, February 4, 2006 8:21 PM CST

It's been a good Saturday with nothing significant to report about Cam. He's about the same as yesterday, with the general aches and he tires out easily. Other than that he is sort of feeling like a normal kid today. He went out to the pizzaria/arcade place again and is actually spending the night at Walker's house tonight. It is a big deal for him and me. I am really missing him since we are pretty much joined at the hip these days.

Looking forward to church and the Super Bowl tomorrow. Cam and I are rooting for the Steelers and Ed is going to pull for the Seahawks...should be fun. I just hope it is a close game.

I'm thankful for yet another "good" day. Isaiah 41:10

Friday, February 3, 2006 6:29 PM CST

We got Cam's counts this morning and he needed platelets as we thought he would. So we drove to Albuquerque this afternoon. It was a pretty laid back trip. Daniel was here for Chad when he got off the bus so I didn't have to stress about getting home on time.

He is having a few classic side-effects from the vincristine. Those include pain in his jaw, numbness in the tips of his fingers and some cramping in his muscles in his feet. Hair loss is a common side effect, too. So far that hasn't happened but we are expecting to see it soon and Cam is preparing himself for it. This will be the 4th time to be bald and beautiful.

Cam's counts were like this yesterday.
WBC .04
HGB 10.9
Platelets 21,000

He is having his friend, Walker, spend the night tonight.

Thursday, February 2, 2006 4:53 PM CST

There's not much to write about today or yesterday. We have tried to get out a little. We went out for pizza yesterday and played a few arcade games. Cam realized that it doesn't take much at all for him to get really tired out.
He was feeling bad about missing out on fun times like that with his friends like most kids do. But he didn't dwell on it but moved on to more positive thoughts. It nearly breaks my heart, too, though.

He is feeling good....the prednisone makes his stomach feel "weird" and always hungry. He thinks about food a lot.

He got his blood drawn by a home health nurse today....don't know the results yet. We also met with the principal of his school and got a plan for his schooling in place. He spent a couple of hours today doing Social Studies, Science and English. It is good for him to occupy his mind and have a purpose for his time.

I feel really good about getting caught up on a lot of paperwork and household things I usually have a hard time finding time to do.

I am thankful my dear, sweet, handsome boy is still feeling good.

Tuesday, January 31, 2006 7:25 PM CST

We got to the clinic early and Cam got his platelets. Then he had the bone marrow aspirate, biopsy and spinal. The procedure went well but he had a little hard time waking up. He was still shaky, groggy and not seeing or thinking straight when he got home!! He has had a slight headache, too but Tylenol seems to be helping.

His counts looked good. Before the platelet transfusion, they were at 28,000. He could have gone another day or two without getting any. But now we don't have to worry about it for a couple of days at least. His HGB was good at 11+ and there were no blasts in the peripheral blood. His WBC is still very low at .2.

Dr. Frost called this afternoon and said the spinal results were good....there were no leukemia cells in the spinal fluid.YEAH! The bone marrow has so few cells that it is hard to analyze it accurately. There are leukemia cells there but the amount has decreased considerably from last week so we are making progress. She does not feel we need to add any other chemo agents at this time. He will have another BM next Tuesday. They generally think it takes up to a month to get remission.

I also talked to Dr. Wayne from NCI, NIH. He is supportive of what we are doing and just wants to keep informed. He is available to help in anyway he can. He also is very supportive of St. Judes and the work they do.

I am thankful to have a good bed to collapse in tonight. Boy, am I sounding OLD! All this "stuff" takes a toll on a mom!!!

Monday, January 30, 2006 8:46 PM CST

It has been a quiet day again today. A quiet day at home is just so much better than a quiet day in the hospital! Cam feels good but just has some heartburn from the prednisone.

The plans in ABQ have changed a little. Cam has a bone marrow and spinal tap with Ara-C tomorrow morning instead of Thursday. He will more than likely need platelets before the procedures so we have to get there by 8:00. That means leaving here at 7:00. He will also have vincristine tomorrow. It will be a full day so we are preparing ourselves for it. We are really tired tonight so will go to bed early.

I am thankful for Chad's school that he likes so much and for his teachers that make it fun for him. Of course, I am thankful that we can be home.

Sunday, January 29, 2006 8:00 PM CST

It has been a delightfully uneventful day. We have done some catching up with things at home. Cameron has felt really good all day. Thank God. His friend, Walker, came over to spend some time with him.

I'd like to have a few more uneventful days like this one. Every day is different so we'll see what tomorrow holds.

Thanks for checking in.....keep praying.

Saturday, January 28, 2006 6:08 PM CST

Yeah! We are home. We were only gone for 4 days this time but it seems like much longer. Cam's blood pressure was sort of high at one time last night but it has been stable all day. He got platelets and then we were allowed to come home. He isn't scheduled to go back until Thursday but I know he will need platelets before then. A home health nurse is going to come for a blood test on MOnday. I was also looking at his "roadmap" for therapy and I see that he is supposed to get vincristine on day 8 which is Tuesday so I think we will spend the day in clinic on that day.

Thank you to all of you who have given suggestions for home schooling materials and web sites to check out. I have looked at many of them and am working with his school's principal, too. I think by the end of this week, we will have a clear focus on what we need to do to get him through 8th grade. I am thankful that he is a good student!!! It would be much harder for him to miss so much if he wasn't.

Thanks, too, for the suggestions on getting Peg shots. We have used those ideas and you are right, emla and the relaxation techniques are critical in helping to ease the pain. I think the anticipation yesterday was actually worse than the shots. That is not to say the shots didn't hurt!

Cam is entering the "predni-zone". He has been on prednisone for 5 days now and he is starting to get the expected hunger and cravings for specific foods. He isn't too moody yet, thankfully. He is scheduled to take it for 28 days. I was the teary one today for some reason, just emotionally tired, I guess.

Did any of you notice that we are almost at 100,000 hits on this web page? Thanks to all of you for your concern and for checking on Cam.

Friday, January 27, 2006 4:45 PM CST

It was a much more relaxing day today. Cam didn't have any extra tests.Most of the night, his blood pressure was good but near morning, he got another headache and the blood pressure was 178/109. Since then it hasn't been that high. He is on Norvasc now to try to regulate it better. Because of the high blood pressure, he can't go home tonight. After he has one night without it jumping up, he can go home, hopfully tomorrow.

He is dreading the PEG Alsparganese shots he will be getting soon. They are terribly painful shots he gets in both legs at once.

I want to type more but this keyboard has a mind of its own right now and is making this update very difficult to type.
I'll write more later.

Hopefully Ed and Chad are coming to visit tonight.

Thursday, January 26, 2006 9:05 PM CST

we do't know anything more since I updated a few hours ago. His blood pressure is around 140/90. It is still high so they will be watching it throughout the night and give medications if necessary. He is feeling good, ate dinner, no headache.

There was talk about us going home for the weekend but we'll see how he is doing tomorrow, if they will still let that happen. His counts looked like this today. WBC .3
HGB 11.5, Platelets 45 and 26% young blasts. There hadn't been any blasts in his labs the last 3 days. I guess that is why we are here....to kick those nasty things in the behind once and for all.

Hope everyone gets a good night's rest. We hope to here at UNM, room 332 :)

Thursday, January 26, 2006 2:02 PM CST

Yesterday was pretty uneventful until 4:00am. Cam woke up with an excruciating headache and very high blood pressure. It was at 180/110!! The doctors were called, he was given lasix but the blood pressure stayed up and his heart rate is quite low.....at one point it was only 36. His normal is around 70-80. This morning he had an EKG and a CT scan of his head. The CT scan results were pretty normal except there were some pockets around his sinuses that are enlarged. That doesn't really explain the headaches, though. But because of the large sinuses, an ENT is being called in. The Renal doctor has been here because of the high blood pressure. He ordered an ultrasound of the kidneys.

So we went from an uneventful day to a very busy day with very few answers to all the questions. But at least the team is trying to find the answers. In the mean time, he is feeling pretty good with a minor headache lingering.

I am trying to figure out what to do about school. We don't want him to lose a whole year so I am looking into home school curriculum, state guidelines, etc. I am the only constant person who is always with him so I need to resume the teacher role when he is up to working.

I'll write another update when I have more answers.

Wednesday, January 25, 2006 11:37 AM CST

Sorry I didn't write last night. There are beautiful new computers in the rooms but we couldn't get it to work. Now, Cam figured it out and we are in business.

The bone marrow and LP went fine yesterday. We don't have the results yet. He had to have an echo cardiogram and then we got to the room around 2:00. His counts were all good except the WBC is still very low. This morning, however, the platelets were low and he will be getting a unit soon. I haven't heard what the other counts were yet this morning. He ran a slight fever last night.

He had his first 4 doses of prednisone and his first dose of vincristine already. So far he is feeling pretty good except his back is hurting from the bone marrow biospy.

He has his hospital face on. But we are finding a few things to laugh about. I'm going to have to work harder on that one...there is always Homestar Runner, Monk and the Munsters that help me make him laugh. Considering the intensity of this situation, I think he is doing VERY WELL emotionally. He's ready for the fight.

Dr. Frost will be in contact a few times a week with the St. Judes doctors about his progress.

The Basket of Hope people just came by with some "goodies". It will be fun to look through the basket.

There have been some challenges at home. The school called yesterday to say Chad wouldn't be coming to school today because there is testing for other students. I told them we needed him to be in school because Ed can't just take off any time and I am tied up. We were able to arrange for Daniel to be with Chad all day but then several hours later the school called back to say he could come and they would have coverage for him. Just another stressful thing to deal with.

I am so thankful today for Daniel and his willingness to help out with Chad when we get into a bind as well as regularly after school. I'm thankful that Cam is feeling good today.

Monday, January 23, 2006 8:46 PM CST

I got a lot done this morning before we went to the clinic this afternoon including taking Dimitri to the vet. He has infections in both of his eyes. Poor guy.

We were told to be at the clinic at 1:00 so we hurried to get there at that time. At 2:00 we were finally called in to get vitals, etc. Then 2:30 we were put in a room. Labs were finally drawn around 3:00. The results showed that he needed platelets. By the time they came and were infused, it was 6:15 before we left. We only saw a doctor for maybe 1-2 minutes of that time. We were so frustrated we both wanted to scream but decided instead to be thankful that we got to go home at the end of the long day. Tomorrow he has a LP (spinal) at 9:00 and as far as I know, he will be admitted to start chemo.

Cam is really dreading tomorrow. He has been through this induction 3 times and it is ROUGH. Each time he has had a pretty significant complication. The first time, he had a psychotic episode that scared me to pieces. The second time, he fought with high fevers the drs had a hard time getting down. The third time, he had the terrible leg pains. Each time he lost his hair in clumps. Those are the things that are resonating in our minds tonight. Please pray for peace and for mercy in the next days ahead.

We are going to try to take some deep breaths, relax and enjoy the rest of the evening together.

Sunday, January 22, 2006 7:58 PM CST

It is good to be home but overwhelming at the same time. As much as I love Chad and am very familiar with his behavior, when I've have been gone for a while, he is especially clingy and needy toward me when I come home. He nearly suffocates me. I see many things I want to do but he objects to me doing anything except sitting by him. He will go to school tomorrow so I will get a break to do some household things.

Cam has been sort of subdued today. I'm not sure if he is not feeling well, he says he's ok, or if he is just low energy, ie low red cells, or maybe he is a bit overwhelmed with home stuff, too. He went with Ed and the Weems to do some target shooting. Ed broke out his hunting rifle that he hadn't shot in over 20 years. They had a good time together. Chad and I went to church.

We have to go to Albuquerque to the clinic for an exam and blood test tomorrow afternoon. It would be nice if he didn't need any blood products but that is doubtful. We'll go mentally prepared for a long visit.

I am thankful to be home and to spend time with Ed and Chad.

Saturday, January 21, 2006 8:54 PM CST

Cam and I said a tearful good bye to Larry, Kathy and family today and headed home. Then we had a wonderful, excited, huggie welcome when we got home from Ed, Chad, Blaze and Dimitri. Ed has done a wonderful job of getting the house all cleaned and disinfected for our young immune suppressed man. We got home around 3:00. Cam is still feeling pretty good although he can hardly bring himself to eat. When he does, it is a very small amount.

Anyway, it is good to be home. As the saying goes "There's no place like home."

Friday, January 20, 2006 6:45 PM CST

This was our last day at the clinic here at Children's Hospital of Denver. It was sort of sad. Our day started off with a commute in 3 inches of fresh snow during rush hour traffic. We arrived at the hospital at 8:00am. We got home at 4:00 so it was another long day getting BCX, platelets and 2 units of red cells. We came mentally prepared and equipped with stuff to keep us occupied.

His counts were interesting. Yesterday, his HGB was 7.1 and today it was up to 9.2. That kind of jump up was unexpected but they gave him red cells anyway. His platelets went up from 23,000 to 24,000. Another unexpected very slight rise. WBC is still low at .2 with an ANC of 42 and the thing I really didn't like was there were 55% blasts! That is after several days of zero blasts. Oh well, I won't worry since we are moving ahead with the next plan anyway.

We are feeling sad already thinking of leaving Larry and Kathy, JB, Pat and of course Sydney (the dog). We have all gotten very close during the past several weeks. (It is hard to believe that they had never even met Cam until about 3 years ago at grandma and papa's 50th wedding anniversary celebration.) They have spoiled us rotten with their yummy cooking. It is a real hobby for them and they like to experiment with all kinds of stuff. Larry's favorite thing to watch on tv is the cooking channel. Tonight, they are making stuffed pork loin with all the trimmings at Cameron's request.

I am SO THANKFUL tonight for Larry and Kathy opening their loving home to us. It has made this part of our cancer treatment experience so much more tolerable.

Thursday, January 19, 2006 8:09 PM CST

We got up to some snow falling on Denver. It wasn't a lot but it made the drive to the clinic a little interesting.

Cam's counts were a little surprising. His platelets were only at 22,000 after a transfusion yesterday and his HGB was only 7.1 after two units on Tuesday. WBC was still only .2. After careful consideration, it was decided that he could wait and get pumped up with both tomorrow for the weekend. So he is not feeling great and is certainly not very energetic today as would be expected.

I talked to Dr. Hale at St. Judes. He thought the plan to go to Albuquerque for the induction, again, was the right thing to do. As soon as he is in remission, he can go straight to St. Judes for the transplant. The plan now is to spend the day at clinic tomorrow, drive home to Santa Fe on Saturday, and go to Albuquerque Monday for blood counts and begin chemo on Tuesday. It is probably best for this chemo to be done inpatient although Cam would much rather spend more time at home.

Wednesday, January 18, 2006 9:41 PM CST

It was a pretty uneventful day. Cam got platelets and the BCX. It was sad because we had to say good bye to Deb and Molly. They are the nurse and nurse practitioner who have been our primary contacts for this research study. They are going to a conference to learn more about BCX and the next study so they won't be here tomorrow or Friday. They brought Cam a nice cake and beautiful card. We hope to see Dr. Gore tomorrow before she leaves for the conference, too.

His counts were WBC .3, HGB 10.5, Platelets 12,000, and ZERO blasts both by the computer count AND the lab smear.

He is feeling good, is trying to eat more because he lost several pounds in the past couple of weeks because of his sore mouth and nausea. He was told to eat high calorie foods. I don't think I will EVER be told THAT!

Thanks for checking in. We love you all

Tuesday, January 17, 2006 11:07 PM CST

It has been another emotional day of discussions about what to do next. Three of our doctors feel it would be best to go back to Santa Fe and to receive the standard induction medicines in Albuquerque that he has had before which put him into remission. Then to proceed to transplant as soon as possible, probably in just a few weeks. Ed and I generally agree but we want to talk to the doctors at St. Jude's and at NIH to get their input before we make that decision. If that is the way we decide is best, we will move home this weekend and start the chemo on Tuesday. Hopefully, it can be done outpatient unless he gets too sick.

It would be GREAT to be home but we have been through this induction therapy 3 times before and know it is pretty rough. It will likely mean hair loss again and bone pain as well as nausea and vomiting. We have been upset all day just thinking about those things but if it is what we have to do to get him cured, then we will face it "one day at a time" as we have been doing. We will have to lean extra hard on the Lord for strength and for his mercy for Cam to tolerate the chemo well.

He got 2 units of red cells so we had another long clinic day. His platelets were at 22,000 so he will need them tomorrow. At least he went two days without needing them. His WBC is still very low at .2 but once again, there were no blasts by the computer readout but one rare blast seen on the smear.

I'll keep you informed about our decisions. I am thankful, again, for all of you who so faithfully hold us up in prayer. Thanks for checking in.

Monday, January 16, 2006 5:00 PM CST

We got the bone marrow biopsy results. Dr. Gore discussed them with us this morning. It showed, as we thought, there is still leukemia in his marrow. The percentage is down considerably, about 90% less than the last marrow. It is hard to say if the blasts are new or old, if they are stubborn and not going away or if they are multiplying themselves. It is impossible to say if this medication, if we continued, would eventually get him into remission. So, the bottom line is this. It is BIG DECISION TIME, again. Do we continue with this medication and hope for remission? Do we go with a more aggressive medication to achieve full remission? There are some medications that are tried and true. These are ones that he has had before and are quite toxic. Or there are others that are, again, experimental but likely less toxic. Ultimately, our goal is still to go to transplant, likely at St. Judes. We need to talk to all the doctors concerned, pray diligently for direction and then Cam, Ed and I have to make some decisions. For now, we will continue with the medication until we decide which way to go.

His counts looked like this today. WBC .2, HGB 7.9 He'll likely need red cells tomorrow. PLT 36,000 and 0 blasts but "one rare blast counted" No transfusions today so we had a relatively short day. Cam is feeling pretty good except he still has a sore mouth.

Please pray extra hard for us to discern clearly what the next step should be. We know God has a plan. That is what I am thankful for today. I just couldn't deal with all of this if I didn't have that strong faith to lean on.

Sunday, January 15, 2006 9:26 PM CST

There is not much to report today except that Cam has had some stomach upset. He threw up twice last night and once this afternoon. There is no obvious explanation so we just have to keep an eye on him and make sure it doesn't get worse or that he doesn't start to run a fever with it.

I went to church again today. It was great.

We had to go to the hospital for Cam to get platelets. His count was at 17 so it is good we went in.

That's about it. We will get more information on the bone marrow biospy tomorrow morning when we go in for the 10:00 appointment. Snow is predicted tonight. I don't know how much or the percent. We'll see in the morning.

Saturday, January 14, 2006 2:30 PM CST

Dr. Gore just called. She said the bone marrow aspirate, the liquid part of the bone marrow, lab results show that there are some leukemic blasts still in the bone marrow. That is what we were expecting. The bone marrow biopsy looks at the more solid part of the bone marrow. Those lab results will be back tomorrow or Monday. Those results will tell us more about the percentage of blasts and other information to compare with the last bone marrow test.

Cam isn't feeling real well today but we are going to go out to the dog park with Sydney. It will be good to get some fresh air and some activity.

Lots of love to you all.

Friday, January 13, 2006 10:07 PM CST

I have waited to update because I was expecting to hear from the doctor about some preliminary results of the BMA, bone marrow aspirate. She hasn't called yet but said she would today or tomorrow. His platelets were low today even though he got platelets yesterday. That was a surprise. They had to give a transfusion before they could do the procedure. His hemoglobin was still ok in the 9's. Blasts were 0 as counted by the computer and 4 cells were manually counted. The bone marrow went find. The doctor said it was easy to extract. Usually if the marrow is full of leukemia, it is hard to extract. My expectations are that he has some leukemia but that it is drastically reduced from the last BMA he had. I think that is what Dr. Gore is thinking, too. Unless there is a drastic change from that expectation, we will continue next week on phase II of the drug to continue toward total remission. This phase could be from two to four weeks.

We had talked about going home this weekend but he is still needing platelets at least every other day and he didn't know how he would be feeling after the BMA. Ed talked about coming up here with Chad, too, but has too much to do at home this weekend. So tomorrow, we don't have anything scheduled. Of course, we are in Denver and are feeling a little of Bronco Fever. They will play against the New England Patriots here in Denver tomorrow in the play-offs. Of course, we lived in Patriot's territory for ten years so we are not sure which side of the fence we should sit on for this one. If should be a fun game to watch.

I am thankful that the bone marrow went well even though we don't have the results back yet. Cam wasn't nervous about it since he has had many but I was nervous and, therefore, really didn't sleep well last night. I'll update as soon as I hear something from Dr. Gore.

Thursday, January 12, 2006 4:58 PM CST

It was a pretty uneventful day at the clinic today. He got the BCX, one unit of platelets to get him ready for the bone marrow biopsy tomorrow and we were out of there in 31/2 hours. He is feeling good with the exception of his mouth still bothering him and the lymph nodes are still sore.

His blasts jumped back up to 40%. It is tiring, this bouncy ride. WBC was at .4 but there were no segs. HGB was good at 10.+ after the transfusions yesterday. Platelets were at 23 which is usually ok but because he is having the bone marrow tomorrow, they wanted to make sure he had enough so there wouldn't be a problem with bleeding.

Tomorrow will be a HUGE day for us getting the results of the bone marrow. It will give us an idea of where we are headed in the next few weeks.

I continue to be thankful to Larry and Kathy, JB and Pat for sharing their home with us. It is a big commitment and we truly are thankful.

Wednesday, January 11, 2006 4:23 PM CST

I'm writing this update from the clinic room while Cam is getting his 2nd unit of red blood cells. Each unit takes 2 hours to drip so, once again, we have had a long day. I have gotten some of my course done so I have tried to use my time to some benefit.

His counts are looking good. The computer count of blasts was zero again, yeah!! But a lab technician looked at the sample manually and saw 5 blasts, not 5% but just 5. That sounds pretty good to me. His platelets got a good boost from the transfusion yesterday and was at 30,000. WBC is still .03, still very immune suppressed.

His lymph nodes in his neck on both sides have been hurting and are enlarged. This is likely explained by his mouth being sore so he has to take a couple of medicines to try to treat his mouth. His energy was down but that is because his Hemoglobin was at 7.7. These infusions will help him feel better.

That's about it for today. We are missing Ed, Chad, Derek and the dogs. Hopefully, we can take a quick trip home again, soon. (Of course, we won't see Derek since he is back at school.)

Tuesday, January 10, 2006 5:33 PM CST

Well, after being so thrilled yesterday with the news of no blasts in the peripheral blood, we were a little disappointed to hear that there were 40% today. Dr. Gore, although she was ecstatic yesterday, is not concerned still today. I did not completely understand her explanations of why the blasts jumped up again but I was assured that she wasn't worried. He had to get platelets, again, and his hemoglobin dropped, too, to 8.4. He will likely need more red cells tomorrow. WBC was only .3 so ANC is still almost non-existent. Just more of the same, huh?

I am ok, just tired of the emotional roller coaster ride we have been on. Cam's faith that everything will be ok is still unflappable. He doesn't get tossed around emotionally like I tend to. My faith is not challenged and I am glad to know that God never changes. He is the same through thick and thin and we can always count on Him so see us through.

Derek is driving back to Springfield today. His classes resume on Thursday. He is beginning his Junior year. So Ed and Chad are on their own again. Thankfully, Ed is going to get some help with Chad from Daniel. Daniel used to be Chad's one-on-one aid in school. Chad likes him a lot. He is also one of Derek's friends so he was at the house hanging out some over the break. His schedule allows for him to get Chad off the bus and stay with him for a while until Ed gets home from work. Thank God.

We will see what another day holds tomorrow. Day by day is how we have been living recently. It is almost impossible to plan ahead for anything.

Sunday, January 8, 2006 6:35 PM CST

We had a nice time yesterday, the day being "clinic-free". Larry took Cam on a Harley ride up to Louisville, CO up near Boulder in the beautiful foothills of the Rocky Mountains. Kathy and I drove the good old fashioned way, up there and met them at my Uncle Dal and Aunt Judy's house. Cam and I stayed there for dinner. It was nice to visit with them and we got some good laughs playing games.

Today, I got to go to church for the first time in many weeks. I went to the Orchard Road Christian Center. It is a church that was founded by Wallace and Marilyn Hickey. Many of you may have heard of Marilyn Hickey Ministries. The church is now pastored by their son-in-law and daughter, Reese and Sarah Downey. It was wonderful to be with so many fellow believers who gathered together to worship God and to hear the preaching of God's Word. I didn't really realize how much I needed that until I got there. My spirit was definitely fed by His Spirit.

This afternoon, we had to go to the hospital for platelets. The doctor didn't even order a CBC. She just assumed he would need platelets so they were ordered and ready for Cam when we got there. It was pretty quick and easy. Tomorrow, we will get more lab results.

Cam continues to feel good. His lymph node is slightly swollen on his left jaw. I hope that doesn't indicate anything serious is going on.

I had the privilege of talking to Dr. Alan Wayne this morning. He is the Clinical Director or Pediatrics at the National Cancer Institute at the National Institute of Health. Sounds like an impressive title, doesn't it? He had heard about Cameron and at the request of a friend who works for the NIH, called me to discuss him. He is aware of another medication that is new in treating ALL. He feels we should continue with what we are doing now but said if the BCX doesn't not seem to be working at some point, to call him and he would gladly consult with Cam's doctors about this other possibility. He knows Dr. Giller and Dr. Gore from here and Dr. McKinnell from Albuquerque so he is familiar with many of Cam's team of doctors.

I am thankful today for the opportunity to go to church and to have my spirit fed. I am also thankful for the opportunity to talk to Dr. Wayne and for his interest in Cameron.

Saturday, January 7, 2006 11:51 AM CST

Cam needed more platelets yesterday and , of course, got his BCX. Dr. Gore spent some time with us talking about her impressions of what is happening. The nature of research medicine is that there are a lot of unknowns because there are not a lot of previous patients to compare or predict what will happen. She is still encouraged that he is looking good and there are other positive signs in his blood work. However, I think she was a little concerned about the fever last night. It might have been better if one of the cultures showed a cause for the fever. With no obvious explanation for the cause, it is possible that it is caused by leukemia.

If we don't feel he needs it before then, he will have a bone marrow biopsy as scheduled on Friday. That will give the doctors a lot of information on how the bone marrow is responding to the BCX. If it is all moving in the right direction, we will likely continue with more of the treatment he has been on. If not, we will look at other options to get him in full remission.

He had had an enlarged, tender lymph node in his neck a couple of days ago. It is gone now which is encouraging. If the swollen node was caused by leukemia, it would not go away but would instead get bigger and more sore.

The blasts were still at 84%, down only 2% from yesterday. Hemoglobin was good at 10.4, WBC was .7 so the ANC is still near zero.

We are praying for no high fevers and no bone pain, for blast counts to go down and WBC, HGB, PLT to come up on their own.

We have the day off from hospital/clinic. We are going to spend the afternoon and evening at my Uncle Dal and Aunt Judy's house in Louisville. Larry and Kathy went on their 13 mile run this morning. They are training for a half marathon later in January in Texas. They began their interest in running when they joined the Team In Training for the Leukemia and Lymphoma Society a couple of years ago. They were running in honor of Cameron.

Friday, January 6, 2006 9:37 AM CST

Day 19 of BCX

Cam developed a fever last night of 103.6 so we spent the evening in the ER. He got blood cultures drawn and an IV antibiotic. He had to have one of those nasty nasal swabs to test for the flu virus. Thankfully, that test came back negative. The doctor thought he looked good enough and his temp was down to 102 so he let him go home. We were both glad about that! During the night, I tested his temp at 5:00 and it was 102, gave him Tylenol and this morning he feels pretty good. I haven't tested his temp yet since he got up.

We have to be at the clinic at around 11:00. I am hoping and praying the blasts will start to come down and the white cells will start to come up!

I'll update more later. Thanks for checking in,

Thursday, January 5, 2006 4:54 PM CST

Our clinic stay was much shorter today, only 3 hours. His platelets were only at 15,000 again so he got a unit of platelets as well as the BCX. His Hemoglobin was fine at 10.1. WBC was at .9, still very low with an ANC of 0. Yes that's right, ZERO! Blast percentage is 86% with an absolute blast percentage o .77. He is sleeping right now. He always has to take Benadryl before getting blood products so he gets sleepy. He's still feeling pretty good. His appetite is not the best but he is still eating. No fevers, no aches and pains to speak of.

We are trying to think of ways we can use our time since we can't go into any stores, museums, etc. Since it is a nice day, we will probably take Sydney for a walk and get some fresh air. I can go out but don't feel right about doing much of that and leaving Cam behind. We are going to start on some school work next week.

I have been busy this year with Cam's treatments so I didn't take the courses I need to earn Continuing Education Units necessary to keep my Speech Pathology license in New Mexico and for the American Speech, Language, Hearing Association. I went on line and found a couple of seminars I can do on-line. I finished one today and passed the test. That takes care of 4 of the 10 I need. I will do the next one next week. I kind of like having something else to focus on other than the crazy lab test results that I am struggling to understand.

I continue to be thankful that, in spite of everything, Cam looks and feels pretty good!!!

Wednesday, January 4, 2006 5:54 PM CST

We just got home from a 7 hour day at the clinic. Cam had to get platelets and two units of red cells. His WBC was only .8 today and his ANC is only 16!!! I am sort of surprised they haven't put him into isolation with such a low ANC but I have to admit I sure am glad we can come here every night instead of staying inpatient. I just hope and pray he can stay free of any "stuff" that can make him sick.

I am fighting to keep from freaking out. His blast % was at 83%! The absolute blasts were again at .65%. I understand the absolute blasts is really the important number but seeing 83% blasts still is very unnerving to me!!! Dr. Gore is on vacation but came into the office for a little bit and came by to check on Cam. She still doesn't seem to be worried. I am hanging my hat on that and continuing to trust God.

I don't think it is coincidence that I read in the Bible last night from James 4:13-17 about boasting about what tomorrow holds and making big plans. Only God knows what tomorrow holds for any of us in our lives. We just have to trust Him day by day and say "If it is the Lord's will, we will live and do this or that."

I'll keep you updated as usual. Thanks for checking on us and keep praying for Cam as well as strength for Ed and me.
We love you.

Tuesday, January 3, 2006 6:00 PM CST

Cam did not have to get red cells today after all. He did have to get platelets again. His count was back down to 16,000 after a transfusion yesterday, too. He just seems to be using them up so fast. Either that or he is not getting platelets that his body likes.

Blasts are up, again, too. They are at 63% and the absolute blast count is .63%. He is STILL feeling good. He is such a warrior, fighter.

Derek went home last night so he is helping out with Chad after school every day this week. I'm sure dad is glad to have him helping out.

Gotta take a run to the grocery store. Pat is cooking for us but he needs some pita bread. I'm thankful for the people in this house who like to cook. We have been eating real well.

Monday, January 2, 2006 5:06 PM CST

We arrived at Larry's house around 10:45 last night. The drive went really well. I wasn't even tired.

Today we went to clinic and Cam got his BCX and a unit of platelets. His platelets were down to 11,000 this morning. He was having some bleeding in his mouth so that was an indication the platelets were getting pretty low. His hemoglobin was 8.1 so I am sure he will need red cells tomorrow morning. WBC was .6 so his ANC is low at around 68. You probably remember that anything below 500 is considered to be "neutropenic" and his immune system is very much compromised. He will continue to stay out of crowds and has to wear a mask whenever he is out at all. His blasts were at 56% and the absolute blast was at .33%.
He continues to feel good.

Derek is driving home to Santa Fe tonight. Chad was very upset when Cam and I left yesterday. Ed took him for a ride. That usually calms him down but he continued to be upset until 3:00 a.m. so Ed didn't send him to school today. Ed was off today anyway. Can you believe Santa Fe Schools were even in session today?

I am thankful for a beautiful, sunshiny day, for nurses and on-call doctors who work on holidays, for family and friends who continue to check in on us and pray for us.

Sunday, January 1, 2006 5:39 PM CST

We've had a nice New Year's Day. This afternoon, we went to St. Vincen's Hospital for a blood test. WE just got the results. There are no surprises but we were a little disappointed that his platelets are at 17,000. This means he needs a transfusion. Since it is not urgent, we will drive up to Denver tonight and go into the clinic in the morning. We are leaving home in a few minutes.

He is STILL feeling good with good energy, etc. Thank God for that.

Saturday, December 31, 2005 7:40 PM CST

It's great to be home if only for a short time. I don't have anything really to report except that Cameron is feeling wonderful and is looking forward to ringing in the New Year with us and Walker. He has no doubt he will stay up until midnight although I have my doubts about my ability to stay awake. :)

We have made arrangements to have his blood test run here in Santa Fe tomorrow. If he badly needs platelets, I will just leave to go back to Denver to get them there. Our ABQ doctors said it will be very difficult to facilitate him getting platelets on New Years Day in the ER so what other choice do we have but to go back to Denver? Hopefully, his level is high enough tomorrow that we can still wait until Monday morning to head back up north.

We want to wish all of you a HAPPY, HEALTHY NEW YEAR!!!

Friday, December 30, 2005 10:04 PM CST

Cam got his medicine this morning and although his platelets were at 28,000, Dr. Gore decided to give him another transfusion to "tank him up" for the weekend. He won't need to even have a blood test tomorrow so we have the day off from clinics. Yeah! His blast percentage continues to go up. Today it was 57%, yesterday it was 54%. I talked to Dr. Gore at length about it and she continues to believe they are old blasts that are coming out of the marrow into the blood. She said she would be very surprised if the marrow was producing any new blasts. I sure hope and pray she is right!!! We are putting our trust in God and in her professional judgement.

We drove home, and boy oh boy, is it good to be home. It has been almost 3 weeks since we left. Of course, we saw Chad and Ed last weekend but it was good to see them and Dimitri. Ed has the house looking really good. The laundry is all caught up and he went shopping and has plenty of food in the house. He is taking good care of things here.

I am thankful for a safe drive home and for the nice people who gave us a jump start in Raton, NM after our battery went dead at the restaurant.

Thursday, December 29, 2005 7:01 PM CST

Today brings more of the concerns I have been having for the last couple of days. His blast count continues to go up. They were at 54% today. I wish I knew what to think o get Dr. Gore, although we didn't see her today, relayed the message through the nurse that she is still not concerned, that she thinks he is "mobilizing" cells....whatever that omeans. Something having to do with him making lots of new cells. But his other counts were all down, too. Hemoglobin was down to 7.9 so he had to get red cells, platelets were at 15 so he had to get more platelets, WBC was down to .8 so his ANC is low. It all made for another very long day. We got there at 9:00 and got back to the house at 5:00.

I checked to see if I can give him platelets thinking a close match might give him more of a boost. I am not eligible because of the rheumatoid arthritis diagnosis. Maybe Derek or Larry would give him more of a boost. we are going to look into that some more.

Derek is enjoying spending time around here. Chad and Ed seem to be doing fine at home. Cameron continues to feel really good and I am hanging in there. I have to continue to purpose in my heart to trust God even when things look like they are not going the way we would like.

I know there are other people we care about who have tremendous challenges in their lives, too, so I continue to pray for others as we depend on your prayers.

I want to thank Larry and Kathy, JB and Pat for their wonderful, generous gift to us of opening their home to us. You are loved!!!

Wednesday, December 28, 2005 5:47 PM CST

Cam got his 10th dose of BCX today. He also had to get platelets but we weren't in the clinic for too long.

I am fighting a little discouragement. His blasts were at 40% today. Dr. Gore said she is not discouraged and expects fluctuation. The proof will be in the bone marrow biopsy scheduled for Jan 13. She is, in fact, encouraged that Cam is feeling and acting so good. She is also encouraged that his bone marrow is producing red cells, new segs (early white cells) and holding on to platelets a little longer than he had been.

Please keep praying. This fight is FAR from over and we can't let up at all.

I'm thankful for all you prayer warriors who are continuing to hang with us. I'm also thankful that Cam is doing well and enjoying life right now!!!!!

Tuesday, December 27, 2005 4:53 PM CST

Day 9 of BCX

We had a good, relatively short day at the clinic today. We left by 12:30 and had some time to go shopping a little. He didn't have to get any transfusions, only medicine. His platelets held at 29, his Hemoglobin went up from yesterday which means his bone marrow is now producing new red cells. His WBC was 1.4. However, his blasts went up to 33% and the absolute blast count was .43%. My heart fell into my stomach when I saw that. But felt much better after the doctor assured us that this kind of fluctuation is ok and to be expected. I'm not sure why that is normal but she is not at all concerned or alarmed so I will not worry about it either.

Cam is feeling and looking great. Derek is still around and met up with a friend from Evangel who lives here in Denver to hang out with today. He likes to hang out with his cousins, too.

Ed and Chad are holding down the fort at home. We are hoping to all go home this weekend for New Years.

I am thankful today that Cameron is feeling well and acting like himself.

Monday, December 26, 2005 9:32 PM CST

What we thought would be a sort of short, routine day turned out to be another 8+ hour marathon. It was all about miscommunications between the pharmacy, the lab, the nurse, etc. Cam finally got his BCX, the lab results, he needed platelets and we finally got to go.

The blood test results look good, again. The blasts are 19%, absolute blasts are .22%! Can't wait until they are 0%!!! His WBC is 1.2, Hemaglobin is down at 8.4 so he will need red cells tomorrow. His platelets were very low at 10 so they gave him a large transfusion.

He ate good today and had pretty good energy. He had little or no pain. I love to report positive things like that. He is such a trooper!!!

Ed and Chad drove home last night. They got home safely and are catching up on home "stuff". I'm thankful today for my faithful, wonderful husband. We have to work together as a team to get through these rough times.

Sunday, December 25, 2005 3:07 PM CST

MERRY CHRISTMAS!!!!! We went to the hospital for a blood check. Cam's platelets were still at 22,000 so he didn't have to get a transfusion, again! We were in and out of there pretty quickly. His blasts were still about the same. I was kind of disappointed because every day this week, the percentage has gone down significantly. We'll see what it looks like tomorrow.

We had a nice gift exchange time last night and are relaxing today. Thanks to everyone who sent thoughtful gifts. Larry and Kathy are fixing a nice dinner with prime rib, etc. Larry, Cameron and Pat just took off on a motorcycle ride...it is 61 degrees here today! Later, we will go visit Ed's Aunt Esther and his cousins, David and Louise and their families.

I am thankful today for the gift God sent to us so many years ago, his own Son. We can all have eternal life because of that precious gift he sent on that day!

Again, Merry Christmas!!!

Saturday, December 24, 2005 4:32 PM CST

Happy Christmas Eve. It is a great day here in Denver. The sun is shin ing and the air is fairly warm. Larry and Kathy even went out on for a ride on their Harley.

Ed, Chad, Derek and Blaze arrived last night so we are all together today.

Cam had to go to the hospital for blood check. He didn't need platelets, they were at 25, so we didn't have to stay long. Yeah! His WBC is 1.1, his blasts are down to 35%, his absolute blasts are at .17! He is feeling a little better each day and seems to be gaining some strength. He always seems to perk up when Derek is around, too. They always laugh together.

A big THANK YOU to John and Michele for bringing the Christmas tree and for the yummy tray of cookies and fudge. Also for watching Dimitri for us! You are great neighbors and we are blessed to have you close by.

Friday, December 23, 2005 6:56 PM CST

This is day 5 of the BCX treatment and so far, things are looking good. It appears the leukemia is responding just the way we want. The white cells are down to 1.4, the blasts are at 52% and the absolute blasts are at .7%. Hemoglobin is 11.0 but he can't seem to hold on to the platelets. They were 17 again today so he had to get another transfusion.

We were planning on driving home right after clinic but because he is still needing daily platelet transfusions, we thought it would be better to stay here. If we went home, he would have to spend most of his time in the Albuquerque ER rather than home. So our plans changed. Derek is driving up here with Blaze tonight and Ed and Chad will come up tomorrow. We will enjoy spending Christmas with Larry, Kathy, JB, Pat and Sydney.

Cam is feeling pretty good but is still achy and gets tired very easily. Appetite if picking up.

Thanks for checking in on us.

Thursday, December 22, 2005 6:39 PM CST

We got some more good news today. The blood counts indicate the medicine BCX is doing what we want it to do. The white cell count is now down to 3.0, the blasts are at 66% and the absolute blasts are 1.8. He had to get platelets again today but our visit was only 3 hours rather than 9!

He is feeling better but still has the aches, (they seem to move around from head to back to legs to elbow to shoulder), low grade fever and he is still weak and tired. All of those things can be tolerated if we know it is working.

We will go to clinic in the morning and then we can go home for just a couple of days for Christmas! He can take this medication orally for 2 days so we have to be back on Monday afternoon for the next iv dose.
We are looking forward to seeing Dad, Chad, Derek, Blaze and Dimitri as well as our home.

I am especially thankful today for all those people who voluntarily give their blood and platelets for people like Cam who need them. It is amazing that they are there when he needs them. If you are a donor, THANKS. If not and you are able to donate, you might think about doing that and think of Cameron as you donate. I don't think direct donations can be made from long distances but the thought would be almost as good!

Wednesday, December 21, 2005 9:06 PM CST

So sorry I didn't update yesterday. At the end of a very exhausting and awful day, I wrote a detailed update and it wouldn't go through! I didn't have the energy to re-write it. I'll try to summarize.

Yesterday, Cam was very weak in the a.m. and tired but not feeling too bad. He watched a movie with Dan and ate a little. Because he had to have platelets, the day was kind of long so we got home to Larry's house around 3:15. We had to leave to get Dan to the airport by 4:15. Cam was feeling ok, just tired, so I decided I could leave him with Aunt Kathy and drive Dan to the airport. That was a mistake. First of all, I got lost, really turned around and lost valuable time. When we got the airport, he was only 45 minutes early. By the time we got him checked in and the car parked, it was only 25 minutes until departure. He had to get through security, take a tramway to the correct concourse and get to the right gate. I couldn't go with him unless I had a gate pass....didn't have time to get that so I stood and nervously waited to hear if this young man made it on time. Boy was I relieved to hear that he had boarded the plane!! Anyway, it was great having Dan visit. Thanks, Dave and Susanne for making that happen!

On my way home, I called to check on Cam. Kathy said as calmly as she could that she thought I should get right home asap cuz Cam wasn't feeling very well and was having the shivers. By the time I got home, he was throwing up and had spiked a fever. I knew he was warm but wasn't prepared for what I saw when I took his temp.....105.4!! He was delusional, talking crazy and not really seeing very well. I was alarmed, gave him Advil, got cool washcloths on his head and neck and called the doctor. By the time the doctor got the message and called back, his temp was down to 103.8. She still offered to meet at the ER but he was thinking straight by then and his temp was headed down. An hour later, she called again and the temp was down to 101. He was so weak, though, that he had to crawl up the stairs to his bed. The whole night was emotionally wrenching. He slept good and didn't spike any more fevers.

Dr. Gore explained the fevers by saying the white blood count (most of those cells were leukemia cells) had dropped very quickly in response to the BCX and the leukemia cells, when they break down can cause some toxicity in the system. The fever was a response to that so in a weird way, it was kind of a good sign that the medication is working. we certainly don't want any more 105.4 temps!
Cam slept a good part of the day but has had not had any fevers all day, even now. He isn't having much pain, either. Yeah to that!

He needs me to get his night time meds and get him tucked in, pray for him, etc. We are encourage but it is still a tough road and we have to look at one day at a time.

Love to you all

Monday, December 19, 2005 5:22 PM CST

It was a big day for us. Cameron received the first dose of the BCX medicine. He is the first patient in the country with b-cell leukemia to receive this medication on this particular protocol. It has been used on a couple hundred t-cell leukemia patients. They are keeping him VERY hydrated because when the leukemia cells break down from the chemo, they release some toxins in the system which can be hard on the kidneys without enough fluid. He is also taking allopurinol for protection of the kidneys.

He is EXHAUSTED, weak, running a fever, still achy and generally feeling yucky. Dr. Gore expects him to start feeling better within a couple of days. I sure hope so. It is HARD to see him feeling so cruddy.

It will be interesting (to some of us, not so interesting to others) to watch his blood counts in the next few days. The truth if the medicine is working will be in the blood numbers. So I will include the numbers in the updates for my information later when I look back over this journal and for those of you who are interested.

Yesterday, 12/18 Today,12/19

WBC 62.4 TOO high 54.6 TOO high
RBC 3.55 little low 3.27 low
HGB 11.1 little low 10.4 low
Platelets 30 low (transfusion) 38 low
Blasts 95% 94%

Dan has been a real trooper. He is not used to this SLOOOW pace and so much sitting and waiting time but he does not complain and seems to be very understanding of what is going on. When Cam needs to rest, he finds something else to do and says he understands that rest is the best thing for him. Today, he built a mobile out of inflated medical gloves, coffee stirrers and a paper coffee cup. It was creative and cool. By the time we got back to Larry's house, the gloves had deflated so it wasn't quite as impressive.

I am thankful today for researchers who dedicate their lives to finding treatments for our sick kids. Of course, I am thankful every day for our beloved family and friends whose support means so much to us.

Thanks to those of you who have taken a minute to write in the guest book. We love to read your comments.

Sunday, December 18, 2005 10:51 AM CST

It was a good day yesterday. We like good days! Cam ran a fever for a little while during the afternoon but kept drinking his water and it passed. He had very little pain but also very little energy. He was giggling and joking with Dan the way he used to. It was fun to hear both of them.

I even got some shopping done although it was CRAZY busy with other Christmas shoppers.

We will be going to the hospital at about 1:00 today for platelets. Hopefully that won't take long and we can enjoy the rest of the day. Tomorrow is the day he is scheduled to start this new medicine. Pray, pray, pray that it works wonders against his leukemia!!!

Gotta go....thanks for checking in.

Saturday, December 17, 2005 10:14 AM CST

My journal entry got cut off twice and started to do it a third time last night so I just pushed send before I was finished so I wouldn't have to start over again!

Cam felt fairly well last night. He had a fever as he has had every evening. So far this morning, he says he is feeling ok although he hasn't been up much yet. We are not scheduled to go to the hospital today unless something unexpected comes up. Hope NOT. We hope to grit through today and tomorrow without any major complications and get started on Monday with the BCX. We are praying fervently that Cam's stubborn leukemia cells will respond to this drug.

I am going to do a little Christmas shopping today. I haven't bought a thing but I want my boys to at least have a couple of packages to open. We are getting a beautiful, light snow here in Denver this morning. It doesn't look like the kind of snow that will interfere with driving much.

I want to close this entry with a HUGE THANK YOU to the El Dorado Elementary School, ATC, and the El Dorado Community for the poinsetta sale fund raiser. It was a much bigger success than we could have imagined!! THANKS to all of you who participated and bought the beautiful Christmas plants. In the midst of a trial like we are facing, a gesture like that takes on a lot more meaning than just the money it raised!

Friday, December 16, 2005 6:03 PM CST

I realize I left you hanging yesterday as we headed to the clinic. I am so glad we went to get the fluids because he was quite dehydrated. He looked awful, his color was bad and I was pretty concerned. He was not happy with me requesting that we get
some IV fluids but he'll get over it.
His counts were pretty good except his blasts were at an alarming 82%. He felt better after the fluids and had a pretty good evening. We helped decorate the DeVries'Christmas tree and he enjoyed being with Dan.

Today he got platelets and his blast count was down a little to 78%. He looks much better and was feeling pretty good except some pain in his legs, side and shoulder. After clinic, we went out to eat lunch, and then we went to a fun toy store called the Wizard's Chest. After that, he needed a long nap. I felt bad for Dan. He is used to being so active and we are far from active!

Thursday, December 15, 2005 3:19 PM CST

Last night, Cameron spiked a fever of 102.8. I gave him tylenol, made sure he kept drinking and wiping his forehead with a cool cloth. The fever came down. I called the doctor, too. She said since all of his cultures have been negative in recent days, to just treat him at home unless he starts to look or feel really sick.

This morning, he was feeling really bad, achy, throwing up, pain. He threw up 3 times at the airport when we were picking Dan up.

I just heard from Dr. Gore. We are goin to go to the clinic now for some fluids so we don't end up in the emergency room tonight. I'll write more later.

Wednesday, December 14, 2005 5:59 PM CST

Well, Cameron got platelets today and another chest x-ray as a prerequisite for the drug study. The other counts were pretty good. Blasts were 36%, hemoglobin was fine and white cells were down a little from yesterday. That's the good news. The bad news is that they can't start the new medication, BCX, until Monday. The earliest they could get it delivered is Sat. afternoon. We were hoping for Friday or Saturday at the latest. Now we have to pray that he will stay stabilized until then.

The doctor's explanation for the shoulder pain is that it is likely referred pain from the gall bladder. It doesn't hurt him to touch or to move the shoulder. It just hurts to breathe and move around. His side hurts, too, which can also be the gall bladder collecting leukemia cells or some of the meds he has to take. He was given a pain medication that seems to work but it makes him pretty loopy and tired.
Those side effects are better than the pain.

We got out of clinic early enough that we went to see The Chronicles of Narnia. There were only 4 people in the whole theater at the 1:30 showing.

Dan Pfisterer, Cam's good friend from Connecticut, is flying into Denver tomorrow morning to spend several days with his buddy. Cam is looking forward to that! I hope he is feeling well enough to really enjoy their time together.

We are still taking one day at a time and praying for the best.

Wednesday, December 14, 2005 8:07 AM CST

The clinic visit yesterday was smooth and fairly quick. That was a nice treat. We met with Dr. Gore who is the head of this study. She is very encouraging and excited about the possibilities of this new drug. We are praying it will work that well for Cam. He had a few pre-study tests and that was it.

Counts were good except he needs platelets today. We are on our way in just a minute. Blasts were down to 45% but the doctor said it can fluctuate like that and it doesn't mean much.

Last night, he was doing well until at dinner, his left shoulder started hurting a lot. Just out of the blue, it was very painful. It made it hard to get to sleep because of the intense pain. It is continuing this morning. I am sure the explanation for it is the leukemia cells growing there. We'll see what they say today.

Gotta run. I'll write more later.

Tuesday, December 13, 2005 11:26 AM CST

We arrived safely at Larry's house around 10:30 last night.
Ed and Chad arrived home safely, too after following us more than half way. We slept really good. Our appointment is at 1:00 to sign consent forms and for an exam. It would surprise me if he didn't need more platelets so we have to be prepared for another long visit.

A huge thank you to our nephew, Pat for moving out of his room to make room for Cam and me to have more space while we are staying here. What a generous thing to do. Thank you, too to Kathy's mom. She knows what she did!!

i'll write more after the appointment. Enjoy your day.

Monday, December 12, 2005 5:15 PM CST

Just a quick note to say that we are on our way to Denver in a few minutes. We just got home from Albuquerque. Cam was supposed to get platelets so we got there at 9:00. We didn't leave until 2:45! It is unbelievable to me how long everything takes. I joke that if we had a dollar for every minute we have waited for some doctor, procedure, etc, we would be WEALTHY!!!

His platelets were down to 11,000. That is too low but he is all set now. Then they decided to give him another boost of antibiotic. Other counts look pretty good except the blasts are at 72%....slowly and steadily climbing. We need to get on this medication ASAP!

The weather looks good for the drive so we are on our way north. Pray for safe travel cuz I didn't get much sleep last night. Ed is going to drive up half way to accompany us and then my brother, Larry, is going to accompany us the rest of the way. What great guys. I feel silly but they want to be sure we get there safely.

Thanks. Keep praying for complete healing.

Sunday, December 11, 2005 10:56 AM CST

I'm sorry I didn't write an update earlier. I thought I had but I just logged on and saw that I left you all hanging.

By the time we got to the ER in Abq Cameron didn't have a fever anymore. He had taken tylenol 3 hours before. He was feeling good but they still wanted to run the cultures, give IV antibiotics. Those are certainly to be expected but it took 4 different doctors to try to figure out what to do with him. Finally, 6 hours later, I got the oncology doctor on call on the phone and said we wanted very much to go home. We felt that he would be better off at home than being admitted onto a regular pediatric floor with lots of sick kids. The oncology floor was full. She finally agreed to let him go home and said she trusted me to do what is best for Cameron. She's right about that! First, though, we had to have ANOTHER chest x-ray......clear again,m and another antibiotic that would cover 24 hours. We were fit to be tied by the time we left and got home after 1:00 a.m. At least we tucked into our own beds. On the way home we stopped and got a quick bite to eat...we hadn't eated since early in the day. When we got home, Cam threw that up. I guess it was too much for him on an empty stomach and the antibiotics he had gotten.

His counts were pretty good, except platelets at 34 and the blasts were up from 61% to 63%.

While we were in the ER, our pastor from CT, Pastor Brad Whipple and our friend, Rusty Miller flew in for a visit. They spent some time in the ER with us before heading to our house. That helped to break the boredom.

Saturday, he slept till almost noon and got up feeling good except a pain on his left side. He was good all day and we had to go to the ER in Santa Fe last night to get another dose of the antibiotic. Unfortunately, Pastor Brad got a stomach virus and stayed in the bedroom ALL day. We never even saw him. He and Rusty got up early this morning and had to catch a 7:30 flight out of ABQ! We were so disappointed!!! But, on the other hand, Ed's brother, Arnold, and his wife, Elinor, came yesterday from New Jersey. We are so blessed that so many precious people in our lives are coming to support us with their presence and prayers.

Today, we are off to a good start. Cameron is feeling good and looks good. We never know what the day will hold so we have to be prepared for anything.

We are so thankful for loving supportive people in our lives; those who have been able to come be with us and those who haven't been able to come, too. We love you.

His counts, last night, were again pretty good except the platelets were down to 22. That is getting too low for comfort with today being Sunday. He is scheduled to get more tomorrow morning.

Friday, December 9, 2005 5:16 PM CST

I got home from work around 3:30 and Ed met me at the door and said Cam has a fever of 103.8! Yikes! I called Dr. Giller immediately and we are off to Albuquerque for cultures and IV antibiotics. We will likely have to go inpatient.

I'll try to write more later. Please pray.

Love you all, Juli

Saturday, December 10, 2005 10:47 AM CST

We came home from the ER about 1:00 am after 6 long, frustrating hours there. By the time we got to the ER in Abq Cam no longer had any fever. We got there around 5:30. The last time he had had tylenol was 1:30. They needed to cultures and he was examined thoroughly by at least 3 different doctors and 2 nurses. He got lots of fluids and 2 different IV antibiotics to cover a variety of possibilities. The waiting time there is UNBELIEVABLE. Of course, they heard the wheezing in his left lung that has been a cause for concern with every other doctor he has seen since April. So right before we were allowed to leave around 12:00, he had to have ONE MORE chest x-ray and once again it was perfectly clear. He has had about 5 -6 of them and they are all clear.

He was going to be admitted but there wasn't a room on the oncology floor so he would have been admitted to general pediatric floor with lots of sick kids. I practically insisted he would be better off at home and convinced the doctors we would be fine at home so we got to bring him home. The oncology doctor said she knows I have been through so much with Cam that she trusted me to make the right decision for Cam...that I wouldn't do anything to jeopardize him. She is absolutely right about that! His counts are all ok except the white count is climbing up because of the growing leukemia cells. The blast count was up only 63% from 61% yesterday. WE were relieved that there wasn't a bigger jump.

Now we have to wait for the culture results and have to go to get another boost of antibiotics this evening. We can go to Santa Fe's hospital for that so we don't have to go to ABQ again. However, any more signs of illness or fever and he will go inpatient in ABQ.

James and Andy left to go home to Connecticut around noon. Then Pastor Brad Whipple, our pastor from CT and another friend, Rusty came. They arrived in ABQ around 9:00pm and hung out with us at the ER for a while. We are blessed that we have people who want to come support us... all the way from CT! Today, Ed's brother and sister-in-law, Arnold and Elinor from New Jersey, are coming, too.

I am thankful today that we were able to sleep in our own beds, all of us under the same roof last night. Cameron is still sleeping now but when I checked on him he doesn't seem to have a fever.

Friday, December 9, 2005 5:16 PM CST

Thursday, December 8, 2005 11:04 PM CST

The news wasn't good today. The blood test showed that there were 61% of blasts! That is up from 5% on Monday! What is that all about? We were, needless to say, pretty upset and confused about that huge turn in the wrong direction. Cam had to get two units of platelets. It was surprising that they gave him that much because there is a serious shortage of platelets in New Mexico. They had to delay transfusions for some of the kids in the clinic.

Cam is still feeling good except for being tired and very disappointed.

It was a long, tedious, stressful day. We came home and relaxed and released some tension by playing Cranium with Andy and James. It made us laugh a lot.

We are spent tonight and are looking forward to a better day tomorrow although we have to say good bye to our "kids".

Love to you all, Juli

Wednesday, December 7, 2005 8:12 PM CST

Another relatively good day. I went to work to get caught up on some things before I have to take a longer leave of absence. I felt good about going because Ed, James and Andy were all here to keep Cam company. He felt pretty good all day, again. We went out to eat at one of our favorite spots tonight, Gabriel's. Cam ate quite a bit. He's tired now and ready to "retire" for the evening.

We go to Albuquerque tomorrow for a spinal with chemo. We learned that there was CNS (central nervous system) involvement this time, meaning there were leukemia cells in his CNS fluid. He had never had that before. They want to keep it in check so they will give chemo. It will be a chance for us to see if the blasts are going down in the CNS, too. Ed and I have to give blood samples tomorrow for HLA typing requested by St. Judes. This HLA typing was done before but St. Judes wants to do their own. I'm not sure why but we will do whatever we need to do.

I feel so badly for Derek. He is facing a week of finals, end of the semester term papers, work, etc. On top of all that, he feels the intense stress of what is going on with his brother...and he is 4 states away. He is really stressed to the limit so please pray for him, too. I know what it is like to be the sibling and watching one of the people who is closest in the world to us having to deal with a deadly disease. It is a very difficult place to be!

Thanks for checking in and for your continued prayers. We are still believing for a miracle for our championship fighter!

Tuesday, December 6, 2005 10:31 PM CST

Just a quick note to say Cameron had a fairly good day. He was a tired out tonight but no aches and pains. It, BTW, is my birthday so I am blessed that he felt good today! We spent some time in prayer for Cam with Pastor Mike, Ercilia and the rest of us. It was a precious time together united in our faith for Cameron's healing.

The percentage of blasts in the blood sample yesterday was 5%! That is down even more than it was on Friday. It is interesting, for sure.

We are enjoying the visit with James and Andy.

Thank you so much to those of you who have donated to the First National Bank Cameron Dalene Fund! It is going right to paying bills and is very much appreciated.

I am thankful today for a nice warm home with my family. It is brutally cold out tonight and we are warm and toasty inside.

Tuesday, December 6, 2005 8:00 AM CST

Cameron's appointment at the clinic went well yesterday. First of all, he felt much better yesterday than Sunday. Thank God. Sunday was kind of rough. His counts were all good except his platelets so he had to get a transfusion for that. He had a reaction which is the first time he has ever had an allergic reaction to any blood products. It didn't take long for the Benadryl to kick in and he was fine.
The doctor came in with a couple of options for treatment that sounded reasonable and do-able. We later talked to the study doctor and Dr. Giller, both in Denver and have agreed to go with this study/treatment plan. We will have to be in Denver next week on Tuesday.

It involves a new drug that is designed to attack leukemia cells and is showing promise with putting patients into remission with less harsh drug therapy than Cam has had in the past. He can do this as a outpatient which is what Cam is most excited about. He really didn't want to go into the hospital again yet. It involves a clinic visit 5 days a week in Denver so we will have to stay up there but can come home on the weekends if we would like. It runs around 28 days. If he goes into remission, we will be looking at going to St. Judes. That isn't confirmed yet but is a strong likelihood. If it doesn't put him into remission, we will have to resort to the other, more standard chemo protocol to try again. That does require hospitalization.

We are still putting our hope in the Lord to heal and he wouldn't even have to go through this. We are encouraged that he felt better rather than worse yesterday. An interesting thing to consider is that in Denver, Cam's blood lab results indicated 29% blasts or leukemia cells. On the blood smear on Friday in ABQ is showed 8%. We'll see what the test showed from yesterday.

I am thankful today that James and Andy are here and that they represent so many other friends that would be here if they could. I am truly thankful that Cam felt so much better yesterday. Please keep praying and believing.....I know you are.

Sunday, December 4, 2005 8:05 PM CST

Thanks for checking in on us. I know so many people are wanting to know what is happening here.

Yesterday was a good day. Cameron felt pretty good except his appetite has decreased significantly. He wants to eat and food tastes ok but he just can't eat very much.

Last night, Pastor Tom and his wife, Becky came over to spend some time with us and pray with us. We were all feeling encouraged at that point.

This morning, Cam came in and was complaining of pain in his leg and a headache. His eating has deteriorated even more today. He looks pale and does not have much energy. The difference in his appearance in one day is not good.

I went to church and got lots of encouragement and prayers from the people there. Ed and I know we have to totally surrender our son to God and He will take care of him.

We will be going to Albuquerque tomorrow afternoon, again, and hopefully, we'll know more then. Our dear friend, Andy Jones and our "son" James Levesque are coming here from Connecticut tomorrow. They feel strongly that they should pray with Cameron for healing. We are believing with them. We know God is ABLE to heal. He is the same yesterday, today and forever and he is the Healer. Please agree with us for this miracle.

I am thankful today for another day we have spent together as a family, just being together.

Friday, December 2, 2005 5:46 PM CST

Well, we got home a while ago from Albuquerque. Cam got the platelets as we thought. His other blood counts were still looking pretty good.

We didn't learn anything new, really. Dr. Frost talked to us about a few options that might be available that Cam would qualify for. She gave us copies of these options to read over. It is a lot of information that we haven't had time to look at yet. She has contacted St. Jude's but didn't get a hold of them yet. We're waiting for a call back from them. There is no word about if there is an unrelated matched donor we could use for another transplant or even if they have checked on it.

So, we came away feeling like we don't know anything more than when we went. She did talk frankly with Cameron about what would happen if he decided he didn't want to proceed with further treatment. Of course, that was hard to hear. Our faith in God to heal Cam is still is by far our greatest Hope.

The insurance company did come back with the official denial of paying for the IL-2. Now, we are not continuing with the medication with the new developments but we have to pay for the meds he already had.....$900.00 for just over a week's worth.

I'm sure we will have more battles with the insurance company unless we go to St. Judes. Even there, they try to collect from insurance companies. It is unbelievable that at a time when we are worried about losing our son, we have to think in these terms $$$.

I'm going to try to stop complaining about all that and just enjoy the boys tonight. Cam and I laughed and joked all the way home from Albuquerque and even in the clinic, we played a version of Cranium and had some fun.

Thank you for so many nice, encouraging comments in the guest book, e-mail and phone calls.

Friday, December 2, 2005 8:10 AM CST

We are off to Albuquerque to clinic. They will do blood work, likely get platelets and most importantly, we will be consulting with Dr. Frost about our options. We are dreading this visit but need some answers.

I'll write more when I am able to report something.

Thanks for checking in and for your continued prayers and support.

Wednesday, November 30, 2005 6:45 PM CST

We have come to the most desperate fork in the road we have had to face in this five year battle.

Yesterday in Denver, Cameron had a bone marrow biospy which revealed that his bone marrow is full of leukemia, once again and it is even spilling over into his blood. There were blast cells in the blood. The other blood counts looked fairly good with the exception of platelets. They were at 50,000.

The sore back and some other small aches and pains made me very concerned but I still did not want to believe it was back, especially since he had just started to take the IL-2. I was hoping those symptoms were caused by that new medication......not so.

The doctor went ahead and gave him some more of Chad's leukocytes in hopes that might slow the progress some while we are looking for options that are available to us. The options are few and without much promise. The best one we have is the power of our Lord to heal our boy. Cameron is standing on that with tenacity you would not believe. He still refuses to believe this disease is going to win the battle for his life. We talked extensively on the drive home about facing the reality of what this means and the fact that there are not any promising treatments. He understands that and still refuses to be defeated. What an example he is for all of us.

Gotta go....I'm exhausted emotionally and physically. The drive home from Denver today was difficult. I drove Ed's jeep and fought 40-50 mile an hour winds head on most of the way.

I'm thankful today for the time I had to spend with Cam driving home. He is just fun to be with. I'm thankful, too, for the health of the rest of our family.

Sunday, November 27, 2005 8:25 PM CST

Day +110
Cam has been feeling up and down today. Some of the time, he says he doesn't feel good....all-over yucky. Other times, he says his back hurts, then he is fine. It is hard to know what to do for him other than offer him some Tylenol and encourage him to rest.

Right now he is feeling good but it is almost time for the next shot. He doesn't mind the shots too much.

We will be leaving for Denver right after I get out of work tomorrow. I have to work tomorrow to make up for Tuesday. I wish we could leave early in the day to get there before dark.....just wishful thinking, not reality.

I sure hope we get good news from the insurance company tomorrow!

Gotta go play nurse and give the shot. I'll write more after the appointment on Tuesday.

I'm thankful today for a God who is faithful even when times are uncertain and a little scarey.

Friday, November 25, 2005 10:30 PM CST

WEll, the day came and went with no word from the insurance company. We were sure we would hear something today but nothing. Maybe they were off for the long weekend.

Cameron is starting to feel more effects of the IL-2. Last night, around 4:00am he came into our room in tears because his back hurt a lot. I'm not sure why it would cause his back to hurt, but we don't know any other reason for the pain.

Today, he didn't look good and felt kinda yucky. He even threw up when he went for a ride with Derek and Matt. His appetite is down, too. Even his favorite foods don't go sound very appealling to him. He keeps wanting to keep going, though. He sits or lays down for a while and then wants to get up and do something.

I'm thankful tonight for Chad's sense of humor. He is laughing and laughing right now. When he laughs, it is hard not to laugh with him. As they say, laughter is good medicine.

Thursday, November 24, 2005 2:45 PM CST

Day +107
HAPPY THANKSGIVING
This is the 5th year we have thanked God that we still have Cameron with us.

Our hearts go out to Ken and Barb Candler and Carbet and Karen Meyers at the loss of their daughter and niece, Lauren Candler. She was killed two days ago in an awful accident at the age of 15. We know we are battling for Cameron's life each and every day. These parents had no idea they were going to see their daughter for the last time two days ago. We all need to cherish each of our children every day because we never know when an accident can claim their lives, too. Hug your kids today. I am so glad that I can hug Derek today. It was wonderful to have him and his friend come last night and have them hanging around here.

I am cooking the turkey. Everything is pretty set. I even made lefse this morning for those of you who know what that is. It is a Norwegian food we got for special occasions made by my mom so I am trying to carry over that tradition. Hers is still so much better than mine, though.

I am thankful today for too many things to mention. I'll enumerate more in the days to come......the potatoes are calling.

Tuesday, November 22, 2005 5:53 PM CST

Cameron has had two doses of the IL-2 and has handled them with no problems. Dr. Rock from here in Santa Fe was wonderful to come in and supervise the injections, yesterday being her day off even. We had to convince the home health agency who is supplying the medication to let us start yesterday in spite of the fact that we don't have insurance approval yet. They finally agreed to give us one week's supply to start with. I'm glad we didn't have to postpone starting the treatment.

He has a stuffy nose and has some sort of like cold symptoms but that is unlikely caused by the IL-2. It is possible it is, though. We just have to watch it.

We haven't heard from the insurance company yet. We will likely hear tomorrow.

We want to publicly thank Doug and Jacque Blauvelt for the very generous check you sent us to help out with our expenses! How timely and VERY much appreciated.

Many others have asked about what they can do if they want to donate to help with all the medical expenses we have. There is a fund set up at the First National Bank of Santa Fe for Cam. Any donations are tax deductible. I'll gladly send anyone a receipt or the banker told me that the cancelled check would be enough to claim a donation on taxes. If anyone wants to send something directly to the bank, the address is below. Just state that it is to be deposited in the savings account medical fund for Cameron Dalene. It also has Edward's name on the account. They advised me not to give the account number on the web page over the internet.

First National Bank of Santa Fe
62 Lincoln Ave.
Santa Fe NM 87501

Thanks so much for checking on us. We are looking forward to a few days off and spending time at home with the whole family. Happy Thanksgiving to you all!!!

I'm thankful today for the generosity of the Blauvelts and that Cameron has tolerated the first doses of IL-2.

Friday, November 18, 2005 10:04 PM CST

Day +101

Can you believe we reached the Day 100 milestone without hardly noticing. After the last transplant, we were celebrating. This time, we are facing another challenge.

Cam continues to feel and look good. He had a drum lesson today and played some basketball with some friends at the local community center. He's still keeping up with his school work with the hopes that he can go back soon.

He is scheduled to start the IL-2 shots on Monday here in Santa Fe. We are fortunate that one of the pediatricians in our primary care group is a peds oncologist. She will supervise the first few shots until everyone is comfortable that he will not have any serious negative reactions to the meds.

We heard from the insurance company that they have received from the Denver docs some new articles and information about the use of this drug for leukemia treatment. The medical director is reviewing the literature and will make a final decision by Wednesday.

In the mean time, we are trying to learn more about the foundations, organizationa and individuals who might be willing to help us with the cost of this medication.

We are keeping positive and keeping our faith that God is still ultimately in control of this whole situation. We are looking forward to having Derek and his friend, Matt, come next week to celebrate Thanksgiving with us. It will be so great to have them here.

I'm thankful today for the dedicated people who are working so hard to help Cameron fight this disease in any way they can.

Wednesday, November 16, 2005 7:46 PM CST

Day +99

I have been putting off posting this update because I am trying to assimilate what is going on.

On Monday, we went to Albuquerque for a check-up exam and blood work. AFter a good report on the check-up, Dr. Winter checked to see if they had received any further instructions from Dr. Giller in Denver as to how he wanted them to follow-up with Cameron. He found that they had received an e-mail from Dr. Giller about the bone marrow results from two weeks earlier. The genetics testing results had come back late last week. There is "reason to be concerned" about some of the results. Some of the cells in the bone marrow carry the same genetic markers that were found in the relapse marrow back in April. The bone marrow is also 95% Chad's and 5% of Cameron's that is hanging around trying to create problems. These are indicators that the leukemia is trying hard to come back. There was one "suspicious looking" cell and 9% are immature cells that could likely turn into leukemia cells.

The best weapon we have against it now is the intraleukem 2 treatment. It needs to get started right away. It is supposed to build the immune system more and it targets bad, cancer cells and kills them. This is especially true in cancers with tumors. The insurance company is still balking at paying for it but we are waiting for one more appeal before it will be ruled out altogether. We have learned that the treatment will be approximately $5,000 for 3 months, 3 months off and then another 3 months @$5,000 That goes on for 2 years. We are checking around to see how we can get some help for this because we are strapped to the limit with other bills, etc. We will make it happen one way or another, though. We don't have any other options.

Another bone marrow biopsy will be done the week after Thanksgiving and Cam will possibly get another dose of Chad's cells. I'll have to miss more work it looks like.

Cam continues to be upbeat and not worried, at least not outwardly. I have been upset but God continues to give me grace and strength to work and take care of things I need to do at home. By nightfall, I am totally spent, emotionally and physically. Well, tomorrow is another day. Hopefully, we will know more about when we can start this treatment by tomorrow, insurance or not.

I am thankful that through it all, Cameron continues to be such a highlight of our lives. He has such a wonderful sense of humor, rarely complains about anything and he is just delightful to be around. That is a gift not many of us possess to the degree he has it.

Thanks for continuing to check in with us and for your support, encouragement and prayers.

Saturday, November 12, 2005 3:12 PM CST

As I said several days ago, no news is good news. Cameron continues to feel and look great. He is getting more and more anxious to get back to school and "normal" life. I am a little more tenuous about that but don't really tell him that.
One concern we have dealt with this week is that the insurance has denied paying for the IL-2 treatment Dr. Giller feels Cameron needs to kick the leukemia for good. Our insurance contact person is going to try again so we are not giving up yet. If they deny it again, we will have to see what other options we have for paying for this important, although somewhat experimental, treatment.

Cameron is enjoying the day in Albuquerque with the Weems family. They went to see an international fencing tournament and to see a movie. It is an absolutely gorgeous Fall day here in NM.

Cam has a clinic visit in Albuquerque on Monday for a physical exam and labs. I'll update those results when I have them.

Thanks for checking in on us. BTW my arthritis has been better for the most part....the pain is always there to varying degrees. I found out, though, that I am now dealing with more osteoarthritis and the rheumatoid arthritis I have been treated for for years is in remission. Now the treatment plan will change toward osteo. I don't know if that is good news or not. We'll see.

Wednesday, November 2, 2005 8:02 PM CST

Day +85
We got home safely from Denver last night after a pretty long day at the clinic. The bone marrow and spinal went well but there is always so much waiting time!...especially when you are anxious to leave because you have a 6 hour drive home. We got home around 10:00.

We just got a call from Dr. Giller with the report that Cam's marrow shows he is still in remission. YEAH!!!!! We have to wait a week or so to find out the other genetic studies' reports. We are still waiting on the insurance company, too, about their decision if they will or will not cover the IL-2 treatment.

We are tired tonight after another busy day back at work/school so we will likely turn in a little early. (I always intend to make that happen and then usually don't do it.)

I'm thankful today for the wonderful bone marrow results!! I'm also thankful for my terrific boys. I am blessed and I love them all so much.

Monday, October 31, 2005 5:02 PM CST

Day +83
Our trip up here yesterday was good although we did have some heavy rain for about 20 miles followed by some light snow for another 20 miles as we approached Denver. There were no road problems, though.

Cameron's exam and lab work looked good today. We are still trying to get approval from the insurance company to get IL-2 treatment. this is a new treatment that further boosts the t-cells and also contains the "killer cells" that target resistent leukemia. Since cam has shown no graft vs host yet, that would be the next step. I'm not sure when it would start or how expensive it will be if insurance denies it. We learned today, the treatment consists of a daily shot for 3 months, no shots for 3 months, etc. for 2 years. Doesn't sound too appealing but if it is what Cam needs for long term survival, then we will do it!!

We had some sobering news. We asked about Cam's "neighbor", the 15 year old boy in the room next to Cam's while on the transplant floor. I spoke to his mom quite a bit. They were planning on being discharged to Brent's place about the time we left, but instead, he got sicker, his lungs got worse and he didn't make it. He died soon after we left Denver. Wow is that hard news to take! We are praying for his family at such a horrible loss.

On a much lighter note, Cam was thrilled that we could take his dog, Blaze up here to Denver with us. He has had quite a good time with his "cousin", Sydney. They are both big dogs and make quite a ruckus when they wrestle around. They seem to be developing a good doggie friendship.

I'll write more tomorrow after Cam's bone marrow. We are not expecting anything but good results but I get a little nervous, anyway.

I am thankful today for Cam's continued good health and for a lovely home we are welcomed into when we come to Denver.

Saturday, October 29, 2005 9:15 AM CDT

Day +81 and HAPPY BIRTHDAY to Cameron! It is his 14th birthday. We are so proud of him and the young man he is becoming. With all that he has been through in the last 5 years, it is remarkable that he keeps such a positive outlook and spirit. God has blessed him (and us).

We will have a small family celebration today and eat out somewhere that he chooses tomorrow after church. Then Cam and I have to head up to Denver, again. He has an appointment on Monday and a bone marrow on Tuesday. We'll have to plan a party with a few friends a little later.

He went to his school to say hi to a few people yesterday. When he went to hand in some papers to his Chemistry teacher, the teacher asked him if he could stay for a little bit to get some more personal instruction. Cam stay and ended up taking a quiz. He got a 100% on it so I am pleased that he is learning the right stuff while studying at home, at least in that class.

I am thankful today for the 14 wonderful years we have had with Cameron. He has been such a blessing to us from the time he was born until today.

Wednesday, October 26, 2005 7:33 AM CDT

Just a quick note before I head out to work that we didn't go to Albuquerque on Monday as planned. The Nurse Practitioner in Denver didn't seem to think it was necessary since Cam is doing so well and his breathing has improved. I had so much to do on my day off that I took the time to those rather than drive an hour one way if it was not necessary.

He continues to do fine. I'll post a recent picture soon so you can see how his hair is growing in. H looks great, I think ( could be a little prejudiced :)

A GREAT BIG THANK YOU to El Dorado Community Church who held a fund raiser for a community project and decided to give the money to us. We received a check for $1000.00 in the mail yesterday. Thank you SOO much. The pastor's wife from that church is a secretary at Cameron's school and El Dorado is the community where the school is that I work at.

Sunday, October 23, 2005 8:46 AM CDT

Day +75
Thank you so much for continuing to check in on Cameron and the family. I won't be writing as much since there are few changes from one day to the next. When anything good or bad happens with Cameron I will definitely write about it so if you are interested, keep checking for anything new.

He has an appointment tomorrow in Albuquerque to check on his lungs and to get blood counts. I will report the results of that visit.

Believe me when I say, we are glad there isn't much to write about! Cam took a long bike ride with his friend, Walker yesterday after Walker spent the night. Kimberely has started tutoring a few hours a week again so that helps give him some more guidance with his school work.

I haven't heard anything new about the xrays I had taken. My rheumatologist is out on sick leave...had open heart surgery not long ago....so that can explain the delay. The doctors who are covering his case load have their hands full. I am still struggling with a lot of pain, though. I have tried everything I know...Advil, Aleve, glucosamine, jacuzzi, massage, along with the regular anti-inflammatory meds I take regularly. I hope to find a solution that doesn't involve surgery!

Tuesday, October 18, 2005 6:17 PM CDT

Day +70
Days seem to fly by....Day +70 already?!

Cameron continues to feel good except he is not enjoying spending so much time alone or making himself do school work when I am away at work. He is anxious to get back to school. Hopefully, that will be in about a month and a half.

We were very sad to hear that my brother Larry's Golden Retriever, Vince, died last week. Cameron became very attached to both Vince and his "sister" Sydney when we were spending a lot of time at their house. They actually played a part in Cameron's recovery....he enjoyed being with them that much. Vince apparently had cancer for a while and they didn't know it. He was only 4 years old and a wonderful dog.

Although everything is going well here, my arthritis is acting up a lot. I am having so much knee, ankle and shoulder pain that I had to go for x-rays this week to decide the best way to proceed. I don't want to live in this kind of pain all the time but don't look forward to any surgery either. We'll see what the doctor recommends.

I am thankful today for the beautiful rain we are having. It refreshes the air so nicely.

Friday, October 14, 2005 4:40 PM CDT

We went to the clinic in Albuquerque for the first time in months or since the transplant. Everyone there was so nice and happy to see that Cameron is doing so well. We had to follow-up so shortly after the clinic on Monday in Denver because the doc want to be sure his lung issue is not getting any worse and is clearing up. There are still some sounds in the lungs but his airway is clear. He just has to continue on his inhaler and check again in a week. We haven't gotten his counts from today yet but I don't expect any problems.

Chad didn't have school yesterday or today so he came to the clinic with us. He was pretty good there.

I want to say a BIG THANK YOU to John and Michele for letting me drive their Jeep for the past few days while my van was in the shop. What a HUGE blessing not to have to rent a car. We got the van back last night after writing a big check....GULP. We just can't seem to get a break financially. The bills just keep coming from every direction. I know we are not alone in that area.

Thanks, too, to my friends from El Dorado who so graciously provided some meals this week to help ease my transition back into the work routine. It did help a lot.

Tuesday, October 11, 2005 5:03 PM CDT

Day +63

Cam and Ed got home from Denver last night. The spinal went well but the doctor was once again a little concerned about a cough Cam has. His lungs sounded a little congested so he had to have a lung x-ray and a breathing treatment. It made the appointment much longer than they expected. His blood counts are good although the platelets dropped some. The doctor explained that by the fact that Cameron recently started taking Bactrim, again, to prevent pneumonia. Overall, he is still doing very well.

My first day back at school went well. The staff was so kind to welcome me back by giving me a beautiful bouquet of fresh flowers and lots of nice hugs and greetings. I felt like they actually missed me. I was a bit overwhelmed with work but it won't take long to get back in the swing of things.

I am thankful today for a good job and lots of nice people I am privileged to work with. Of course, I am most grateful that Cam continues to be "healthy"!!!!

Sunday, October 9, 2005 11:49 AM CDT

Day +61
We enjoy each day that Cameron is feeling good. I do not take any day for granted. He continues to feel terrific although without the same amount of energy you would expect of an almost 14 year old. The energy is improving, though.

Ed and Cameron just left to go to Denver. Cam has an appointment at 8:15 in the morning for a LP (lumbar puncture or spinal, with chemo). If you have watched the national weather, you have maybe seen that Denver is expected to get snow tonight and through the day tomorrow. Ed and Cam left a little earlier than planned to beat any hazardous driving. There is an area of high elevation right on the Colorado, NM border call the Raton Pass. It tends to get snow before most other areas so it is always an area to watch for.

Ed has the day off tomorrow for Columbus Day and I am going back to work for the first day tomorrow so he got the privilege of going with Cameron. I won't miss the drive but I will miss being with Cameron and hearing first hand from the doctors their latest thoughts and plans.

I am thankful today for the plan He has for our lives. We can't figure them out sometimes but I know he has a better plan for us than we can imagine. In Jeremiah, a verse says, "I know the plans I have for you, says the Lord plans to prosper you and not to harm you; plans for a hope and a future."

Thursday, October 6, 2005 9:10 AM CDT

"No news is good news" as they say. In our case, it is true. Cameron continues to feel good. His hair is growing nicely although he would like it to grow a lot faster! Monday, he had a big day. He went to work with his dad to help him set up a cook out for his boss who has been transferred out of state. He got to meet, or re-meet, lots of people and was kept pretty busy. He reassured me that after the handshaking, he used his purell frequently!

Since our van broke down on Sunday, (we learned that it needs a new transmission :( yikes!), we have been without a vehicle this week. Cam really wanted to visit his friends after school so asked if he could ride his bike to the school. It is about 3 miles so I said yes. Kimberly brought him home so he didn't have to do the round trip but it was still quite a ride for him. He was pretty tired out that evening.

We were able to postpone the appointment in Denver till Monday. Ed has a holiday that day so he will drive him up there.

Since then we have been home working on school work. I have been doing some damage control on the phone with hospitals, clinics and insurance companies about some bills that are not being paid. This is always a huge frustration for me but it has to be done. The totals at the end of some of these bills are totally unbelievable. One bill by itself was $178,942!!!! Another was $14,800.

I am thankful today for insurance coverage!!! (Even if I have to wait on hold forever to talk to one of their agents)

Monday, October 3, 2005 1:43 PM CDT

Day +55

We had a good weekend. Cameron continues to feel good, Praise God. It almost feels like we are getting back to normal around here. I feel caught up on most things.

The only bad note is that our van broke down when I was almost home from church yesterday. We brought it in to the mechanic this morning to see what's wrong with it. We are supposed to leave tomorrow to drive back to Denver for a Wednesday morning appointment for a spinal test and intrathecal (spinal) chemo. I will try to postpone the appointment a till Friday or something so can get it fixed. Otherwise, I guess we will have to rent a car. There is always some challenge.

I am thankful for this beautiful Fall day!

Friday, September 30, 2005 3:35 PM CDT

Day +52

My heart is so heavy today because I learned that another child, a little girl who had leukemia, died yesterday. I know only this child through the e-mail list I am a part of as a parent of a kid with leukemia. She had a matched sibling bone marrow transplant just this past July....only a couple of weeks before Cameron had his 2nd transplant. She died of complications with her lungs. It is so sobering to know that this is what could have happened to Cameron.

I am so thankful that Cameron is doing so well and I can enjoy his company for another day. Every day is precious and should not be taken for granted with our sick kids or with our other children.

Well, I don't know how Blaze is feeling right now. We took him in to the vet to get "fixed". We will pick him up in a few minutes.

My cold got quite a bit worse since I wrote last. I have been kinda miserable. I am still praying Cam doesn't get it from me. I would feel so terrible. But I have still kept busy vacuum brushing all the blinds, (they get so dusty out here in the desert) and doing other cleaning to get the house as clean as possible to keep things safe for Cameron. The doctors are quite adamant about keeping him away from dust, etc.

Better go get Blaze....poor baby!

I'm ESPECIALLY thankful today that Cameron is doing so well and is actually healthy for now.

Wednesday, September 28, 2005 9:01 AM CDT

It was 7 weeks ago that Cameron had the stem cell transplant and we have moved home! Cameron is strong enough that while I was doing last minute cleaning in the apartment, he pulled several wagons full of stuff down to the car and packed them in. I kept telling him to just wait a few minutes and I would help but he insisted that he was having fun! We got home around 8:15 last night. The dogs, again, were WAY TOO excited. They are going to need lots of attention and some discipline training reminders now that we are going to be home with them more.

I have picked up a cold somewhere so I am concerned that I don't pass it on to Cameron. We still have to be careful.

I am thankful today for a nice home to come home to and a family to share it with.

Monday, September 26, 2005 11:13 PM CDT

We spent the day getting ready to go home. My sister-in-law, Kathleen, gave me a real treat. My arthritis has been really flared up so she hired her house cleaner to clean the apartment for us to get ready to check out. THANK YOU, KATHLEEN and LARRY. Tonight, we got another treat. Brent's Place was given a few tickets to the Monday Night Football game....Broncos vs Chiefs. Cam and I were privileged to go. It was so much fun and we got to sit in the club section. The Broncos won 30-10. It was something we will not soon forget.

Cameron continues to feel so good and is getting some new "peach fuzz" on his head.

I am thankful today for Kathleen and Larry's thoughtfulness and I'm thankful that we get to go home tomorrow.

Saturday, September 24, 2005 9:47 PM CDT

Ed, Chad and our friend, Ercilia arrived here in Denver last evening. Ercilia and I were able to attend a Benny Hinn Crusdae being held here only a couple of miles from our apartment. Our friend from Finland, Marko, is a head usher with the crusade so he got us seats in the front and center. We were really blessed and refreshed by His Spirit.

Today, Ed attended one of the crusade meetings in the afternoon. Cam spent the day with Uncle Larry roasting and making various varieties of green chili. They learned it when they lived in Albuquerque for a few years. Then we ate at their house and enjoyed some of the freshly made green chili.

I look at Cameron and am amazed at how "normal" he acts and his good energy. The energy isn't what it used to be before he relapsed, but it is AMAZING considering what he has been through in his body.

I am thankful today for God's blessings and for his answers to prayer.

Thursday, September 22, 2005 5:50 PM CDT

Day +44
Cameron had his surgery to have the broviac removed. We were there all morning and he did fine although a little sore. He is relieved to have that tube out...no more saline and heparine flushes every night or "line care" every morning.

We took it easy the rest of the day and followed the impending storm in the Gulf. My prayers are with everyone to be safe.

I am thankful today for the beautiful fall day we had today. This is my favorite season. I love the cooler temperatures after a long, hot summer.

Wednesday, September 21, 2005 9:51 PM CDT

This was a day off for us. Cameron isn't feeling any different yet after getting the new cells. Hopefully, we will see graft vs host before too long.

We got free tickets to see the Rockies' Major League Baseball game. We got club tickets which were really good seats. It was fun although we don't know much about the Rockies. They lost to the Padres 4-1.

We have to be at the hospital at 7:45 tomorrow morning for Cameron to have surgery to get his external Broviac removed. He still has a port-a-cath in place for further treatment when needed.

Then the waiting continues.....

Tuesday, September 20, 2005 7:51 PM CDT

We had a long day at the clinic today. We arrived at 11:30 and just got back to the apartment at 7:00. Cam received Chad's stem cells. He got twice as many cells than the first infusion he got while in the hospital. The DMSO substance that is used to freeze the cells, gets infused into Cameron as he gets the cells. It gives off a bad odor. It is definitely present in the room where Cameron is. Hopefully, it will fade quickly like it did last time.
It also caused his blood pressure to get pretty high but by the end of the day, he had received lots of hydration and had gotten rid of a lot of it so his blood pressure was down to where it should be. He feels fine.

We have tomorrow off from the clinic so we will do something fun like take in a movie or something.

Today, I am thankful for the dedicated people, doctors, researchers, nurses, etc. who gave given so much of their lives to treat our kids who have cancer. I wish we could somehow put them all out of business because there would be no more need for pediatric oncologists, etc. But because there is still a great need for them, we sure are glad they are here.

Monday, September 19, 2005 6:24 PM CDT

Day +41
Happy Birthday, Eddie!! I wish we could be there to finish your birthday cake with you. At least we could celebrate a little early.

Cameron had another fabulous clinic visit. His counts are "pristine" as Dr. Giller described them. He continues to look and feel fine. MORE GOOD NEWS! The more complex analysis of Cameron's bone marrow from last week showed no signs of the genetic markers that were seen in the leukemia cells. Dr. Giller reiterated, once again, that the only way we will know if this procedure has worked in getting rid of the leukemia once and for all is with periodic bone marrow tests and time. We have to put our trust in God for the ultimate end results.

Tomorrow will be another big day for Cam when he gets more of Chad's stem cells. I'll report how that goes tomorrow night.

Sunday, September 18, 2005 9:38 AM CDT

This week has flown by. We have to leave here to return to Denver in a few hours. I am going to go to church for the first time in several weeks. Then we will meet at Gabriel's for lunch to celebrate Ed's "39th" birthday. He wishes. We can eat there because they have tables outside so Cam won't be as likely to be exposed to anything harmful.

Cameron was pretty tired yesterday. He had spent a lot of time with Walker which was very good for his spirits. Even though he was tired today, it was worth it.

Our friend, Ercilia, spent some time with us on Friday and yesterday. It was good to have her here. She is such an encouragement.

We have a busy week scheduled in Denver. We go to clinic tomorrow, Cameron gets some more of Chad's stem cells infused on Tuesday and he will be getting his broviac surgically removed on Thursday. Ed and Chad are coming up on Friday. Add school work to that and we will be busy.

I am thankful today that Cameron continues to feels good and that we have had this time home. Everyday I am thankful for friends, family and for a God who is faithful at all times.

Thursday, September 15, 2005 9:37 PM CDT

We are enjoying being home. It feels so normal and natural. I have been working double time trying to get caught up in just a few days. Cam has been working double time getting caught up with a few close friends.

We met with Cam's teachers today to get updated on what is happening in the classes and on what he should be doing. He got more work and some better direction. We both feel like we are on the right track as far as school goes.

Cam had a slight red mark on his forehead. I got all excited thinking it was the beginning of some gvh. But it went away in a short amount of time.

I am so thankful today for my home and family. I am thankful that Cameron has been feeling good and is happy. I am also thankful for supportive friends and people who pray for us.

Tuesday, September 13, 2005 7:42 PM CDT

Day +38
We are HOME! It feels so good to be here. Blaze and Dimitri were crazy happy to see us. Chad was so surprised when I got him off the bus that he nearly cried. Our friends, Kimberly and Walker were here to greet us, too.

I have no news except that Cameron is feeling good. His back has still been a little sore but that's about it.

Monday, September 12, 2005 10:07 PM CDT

Day +34
Cam's bone marrow aspirate and spinal went well today. He usually gets sedated more heavily than they sedated him today. It scared him a little. He was awake enough this time to remember all of it and to feel it some. He is sore tonight but handling it fine.

Dr. Giller called about an hour ago and said he had looked at the spinal and bone marrow samples himself and that they look good, with no concerns. The pathologist will look at it, too, tomorrow. His counts were all in the normal range today.....another sign that the leukemia hasn't reared it's ugly head again. Thank God!!!!!

We were told that we can go home for a few days! We will leave tomorrow morning and be home for several days. We can't wait! We haven't been home since about Aug 2.

Sunday, September 11, 2005 11:10 PM CDT

Ed finished his course and took the test yesterday. He earned the Professional Project Manager's license. He came back to Denver at noon today and picked Chad up. They headed home around 3:00. I cleaned the apartment really good, did some laundry and just hung out with Cameron. We went and played a round of miniature golf then took a walk with Larry, Kathy and their dogs.

Looming in the back of my mind all day has been the bone marrow aspirate Cameron will be having done tomorrow. It will forever be scarey when they do one because we just Do NOT know if the leukemia has been erraticated completely. There is a chance they will find the unthinkable....I can't even say it.

My thoughts have also been reflecting about this day being September 11. It is a day that carries with it such terrible memories for so many people in our country. We also continue to be stunned by the images we see and the stories we hear from the Katrina victims. These tragedies are front and center in the news, as they should be. However, what the news media doesn't seem to know or give attention to is the fact that September is also Childhood Cancer Awareness Month. Our children are also victims, as are their families, of a tragedy that weighs as heavily as those involved in these tragedies. We need more government funds to work towards cures for our kids and for research to find the causes of many of the childhood cancers so they can be prevented. I don't hear any government officials pledging Billions toward this most worthy cause which affects thousands of innocent children. My heart is breaking for so many, many families I know who are hurting today because their beloved child is suffering, or are taken from them too early or are dealing with the after affects of having had cancer.

Thanks for "listening" to what's on my heart today. Please pray for Cameron tomorrow, that the bone marrow results will be fine. Thanks so much for your loving support.

Friday, September 9, 2005 6:05 PM CDT

September 9th already? How did that happen?

Yesterday, we went shopping for some new school shoes for both boys. Cam really needed them for home schooling! :) Chad really did need some new shoes. He is not real fun to shop with but he did ok.

In the afternoon, we went on a field trip with the volunteer coordinator here at Brent's Place. We went to the "Wings Over the Rockies" museum. It is a museum of air and space. It is a pretty impressive display of airplanes, various countries' air uniforms, history of flight, etc. It was fun. Cam really enjoyed it and Chad just had fun walking around randomly. Cam was pretty worn out last night. That was quite a bit of activity for him. Because he is doing so well, it is tempting to forget what his body has been through in the last month.

Today he did quite a bit of school work. We spent some time in the "teen room". It has an air hockey table, foosball game, tv, exercise bike, etc. It is just nice to have a different place to hang out. Chad watched the "Barney's Great Adventure" movie there. I wonder if there is some sort of law against watching Barney in the "teen room"!

We are so happy that our friend, Ercilia, is staying with Blaze and Dimitri for a few days. They get lonesome with us gone and Ed and Chad are gone all day even when they are in Santa Fe. Cam and I miss those two furry friends soooo much.

Wednesday, September 7, 2005 4:39 PM CDT

Day +29
Cam's clinic appointment went remarkably well, again. NO problems! Isn't that incredible at Day +29 after a transplant! His counts continue to be great except the ALC which is still low. It is still expected to be low and it will likely be a while before it goes up significantly.

Dr. Quinones was not exactly alarmed that Chad has a cold but was not pleased about it either. He said Cam really doesn't have what it takes to resist it unless it is a very mild strain of the cold virus. He actually said it could set off graft vs host which may not be a bad thing. There is such a delicate balance between healthy and very sick with Cameron....nerve-racking!

Chad is much better today, sneezing less. I'm sure the triaminic is helping that. But we decided it would be best for Cam to spend the day at Larry and Kathy's house, again. He is doing school work and playing with their dogs.

Tuesday, September 6, 2005 7:58 PM CDT

The activity level increases a LOT with Chad here...the cleaning, the laundry, the cooking. That was expected and I'm ok with all that. What we were not expecting and are not happy about is that he has come down with a cold! His nose is runnning, he is sneezing, he is tired, his eyes are watering. This is NOT ok for Cameron. We worked hard to keep them apart all day although this apartment is small. By afternoon, we decided it was best for Cameron to spend the afternoon at Larry and Kathy's house to keep them separated. I'm leaving here now to go get him. The last thing we need is for Cam to get sick!!!

Another thing to pray about.

Monday, September 5, 2005 9:24 PM CDT

Day +27
I hope you had a nice Labor Day. I have nothing to report about Cameron. He is doing great. He took Larry's bike out for a bike ride today, he is eating normally, no pain, no complaints.

Ed and Chad arrived here late Saturday night. We took it easy yesterday, went out to eat at a wonderful Italian restaurant with Larry and Kathy, JB and Carrie last night. Ed left for Phoenix this morning so Chad is here with us.

Saturday, September 3, 2005 10:44 AM CDT

Day +25
Cam and I are well rested and ready for another day. Cam has to spend some time on school work today since he took the day off yesterday. Ed and Chad are coming up this afternoon. Chad will be staying here with Cam and me this week because Ed is going to a conference in Phoenix next week. It will keep me hopping but I'll be glad to have Chad here.

Cam's visit to the clinic yesterday was good. He got a pentamadine treatment....it is a pneumonia preventative medication. I, once again, asked the doctor if Cam is doing TOO well? He said their first concern was to get him recovered from the intense chemo toxicity and then for his bone marrow to recover and begin making good cells. Both of those have happened now so the docs are happy. Now, they will hope to see the signs of graft vs host. They are happy there wasn't much G v H while his immune system was still so low because it could have been quite a difficult battle. Now, they feel his body is ready to handle it.

His counts looked like this
WBC 3.2 normal 4.0 - 10.5
RBC 3.48 4.2 - 5.6
HBG 11.2 11.5 - 14.5
PLT 208!!!!! 150-500
ANC 1632 anything over 1500 is good
ALC 563 (indicates the ability to fight viruses, etc) We want to see this over 1500.

Thanks, again, for checking in. The underlying stress of what is ahead for Cam is so heavy that we continue to need your prayers and support.

Friday, September 2, 2005 10:39 PM CDT

Day +24
I just wrote a long update and lost it before it got to the web page. I'm too tired to type it all again but I'll just quickly report that Cam had a good clinic appointment today. His counts look terrific and his exam was unremarkable.

I'll write more tomorrow.

Wednesday, August 31, 2005 10:05 PM CDT

Day +22

There is absolutely nothing to report. Cameron continues to feel good and is spending a few hours a day on school work. We are just biding our time until he gets Graft vs Host or more cells or we get permission to go home.

Last night, we had dinner with Ed's Aunt Esther. This afternoon, we played mini-golf with Larry and ate dinner at their house.

Thanks for checking in on us.

Monday, August 29, 2005 9:55 PM CDT

Day +20

The clinic visit went very well. Cam's white cell counts are through the roof because we have been giving him GCSF medicine to boost the white cells. Obviously for now, we won't have to continue with that med. We don't have to do any more IV fluids at night, either. The docs are happy with how he is doing and still are telling us to expect Graft vs Host any time between now and 3 months from now.

We went out to eat breakfast. We requested a corner booth in the back of the restaurant away from other customers and "Le Peeps" accommodated us. After we ate, we went into a store and it is interesting how people react when they see Cameron wearing a mask. First they look at him with a curious look, then they look away quickly, sort of embarrassed. Cam just smiles and keeps going.

We received the packet of work from Cam's school. Tomorrow, he has to get to work on some math, social studies, English, Spanish, science. He is dreading it but I think it will be good for him to put his mind to work. I'll switch from nurse to teacher depending on the need at the moment. :>)

Sunday, August 28, 2005 11:11 PM CDT

Day +19

Nothing to report today. Cameron continues to look and feel great....not just good but great. We still have to be careful when he goes in public. He has to wear a mask at all times except when in a private home or car. My biggest challenge has been to give him fluids and GCSF by IV pump. Both are given on different pumps that are new to me. Add those to my newly acquired nursing skills. I should just take the course work and do it right!...become a real RN

We have spent a lot of time just hanging out here at the apartment (I got internet hook-up here now, thanks to Larry) and at Larry and Kathy's house. Cameron was so happy to see Vince and Sydney, Larry's two great dogs. They were just groomed so they are nice and clean and cuddley.

I'll let you know how the clinic visit goes tomorrow. God Bless each of you.

Friday, August 26, 2005 5:19 PM CDT

Day +17
We had an appointment at the clinic this morning. Cam's doing great. He weighs the same as when he was admitted so he hasn't lost any weight. His blood tests and chemistries were all good and he is feeling great. Doesn't it sound too good to be true? God has been so good to us. We continue to pray the stem cells will attack those awful leukemia cells once and for all!!!

Dr. Giller told us to plan on being here for another 4 weeks before going home unless some major complications come up. We need to settle in and not get too anxious to leave although that is harder said than done when Cam appears to be doing so well.

Tonight, I am typing this update from my Uncle Dal and Aunt Judy's computer at their home. They invited us to come for dinner. We are so blessed to have caring family in the area.

Cam's counts looked like this today.

WBC 4.1 still looking good
RBC 3.?? same as before
HGB 12.2 Up from 11.1...he's making new red cells!
PLT 65 up from 54...he's making new platelets!
ANC over 2000...looking good

Thursday, August 25, 2005 11:49 AM CDT

Day 16
Boy Oh Boy was it good to spend the night together in the apartment. I didn't have to leave him alone in that room and get up early to return there.

Last night the home health nurse came and administered the GCSF by IV then showed me how to hook up IV fluids that had to run overnight. The docs really don't want to take a chance on damaging the kidneys any more than that nasty chemo already has by letting him get dehydrated so they are still doing the IV fluids at night. He has to keep track of everything he eats and drinks so they can decide if they can discontinue those fluids.

We have the day off so we are going to drive around Denver and check out the area a little more. I haven't gotten internet hook-up in the apartment yet so I have to use this computer in the main Brent's Place house. I have certainly used a lot of different computers in a lot of different places over the years to update Cam's web page!!

No counts to report today cuz no blood draws!

We are trying to make the best of each and every day and I'm trying hard not to allow the worry about what the future MIGHT hold to rob us of enjoying our time together. I have to leave that in God's hands and trust HIM.

Wednesday, August 24, 2005 10:52 AM CDT

Day +15

And we are discharged!! Actually, we are sitting in room 560 waiting for the doctors to come by for the final word. We are packed up and ready to go. I filled the 8 prescriptions we are leaving with. I won't have easy access to the internet at Brent's Place but I'll do my best to update as often as possible....hopefully daily.

We will have tomorrow off....no hospitals, no doctors. We have to return to the clinic on Friday for blood tests, etc. There is still no sign of Graft VS Host (GVH) but the doctor said it is still early. We will likely see some indications of it any time between now and 3 months from now.

Counts look like this today

WBC 5.1 WOW
RBC 3.49
HGB 11.1 same
PLT 54
ANC 4,182!!!!

Tuesday, August 23, 2005 6:27 PM CDT

More good news. Cam's white cell counts took another significant jump up. He will be discharged tomorrow!! We had another pass away from the hospital for 4 hours this afternoon. We just hung out at our apartment at Brent's Place, again. We started to move some of Cam's stuff out of the hospital into our home-away-from-home.

Now we have to just wait....wait....wait for any signs of graft vs host. Only time will tell if the stem cell transplant was successful in wiping out the remaining leukemia. There is no test to determine if it worked. They will keep a close eye on his bone marrow and counts to determine if the leukemia is returning.....we are all praying that doesn't happen!!!!!

His counts looked like this today:
WBC 2.5 !!!! a good jump up from 1.1 yesterday
RBC 3.46 down slightly from yesterday
HBG 11.1 same
PLT 60 after a transfusion yesterday
ANC 1600 whewwww...yesterday we were happy with 658!

Monday, August 22, 2005 8:38 PM CDT

Two updates in one day! If you didn't see the earlier one, I wrote briefly to say that Cam's white cell count took a nice jump up with an ANC of 658! Along with the good news of the good WBC and ANC was that we were allowed to have a pass out of the hospital for a few hours. We went to our apartment at Brent's Place. Cam hadn't seen it yet. He loves it and just enjoyed being there.

The sad news is that Grandma and Papa had to leave to go home to Springfield. We sure enjoyed having them here. They lifted our spirits every day. It wasn't easy for them to be here since Mom broke her hip a few months ago. But they really made the extra effort and we appreciate it!

Larry and Kathy joined us for pizza and a game of Spades. Then my nephew, Nicholas, his wife, Jerilyn and a couple of their friends came by to visit, too. They have been vacationing in Colorado. It was great to see them.

We are back in the hospital room, now. The hardest part of having a pass out is coming back in. Oh well, I think we will be able to go out again tomorrow.

Please keep praying that Cam will have enough graft vs host and graft vs leukemia to accomplish the task of getting rid of the leukemia cells for good!!!

Monday, August 22, 2005 11:31 AM CDT

Day +13
I am updating early today because I am anxious to share the news that Cam's white cells took a very nice jump...up to 1.1 from .5 yesterday. His ANC is over 650!!! It was 140 yesterday. The goal for discharge was to get an ANC of over 500. Discharge plans will be underway today but will not likely happen till tomorrow or Wednesday. His mouth is feeling better and he is eating a little again. His platelets were down so he got a transfusion this morning.

I will report later on what the doctor has to say as well as about the activities of the day.

Sunday, August 21, 2005 5:38 PM CDT

Day +12

This has been a good day. It started off with the good news that his white cell count was up to .5 his ANC is 1400. Both of those numbers indicate the bone marrow is producing good new cells. He is feeling good, too and his mouth is much better than even yesterday.

His hemoglobin was down a little and so he had to get a red cell transfusion this afternoon. It is only his first red cell transfusion, which is really good for any transplant patient.

Ed and Chad left around noon to go home and check on the dogs, do laundry, etc. before starting a new week. Chad LOVES to come see Cam. Cam knows just what to do to make him laugh and laugh!

This afternoon, we had a room full of visitors. Grandma and Papa, Dal and Judy, their son, Scott, Larry and Kathy were all here. It was fun with lots of chatter and laughter. Cam kept picking a fight with Uncle Larry with the nerf dart gun. Larry held him own and got Cam back several times.

We just heard that Cam is off isolation so he can move around the unit now. Yeah!!!

Counts for today:
WBC .5 up from .3...yippee
RBC 3.07 down some
HGB 9.8 down some requiring the transfusion
PLT 43 down some, might need transfusion soon
ANC 140 UP from 72.....nice

Saturday, August 20, 2005 7:59 PM CDT

Day +11

The white cells were still the same today but the segs and bands are up. Those are the "young" cells that will become white cells. The ANC was up to 72 and 25 new cells were counted. All of those indicate we are certainly moving in the right direction....slowly but surely.

Cam's mouth continues to be his only complaint, that and boredom. Hopefully he will be out of isolation soon so he can move around the unit a little.

Ed and Chad arrived at the Brent's Place apartment around 1:30 a.m. I came to the hospital in the morning while they slept in. Then, I traded places with Ed and took Chad and did laundry. We were told we had to detail the van before Cameron was released from the hospital. Ed took care of that....$150.00. Larry, Kathy, Grandma and Papa kept Cam company while we did our errands.

Counts today were

WBC .3 same
RBC 3.13 nearly the same
HGB 10.2 yesterday 10.3
PLT 58 yesterday 33 before the transfusion
ANC 72 yesterday 43.2 a little step up

Gotta go because Chad is here in the room with us and is getting antsy. He has been here over an hour, though and has been quite calm.

Friday, August 19, 2005 7:56 PM CDT

Day +10
Today was a lot like yesterday. His mouth is still bothering him quite a bit and he has had some headaches off and on. Last night, I had a very difficult time leaving because he wasn't feeling well and his temperature was hovering around the 101 point. But I finally left with instructions to call me if the fever went up at all or if he needed me to come back. I never got that call so I ended up getting a pretty good night's sleep.

The good news is that his white cell count went up very slightly today. We are all hoping that is an indicator that they are growing and will be taking bigger jumps soon!

He had to get another unit of platelets today....not a big deal. He has been put in isolation, again, because the mouth sores he is experiencing are not typical and are likely caused by a virus or bacteria rather than the chemo. Until we know that for sure, he cannot leave the room and we have to take extra precautions when coming and going.

Ed and Chad are on their way here, again, tonight. Derek left for Springfield, MO yesterday to go back to college.

Cam's counts looked like this today

WBC .3 UP from .2
RBC 3.18 about the same as yesterday
HGB 10.3 about the same as yesterday
PLT 33 down some but it is higher now after the transfusion
ANC 43.2 up from 7.8

It has been a stressful week for me emotionally even though Cam has been doing quite well and there haven't been any major complications. I always feel I have to keep "up" for Cam. But my parents being here, visits from other family members, your prayers and words of encouragement have kept me going. Thanks to all of you.

Thursday, August 18, 2005 9:18 PM CDT

This was not such a good day. Cam's mouth has been hurting with sores all day. It affects his eating and how he feels generally. He was flirting with a fever today, too. He has stayed just under that 101 number which they consider a fever. Hopefully his white cells will kick in soon to take care of those things.

School started in Santa Fe today. I'm sure Cameron was feeling the effects of knowing all his friends were there and he is stuck here in the hospital. I can relate since I, too, would be back to work. Life just keeps moving forward while we are sort of stuck.

My Uncle Dal and Aunt Judy came to visit and brought a new game of Dominoes. We played a few games with Grandma and Papa and then with Larry and Kathy when they came by later.

Cameron's counts looked like this today.

WBC .02 same as yesterday
RBC 3.13 down from 3.52
HGB 10.2 down from 11.5
PLT 42 down from 54 yesterday afternoon
ANC 7.8 up ever so slightly from 3.4 yesterday

I can't wait to see those counts coming UP!!

Thanks for checking in and for your support, notes, calls, cards, pictures and especially prayers.

Wednesday, August 17, 2005 7:59 PM CDT

Day +8

Cameron is still doing well. He had to get a platelet transfusion this morning because his count was down to 15K. The platelets boosted the count to 54. For a few days, he has had a loose molar that hurt him but seemed to refuse to come out. Finally, Dr. Quinones asked a dentist to come check it out. He decided just to yank it out. It was necessary for his platelets to be adequate so he wouldn't bleed too much. He handled it fine so now his mouth doesn't hurt as much.

I moved into Brent's Place today. This is a house set up by a family of a young man who lost his battle with cancer. They have 2 bedroom apartments that are kept pristine so it is a safe environment for post-transplant kids to live. I was allowed to move in a little early to get settled before Cameron is released from the hospital. It is a nice place and is only 2 blocks from the hospital. It is also reasonable....only $15.00 a night. I'm tired out tonight. I'm thinking about all of my colleagues who have gotten back to work this week. I wish I was there with you at El Dorado.

Cameron's counts look like this today.
WBC 0.2 same as yesterday
RBC 3.52 up slightly
HGB 11.5 up slightly
PLT 15 this morning, transfusion then 54 this afternoon
ANC 3 down a little

We are just waiting for the white cells to start growing and then he can probably be released from the hospital to stay at Brent's Place for a few weeks before we can go home to Santa Fe.

Tuesday, August 16, 2005 6:31 PM CDT

It has been another uneventful day. I am beginning to be concerned that things are going too well. The doctors assure me they are happy with how things are going. They say we don't need complications to know the chemo has worked. We are just thankful we haven't run into any infections, fevers, etc. while we wait for the counts to come up. The graft vs host disease they are expecting could happen any time between now and three months from now. It could range from very mild to devastatingly severe. We are praying, of course, for Chad's cells to battle the leukemia as hard as necessary to wipe them out but causing as little as possible extra problems. That would be the perfect outcome. I learned from a fellow parent here on the oncology floor that she knows a young man that relapsed after transplant, had the same mini-transplant Cameron has undergone and is now doing well,in high school and running track. That's what we are expecting for Cam with God's help!

Cam had grown quite a bit of nice peach fuzz but tonight it is starting to fall out. It's on his pillow. He is not surprised but doesn't like seeing it come out again.

His counts looked like this today

WBC .2 same as yesterday
RBC 3.46 down slightly
HGB 11.2 down .2 (no transfusions required yet)
PLT 24 this morning and 21 this afternoon (transfuse at 20)

I went and ran some errands for a couple of hours this afternoon. I'm beginning to get to know the area around here a little.

Monday, August 15, 2005 6:36 PM CDT

Day +6
Cameron, miraculously, is still feeling well. He has a mouth sore beginning but it isn't bothering him too much yet. He got very tired and needed a nice, long nap this afternoon...hardly anything to worry about. His counts today looked like this

WBC .02
RBC 3.51
HGB 11.4
PLT 35
ANC 14 next to nothing

Derek came and stayed for a few hours before heading back to Santa Fe. Grandma and Papa were here all day and just left. Kathy is on her way up with KFC for Cam's supper.

Sounds kind of boring, huh? Well, it is but I am glad it is so uneventful.

Thank you to Uncle Roy and Aunt Lori for sending the package with the PSP movie and game!!! He was thrilled to get them.

Sunday, August 14, 2005 10:01 AM CDT

Day +5
I wasn't able to post an update yesterday. It was a day of lots of activity around here. First I'll report on how Cameron is doing then I'll tell you about the day.

Cameron's counts have "bottomed out". His white count was .1 in the morning yesterday and he had to have a platelet transfusion last night. However, in spite of that, he is still feeling good and his appetite is still nearly normal. Thank God for his wonderful blessings on this very deserving young man. He still has some nice peach fuzz on his head but the doc says he will likely lose that in the next few days.

Friday night, Ed, Chad and Derek drove up here. They arrived around 2:00 a.m. so they all slept in on Saturday morning. I got the hospital the usual time, around 8:30 and Cam was sleeping soundly. My parents and Uncle Dal and Aunt Judy came around 11:00 and stayed until Ed and Chad came around 1:30. I took Chad for the day so Ed could spend some time with Cam. Around 3:00, Ed's Aunt Esther and her kids, David and Lucy, visited for a while. Derek arrived somewhere around 5:00. Lots of activity and Cameron loved it and tolerated it with no problem. I took Chad to Larry and Kathy's house and hung out until bedtime. So Cameron had a total of 11 different visitors in his room yesterday; that is if you can call Ed, Derek and me "visitors".

I arrived at the hospital this morning at 9:00 and Cam is atill sleeping nicely. He reportedly had another good night....Thank you Lord. This is day 5 after the transplant. That means we will likely have 5-9 more days until we start to see the white cell count begin to rise. I'll be spending most of the day with Chad again so Ed can be here at the hospital before returning to Santa Fe tonight.

Friday, August 12, 2005 6:57 PM CDT

Oh man, I just wrote a whole update and lost it somehow before I posted it.

The day started off not so good. Cameron wasn't feeling well and was very tired. His eyes were stinging due to the Ara-C, too. He slept quite a while this afternoon and is now feeling better, eating and up and moving around.

His white cell count took a nosedive as was expected from the intense chemo he had. His ANC is around 150. Anything less than 500 puts him in the "neutropenic" category. That means his immune system isn't functioning hardly at all and special precautions have to be made to prevent bacterial, fungal and viral infections. He is taking some preventative meds that help some. Dr. Giller said to expect to wait 7- 10 days before the bone marrow starts to make new cells. This is the window of most vulnerability.

The counts looked like this this morning

WBC - .3 down from 1.9 yesterday
RBC - 3.72 down from 8.83
HGB - 12.6 same as yesterday
PLT - 42,000 down from 60,000 yesterday afternoon (they transfuse when they get to 20,000 or below)

I have to say I am SOOOO proud of how Derek has been handling things at home. Believe me when I say that it isn't easy taking care of Chad and the other stresses involved at home. He has been wonderful and I am so proud of him. Hopefully, he is coming up here, again, this weekend to see us before he heads back to Evangel University this week. Ed and Chad are coming, too. I am blessed to have such a wonderful family, both immediate and extended family.

Thursday, August 11, 2005 7:58 PM CDT

I hope you are as happy to read as I am to report that Cameron has had another remarkably good day. We are blessed to see him still eating, playing video games, computer stuff and board games with Grandma and Papa and me. He even got to be disconnected from his IV for several hours and was able to move around in the unit without a "leash". It made him feel good.

Thanks, Kathy, for doing Cam's laundry for us!!!

Today's counts WBC - 1.9 down .7
RBC - 3.83 down .01
HGB - 12.6 down .2
PLT - 64 down 21
ANC-1797 down from 2470
The downward trend is still very slow. The doctor is happy with how things are going!

"See" you tomorrow :)

Wednesday, August 10, 2005 7:41 PM CDT

Nothing really to report today. He is still feeling good. Isn't that great? I keep expecting him to start feeling yucky but so far he hasn't. He is still eating, has plenty of energy and is in very good spirits. Grandma and papa being here helps that. They keep us laughing.

His counts are continuing to descend slowly but are still pretty good.

WBC 2.6 down .3 (4 - 10.5)
RBC 3.84 down.01 (4.2 - 5.6)
HGB 12.8 down .1 (11.5 - 14.5)
PLT 85 down 31 (150 - 500)
ANC 2470

Thanks for checking in. Keep praying! Thanks!!

Tuesday, August 9, 2005 10:00 PM CDT

The stem cell transfusion went off without a hitch. Cameron slept through most of it due to the pre-medication, benadryl. The odor from the DMSO is slightly present but not nearly as bad as I thought it might be. He ate and felt good all day, again.

My Uncle Dal, Aunt Judy, their daughter, Jodi and her two children came by this morning. I hadn't seen Jodi for over 20 years. They just stayed briefly. Mom and Dad were here all day. My other cousin, Cindy, came by tonight. It is so nice to have so many family members close by. We didn't have much of that in Philly.

I would like for you prayer warriors to start to pray that Cameron won't get any infections as his blood counts drop and that there won't be any complications due to the immunosuppressed state. Also, we need to pray that the graft vs host disease that is expected will not be too severe but that it will do the job of getting rid of the leukemia that survived the chemo. These are the challenges we have ahead of us in the next few weeks.

Thanks for all your comments on the guest book and for the phone calls. We feel loved and covered in prayer.

Tuesday, August 9, 2005 10:46 AM CDT

I will write two entries today because today is the day Cam gets Chad's stem cells. Preparations are underway for that to take place at 11:00 and it takes about 1 1/2 hours. The nurse was explaining to me that the main complications they will be looking for don't come from the stem cells but from the solution the cells were frozen and preserved in. It can cause bad odors that can even affect people in the room with the toxic fumes...rare but it can happen. Cam is well equipped with hard candy to suck on to hopefully off-set the bad tastes.

His counts are headed downward as is expected from the chemo. By the way, Cam has declared to us that he has had his LAST dose of chemo he will ever need!!

I will report the counts every day in case you are interested. I wait anxiously every day for the results because I want to know everything.

His counts and the normal range

White blood cells (WBC) 2.9 --- 4.0-10.5
Red blood cells (RBC) 3.85---4.2 - 5.6
Hemoglobin (HGB) 12.9---11.5-14.5
Platelets (PLT) 116,000----150,000-500,000

I'll let y ou know how how the transplant went!

Monday, August 8, 2005 9:02 PM CDT

Cam started the day off feeling kind of bad. He couldn't eat breakfast, was tired and hardly lifted his head off the pillow until after noon. He was introduced to another new procedure he has to endure twice a day. He has to use awful nasal spray to prevent fungal infections in his sinuses. It tastes yucky, makes him gag and sputter. He hates it.

We had a lot of visitors from many of our favorite people. For those of you who know my husband, this may not surprise you. After church yesterday, he and Chad hit the road and drove 5+ hours up here, stayed for about an hour and drove the 5+ hours back to Santa Fe. Crazy huh? They just really wanted to see us. :)

This morning, Derek came up to see us for about 20 minutes before he left for home. Around 3:00, my parents came. They flew in from Springfield, MO. My dad's brother, Uncle Dal, who lives in the area, picked them up and came with them to visit. Then Larry came to join the fun. As they were leaving, Kathy came. Cameron smiled and laughed throughout all these visits. It is amazing how much the psychological boosts help boost him physically, too. He even ate supper!

In addition to all the visits, Cam and I spent a couple of hours with our computer program that teaches Spanish. We are going to try to learn a little. Cam seems to have more of a knack for it than I do which doesn't surprise me at all.

Sunday, August 7, 2005 6:46 PM CDT

The chemo effects are beginning to show up. Cam feels like eating but then when he sees food, he gets repulsed by it. The "blahs" are setting in.....just not feeling good although not really bad either.

Derek got here last night and came to the hospital for a brief visit. He came back this morning and spent a few hours with Cam while I went to Larry and Kathy's house and did laundry. Tonight Derek went to a concert and has to leave tomorrow morning. It is fun to have him here although it is a brief visit.

Before Derek got here we had our own little church service. We listened to and sang with worship music cd's and read the Bible together. It is the best we could do for a Sunday morning.

Larry and his friend, Mike, stopped here to visit on their way home from Sturgis, SD from the motorcycle rally there. They brought Cam a really cool Sturgis t-shirt.

Saturday, August 6, 2005 7:27 PM CDT

Since I last wrote, there haven't been many changes. He continues to get the two chemos. He has had a couple more breathing treatments but is sounding clear in his lungs.

The worst thing that happened is that the time came when the nurse HAD to take the tape off and clean the broviac site. It is still sensitive from surgery and it hurt pretty bad. It was not fun for him!!!

He is starting to feel a little more lethargic and doesn't have his normal appetite but he hasn't given up eating all together yet. Last night, Kathy brought some Boston Market chicken and tonight I got him a sandwich from Quiznos. That and a little cereal is all he has wanted.

He rode the exercise bike again and did another lego kit.

Derek is on his way to Denver. He will just be here tonight, tomorrow and will return to Santa Fe on Monday. It will be good for him to see where Cam is and for Cam to have him here if only for a few hours. Besides, then I can go do some laundry...fun, fun. That is one chore that has to be done no matter what is happening in one's life.

Friday, August 5, 2005 4:26 PM CDT

The good news is that Cameron is no longer in respiratory isolation. The bacterial tests on his lungs came back negative. What that means to us is that the nebulizer treatments are less frequent...none during the middle of the night...and Cameron can move around on the BMT floor. Today, he exercised on the stationary bicycle and spent some time with me in the family lounge.

He has had another day of the same two chemos. He continues to tolerate them fine. He is still eating some and is not hurting anywhere. He hasn't even put his "hospital" face on yet! That's good for me because he interacts normally with me, has a sense of humor and is interested in "stuff". Today he did a lego kit brought to him by the Child Life specialist. She brought 4 so he has enough to keep him busy through the weekend.

Last night, Kathy came to visit after her family ate out with Kenton's family. They ate at Steak and Ale. Larry works for the Steak and Ale organization throughout the country so she brought us a meal. I got a delicious steak with a baked potato and roll. Cameron got chicken with mashed potatoes and roll. What a treat.

Our scripture for today is Isaiah 41:10. So do not fear for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Thursday, August 4, 2005 7:22 PM CDT

Cameron's chemo got started today. He had high doses of Ara-C and Vp 16. He is still feeling pretty good. The side-effects haven't hit him yet. He's been keeping busy with the PS2, the computer and of course tv. His respiration seems to be getting better but he is still having nebulizer treatments and is still in "respiratory isolation".

Dr. Giller reported to us that the bone marrow aspirate and the spinal that were done when he got the broviac placed were good...no leukemia cells.

Last night, my brother Kenton, Teresa, Kyle and Ashley came by to visit for a few minutes. Today, Larry came by. It sure helps to break up the day to have some company.

I'm working on a cross stitch project. Cameron found an adorable picture of a Golden Retriever sleeping on pillows. It is a big, challenging project. Hopefully, I can make some good progress on it while I'm here. I am also reading an awesome book, Expecting Adam by Martha Beck. It is a touching and funny true story about a boy with Down's Syndrome.

I'm sleeping at the Marriot Town Place Suites which is about 2 miles from the hospital. It is a nice place and convenient but in the morning, there is no quick and easy way to get here due to traffic.

Wednesday, August 3, 2005 4:26 PM CDT

Cam got a pass from the hospital for a few hours since chemo doesn't start until tomorrow. I am able to update on Larry's computer here at his house because I haven't figured out where to get on line at the hospital yet.

We got to Denver Monday night. Tuesday morning, Larry fixed Cameron a big, great breakfast because he couldn't eat after 8:00 a.m. He was scheduled for his surgery at 4:00 to insert the brovic.

One of my younger brothers, Kenton, and his family are in town for the A/G General Council convention so we got to see them this morning.

Cam had an appointment to be checked out BY Dr. Giller at 1:00. Larry gave Cam a ride on his Harley to the hospital. Kathy and I followed in the van. Dr. Giller is still concerned about the wheezing in Cam's lungs so he had to have a nebulizer treatment....etc. He was concerned if the anesthesiologist would postpone the surgery because of it but she didn't think that was necessary.

Because of all that stuff, we were late getting down to pre-surgery so they took the next kid in front of Cam. Cam didn't get into surgery until 6:30!!! Remember we hadn't eaten since 8:00 a.m. I have to tell you, I am not getting any better at this waiting game. You would think with all the waiting we have done and continue to do, it would get easier.

Cam came out of recovery around 8:30 feeling pretty good but just a little sore. We were brought up to the BMT floor. We hadn't been there yet so I got the little tour and the run down of the rules. They are quite strict, even more so than CHOP was. I am strongly encouraged to not stay in the room overnight and I wanted to stay relatively close to the hospital, so I got a room nearby to go to for the next few nights. I got up and got to the hospital by 8:00 just as he was waking up. Worked out fine.

This morning he had to have another pulmonary stress test and chest x-ray.

We had a nice surprise. One of our doctors, Mr. Hanrahan, from Albuquerque is up here visiting the clinic. He popped his head in Cam's room and said hi.

That's it for now. I will try to figure out how to get on-line at the hospital so I can update daily.

we love you all and appreciate your prayers.

Monday, August 1, 2005 2:32 PM CDT

Well, the day has come for us to leave home for a while. We have finished up the to-do list and are doing last minute packing for our extended time away. Cam and I are both feeling kind of sad and reluctant to leave but knowing we have to set the determination in our hearts and minds and go for it.
We will surely miss Ed, Derek, Chad, Omi, Blaze and Dimitri as well as our friends around here.

We will be leaving in a few minutes and arriving in Denver at Larry's house around 8:00 or so. Pray for us to have a safe trip. God has ordered our steps so we go with the confidence that he is on control. All things, even this trial, work together for those who love him.

Thanks to all of you who have written in the guest book. We love to get your encouraging words.

Saturday, July 30, 2005 9:56 AM CDT

We got good news from the insurance company. They got all the evaluation results and gave the final approval for the transplant. They denied the use of one drug that is proposed to be used at the end of the process. I am not yet familiar with what it is or what it does but the team at Children's is appealing that decision, too.

We enjoyed our day at home. Cameron spent much of the day with his good buddy, Walker. They slept out on the trampoline last night and are, right now, eating one of Cameron's big breakfast. Cooking breakfast has become something he really enjoys... as well as eating it. :)

Cam is taking his inhaler although he really doesn't like it. It makes him kind of jumpy for a little while after he takes it but he's doing it. We'll see if it helps his cough/lung sounds.

Off to do more laundry and then to enjoy the day.

Friday, July 29, 2005 9:44 AM CDT

Hi everyone,
Cameron, Derek and I got home at around 11:45 last night. Derek drove most of the way for me. We were so happy to see Chad, Dad, Omi and of course the VERY EXCITED dogs.

Cam and I had another long, exhausting day at Children's Hospital yesterday. We started the day with Cam getting EKGs, Echos, and a cardio stress test. He did great. The test progressed until he was running at a pretty fast pace at a pretty good incline. Then we had meetings with the Child LIfe worker and the Social worker. After going out for a quick lunch, Cam spent 2 1/2 hours doing Neuropsych testing. It is basically educational, attention, memory,etc. tests. It took so long because he progressed far in all of the subtests. Let me brag a little....on the reading, spelling and math portions, he scored at the level of 9th month of the 12th grade! ...he just finished 7th grade. Pretty good, huh? We haven't gotten all of the results of that yet but the exaiminer told me those scores.

While Cam was testing, I met with other various people to sign consent forms, get more instructions about what will happen during the inpatient stay and after. Then I met with Dr. Giller to discuss any questions, and some of the test results they had gotten.

Then, Dr. Giller wanted to see him before he left town for the weekend. He heard the wheezing and rattling in his chest that has been there off and on for a couple of months. It most likely is allergies but to be extra careful and to ensure Cam will be healthy for admittance next week, he put him on an albuterol inhaler and some antibiotics for a few days.

By the time we left Denver it was nearly 7:00 so it was a long day. I was thankful Derek was there to drive especially after it got really dark. I was tired.

Ed and Chad got home Monday night (or should I say Tuesday morning) at 1:30am. Chad slept most of the way and still slept during the night. Our friend, Charles was here to watch him for the next few days until we got home. Thanks to you, CHARLES!! Chad has recovered from the cell harvest very well. Dr. Giller said they got great quality cells and more than enough for the procedure. Way to go Chad and all the people who worked so hard to make this successful.

We enjoyed the couple of days we had "off". The boys all went to the IMAX theatre and saw Charlie and the Chocolate Factory. They said it was cool and funny. We shopped at the big Park Meadow mall, ate at the Cheesecake Factory restaurant, went to the Museum of Natural Arts and Sciences and just enjoyed each other's company along with Larry, Kathy, J.B. and Pat (and of course the dogs, Vince and Sydney, the cat, Hobbs and the bird, Tipper)

Dr. Giller cautioned Cam about being very careful not to pick up any viruses or bugs while here this weekend that would delay getting started. He knows what he has to do.

Please continue to pray for us as the time draws much closer. Thanks to you all.

Monday, July 25, 2005 9:59 PM CDT

It was a long, long day but it went pretty well. Chad went into surgery to have a central line inserted on the inner upper right arm which was used to draw the blood and replace it after the stem cells were processed out of it. He was kept anesthetized, conscious sedation, with versed all day. He was sleepy and dosed off and on but was not completely out. We got to the hospital at 7:30 a.m. The collection started at 12:00 and ended at 6:00. Chad's arms had to be restrained all day so he wouldn't pull out the line, the IV, and the other stuff used to check his vital signs. Ed or I had to be beside him, holding his hand ALL day.....standing cuz there wasn't room for a chair in the small room. I'm rambling but wanted you all to know he did fine and they got a good harvest of stem cells....more than they needed "just in case".

We had a scare!! While Chad was in the O.R. getting the line put in, we got a call from the insurance company. They said the transplant was not approved, just the evaluation was approved. Also, Chad's evaluation to see if he is a suitable donor was approved but not his cell harvest!! We were so upset and confused. We were told by the previous transplant coordinator that everything was approved and was rejoicing with us! As it turns out, that the evaluation is to determine if Cam's body is strong enough to withstand the transplant and if the tests show he is, the transplant will be approved along with all the donor procedures. The doctor was not alarmed but just said all the test results will be faxed to them ASAP and the approval will follow. Isn't the power of an insurance company over ours or our children's lives scarey?

Ed was wide awake and Chad was still groggy when we got back to Larry and Kathy's house. They had a quick bite to eat and decided to drive back to Santa Fe tonight. They are on the road as I am writing. Cam, Derek and I had to stay because Cam has more test on Thursday.

Cam and Derek had a good day together. They found a big Guitar Center and spent some time in a huge mall located near here. They have so much fun together. They have a similar sense of humor and laugh a lot. It is so good for Cam to have this time with Derek before he has to return to college in a few weeks.

Saturday, July 23, 2005 10:07 PM CDT

Cameron and the rest of the family had a fun day when we didn't have to think about tests, meetings and hospitals. My brother, Larry is a Harley rider. He took Cameron up to the Rocky Mountain National Park on the back of his bike. Chad and I followed with Aunt Kathy driving her Explorer and Ed and Derek followed in Ed's jeep. We all had great views of the majestic mountains. Cameron got to experience many aspects of motorcycle riding on the 9 hour ride. They went from 90+ degrees here in Denver to 54 degrees at the top of the summit, rain and even sleet on the way down. He had the option of jumping into one of the vehicles many times but he wanted to stick it out on the bike with Uncle Larry. He is a little tired tonight but feeling great about the day. I love it when that happens!

Tomorrow is another day to try to forget why we are here in Denver before we have to face the realities of life on Monday.

We are so thankful for supportive friends and family. In case I haven't thanked you lately, THANKS for your support of all kinds.

Friday, July 22, 2005 4:43 PM CDT

We have had two very busy days of meetings, consultations, tests, meeting new people, finding our way around a new, unfamiliar hospital, not to mention finding our way around a new unfamiliar city.

Cameron has handled things well He had ct scans, x-rays, pulmonary tests, a virus test, blood work and an exam by Dr. Giller. The consultations were about diet restrictions during and after the transplant and how to prepare the home for returning after the transplant. We know these things from the last go-round but it never hurts to have reminders.

Chad had more blood tests, an exam and started his GCSF shots to build up his stem cells. We had a trial run of how he would react to versed, a sedative, to see if it will be a good option for Monday during the cell collection. He did well, it made him relaxed and a little more put him into a restful sleep. I would love to have some of that at home for those times when he gets very agitated! We had a consultation with the anesthesiologist etc, etc. Everyone is nice and helpful.

We have enjoyed spending time with Larry, Kathy, J.B. and Pat. It is nice to have a home to come to rather than a hotel room. Besides, we can enjoy Vince and Sydney, their golden retriever and golden/newfoundland mix. They are wonderful dogs. We still miss Blaze and Dimitri

Tuesday, July 19, 2005 8:11 PM CDT

We are busy packing to leave for Denver tomorrow. Cam and Chad have appointments on Thursday. We are so thankful that we can stay at my brother, Larry and Kathleen's house. Their son, Pat, was just released from the Army. He spent around 16 months over in Baghdad and then spent several weeks in Texas and will be coming home tomorrow night. We are looking forward to seeing him!

I have to take care of one important thing before we can leave town. I have a bad tooth that is hurting a lot. I went to the dentist today and it has to be extracted by an oral surgeon tomorrow morning. Doesn't that sound like fun!? I'm glad I will have Derek to do most if not all of the driving to Denver.

Omi came home late last night from a trip to Connecticut. He visited with some of his family out there for a week. Unfortunately, when he was there, one of his uncles got killed so he, at least, was able to attend the funeral.

I put a new picture in the photo album of our day with the horses. Check it out if you want to.

I'll try to get on a computer and update from Denver. Thanks for checking in.

Sunday, July 17, 2005 8:47 PM CDT

We had a wonderful family day today. We went to church together. Pastor Mike asked our whole family to come forward so the congregation could pray for us as we face this week of testing and beginning the next phase of treatment. Chad even cooperated with that...surprisingly.

After church, we went out to eat at Angelina's...an authentic New Mexican restaurant and from there went to Truchas, NM about a half hour north of Espanola. A friend of Ed's from work, Perry Trujillo, has eight horses up there roaming freely on 90 acres in the beautiful Northern New Mexico mountains. They saddled up 3 of the horses and Derek, Cameron, Ed and Perry all took turns riding. Ercilia, Chad and I watched, petted and fed grain to the other horses with another of Ed's work friends, Gilbert. It was fun to spend the day outdoors and breath in the fresh, albeit, thin, high altitude air. It was hot down here in Santa Fe but up there is was very nice.

Saturday, July 16, 2005 9:11 AM CDT

Still nothing to report. I heard from the transplant coordinator yesterday. The numerous pre-transplant appointments have been made so we now have a schedule of what will be happening next week. The first ones are on Thursday so we will drive up there on Wednesday evening. Thursday is a very full day. Friday is a half day. Chad's cells will be harvested on Monday. Then Cameron has another full day of tests on Thursday, July 28. We will have a few days to come home and then we have to be back for the duration on August 2nd.

We, especially Cameron, continues to make the best of his time here. He had a friend over yesterday. They played games, rode bikes, etc. He is trying to see all the new movies that are coming out because he knows it will likely be a while until he can go into a theater during and after the transplant. He saw the Fantastic Four this week.

Cameron taught Blaze, our 1 year old Golden Retriever, to catch and retrieve a frisbee. They are both so proud of their new trick.

Derek is a little bored around here because he doesn't know many people and there is not a lot to do. He has been hanging out with one friend, Daniel, who used to be Chad's one-on-one aide at school. He's a really nice young man.

Chad doesn't have summer school on Fridays so yesterday, he slept in in true teenage fashion. He didn't get up till after noon! He watches a lot of movies when he is home but would rather go....anywhere. If we say the word "go", he is out the door, sitting in the van and ready to go.

So, that's it for now. We have another weekend to enjoy before having to face the reality of what's ahead.

Thanks for checking in.

Wednesday, July 13, 2005 9:15 AM CDT

Nothing new to report. We had a routine day yesterday with nothing remarkable and no updates on our upcoming plans. We are enjoying each day here at home since we know it will be a pretty long stretch away from home soon enough. I am truly a homebody.

A beautiful poem was posted recently on the ALL-List that I am a part of. The ALL-List is a listserver for parents of children with Acute Lymphocytic Leukemia. We get and give support to/from hundreds of families fighting the same battle as we are. This poem is so appropriate and expresses how I feel about Cameron.

Late last night I found myself beside my child's bed;
He was sleeping peacefully as I felt his fevered head.
In my mind debate began as I wondered what was best;
Should I wake him up for medicine or leave him there to rest
To wait would mean three hours to let the fever rise;
But waking him from peaceful sleep to me seemed less wise

So I sat there in the darkness and asked a question silently,
"What do I do?" I asked myself, thinking no one else could see
And as I asked the question, my Father must have heard;
In a still small voice he answered my silent spoken word.
He said, "just let me do it, I'll take care of him for you;
You know that I am capable and you know I love him, too."

So I left the two together and when I got back to my bed;
My mind wandered as I prayed and in my prayer I said,
"Dear Lord, if I've done something, spare him pain and let me see;
And my Father gently told me, "this sickness is not from me."
My mind was still not focused and my prayer kept rambling on;
Until I said again, "Dear Lord, have I done something wrong?
Do I not appreciate this son you have blessed me with;
Have I not cared well enough for this most precious gift?"

Again, my Father answered with much patience and great love.
"I told you the child's sickness is not from above.
This isn't me I told you, but if you'll just leave it in my hands;
I'll work it for good like always and fit it into my great plan."
And as my Father promised, He took care of my son;
The healing wasn't overnight but I know the battle's won.
When my Father comes and asks you to leave someone in his care;
The best thing you could ever do is just to leave them there.
You may not understand it or know exactly what's in store;
But no matter how much you love them, My Father loves them more.

Monday, July 11, 2005 5:24 PM CDT

Things are starting to take shape as far as a timeline for Cameron's next treatment. The Denver transplant coordinator called today. They want to see Cam on July 20, Chad on the 21st, Chad's cells will be harvested on July 26. We will come home for a few days before going back on August 2nd for the broviac placement and Cameron will go inpatient on August 3. This is the tentative plan. Things could change but it is pretty close.

I have to give some BIG THANK YOUs to a couple of groups. The people at Cameron's school, the charter school The Academy for Technology and the Classics, held a fundraiser for Cam during their family fun night. They raised over $600.00! They gave it to us today. Also, the Eldorado Community Church did a community outreach fundraiser and decided they wanted to donate that money to Cameron's medical fund, too! They raised $400.00. Both are being deposited in the account set up for that purpose at the First National Bank here in Santa Fe. THANK YOU to both groups.

Thank you to the Vaughns for stopping by with a souvenir t-shirt for Cameron from Alaska. You are so thoughtful!

Thanks to Dottie, Elinor's friend from New Jersey, for sending the package from Boston. Cameron had a lot of fun looking through the pictures, books and reading the joke book. THANKS!

We are grateful that Cameron has had another good day, playing with the neighbor kid, etc.

We appreciate you stopping by to check on us. The number of times the page is accessed continues to amaze and encourage us.

Saturday, July 9, 2005 4:42 PM CDT

I guess the clinic called Ed with the blood test results yesterday. I didn't know about it till last night and as we thought, the counts were good. In fact, because he was on prednisone, the counts are inflated very high.

I got a call from Dr. Giller in Denver today. He said we will likely come up there the week of the 18th to do the pre-testing for Chad and Cam. He'll call me more next week to nail down dates and appointment times. It will be a month delay due to the insurance issue.

Cameron is, once again, enjoying some normal time. He is hanging out at the mall with some school friends. I indulged a little and got a body perm. I hadn't even had a hair cut for months. Thanks to Derek for watching Chad for me to be able to take the time to do that.

Friday, July 8, 2005 8:19 PM CDT

Another day of waiting with no results. We didn't hear from anyone in Denver and didn't get the blood test results.
I guess I have to make the calls on Monday. I know the UNM clinic would have called with the blood test results if there had been any concerns. I don't know why I didn't hear from Denver....frustrating to say the least.

Yesterday, Cameron finished the latest 7 day pulse of prednisone so the going off withdrawl is starting to kick in with the muscle and skin sensitivity to touch. Last time, it was the 2nd and 3rd days that were the roughest. Hope it won't be this time but we'll see.

Anyway, we went out to eat as a family tonight to Appleby's. Not much else to say about this uneventful day.

Love to you all and keep praying and sending us your words of encouragement.

Thursday, July 7, 2005 5:15 PM CDT

I heard from Dr. Giller in Denver. He is going to call tomorrow to make plans for Cameron to come soon. I am getting anxious for the next step to get started and dreading it at the same time.

He had his blood drawn today....I just know his counts will be good. We'll hear tomorrow.

Derek and Cam went to see Star Wars, Episode 3 this afternoon. Of course you all know Cameron and I saw it courtesy of the Children's Cancer Fund of NM but Derek had not seen it yet.

That's about it for today...a slow, hot summer day here in the desert.

Wednesday, July 6, 2005 9:33 PM CDT

It was another difficult day of waiting. We didn't hear from either St. Judes or Denver Children's today. Ed and I are leaning toward the Denver treatment. We feel it is a little less risky and it will be an effective treatment. Our doctors in Albuquerque agree with that. Now, we have to wait to hear from Dr. Giller about the time table. I hope we can begin soon for many reasons.

We love you all and thank you for your support. There are times I know I would fall apart with the weight of waiting, decisions, wondering, waiting some more and knowing the challenge that is ahead of us if it wasn't for your prayers. Please continue to write notes in the guest book. We love to hear from you.

Tuesday, July 5, 2005 7:33 PM CDT

Good news!!! The appeal with the insurance company was successful. Ed got a call today that they have agreed to pay for the treatment Denver Children's Hospital is proposing! I expected to hear from St. Jude's today about the meeting they had regarding new patients last week. I didn't hear from them.

We will wait to see what St. Jude's has to say and then have to weigh the pros and cons about the two proposed treatment plans.

Cam's bone marrow results from Thursday's biopsy were good. Remission continues! Yeah! His blood counts were good, too. He's feeling great and only has two more days of prednisone for this round.

I hope everyone had a good 4th of Judy. It's nice when the holiday gives a long weekend. We went to some fireworks here in Santa Fe last night and had a the weekend together as a family.

Sunday, July 3, 2005 4:17 PM CDT

Signing in to say Cam and the rest of us are all enjoying this holiday weekend. We know nothing will happen, no decisions will be made until Tuesday so we are just trying to put things out of our minds and enjoy. We will look for a local fireworks display tonight or tomorrow night.

Cameron is taking prednisone but the side effects have not kicked in yet. He looks and feels great.

Cam, Derek, Omi and I went to a camp meeting service in Chama, NM last night. It was a great service and God's presence was there. It was refreshing. Because we got home very late, we slept in this morning and did not go to church.

That's about it. Keep praying for the right doors to open and the wrong ones to close. Ed and I do not want to have to make a decision about Cameron's treatment. We desire only what God knows is best and want that to be obvious.

Friday, July 1, 2005 6:35 PM CDT

For those of you who check in every day to see what's happening, today, I don't have much to report. We haven't gotten any results from the bone marrow done yesterday. St. Jude's called and said they are in the process of reviewing the records and will give us feedback by Tuesday regarding if Cam is a candidate for their studies.

At clinic yesterday, he had to get vincristine, a chemo,and intrathecal Ara-C (chemo injected into the spinal fluid). He had to start another 7 days of prednisone today, YUUKK!!

We are happy that Derek is on his way home. He is driving from Springfield, MO so he will arrive here around 7:30-8:30. Cameron is busy cooking bbq ribs for us to have when he gets here. Cam has become a good cook, experimenting with lots of different things since he is not able to do a some of the other things he used to be interested in.

It is hot here, in the 90's, so we don't get out much during the day. It gets nice and cool after the sun goes down and is beautiful for sleeping....in the 50's and 60's.

Thursday, June 30, 2005 9:12 AM CDT

We are off to clinic this morning. Cameron has to have a bone marrow aspiration. The docs want to be sure he is maintaining remission. That's the only way to be sure.

We didn't hear anything from St. Judes's yet. The docs there met yesterday to review new patients. We hope to hear what their impressions are today, or at least very soon.

Cameron has been enjoying some summer fun. Tuesday night, he pitched our tent on the trampoline and slept out there with a friend. We used to have beautiful, lush grass in Connecticut. Now, our back yard consists of only rocks. Last summer, Cameron came up with the idea of the tent on the trampoline as an alternative to sleeping on hard rocks. It worked great!

Once again, last night the activity caught up to him. He was over tired and was reminded he can't quite to everything he wants to do.

We are off to Albuquerque. I'll try to report later if we know anything about St. Judes or if there is anything remarkable, good or bad, about today's visit.

Monday, June 27, 2005 8:17 PM CDT

We had a good day yesterday. We all went to church together as a family and ate out at one of our favorite restaurants, Gabriels. It is an authentic New Mexican restaurant. Otherwise, we had a quiet day. We took another bike ride....Cam is obviously gaining strength. I don't know about me, though :(

Today, our oncologist from Albuquerque called St. Jude's to speak to the oncologist there. They were communicating about what medical records they want to review to see if Cameron is a good candidate for their study.

The insurance company called Ed. They got the appeal but said they would not have a response for at least 2 weeks. It will be hard to wait for that not knowing if the appeal will even be successful. I'm glad we have another option as a possibility.

Cam had a "normal teenager" day. He hung out with some neighbor kids, rode bikes, played video games, etc. I like to see that.

Saturday, June 25, 2005 9:55 AM CDT

We got Cam's blood counts yesterday. They look great. ANC is 3600, platelets are 240, red cells are 10.2. They are all good, solid counts. YEAH!!! He is looking and feeling very good. He continues to take the maintenance chemo, Mercaptapurine or 6-MP at nighttime. He takes vitamin D, calcium and Bactrim. That's all he is taking right now.

We have still not heard from the insurance company. The doctor in Denver was submitting the appeal yesterday.

I also talked to a doctor at St. Jude's Children's Research Hospital yesterday. He sounded like Cameron might fit into one of their studies. He wants to review some of Cam's records and then they will see if that will take us any further in that direction. It sounded hopeful. We are praying for God to open the right doors. He knows exactly where we should be and when.

The family went to another Isotopes Game last night. It was LOTS of fun. Mark Little provided complimentary tickets for us and we had great seats. They came from behind 1-5 in the 8th inning to win 9-5. Mark started off the inning with a hit and came around to score. The team tied it up with a couple more hits and that brought Mark up to the plate again. He thrilled us with hitting a 3 run homer, too! Way to go Mark!!!

Thursday, June 23, 2005 8:50 PM CDT

No news yet. Today was just a waiting and praying day.
I requested for the home health nurse to come and get blood for a CBC. I really am not concerned about his counts but it has been 2 weeks since he had one so I wanted to know what they are. We'll get the results tomorrow.

Cam, Chad and I went to see the new Herbie, the Love Bug, movie. It was fun and Chad really laughed at a lot of the silly things the car did.

Cam and I went on a pretty long bike ride this morning. Cam is in better shape than I am in spite of all the intense chemo he has had! It was fun to get out and do that with him, though.

I hope we get some feedback from the doctors or the insurance company tomorrow! This waiting is difficult!

Wednesday, June 22, 2005 4:34 PM CDT

There is not much happening today. I called St. Jude's to see if I could talk to someone there about Cameron. I am waiting for a call back from one of their doctors. I just want to keep all of our options open.

Cameron is feeling really good and is enjoying this break from intense chemo.

THANKS to so many of you who have written in the guest book!

Ed found this poem. I modified it slightly but think it fits our situation so well.

My Lighthouse...My Son

I sit here in this silence.
Uncertainty has it's clutch.
Fear tries to over take me
For the one I love so much.

He is my lighthouse to you, Lord
that always guides my way.
Whenever I get lost in life
I must take time to pray.

This path of life that he must walk
We do not understand.
I ask you Lord to handle this.
His life is in your hands.

The awesome power that you hold
Almighty in your hands
Is something that so many folks
Will never understand.

I know your powers of healing.
I've seen them many times.
I ask in Jesus name, dear Lord
To touch him one more time.

I know that you can heal him.
You've done it once before.
I give him back to you Lord.
A miracle we need once more.

Strengthen every ounce of faith
I have within my soul.
So you can do your work Lord,
Teach me to just let go.

I give you all the glory
For all that you have done.
Thank you for your miracle.
My lighthouse is my son.

Eileen Breedlove
from http://lonestar.50megs.com/poetgold/lighthouse.html

Tuesday, June 21, 2005 8:30 PM CDT

This has been an awful day of stress and frustration. Early this morning, I got a call from our contact person at our insurance company. She said the planned procedure in Denver has been denied. It was devastating to hear that news. I guess they say a second transplant or this type of transplant are considered to be experimental and therefore, not covered. We were packing to go this afternoon and were psyched to move ahead. Now we come to a screeching halt while Dr. Giller in Denver works the appeal process to see if he can get it approved.

We will possibly look into St. Judes if the appeal is not successful. Dr. Giller explained to me that they only accept patients that fit into one of their ongoing, existing studies. He wasn't sure if they have any that Cameron would fit into at this time. We'll see.

The good news is that Dr. Giller feels that Cameron's leukemia is pretty responsive to chemo since he went into remission fairly quickly. He feels a couple of weeks of delay, with Cameron continuing the maintenance chemo at home should not be harmful to him and feels that he will not likely go out of remission in that period of time. One never knows that for sure, though.

The bottom line is that we have to continue to put our trust in God to order our steps according to His plan for us. There must be some reason for this delay. Now, please join with us in praying that it is just a delay and not another denial to pay.

We could use some encouraging words from you all. Please sign our guest book so we know you are out there pulling for us. THANKS!!!!

Tuesday, June 21, 2005 4:13 PM CDT

This has been an awful day of stress and frustration. Early this morning, I got a call from our contact person at our insurance company. She said the planned procedure in Denver has been denied! It was devastating to hear that news. I guess they say a second transplant or this type of transplant are considered to be experimental,and therefore, not covered. We were packing to go this afternoon and were psyched to move ahead. Now we come to a screeching halt while Dr. Giller in Denver, works the appeal process to see if he can get it approved. We also told Denver about recently learning that we have a secondary insurance with United Healthcare so they will be looking into the possibility of that company paying for the transplant.

We will also look into St. Judes. Dr. Giller explained to me that they only accept patients that fit into one of their ongoing, existing studies. He wasn't sure if they have any that Cameron would fit into at this time. We'll see.

The good news is that Dr. Giller feels that Cameron's leukemia is pretty responsive to chemo since he went into remission fairly quickly. He feels a couple of weeks of delay, with Cameron continuing the maintance chemo at home, should not be harmful to him and feels that he will not likely go out of remission in that period of time. One never knows that for sure, though.

The bottom line is that we have to continue to put our trust in God to order our steps according to His plan for us. There must be some reason for this delay. Now, please join with us in praying that it is just a delay and not another denial to pay.

We could use some encouraging words from you all. Please sign our guest book so we know you are out there pulling for us. THANKS!!

Sunday, June 19, 2005 6:02 PM CDT

The withdrawl from being on prednisone for 7 days hit Cameron yesterday. It makes him very sensitive to touch and makes him feel like one big bruise. It was so bad when he went to bed last night that he couldn't lay down
comfortably. This morning it was worse so he didn't feel he could go to church so I stayed home with him. Chad and Omi went to church with dad for Father's Day. They brought our friends Charles, Ercilia and Omi's friend, Kayla for dinner. It was a good afternoon.

Omi and Cameron made breakfast in bed for Ed. They did a great job and gave him thoughtful gifts, too.

I hope all of you fathers had a good day and were treated well by your families.

Thanks for stopping by and checking on us.

Saturday, June 18, 2005 9:29 AM CDT

Yesterday, Chad has to have his blood drawn in Albuquerque for some lab tests. I was nervous about how he would handle it, of course. We had to wait in the room for an hour so by the time they came to take the blood, he was sort of restless. Because he is a big guy and has some extra "padding", the nurses had a hard time finding a good vein. They felt they found one and he sat real still but when needle was inserted, he jerked a little so the needle came out of the vein so they had to do it again. This time, the nurse couldn't even find the vein. She "dug" around in there until Chad, who never cries, started to cry softly so she stopped. A third nurse came and was successful. He was SOOOOOOOO good. We had to hold him still but he did not put up any fight. Cameron stood holding his head and talking soothingly and calmly to him the whole time.

Every little situation becomes a big one when Chad is involved so I am thankful to have that one behind us. I took the boys to Mimi's Cafe for a nice lunch.

Last night, Cameron, Omi, Kayla and I went to a wedding at our church. Cam had good energy all day and did not even seem too tired at 10:45 when we got home. Last night was his last dose of prednisone....yeah!

Still no word from the insurance company. Please keep praying that we will hear soon because we are leaving for Denver on Tuesday afternoon for the tests.

Thanks, again, for stopping by Cameron's web page and for your interest, support and prayers.

Wednesday, June 15, 2005 8:52 AM CDT

Cameron had a pretty good day yesterday. He didn't over do it so he didn't reach that point of exhaustion. He is taking some oral chemo daily to hold the leukemia in check until the transplant. He is taking 6 MP and prednisone. The prednisone is making his stomach upset and he feels hungry all the time. It is also making him sort of moody and bloated. Thankfully, it is only for 7 days this time not 28 like it was in April after relapse.

We took Omi's little poodle for his first haircut yesterday. He looks like an entirely different dog but he is a cutie either way. Blaze, our big Golden, didn't know what to think of his buddy looking so different when he came home than when he left!

I got a call from Chad's school that he was sick. I went to get him and he whined a little, then was fine the rest of the day. I don't know what that was all about! I sure wish he could tell me how he's feeling and what's going on. He went to school this morning....hope he does ok today.

No news on the approval from the insurance company yet on this planned mini-transplant. That's why our plans were delayed a week. One more thing to pray about.

Monday, June 13, 2005 10:33 AM CDT

Yesterday, Sunday, started off to be a good day. We all went to church as a family. It was the first time since relapse. We had a nice dinner and played a board game in the afternoon. Cameron and I went to a flea market just outside of town but got there late and everything was shutting down so we didn't stay long.

In the early evening, Cameron nearly fell apart with exhaustion and frustration. Even he did not realize he had over extended himself until it was too late. After cuddling and some quiet time, he was able to relax and went to bed early.

It was a reminder to us that the mind wants to do more than the body is able at this time so he has to sloooooow down on the activity and get plenty of rest between activities.

Chad started summer school today from 8:30 - 11:30 so we have a little time to get things done without having to keep tabs on him.

I praise God for a new day to serve Him and to enjoy spending time with my boys.

Saturday, June 11, 2005 9:35 AM CDT

Cameron had a clinic appointment yesterday. He got a dose of vincristine. That's the one we think caused the leg pain a few weeks ago. HOpe that doesn't happen again!! Now he will be taking some 6-MP, a maintenance chemo and prednisone until the transplant. These are to keep the leukemia from coming back.

His counts are good, hemoglobin and platelets have gone up so I'm sure that is why he is feeling good and has more energy. White cells were down some but the ANC was still 900.

The doctor said his lungs are clear, thank God!

I was tired after the 2+ hours there because I had Chad with us. He was good but is always moving and has to be watched constantly so he doesn't touch anything or anyone.

I heard from the Transplant Coordinator in Denver yesterday. The insurance has not given final approval yet so Denver wants to postpone beginning the pre-transplant testing for a week. Cam and Chad will be having tests done on June 22-24, the cells will be harvested from Chad on June 28 and Cameron will be admitted on July 5. That's the plan for now. It gives us another week here to get organized and allows Cam to gain some more strength before getting blasted again.

Friday, June 10, 2005 8:03 AM CDT

Yesterday was a very good day. Cameron felt good all day and then we went to the Isotopes game. It was so great to see Cameron enjoying himself just like before relapse, laughing and joking and seemingly, for a brief time forgetting about the disease.

When we got to the beautiful new stadium, we were met by the Executive Directors or the Children's Cancer Fund of NM and the General Manager of the Isotopes. The Isotopes are the triple A minor league team for the Florida Marlins. They walked us down onto the field. We were able to talk briefly with one of the players, Mark Little. We had the oopportunity to meet him earlier at the hospital. It was so nice of him to come talk to us. Chad was quite anxious and confused. He was not too out of control but I didn't want to push our luck, so when the time came to go out to the pitcher's mound, Ed and Cam went. Chad and I stayed on the side and took the video.

The announcer gave a brief history of Cam's illness as he introduced him. Then, standing just a few feet in front of the pitching mound, Cameron threw a perfect throw to the catcher! Yeah! I was nervous but he wasn't at all.
Everyone there treated us so well. They are a classy group of people.

Then we were escorted to our seats by the GM by way of the elevator. That helped so we didn't have to make our way up the stairs and back through the crowd with Chad.

The Weems family and our friend, Ercilia, watched the game with us. It was fun. It was also "Whoopie cushion night". We were all given a small whoopie cushion when we entered the stadium. After the 4th inning, everyone sat on the cushion at the same time in an attempt to break the Guinness Book of World Records! It was funny and Chad laughed SOOOOO hard. Unfortunately, the Isotopes lost the game 4-5 but our new friend, Mark Little, got a 2 run homer!

Well, we are off to Albuquerque soon for a clinic visit. I'll write more later.

Wednesday, June 8, 2005 9:47 PM CDT

It was a pretty uneventful day. Cameron was feeling good, more upbeat and a little more energy.

The only bad thing happened this evening. I had taken the vancomycin out of the refrigerator 2 hours before infusing as instructed to do. At 7:00 when I was going to get it started, it wasn't there! I couldn't imagine what happened to it. Then I found it on the floor and it had been chewed up by our dog, 1 year old, big, playful Golden Retriever, Blaze. The bag was about half empty. I wasn't happy to say the least but what can you do? I got another bag out and we warmed it up and got it going about 8:00.

We are looking forward to the Isotopes game tomorrow night. I'll try to post some pictures when we get them.

Tuesday, June 7, 2005 8:55 PM CDT

Last night was a little scary. When the home health nurse came to draw Cameron's blood for a CBC, she noticed he had a slight fever again. When she heard him cough, she took a listen to his lungs with the stethoscope. She could hear some congestion in his left lung. While Cameron was in the hospital, the doctors were always happy when they listened to the lungs and they were clear. Since he is on the vancomycin and the Bactrim, I decided to wait until today and see how he was rather than call the doctors right away.

Today, he has been coughing less and no more fevers have come up. He has gained some strength as well.

His counts from yesterday were pretty good. The ANC was over 2000, hemoglobin was 8.8, a little low and the platelets were 38,000, also a little low.

Cameron and Chad went with the Weems to see a movie this afternoon. It was good for Cam, once again, to get out and do something "normal". Then he practiced throwing the baseball to get ready for Thursday night. He has been asked to throw out the first pitch for the Albuquerque Isotopes AAA baseball game!!! The game is sponsored by the Children's Cancer Fund of NM and they asked him to do the honors. We are excited for him to have this opportunity. He met several of the Isotopes players when they visited the hospital. The picture of him with some of the team is in the photo album.

My verse to hold onto for today is Proverbs 18:10 The name of the Lord is a strong tower; the righteous run to it and are safe.

Monday, June 6, 2005 8:52 AM CDT

Cameron had planned on going to church yesterday but when he got up, he didn't feel strong enough to go. Ed stayed home with the boys and I went to the service.

Cameron didn't have any fevers today. YEAH! He felt pretty good and seemed to gain strength as the day went on. He and Ed went and visited with our Pastor Mike and his family for a little bit.

It is certainly understandable, but I don't like how "down" he has been. He is not his usual self. It is more like his hospital face is still on even though we are home. I am praying for him to find some encouragement this week and to find something to make him happy, again.
Maybe some of you can help with that....send jokes or silly web pages you know of .....or something, anything.

This is my first day home after school let out for the summer. I had planned on having last week to get caught up around here but we ended up in the hospital all week.

Saturday, June 4, 2005 7:19 PM CDT

There really isn't much to report today. We all slept good in our own beds. Cameron continues to have an irritating cough that seems to be only from post-nasal drip, nothing involving the lungs. Thank Goodness for that!

Cam went with me to Wal-mart. It is so good for him to be able to get out and to feel sort of normal. A few weeks ago, it sure didn't seem like a special outing to go to Wal-mart! How things change in such a short time!

Thanks for checking on us.

Friday, June 3, 2005 4:40 PM CDT

Sorry I didn't update yesterday. They day got away from me and before I knew it the library at the hospital was closed.

We are HOME! We got home about 1:00 this afternoon. Cam is still running a fever at times but it responds to Tylenol and it is not as high as it was. His ANC was up to 500 yesterday and is a little over 900 today! That's good news that his marrow is recovering from the intense chemo and he's producing new cells. He had another platelet transfusion before coming home to give him a boost. We have to do the vancomyacin IV antibiotics again and resume the GCSF shots. But as least we are home and can relax here.

Thank you, Stephanie, for coming by with the kite. Cameron and his friend, Walker, flew it this afternoon already. It worked great.

A HUGE Thank you to Sharon, Chad's school teacher, for watching Chad yesterday and this morning. Thanks, again to Kimberly for being available for this afternoon. What would we do without friends like you to help out?!

Cameron would love to get some e-mails from his friends and family. His e-mail address is:
chemokid91@juno.com

I talked to the transplant team doctor from Denver and got an idea of the time table we are looking at for the summer.
We will be in Denver on June 15-17 for pre-testing and Chad will have his stem cells harvested on the 20th or the 21st. Then we can come home for a week or two before Cam will be admitted for the mini-transplant around the end of the month.

Wednesday, June 1, 2005 5:05 PM CDT

The roller coast continues. Today hasn't been such a good day. Cameron's fever went up again around noon and he wasn't feeling good at all. As soon as we think we might be going home soon, the fever returns. There still haven't been any positive cultures so it must be a viral thing he is dealing with. His white count was up slightly but at least it is moving up. The ANC was 100, yesterday it was 6. He is still neutropenic until the ANC reaches 500.

His mouth sore is getting a little better so he is trying to eat.

Chad and Dad came down for a visit last night. Chad gets so restless after just a few minutes, I can't imagine having him hang around for very long. It makes Cameron nervous, too.

Chad spent the day at the Weems' house. Tomorrow, his teacher, Sharon, is going to hang out with him at our house. Hopefully, we will be home by Friday. That's what I'm praying for.

Gotta get back to that terrific son of ours. He doesn't like to be left alone in that room for too long.

Tuesday, May 31, 2005 3:31 PM CDT

Today is a better day. First, I want to say thanks to Stephanie Dzur for bringing us some "home" food. She has a daughter who is undergoing chemo for ALL, too. Their family moved to Albuquerque during treatment so they come to UNM. She brought Cameron a really good milkshake, some StarWars poptarts and me a delicious, fresh fruit salad. It was very much appreciated and a nice change from hospital food.

Cameron's white cell counts are still near 0 but the hemoglobin is up after the transfusions and the platelets are holding their own around 38. His mouth is not as sore so he has been able to eat a little more today. He has had some slight nausea.

He has been more himself today, sitting up, laughing, joking, playing video games. These make my day go much better! Yeah!!

The only bad thing to report is that he still had a fever this morning. He can't be released until he has gone 24 hours without a fever and no positive blood cultures. So far, there are no positive blood cultures.

A HUGE THANKS to Kimberly Weems and her two boys for coming to our house to care for Chad this afternoon. Kimberly just got out of school last Friday (she's a 5th grade teacher) and then went camping with her boys for the long weekend. She has a lot she needs to do at home but she willingly came to watch Chad. That's a real friend! Thanks, to her husband, too for putting up with unloaded boxes and camping supplies in the living room for a few more hours.

Monday, May 30, 2005 2:22 PM CDT

Well, yesterday was not one of our best days! Cameron continued to feel lousy in the morning. Ed went to church and I stayed home with Chad and Cam. Around 11:30, Cam was crying because he just felt SO bad so I took him temperature. It was 102.1. That is bad news because it means an immediate trip to the hospital for IV antibiotics. We called the dr. She suggested that we go to St. Vincent's hospital in Santa Fe, get blood work and the antibiotic. If the blood work showed his counts were ok, we could just go home. If the counts were low, he would have to be admitted in UNM in Albuquerque.

I had to get a hold of Ed. He had left his cell phone at home. I tried several people I know at church but they, too, didn't have their cell phones on. Finally, I couldn't wait any longer so I took Chad with Cam and me to the ER at St. Vincent's. Chad gets very uncomfortable in those types of situations because he doesn't understand what's happening. It took everything I could to keep him calm while Cameron was checked out by the ER nurse. ABout this time, Ed got home and found our note and headed over the the hospital. A nice police officer that was hanging around in the ER noticed I had my hands full and found an open conference room where we could hang out until Ed got there. It was better for us, too, because we were worried that Cam's counts might be low and he didn't need to be sitting in the waiting room with a bunch of sick people.

Ed got there and took Chad with him. Cam was finally brought into a "room" in the ER. This room had a flimsy curtain and was surrounded by other rooms with filmsy curtains and sick people. When I said something about it to the nurse, she got snotty with me but did talk to someone who got us a better "isolation" room. Thank God I have learned to speak up. Who knows what germs were lingering around there.

After about 3 hours, we got the blood test results which showed that his counts had pretty much bottomed out. His ANC was less than 300, his red cells were at 8.7 (normal is at 13-15), platelets were at 24 (normal range is 150+) but they usually transfuse for Cam at about 20-25. He got his IV antibiotic and we headed down to Albuquerque. We arrived here at 6:30 and were welcomed "home" by the familiar nursing staff.

He has received 2 packed red cell transfusions and a platelet transfusion. He has gotten some pretty painful mouth sores which is typical when the white cells get so low. The only thing that really helps those is when the white cell increases. He continues to get the GCSF so hope that helps stimulate the cell growth and SOON. The mouth sores make it difficult for him to talk and swallow, so that takes care of drinking and eating. He is back to his sullen "hospital" face.

We are fortunate that today was Memorial Day. Ed had the day off. Tomorrow starts the challenge of finding people who can watch Chad since he is out of school now. I sure wish Derek was here but he won't be home for another month.
Pray with us that something works out. Hopefully, it will only be for a couple of days until Cam gets released to go home.

Gotta get back to Cam. I have to come way down the hall to the "school room" to use the internet.

I'll try to keep you all posted.

Saturday, May 28, 2005 6:33 PM CDT

We all slept in and had a slow, quiet morning. It was nice.
Last night, Cameron got very nauseated and threw up. The chemo finally caught up to him. He took zofran, an anti-nausea drug that helped him. Today, he has been just generally been feeling yucky. He's tired, chilly, emotionally down, bored, getting a big mouth sore, sort of constipated. See what I mean....just yucky! He is getting tired of feeling bad. Who could blame him?

The shots I have to give him every night are pretty painful. The needle doesn't hurt but the medicine going in does have a real sting. He dreads the shots and I dread giving them to him. I just keep thinking in my mind, "We should not have to be doing this!!! My son should not have to endure all of this pain and illness!!!!"

Please just keep praying for strength for all of us. We need it every day.

We are determined that through whatever comes our way, we will continue to Praise the Lord. He is worthy at all times, not just when things are going like we want them to. I heard it said, there are only two places to praise the Lord, inside and outside and there only two times to praise the Lord, when you feel like it and when you don't feel like it. I guess that doesn't give us any excuses NOT to praise Him. Take time to just praise the Lord today as you also pray for us. Thank you our dear friends and family.

Friday, May 27, 2005 12:00 AM CDT

Chad and I are finished with school for the year. I'm relieved that I don't have to feel the pull from that direction.

Cameron is feeling good today. He has good energy and a fairly good appetite.

I forgot to mention but I know many of you are interested in this aspect of our family situation. Chad, having turned 18 last October is considered to be an adult. In our state, and in many other states, we have to be assigned by the courts as his legal guardians. The waiting list for that to happen through the state agency is long and slow. To do it on our own would have cost us up to $1,500. So we were waiting for the process to take its course. Well, Cameron's relapse and need for Chad's help again, we had to try to speed the process so we had the authority to sign medical release papers for Chad.

We asked around to people in the "know" and didn't seem to be getting the info we needed so I "took the bull by the horns" on Friday. Cam and I went down to the District Court and told the Civil Court Judge's secretary our situation. She said, "let's take care of it right away." So I had to fill our a short form, pay the $107.00 filing fee, she got the judge to sign the paper and TA DA.....it was done!!! We are now legally Chad's guardians. This is a temporary guardianship, for 6 months, and now the permanent process has a little more time to take place. They have to do a home study, get witnesses, Chad will be represented by his own attorney and a guardian-ad-litem (sp?). I wish they would put that much effort into checking the homes and backgrounds of some children who are really in need of protection. Anyway....that's the way it is.

We are looking forward to having a weekend home with the family. Hope you all enjoy the Memorial Day Weekend.

Thursday, May 26, 2005 11:02 AM CDT

We got home from the hospital at about 5:00 last night. It is amazing to me the difference I see in Cameron the moment he is released from the hospital. When he is in there, he becomes quite sullen, non-communcative, focused and he shows little energy or interest in much of anything (except video games and some silly sit-coms like Family Matters with Stene Urkle). When he steps foot out the door, I get my real son back. He starts talking a lot, talks about all the things he wants to do, shows his sense of humor, etc. Because he is still feeling the effects of the chemo, his energy is low and he is emotionally sensitive, but he is back to himself.

He did not have as much nausea as we thought he would after this round of chemo. His counts are dropping like a brick, though. We have to give him GCSF shots at night for 10 nights. These shots are to help to stimulate his bone marrow help his blood cells to come back more quickly. These shots are new to us so it wasn't fun giving him the first shot last night. It went ok, though. I told you, pretty soon I am going to really feel like an RN :).

I am wrapping things up at school today and tomorrow, then I am off for the summer and can concentrate on the kids and home. Our friend, Ercilia, is staying with Cam today to keep him company and to help him as needed. Thanks, dear friend.

Tuesday, May 24, 2005 4:02 PM CDT

The past couple of days can best be described as BORING! Cameron has been playing video games and I have been reading and doing word puzzles. Last night, he started to feel the effects of the chemo but just slightly. He took some ativan (sp?) It made him kind of loopy through the night. He was doing some silly things but he doesn't remember them. I didn't get much sleep, however. This round of chemo is expected to give him a lot of nausea. Today, he is still feeling kind of lousy but not as bad as expected, yet. Hope and pray it stays that way.

We are expected to go home tomorrow evening some time. His last dose of chemo is this afternoon but he has to have messna, a drug that protects the kidneys from the chemo's toxicity,every 3 hours for 8 doses after the chemo is completed. Then we can go home.

Cameron and I have been watching this season of American Idol so we are looking forward to seeing the season's finale. I was a Carrie fan, (and I liked Anwar) from the beginning and he was a Bo fan. I guess we agree with lots of other people. We'll see who wins.

I went out for a few errands and realized it might be best to stay in. It is HOT. I guess it got up to 95 or 96 yesterday and today it is 94 here in Albuquerque.

I'm writing from the parent library here in the hospital. Hope I can update again soon. Thanks, again, for checking in on us and for your comments.

Sunday, May 22, 2005 8:49 AM CDT

Friday was a good day. We went to clinic in the morning and then we went to the Star Wars movie. We both really enjoyed it but Cameron, being the Star Wars junkie, really had fun!!

We walked around the mall for a little bit, got a quick bite to eat and made our way across Albuquerque in the Friday rush hour traffic to get to the hospital by 5:00. When we got there, we were told the room wasn't ready so we had 2 hours to fill. We went to another mall closer to the hospital and Cameron was able to use a Barnes and Noble gift card that he received from a friend from the ALL-LIST. THANKS SO MUCH! He got three Star Wars books. Did I mention that he likes Star Wars? Now he will be motivated to do some pleasure reading.

By the time he was admitted, his port accessed and he had his 3 hours of pre-chemo hydration, they did not start his chemo until 12:00 midnight. It is IV infused so we were able to sleep although there were the necessary interruptions. His blood pressure was automatically taken every 15 minutes for the first hour(I think it was 15 minutes). Can you imagine having your sleep interrupted by getting your arm squeezed HARD 4 times an hour?

He was feeling good yesterday. He played video games a lot and was up walking around some. These chemos are ones that cause nausea but it had not yet hit him yesterday. He ate throughout the day. He will not (or cannot?) eat hospital food. The thought of it makes him wince so I eat from the tray so that food isn't wasted and get him or make him what he wants. In my opinion, the hospital food isn't too bad but it sure isn't STEAK and ALE!!

We had a wonderful surprise when my niece, Rachel, from Springfield, MO called. She, her husband and some friends
were in Albuquerque on their way home from a vacation road trip out west. She came by the hospital to visit for about an hour. Thanks, Rachel, for coming by. It was great to see you!

Ed and Chad came around 9:00 for the changing of the guard. I came home with Chad.

Every time I log on to this web site, I see the numbers of you who are checking on us. Thank you for your concern. Please keep praying. We still have a long road ahead of us.

Thursday, May 19, 2005 5:17 PM CDT

Today was pretty uneventful which is nice after a couple of whirlwind days. Cameron's cough and hoarseness continues. We'll be able to ask the doctors about it tomorrow.

After school today, Cameron went and visited some of his friends. It was good for him to see them. School is out next week so he won't have a chance to do that again.

We have a clinic appointment tomorrow morning and then he has to be admitted later in the day for chemo. When I told one of the nurses that Cameron was going to be so disappointed that he will miss the new STar Wars movie, she contacted the Children's Cancer Fund of NM. They bought tickets for us for tomorrow afternoon. Isn't that cool? He is excited to see it,and well, I'm excited to see him happy.

Wednesday, May 18, 2005 1:37 PM CDT

Well, let me see if I can summarize the last couple of days for you. We didn't leave Santa Fe until around 4:15 so we arrived in Denver pretty late. I think it 10:15 since we took an hour for a supper break. We stayed at my brother, Larry's house. Although he was away on business, his wife, Kathy, was there to greet us and make us feel right at home along with their sweet dogs, Sydney and Vince.

We took our time getting up on Tuesday morning and arrived at Denver Children's Hospital at around 1:00. Labs were drawn and then we had our conference with Dr. Giller. He discussed the proposed treatment plan. It involves taking perpheral stem cells from Chad's blood rather than from the bone marrow like last time. This will involve Chad being hooked up to a machine by IV for several hours...up to 6 hours, to collect the stem cells. Dr. Giller got a good idea of the challenge that will be as he observed Chad throughout the afternoon. Their team will put together a plan on how best to do that. Because it will be a challenge, he wants to harvest the cells to be sure they get good results before they submit Cameron to the pre-treatment regiment. They will freeze the stem cells until Cameron is ready for them. Sounds logical to me.

The idea is to try to encourage graft vs. leukemia. I think it can sort of be explained as Chad's cells, inside of Cameron, will go to war against the leukemia cells that are remaining. This is risky but there have been some successful cases with the type of leukemia Cameron has, Acute Lymphocytic Leukemia (ALL). The other option is to go with the full transplant again but that would be more toxic and Cameron's body has already endured a LOT of that. It will be an option, however, if the other treatment does not seem to be working.

This will be taking place in 4-6 weeks in Denver. The process will likely keep us in Denver for 8-10 weeks or for the whole summer. I can think of other things I would rather have for Cameron to do for summer vacation!!!!!!! In the mean time, he has to continue consolidation chemo therapy in Albuquerque for the next few weeks. He will be going into the hospital on Friday for 5-6 days for the next round.

Today, he is tired and kind of quiet. He has been coughing up a lot of phlegm and it has left him very hoarse. I'm a little concerned but don't think it warrants a phone call to the doctor yet.

On a side note, some of you may not want to read this but I want to include it so you will know what we deal at times in addition to Cameron's fight with leukemia. We had a rather challenging drive home from Denver. Between Colorado Springs and Pueblo, Chad had a major BM accident. It was quite a mess and we didn't know what to do so we decided that the only thing we could do to clean him up was to rent a hotel room and to use the bathtub or shower. So that's what we did. It was a good, although a little expensive, solution to a difficult problem. He had more diarrhea a little while later but it was not such a mess so we handled it without much trouble and were on our way. We didn't get home until 1:00am and got up as usual at 6:00 for school and work. We are looking forward to a little nap or at least an early bedtime.

Monday, May 16, 2005 3:01 PM CDT

We will be leaving Santa Fe within the next hour to go to Denver. We have an appointment with Dr. Giller tomorrow to consult about his ideas for treatment for Cameron. We are so blessed that my brother, Larry and his wife, Kathleen live in Denver so we will be able to sleep at their house tonight.

Cameron is continuing to feel the withdrawl symptoms of coming off 28 days of prednisone. He described the feeling as being "one big bruise". His muscles are sensitive to touch and he is achy in his ankles. Today, he has had a headache, too. Hopefully, he can get comfortable in the van for the 5+ hour ride to Denver. He also gets sensitive in his emotions and gets a little short on patience with Chad. We have to work at keeping Chad calm and out of Cam's space.

Thank you to John and Michelle for watching the dogs for us while we are gone.

Saturday, May 14, 2005 5:43 PM CDT

It has been a quiet, nice Saturday, a good day to get caught up at home. Cameron went with a couple of friends to see the new movie, Kicking and Screaming. He said it was really funny. And it was "good to get out". He held up pretty good but was tired when he got home. He also figured out how to put the collage on the front picture of this page. What a guy!

We are thinking about our friends and church family who are in Mystic/Groton, Connecticut. The news of the submarine base more than likely closing there is devastating news. We are praying for you all.

Friday, May 13, 2005 9:00 AM CDT

I can't believe it has been 3 days since I wrote. Where does time go?

Wednesday, Cameron's friend, Tanner and his dad and sister, Morgan came over to spend some time with Cam. They also surprised him with the new Star Wars video game for PS2. He was thrilled because he has had his eye on it and was saving to buy it. Thanks Vaughns!

Yesterday, Cameron had a clinic visit. It went MUCH better than last week. He just had a bone marrow biopsy and aspirate. We will know the results today for Monday. We are, of course, expecting that he is still in remission. His platelets are somewhat low but the docs did not feel he needed a transfusion yet. However, that does cause more bruising at the bone marrow site. It wasn't bothering him too much last night.

Today is his last day on the dreaded prednisone. He has taken it for 28 days. It has given him the round face and bloated belly so often seen in cancer kids. That should lessen in the next few days.

We are looking forward to a sort of normal weekend before heading to Denver on Monday.

Thanks for checking in.

Tuesday, May 10, 2005 9:35 PM CDT

Cameron had a good day, again. The prednisone he is taking makes him think about and desire food all day long. He gets really indecisive, too so although he wants to eat, he is not sure what it is that he wants. He said it makes him moody but to tell you the truth, he has hidden it pretty well because he doesn't seem grumpy or moody to me.

He is hooked up to the last dose of antibiotic. I hope that is it, at least for a while.

The MRI he had while in the hospital shows that his bones have taken quite a beating from all the chemo and radiation he has received. He is taking fosamax, calcium and vitamin D drops to try to encourage bone growth. One doctor said his bones look like the bones of a 75 year old! YIKES!!!

Our friend, Ercilia, spent the day with Cam so I could go to work. I need to work whenever I can because I have no more sick days or personal days. There are only 2 1/2 weeks of school left so then I'm off for the summer anyway.

He has done so well in school this year that is not expected to do any more school work for the 7th grade. I'm glad he is a good student and not having to struggle to pass his grade level.

Tuesday, May 10, 2005 9:47 AM CDT

Just a quick note to let you all know that Cameron is doing really well. He has gained some strength and had a good day yesterday. He had a couple of friends stop by after school to see him. That always lifts his spirits and keeps the boredom down, too. We had the last morning dose of the antibiotic this morning so we don't have to do the early routine anymore for now. Yeah!

I'll write more later. Thanks for checking in on Cam!

Saturday, May 7, 2005 8:25 AM CDT

Cameron had a good day yesterday. He enjoyed spending time with Derek and I went to work. Our mornings are crazy. He needs four more days of vancomiacin, the IV antibiotic. he gets it every twelve hours. The medicine has to be taken out of the refrigerator 2 hours before starting it so I get up at 3:00am to take it out, re-set my alarm for 5:00am to get the infusion started. It takes around 2 1/2 hours to drip so then I can leave for work about 7:30 and be just a little bit late. Then we do it all over again after school. Today, I got started a little later because I don't have to go to work but we have to stay on schedule as much as possible.

One of the 3rd and 4th grade classes at my school collected things they thought would make them feel better if they were sick. They put books, toys, even Gatorade and a couple of gift cards in a basket for me to bring home to Cam. It was fun for him to look through all the things and he was deeply touched by these "strangers" doing that for him. He actually went out to the store with Derek later in the day to use one of the gift cards to buy a new video game. Boy, he was tired last night!

Did I mention that he is down to 94 pounds? (he is 5'3") His usual weight before the relapse was about 105+ so he is looking very thin! He can't wear his jeans and his belt is even too big to help.

He says he is getting tired of being sick and tired but he really doesn't complain much. He always manages to tell me how much he loves me and appreciates everything I do for him. He is a joy to be around even when he is in the pits of this awful disease.

Please write in the guest book. We love to read your comments and get encouragement from them.

Friday, May 6, 2005 8:20 AM CDT

Cameron had a difficult day yesterday. We spent the whole day at the clinic in Albuquerque. First he had to get platelets. It took a long time for them to come. Cameron was very hungry since he wasn't allowed to eat at all because he was also scheduled to get a spinal. Finally, he got the spinal with triple chemos injected. After waking up from that procedure, he had the painful peg-alsparganese shots. He was exhausted and finally able to eat at about 3:30.

Because the clinic visit took much longer than expected, I was stressing out about getting home in time to get Chad off the bus. It was too close for comfort, so I had to call on our friend, Kimberly, to come to our rescue, again.

Around 7:00, our spirits were lifted when his big brother, Derek walked in the door! He is home from Springfield, Missouri for a few days to visit. He'll be home for a couple of months during the summer. It is soooo good to see him. He hadn't been home since Christmas.

I just finished giving Cam his morning dose of IV antibiotics, vancomiacin, so I gotta run to work for a few hours.

Tuesday, May 3, 2005 7:44 PM CDT

At about 4:30 today, Dr. Frost called to say the bone marrow biopsy came back leukemia free....he is officially in remission! Praise God! That's what we needed to hear.

Cameron had a good day today. He is gaining strength and eating well. His friends, Walker and Caldon, came over after school and played some video games with him.

I was able to get caught up on home stuff...yeah! I feel good about checking a lot of things off that long to-do list.

Derek is coming home tomorrow for a few days. We can't wait to see him. He hasn't been home since Christmas!

Please keep praying that the doctors will know exactly the right direction we need to go next. We have heard a lot of negative things from various sources about replapse after transplant. We are trying hard to focus on the few positive threads of hope we have heard. God is able to heal this boy and we are trusting him to do that in the face of not very good medical odds. Please keep trusting with us. Psalm 91:14-16 was given to us by our Pastor's wife to stand on. It reads,
"Because he loves me," says the Lord, "I will rescue him. I will protect him for he acknowledges my name. He will call upon me and I will answer him. I will be with him in trouble. I will deliver him and honor him. With long life will I satisfy him and show him my salvation."

Monday, May 2, 2005 8:28 PM CDT

What a difference a couple of days makes!! We are actually home from the hospital tonight! We arrived at home around 6:30 tonight and ate a delicious dinner brought to the house by some of my colleagues at El Dorado Elementary School. Thanks!

Cam continues to be sort of weak in his legs but getting stronger. No fevers, although there is still some kind of infection growing in the blood cultures. He has to continue on IV antibiotics at home. I got a crash course from a home health nurse on how to administer that. It has to be given twice a day, 12 hours apart for 2 hours each.

We still haven't gotten the bone marrow biopsy results but the doctors have told us to proceed as though he is in remission. We now have to begin talking with Denver Children's Hospital about a consultation about our next step in getting Cameron well.

The doctors admitted they were really worried and puzzled about Cameron last week. His symptoms were unusual and extreme. The MRI they took showed a herniated disc in his spine but the neurosurgeon said he did not think it was big enough to be of concern and that it did not cause the leg pain or weakness. It is something to keep an eye on, though.

Before I lost the last entry, I was thanking the kids at Cameron's school for donating money to buy him the latest game system, PSP and a game. He loves it and was touched by the efforts of his friends to get that for him. Thanks kids!

I want to publically thank Kimberly Weems, her husband and kids, Walker and Caldon for helping us so much by getting Chad off the bus many times and keeping him busy until Ed could get home from work. You have been such a HUGE help to us!! You are wonderful friends.

Hope there is more good news tomorrow! Keep praying. It makes all the difference in the world!!

Saturday, April 30, 2005 11:12 PM CDT

I just wrote a LONG journal entry and then lost it when I tried to preview it. I'm too tired to repeat it all now but I want to let you all know that he had a much better day today. His leg pain is much less, has better strength, no fever for 24 hours, white cell count is up.

He has sat up in the chair for a few hours and even took a few steps across the room with my help.

I will write more tomorrow after I get a good night of sleep.

We love you all and VERY MUCH appreciate your prayers, call, notes, everything you do for us.

God is here with us even when things look rough.

Thursday, April 28, 2005 5:08 PM CDT

Ok, we really need extra prayers. Cameron continues to run a fever. It was up to 101 today and the doctors still haven't identified the source of infection.

Cam is MISERABLE, lots more mouth sores so it is hard to talk and eat, still pain in his legs, still low blood counts although he got platelets and red cells last night so that boosted them some, loosing hair by the handful, all-in-all he's feeling lousy and is emotionally drained and tired of feeling bad. I can't stand to see him hurting like this.

Ed is headed to the hospital now to pick him up. There is a bed available in Albuquerque so they are going down to UNM hospital. (An ambulance would have been a good idea but Cameron was adamant about not wanting to go that way.) I'm glad he is going there because the care is so much more specialized without the "middle men". He got good care at St. Vincent's but they just don't have the specialization to deal with Cameron's complications.

I'm going to sign off now so I can just go have a good cry. Anyone want to join me?

Wednesday, April 27, 2005 1:53 PM CDT

Cameron is feeling quite a bit better although he still can't stand without significant leg pain. He can't walk yet. His fever is low-grade.

Don't know much else yet. I'll write more when I know.

Thanks for your concern.

Tuesday, April 26, 2005 1:00 PM CDT

Cam was readmitted to the hospital at 3:00 a.m. on Monday morning. He was feeling really bad during the night. When I took his temp, it was over 101 so off to the emergency room we went. There are no vacant beds in Albuquerque where we usually go so he was admitted to St. Vincent's hospital here in Santa Fe. It is kind of weird but I know these doctors are consulting with the UNM doctors and getting their instructions from them on how to treat Cam.

He has EXTREME pain in his legs and some in his arms. He can not put any weight on his legs. I understand it is from some of the chemo he got on Thursday. He also has some "stuff" growing in the blood cultures so they are treating him with three different antibiotics to try to tackle whatever it is. They will know more about what the exact culprits are soon and will know exactly how to direct the therapy. He is no longer running any fevers, Praise the Lord for that. He is tired and grumpy (which is understandable since he feels so BAD). He ate a few bites of a bagel today so that is a step in the right direction.

Gotta run back to the hospital One advantage to having him in Santa Fe is that I can run home for a shower in my own house, pick up what we need and get back in just about an hour.

Thanks for all of your encouraging words and prayers.

Sunday, April 24, 2005 12:09 AM CDT

It's Sunday morning. Cameron is really not feeling well. He doesn't have a fever but aches all over and has no energy. He is just sleeping and laying around.

Friday, he took a shower and got so exhausted he blacked out and couldn't move. I had to help him to his room to lay down to gain some strength. Yesterday, he continued to be tired but tried to be up and around most of the day. Maybe he over did it and is feeling it today.

He continues to keep as much of as positive attitude as possible. He continues to amaze me but it hurts sooooo much to see him hurting.

Friday, April 22, 2005 9:39 AM CDT

We got to come home last night. It was great to all be together under one roof. Cameron is tired and weak but otherwise feeling pretty good. His ANC (formula using the blood cell counts that indicates how good his immune system is) is only 85. Anything under 500 is not good so you can see that he will have to stay home and away from too many people.

We don't have to go back to Albuquerque until Friday morning unless he starts to run a fever. We, of course, are praying that doesn't happen.

Wednesday, April 20, 2005 5:39 PM CDT

Cameron has been feeling better. He hasn't had any fevers for a few days and is gaining strength. His sense of humor is even showing through :) His counts continue to be low due to the chemo therapy. He had platelet and red blood cell transfusions in the past couple of days. The good news... Dr. Matthew said there were no leukemia blasts in his peripheral blood today!!!

Tomorrow, Cam will have a bone marrow biospy to see how the bone marrow looks and to see if we have achieved remission yet. He will also have a spinal with chemo, two painful shots, vincristine through the IV and continues on the prednizone. WE are hoping to be able to come home tomorrow evening if he is feeling up to it after the big day of procedures and chemo. He is really ready to see the dogs and sleep in his own bed.

Thanks to those of you who have visited, called, prepared meals, sent cards or e-messages. Your caring gestures mean so much to us.

Saturday, April 16, 2005 6:28 PM CDT

I am home for a few hours so I have time to write an update.

Cameron has had, as you might expect, a terrible week. He had to have surgery to implant the central line, again for the third time. It hurts for a few days after that. He started the chemo regiment which has made him sick, tired and aching. He's been running a fever of about 102 off and on. It is responding to Tylenol.

Last Friday, Cameron went to the clinic, went to school and went swimming with his friends at the Community Center. Saturday, he had his drum lesson, played basketball, rode his bike and had a friend spend the night.

This Friday and SAturday, he is sleeping most of the day, hurting and gets exhausted just taking a few steps into the bathroom to brush his teeth. This is SOOOO unfair!!!

Ed, Chad and I are exhausted from trying to keep other balls in the air....work, school, bills, eating, mail, dogs, driving an hour to Albuquerque almost every day, etc.

Thank you for your support. Please continue to pray for us and please sign the guest book or send a card or note to Cameron at Cameron Dalene
40 E. Chili Line Rd.
Santa Fe, NM 87508
I know he would love to receive mail.

Thursday, April 14, 2005 8:09 AM CDT

Well, the news is BAD. After a year post-transplant, Cameron's leukemia has returned. He is in the hospital, University of New Mexico Hospital, beginning chemo all over again.

I don't have time to write more than that right now. I'll write more later today.

Tuesday, March 22, 2005 3:53 PM CST

This is a huge day for Cameron. One year ago today, Cameron arrived at CHOP for pre-transplant tests. He was admitted on March 23 for the radiation and harsh chemo treatments required before the transplant.

Today, Cameron had his one-year post-transplant check-up with Dr. Bunin. She was so happy and impressed at how well he is doing! They all commented on his lovely hair. He had a cardiac stress test that, also, went well. Thank God for all of these victories.

Because of several factors, we decided it would work best for Ed to take Cameron for the check-up. (Although I really was sad to miss it since I have been so heavily involved in every aspect of his treatment and recovery.)
They flew out to New Jersey on Friday. They have stayed at Arnold and Elinor's house for these few days. Ed and Cameron have been able to visit Ed's mom who is in a nursing home still recovering from abdominal surgery she had on Christmas Day. They have also attended special church services at Bethany Church with guest speaker, John Kilpatrick. They were some fabulous services.

Yesterday, Ed got hit pretty hard with a stomach virus. He was in bed all day and still wasn't much better this morning. It was not a good idea for him to travel to Philly or to be around kids in the oncology clinic so Elinor took him for the appointment. I am thankful she was available to do that. I, again, felt bad that I wasn't there but everything worked out.

His blood counts, physical exam, all his tests have been perfectly normal!! Yeah!!

I will put some new pictures on the web page soon. I promise.

Tomorrow, they are driving to Connecticut to visit some friends before returning home on Saturday. When he gets back we will celebrate his new birthday...April 1.

Monday, December 27, 2004 5:24 PM CST

Day +270 or almost 9 months

We hope and pray our friends and family had a merry Christmas and will have a Happy 2005! We had a nice family Christmas. Derek is home for a week, Cameron is feeling great, Chad especially enjoyed opening the presents this year and Omi got to enjoy a Christ-centered Christmas season with a real family for the first time in many years.

We are nearly at the 9 month post-transplant milestone. The days, weeks and months click by so fast. Soon we will be making plans to go to Philadelphia for Cam's 1 year post-transplant visit. He is feeling good and has just started basketball. He has never played on an organized team before since he has been "sick" for the past 4 years.

We are mindful of the many children who are not faring so well this season....either in the midst of fighting the cancer battle, facing recent relapse, recent diagnoses, or families who are remembering a loved one who lost the battle in recent months or years. Our thoughts and prayers are with each one of you.

Some family news: Ed's mother had to have emergency surgery at 1:30 a.m. on Christmas morning. She had a perforated colon which needed immediate repair. She came through the surgery ok and is now recuperating in the hospital in Glens Falls, NY.

Ed's Uncle Lucky passed away, too, on December 23. Ed visited with Aunt Esther and their family in Denver yesterday and today as they all said their farewells to him.

Our "kids", James and Kristie Levesque and their three children, Jaclyn, 7, Israel, 6 and Javen, 3 came to visit from Connecticut for a week. It was great having them here. James and Kristie ministered in our church for two services. James preaches and Kristie ministers in worship music. Mostly, though, we just enjoyed visiting and catching up.

We continue to put our trust in God as we face another promising year in His care.

Saturday, November 27, 2004 9:15 AM CST

Day +240 or almost 8 months

We had a lot to be thankful during this Thanksgiving season! As is our tradition, each family member takes a turn during Thanksgiving dinner to share what they are thankful. Cameron simply said "I'm thankful for Chad's bone marrow!" That says a lot.

Of course we are thankful that Cam underwent a successful bone marrow transplant and for his hero, Chad, for the perfect match. We are so thankful that Cameron continues to do so well and pray for a long, healthy life.

We are thankful for all the people who have been so helpful to our family in the past year through prayer, visits, food, babysitting, words of encouragement, etc. There are far too many to list here but you all know who you are. THANK YOU!!!

We are thankful that Derek was able to be home from college for a couple of days. He is doing well at school and is now working at a residential home for handicapped adults.

We are thankful that Omi has joined our family after many months of trying to make that happen. Ultimately, it was not our efforts that paid off but it was God who orchestrated the whole thing.

We are thankful for God's provision. He has helped us financially this year. Without the extra help, I don't think we could have made it through the whole transplant period.

Ed and I are thankful that we could celebrate our 22nd wedding anniversary on the 20th. We have had quite a ride during those 22 years. I'm thankful that I have a strong, faithful, hard working, loving man for a husband and especially that he loves and serves the Lord with all his heart.

Saturday, October 30, 2004 10:53 AM CDT

Day +212!!

Cam's +200 day posttransplant came and went without us even noticing. A few days later I noticed it. It is nice to be getting back into such a normal schedule, we didn't even notice. In two days, we hit the 7 month post-transplant milestone.

Yesterday was Cameron's 13th birthday!!! He is not officially a teenager! He had a few friends come and spend the night to celebrate.

He had his monthly visit to the clinic on Tuesday. The doctors and nurses surprised him with a birthday cake, sang "Happy Birthday" and gave him a nice gift. That was fun but even better is that he continues to have good check-ups and lab test results. Praise God! Thank you Lord!

We had fun on Thursday. Ed got Cameron and me an invitation to see former President George Bush and the President's twin daughters at a rally in Los Alamos. Cameron got Jenna Bush's autograph. We seem to be in the great minority around here as Bush supporters. However, as I speak out a little more, I hear there are others who have been timid about voicing their opinion. The Kerry supporters are pretty boisterous and nasty around here. Only a few more days that we have to tolerate these unending political ads and, I pray, Bush will be elected for another term.

Tuesday, October 5, 2004 5:59 PM CDT

October 5, 2004 and Day +187

Last Friday was 6 months post transplant. Time has gone quickly since that momentus day. In some ways, though, it seems like it is much longer than that. CHOP and Philadelphia already seem like a sort of distant memory. Isn't that great!! We are blessed!!

Cameron went back to school on Thursday, Sept. 30. He is happy to be back in a normal kid routine. His stamina has held up really well. We are continuing to pray that he will be protected from any viruses. That is the thing that could be dangerous for him. He looks and feels so good!!

It's a quick but "happy to report" kind of update.

We would like to continue to hear from you. We check the guest book every day for any new comments from friends and family. We would like to hear how you are doing, too.

Saturday, September 11, 2004 3:01 PM CDT

Day +164

Thought I'd take a minute to update Cam's page. Everything continues to go very well. Ed, Chad, Cam and I visited my brother, Larry and his family in Denver last weekend. Ed and Cam took the day on Sunday and went to Six Flags in Denver and had a great time. Larry has a Harley so he took Cam for a fun ride. Cam is still talking about that. We also got to visit Ed's Aunt Esther and his cousin, David and his son, Aaron. I was a little nervous about Cameron going to an amusement park, but he was careful and was fine.

Friday night, we participated in Relay for Life in Los Alamos. Cam's friend, Tanner, who also has leukemia, invited him to walk with the other cancer survivors as part of the bigger relay to raise money for cancer research. We were walking for you, too, papa, and in memory of my sister, Linda.

Cam is excited because he got contact lenses....good-bye glasses. It makes him look older.

Don't all of these things sound pretty normal? Isn't it great?!

"Home schooling" is keeping Cam busy. He is working at least 4 hours a day on school work and then is required to do 30 min of extra reading and 30 minutes of physical exercise. It is not always easy for a kid his age to discipline himself when I'm not around to remind him but he is doing it.

Omi is still adjusting to us and we are to him. What a tremendous change in lifestyle for his young man from ANYthing he has had before.

Saturday, August 28, 2004 9:15 AM CDT

Day +149!
Everything continues to go smoothly here. We are back into the school routine. Cameron is getting his school work from his teachers and his tutor, Kimberly Weems, works with him for an hour in the afternoon.

We went to the clinic on Thursday, again. We haven't gotten the CBC results but I know they would have called right away if there were any concerns. We don't have to go back for a month. Cam will get a blood draw from home health in between then and now. We are so blessed!!!

Cam was excited that his hair is long enough to even style a little. Yeah!

Our new "son", Omi, is settling in nicely. He is attending classes at the Community College working toward getting his GED. We are still waiting for his birth certificate, etc so he can get his driver's license. Then he can get a job. He has quickly become a part of our family. Again, we are blessed to have him and to be able to provide Godly parenting and guidance for him.

Saturday, August 21, 2004 9:03 AM CDT

Day +142
It has been a busy week here. I went back to work after being gone since March 16. I have returned to work at El Dorado Elementary School so we had teacher meetings for three days before the students started on Thursday. Because there is a need for Speech Pathologists, I have been asked to work at 2 schools. It will be a heavy load since I only work 4 days a week.

Cameron was naturally disappointed that while the other kids were returning to school, he still has to stay home. I met with his principal and his team of teachers at the Charter school he will be attending for 7th grade. They will be sending home his work via email or through his tutor that they agreed to provide 4 hours a week. We're happy that the school rehired the same tutor from last year, our good friend, Kimberly.

Last Friday, we welcomed into our family, a young man from Connecticut, Omi. I got to know him when I worked at the Waterford Country School and God impressed on me (and later on Ed) that we should do whatever we can for this kid. To make a long story short, he turned 18 in May and no longer had restrictions between the states regarding his custody, so he was able to come. We are all making the adjustments this kind of change requires. We are so happy he is here.

Derek returned from Sturgis and his visit in CT but has to turn right around and return to Evangel University tomorrow. :(

If you came to the web page to check on Cam, I guess you got a lot more information than you really wanted.

Wednesday, August 11, 2004 1:55 PM CDT

Day +132
We got the lab results from last Thursday. The IVIG results were 720. The criteria for needing a boost to his immune system as set by CHOP is 500 or less. So, obviously, he is doing well and doesn't need the treatment. I talked to the nurse practitioner at CHOP and she explained to me that this is an indicator of b-cell function or how well he can fight bacterial infections. She said he is almost at the normal range. However, the t-cells are later to develop. The t-cells fight viruses. That is why he has to still be very careful around crowds and especially around children who are most likely to pass viruses around.

His headaches are gone....yeah! He feels great. We had a fun visit with the Pfisterers. The kids went hiking up in the mountains. Cam kept up with the others and even led the way up some of those trails. I thought he would be exhausted but he wasn't. He tends to be tired the next day after that much activity.

I'll try to put some new pictures on the web page so you can see how big Blaze has gotten. He is a wonderful addition to our family although he is a very busy and energetic puppy.

We are soberly reminded that one year from tomorrow, Ed's nephew, Kris Dalene, was tragically killed in a car accident. He was only 21 years old and had so much to live for. We are especially thinking of and praying for his parents, Frank and Gwen and his sister, Katherine this week.

Friday, August 6, 2004 3:23 PM CDT

Day +127
We went to our bi-weekly clinic visit yesterday. Because Cam just passed his 4 month post-transplant milestone, August 1, extra blood work will be done to check on his immune system in addition to the normal CBC, chemistries, etc. that they usually do. We will have those results in about 4 business days.

Everything is going fine except that Cameron has been having some headaches for the past few days. It doesn't hurt when he is inactive, but when he moves around a lot, even when he shakes his head, it hurts. The doctor didn't seem to know what to think of it and just said to keep hydrated and keep them informed if it gets worse. I am pretty sure it is nothing cancer-related but EVERYTHING becomes a greater-than-usual concern to me still at this point.

Derek is enjoying his time in Connecticut. He's been spending lots of time with friends and practicing with the church worship band getting ready to play at Sturgis, SD. They leave tomorrow and will be there a week playing at the Black Hills Motorcycle Rally. Thousands of people will hear them play and sing about God's love in a fun, rock-n-roll style of music. He plays the bass guitar and is really good at it. OK, moms are allowed to brag a little.

We are looking forward to our dear friends, the Pfisterers, from Mystic, CT coming to visit tomorrow. Dan Pfisterer is Cam's best friend whom he misses VERY much since we moved out to NM. They will be here only until MOnday morning.

Sunday, July 25, 2004 7:50 AM CDT

Day +125

Is it really over two weeks since I updated this journal? I can hardly believe how fast this summer is going.

My knee surgery went well. Now, over a week later, I am doing pretty good. The knee is still sore and I need to be careful and not walk too much or it will really start to hurt, again. The boys waited on me like real troopers for the first 3-4 days when I really had a hard time getting around.

Cam went to clinic on Thursday and again, the report is all good. The magnesium was dropped now so he is down to only the 2 preventative meds! Yeah. The next time we go, Aug 5, will be just after the 4 month post-transplant. That is when CHOP wants further tests to see how his immune system is doing and other not so routine tests will be done, too. It is just a blood test, though. No procedures needed. Thank God.

We went and registered Cameron for 7th grade at his school. We talked to the Principal about his needing to be home-bound tutored for a while at the beginning of the school year. She said she would look into it. Certainly the teachers would give him work to do at home but she wasn't sure she had it in her budget to hire a tutor to come and work with him. I don't really understand that. I thought it was a school's legal responsibility to provide that to a child with medical reason to keep him home. I will be looking further into it. I know it will all work out.

Derek leaves on Tuesday. He will be driving out to Connecticut to spend a week of visiting and practicing with the church worship band as they prepare for their 4th trip to Sturgis, SD to play at the Black Hills Annual Motorcycle Rally. He won't be back for 3 weeks then will have to turn around and get ready to return to Evangel University in just a few days. See how quickly the summer slips by?

We have to get ready for church. Cameron is going for the first time. We will keep him in an area away from the main congregation and all the people.

Saturday, July 10, 2004 11:00 AM CDT

DAY 100!!!

This is a good milestone to arrive at with good health and no complications. Cam went to the clinic on Thursday and again, the blood looks good, the liver enzymes are normal, etc. No concerns. Another of his meds was dropped so we are down in 2 preventative meds and a magnesium supplement. Yeah! I take more meds than he does.:)

Blaze has been here for a week and is fitting into the family really well. What a cutie.

No more news at this time. We are just enjoying being very laid back and easy going during these warm summer months. We are going to explore some of New Mexico's natural wonders this weekend. Maybe we'll take some pictures to share with you.

Thanks to you who have written in the guest book. We still love to hear from you when you log in. God Bless.

Monday, July 5, 2004 10:31 AM CDT

Day +95
Hope everyone had a good 4th of July. We went and saw the fireworks in Santa Fe last night. Today, Cameron, Derek and Ed went up to the Taos area to do some fishing and to enjoy the great outdoors together....father and sons. I am concerned about Cam getting too much sun but they reassured me they would use plenty of sun screen often. Will I ever stop worrying? Probably not. His energy level is still not nearly what it used to be. He "runs out of gas" pretty quickly.

Our big news is that we got a new puppy on Saturday. He is a 7 week old Golden Retriever named Blaze. He is a wonderful, cute, bundle of energy. He is very playful and curious like a puppy should be but that keeps us busy!!! The first night, he was a little angel and slept all night. Last night was a different story. He was up three times yelping and wanting attention. Hopefully there will be more nights like the first and less like last night!!

I will put some pictures on the photo page. A cute puppy always makes for some great Kodak moments!

Thursday, June 24, 2004 3:58 PM CDT

Day +85

Nothing really important to report. We went to the clinic for our weekly appointment in Albuquerque. We don't have to go back for 2 weeks now! The prograf, the anti rejection medication, was totally discontinued. His blood counts continue to be good and he is feeling fine. His appetite comes and goes but he always able to eat at least a little.

The worst part for him, as it has been for a few weeks, is that he gets bored being around the house so much. We were told that by Day +100 or so, he could start getting out more. He could even go to malls, stores, movies, etc. when there were not large crowds. Probably avoid all those places on weekends. It is a start. His bike needed some repair so we will get that back next week. That will help, too.

We are actually getting out tonight. We are going to a rodeo that is only a few miles from our house. It is outside and we will avoid the crowds as much as possible.
None of us have been to a rodeo before so it should be a fun, new experience.

Chad and Derek are doing great at school. Derek really enjoys working with his brother. Chad is slowly getting used to having Derek there, too.

The thought that comes to mind sometimes is that although the transplant is over and Cam is doing well, what if he relapses again. It is medically possible. But God has calmed my fears this week after a lot of prayer and has given me the scripture that "He who began a good work in him, (Cameron) will carry it on to completion until the day of Christ Jesus." Philippians 1:6. I am standing on that promise and not worrying about "what if's".

We

Friday, June 18, 2004 5:48 PM CDT

Day +78

Our clinic visit yesterday went very well. Dr. Winter was so pleased to see how Cam is doing. Once again, his anti-rejection medication was decreased, down to 1 mg from 4 mg when he was first discharged. Dr. Winter talked to Dr. Bunin from CHOP while we were there. She, too, is pleased ( think that is an understatement) with how he is doing.
I remain cautious because I know we are still early in the post-transplant period but can't help but be so thankful for how far he has come. I know God will see him through the next weeks, months and years with no further complications.

As we settle back into some kind of summer routine here at home, we are having to face the bills that are coming in. Our insurance is fantastic....don't get me wrong....but the co-pays, the deductibles, the extra expenses we had while we were gone are all staring at us now. It is a bit overwhelming but with God's help, we will handle this challenge, too. All we can do is take a day at a time and do what we can do.

Wednesday, June 16, 2004 5:57 PM CDT

Day +76

No news is good news. That's certainly true in our case. Cameron is doing great!! Thank God. We pray every day that it continues. We go to the clinic tomorrow and hopefully will reduce some more of his meds.

Derek got a job. You won't believe what he is getting paid to do. When I dropped Chad off at summer school on Monday morning, they were short-handed. They need classroom aids for the summer. I told Derek, he applied and was hired the next day. Today he began working as Chad's 1 to 1 aid!! Isn't that crazy? Derek is really happy about it. I would think he gets enough of Chad at home, but I guess not.

I consulted with an orthopedic surgeon today and it looks like I will need surgery on my knee to repair a torn cartiledge. It is not a major surgery but will take a few weeks to recover fully. I need to do it now during the summer since I am not working. I have needed to take care of this since December but obviously, other things took a huge priority over this.

Thursday, June 10, 2004 3:35 PM CDT

Day +70!!!

We are counting the days off quickly, it seems to me.
Cameron is now feeling great. His appetite is back and his energy level has improved a lot. One would hardly tell all that he has been through by looking at him, except the still almost bald head.

We went to Albuquerque to clinic today. Again, everyone was so happy to see him doing so well. His blood counts from last week were fairly good. I didn't get the actual numbers from today yet, but the doctor said the counts look even better than last week. He is being gradually weaned off the anti-rejection medication so we have to watch more carefully for any rashes or other subtle signs of rejection.

Ed has recovered nicely from the run. The hip did not apparently sustain any lasting damage. Thank God for that!
He is back to work at full throttle. The rest of us are enjoying home and being a little more laid back which is what summers are for, right? Derek is looking for a part-time job to help fill some of his long hours and to maybe pad his wallet with some spending money, too.

I'm so thankful every time I sit down to write an update that the news is good. We are truly blessed.

Monday, June 7, 2004 8:18 PM CDT

Day +67

We just got home from Steamboat Springs, CO. Ed ran a good race. His right hip locked up and gave him tremendous pain. It happened around the 18 mile mark but he kept pushing himself until the 22 mile mark. Then he felt it was best to quit pushing. He got a ride to the finish line. We were so proud of him, anyway.

Ed's boss, Mike, my brother, Larry, his wife, Kathleen and their friend, Larry all finished and said how Cameron was their big inspiration. Thanks to each of them for their tremendous efforts and the money they raised for the Leukemia and Lymphoma Society.

The night before the race, there was a pasta dinner for the runners and their families. Honorees were asked to say a few words about their experiences with leukemia or lymphoma. Cameron and Ed got up there and spoke. Many people were crying and at the end, they gave Cameron a standing ovation!!! Very touching for his mom and dad!

Cameron is feeling great....even eating better. His energy is much better and his hair is even growing in more. :) Our biggest challenge now is to continue to keep him as isolated as possible. On the trip it was very difficult since we had to eat out a lot ( we tried to eat outside whenever possible or bring food in).

It is good to be home and now we can actually unpack our suitcases and stay put for a while.

God Bless each of you! God is our strength! I don't see how we could have done any of this without his help.

Wednesday, June 2, 2004 12:27 AM CDT

Day +62
We arrived home last night at about 10:30 MDT. We pushed really hard, drove 18 hours on Monday and 13 hours yesterday. Needless to say, we were tired of being couped up in the van but overall, the trip went very well.

Cam and I are soooo glad to be home. We have the inevitable piles of laundry and some catching up to do around the house but Derek and Ed did a pretty good job of keeping up.

Cam is feeling a little perkier each day. His appetite is SLOWLY increasing,too. I got a call from CHOP that his bone marrow results finally came back. His bone marrow is 100% Chad's!!! GOOD NEWS! We will be going to Albuquerque on Thursday for his first follow-up appointment there. I am sure everyone there will be happy to see him.

His hair is slowly growing. His eye brows are coming in darker than they were. I wonder what his hair will be like when it starts getting a little longer.

Thanks, again, to all of you who so graciously let Cam and me stay at your homes in the past couple of weeks. Arnold, Elinor and Matt, Georgianna and Ray, Far Mor and Far Far. You all made us feel welcome and comfortable.

It was so good to see our friends at Seaport Community Chuch on Sunday. Derek got to play his bass guitar during the worship service. He used to be a regular on the worship team so it was good to see him using his talent, again.

We only have two days at home before we leave for Steamboat Springs, CO for the Team in Training marathon that Ed, Mike, Larry and Kathy are running in. Cam is an honored patient.

Friday, May 28, 2004 10:16 AM CDT

Day +58 ( I think)

Ed, Derek and Chad are currently driving in Western Pennsylvania on their way to pick us up. They have covered a lot of ground. They'll arrive at Arnold's house around 5:00. I can't wait to see them. Chad will be sooo excited.

Cam is feeling a little better. Yesterday, he was still tired but didn't nap all day. His appetite is still not there yet but he tried to eat some. I talked to another mom of a ALL kid. She said her son had the same somnelance syndrom exactly 2 months after radiation. that's when it hit Cam, 2 months after radiation. I'm glad to hear this is "normal" and not something unexpected.

We are so glad we will soon be reunited with the rest of the family. We are getting anxious to get back to Santa Fe and see our friends there, too. Thanks for all your e-mails and encouragement.

Give all of your families big hugs today. Enjoy your time with them during this holiday weekend. God Bless you all and keep praying. We still need it!

Wednesday, May 26, 2004 3:58 PM CDT

Day +55

Cameron had his blood drawn today at a local hospital here in New Jersey where his Aunt Elinor works. We got a call from CHOP that his counts are good. WBC 3.0, HGB 11.6, Platelets 196. Chemistries and liver function are also good. It is a relief because Cameron is still not feeling well. He is sleeping a lot and his appetite is poor. He even has been nauseated and has thrown up twice.

Ann, the nurse practitioner, said it sounds like he has somnolence (sp?). It is a results of the intense radiation he had before transplant. It is a normal reaction they often see with symptoms like Cameron now has. It should get better soon. He hasn't had any more fevers, though, so that's good.

We drove here to New Jersey yesterday and are, once again, staying with Ed's brother, Arnold, Elinor and their son, Matt. We feel at home here. They are wonderful people.

We stopped and had a wonderful, brief visit with a special friend in Hartford on the way.

Thanks to Georgianna and Ray for letting us hang out there for a few days. It was comfortable being there with great friends, too.

Ed, Derek and Chad left Santa Fe this afternoon to drive out here to pick us up. It will be a long drive! Chad's last day of school was today. Thanks, Sharon and all the others for working so well with Chad this year. He is "sunshine" but he is challenging, as well. Believe me, I know!!!

God is good and faithful. I don't know how I would make it through all these challenges without my faith that HE is in control.

Monday, May 24, 2004 7:53 PM CDT

Day +53

sorry I haven't written for a few days. We have been in a few different places. On Saturday, we left Schroon Lake, NY. Thanks Far Mor and Far Far for letting us hang out there for a few days!! It was great to see you. Then we came down to Mystic, CT to stay with our friend, Georgianna. Her husband is a submariner and was out at sea. We had a little scare on Saturday night. Cam ran a low grade fever. It is the first fever he has had in a LONG time. The cut off threshold when it is necessary to call the doctors and go to the hospital is 101.5. Cam's got up to 100.8 and then hovered around 100.4. It never went any higher but we got up every two hours throughout the night to check it. It continued until middle of the day on Sunday. After that, he hasn't had any more. He has been unusually tired and with a poor appetite, though. He gets hungry and wants to eat but eats only a couple of bites and is done.

We stayed around here in Mystic. Georgianna's husband, Ray returned to dry ground today so we got to see him for a little bit. We stopped by to see several of Cameron's old school friends. It was fun to surprise many of them and to "catch up" a little. He was able to spend time with Dan and his family and saw Nathan and Aaron, too.

We will be heading back to New Jersey in the morning. He has to get his blood drawn and tested there and the results will be faxed to Dr. Bunin at CHOP.

I think it is funny and interesting how many different computers I have used to generate these updates.

Friday, May 21, 2004 8:42 AM CDT

DAY +50!!!!

We are half way to the big milestone of Day +100.
We are enjoying our visit here in the mountain country with Far Mor and Far Far. (That's Norwegian for Dad's mom and Dad's dad). Cam even rode the 4 wheeler yesterday. He took it easy because he could tell he isn't as strong yet.

He has been REALLY tired, fatigued. Ginny told us he would have days like this so we are not concerned. We just encourage him to rest, rest, rest.

Wednesday, May 19, 2004 7:48 PM CDT

Day +48

Cam and I drove up to Schroon Lake, NY today to visit Ed's parents. They live out in the woods in a beautiful home up in the Adirondack mountains. It is so peaceful here with the deer visiting the yard frequently. If we are lucky we will also see black bear that come around, too.

Mom and Pop have been so supportive of Cam's whole transplant process but because Mom broke her leg several months ago, she is confined to her bed and could not travel down to Philadelphia. Now they are thrilled to see Cam and how well he is doing. Their neighbor, Marge, had been helping them keep up with the Caringbridge site. Thanks, Marge ane Gene.

Cam is feeling pretty good...rests when he needs to...eats small amounts more often rather than just 3 square meals. He is so happy to be here. He is excited because he is starting to get tiny beginnings of hair, too!!!

Tuesday, May 18, 2004 8:38 PM CDT

Day +47

We drove down to Philadelphia again for another clinic visit. It is our last visit there until next year!!! We will come back yearly for an annual battery of tests and check-up with the transplant team. It was kind of sad but exciting at the same time. His blood counts are excellent, WBC 4.0, platelets over 200 and ANC 2320. There are no problems so next week he will have his blood drawn up here in New Jersey so we don't have to drive so far. The results will be faxed to CHOP. Follow-up will be in Albuquerque after that. It's another big milestone in this whole process.

Cam was very tired today. The doctor said it is perfectly normal to have a day like that now and then after all that his body has been through.

We are going up to Schroon Lake, NY tomorrow to visit Ed's parents for a few days. It is about a 4 hour drive. We are spending a lot of time on the road! It's a good thing Cam and I enjoy each other's company cuz we have had a LOT of togetherness!!! I value this special time I have spent with him.

We have thankful hearts again tonight.

Monday, May 17, 2004 5:06 PM CDT

Day +46

Well, I see it has been a few days since updating the web page. We have been busy. We spent a few days in Connecticut visiting friends and just hanging out. On Sunday, we visited our old church and had so much fun seeing everyone. Cam isn't allowed to be in crowds but Pastor Brad wanted him to say Hi to the congregation so Cam and I sat to the side of the platform. Pastor Brad called Cam up to the pulpit and the congregation gave him a standing ovation. It was very touching. They were so happy to see he is doing well and that God has heard and answered many prayers.

I'll write more later. Aunt Elinor just called me for dinner. She made a nice turkey breast with all the trimmings. Better not keep her waiting.

Thursday, May 13, 2004 7:25 AM CDT

Day +42

We had a quiet day yesterday. No appointments and no place we had to go so we just stayed here. We took the time to finally update the pictures on the web. I love the collage Cameron put together. A few more are in the photo album part so go there. We have a couple more that didn't fit so Cam is going to work on that today.

We had a tremendous thunderstorm during the middle of the day. The power even went out for about 30 minutes. That is a strange thing when you are not in your own home. We found some candles and matches and played a game by the kitchen table. Cameron looked at it as an adventure.

I hear that Derek is doing a great job at home. Ed said he is doing a great job with Chad after school, has been cleaning, keeping up with the laundry and even doing some cooking. What a good guy!

Tuesday, May 11, 2004 4:10 PM CDT

Day +40

We drove 2 1/2 hours down to Philadelphia this morning for the clinic appointment. The doctor says he looks "great" and is in a really good place. His meds were adjusted a little, his blood counts are looking good and he was reminded to continue to be vigilant about staying away from crowds and to use LOTS of sunscreen when outside. We were told to keep watching for graft vs host disease because it could show up at any time as a rash on his face, hands or feet, mostly. They had not received the results of the bone marrow from last week checking for Chad's marrow.

The appointment took only 30 minutes total. We had planned to stay in Philly to sleep at the Ronald McDonald house but felt good so we just drove back up here to Ringwood, NJ. Along the way, we spotted a Hummer dealership so we stopped and looked around at all the Hummers. Cam enjoyed sitting in the one on the showroom floor.

We are tired of all the driving today. It is quite warm and humid. At least we are back and can relax for the rest of the evening.

I'm starting to really look forward to going home. I really miss Ed, Chad and Derek. Cameron does, too.

Sunday, May 9, 2004 7:44 AM CDT

Day +38

HAPPY MOTHER'S DAY to all you mothers. My husband and sons have made me feel very special today. I am soooo blessed to have such a great family. You are all so special in your individual, unique ways.

Yesterday, Rick and Cindy helped us move out of the Ronald McDonald House up to Arnold and Elinor's house. After they drove us up here, they took the opportunity to do a little sight-seeing in Manhattan. Cindy had never been there so it was a great chance to take in a few sights. They even handled the NYC traffic alright. They are flying back to Fayetteville, AR this morning from Philly.

Arnold and Elinor and their son, Matt left to go on a cruise this morning. Cam and I drove them down to Neward Airport. Now we have their big house to ourselves for the week.

Cameron continues to feel so good. His stamina increases a little each day. His appetite is almost back to normal although he can only eat small portions at a time, still.
Amazing, huh? It continues to amaze me.

Enjoy your day. I wish Cameron and I could go to church this morning. We miss the worship services and the preaching of God's Word. We miss the fellowship with other Christian believers as well. It has always been such an important part of our lives. We look forward to the day when we can all go to church together, again.

Friday, May 7, 2004 4:04 PM CDT

Day +36

I can hardly believe it is only 36 days since the transplant. It seems like longer than that since Cameron has made such good, steady progress.

We are so happy to have my brother, Rick and his wife, Cindy here from Fayetteville, AR. We showed them around town a little. We picked exactly the wrong time to do it, though....Friday afternoon rush hour. We'll see more tomorrow maybe.

We have played a few games of pool here at the PRMH and have just "caught up" on our lives.

Derek finished his first year of college and is driving to Santa Fe today. I wish we could see him but he'll be coming out here soon. He'll be a big help and good company for Ed and Chad. We moved to Santa Fe only a few weeks before he left for college so the town doesn't feel at all like home to him. His old friends are all in Connecticut.

God is continuing to bless us. We are so thankful for his presence in our lives and for answered prayer.

Thursday, May 6, 2004 7:24 PM CDT

Day +35 second entry

We have had a couple of busy days. Tuesday, my brother, Larry took us out and about. We went to Best Buy, Cam enjoyed shopping with his mask on because there were not many other people around. Then Larry took us out to eat at Steak and Ale in Clark, NJ. He is a district manager of 22 Steak and Ale stores in Florida. They seated us in a private dining room to accommodate Cam. Then we stopped at a Harley Davidson shop in Camden,NJ. Larry is a big Harley fan and Cam loves to look at them, too. Thanks, Larry, for spending some valuable time with us

Cameron enjoyed the day but was understandably tired.

Wednesday, we went to Arnold and Elinor's house. It is a 2 1/2 hour drive in northern New Jersey. We packed up a bunch of our stuff and brought it up there. We came back today. Since Cameron is looking and acting so good, I tend to forget that he has a long ways to go before his stamina builds back up to normal. Thanks, Arnold and Elinor!

My brother, Rick and his wife Cindy flew into town tonight. We are looking forward to spending the next few days with them. We are so blessed to have such a wonderful bunch of people in our family!!!

Thursday, May 6, 2004 3:33 PM CDT

Day +35 (I think)

Sorry I haven't written in a few days. Just a quick note to say Cam is doing great. We have really been busy. I'm in a hurry now so I can't write much. I'll write more later today or tomorrow morning.

We love and appreciate all of our friends and family.

Monday, May 3, 2004 2:05 PM CDT

Day +32

Cameron had his broviac central line removed today and had a bone marrow aspirate. Both were done under general anesthesia. He did well but is understandably tired and a little sore. The bone marrow is done routinely at this point after transplant. They will look at the marrow to determine if, as expected, 97% or more of the marrow is from Chad's transplanted marrow. That's what they are expecting.

His counts continue to look great.

We had such a nice day yesterday. He maybe did a little too much because he was pretty tired last night. Today is a quieter day after the procedure this morning. On the way back to the PRMH, he said he felt like having a chicken fajita....so Uncle Larry and Uncle Dave saw to it that he got one! He chowed down on that.

David just left for the airport to go back to Tulsa. Larry will be here for two more days. Thanks, David, for lots of laughs.

Sunday, May 2, 2004 9:55 AM CDT

Day +31

It is hard to believe this kid has just come through such a physical battle. He is doing so well. His stamina has improved a little each day and his appetite is coming along as well.

Yesterday, we spent a lot of time outside on a beautiful spring day here in Philly. Uncle David was here again. We went for a wonderful drive down by the river and the boat houses, watched the scully and crew teams practicing, watched some exercise buffs running up the "Rocky" stairs of the Philly Art Museum. The only regret is that being out and about gives Cameron the feeling of being deprived of normalcy. He isn't allowed to be around people for 3-9 months!!! We have to be observers from a distance for now.

I just got a call from my brother, Larry. He has arrived in town this morning so David is bringing him to the house.
Cam is so excited to see him, too. The visits from family have meant soooo much to him. He truly feels special that they have taken time away from their busy schedules and families to be supportive to us. I am amazed and thankful for their generous support as well.

Friday, April 30, 2004 7:23 PM CDT

Day +29

Cameron had a good day with fair energy and a little improvement eating.

We picked up my brother, David, from the airport. He is from Tulsa, OK and will be here for a few days to keep us company. We have laughed a lot since he got here. I went ahead and rented a car so we can get out and around.

"No news is good news" applies here. Adios amigos.

Thursday, April 29, 2004 6:45 PM CDT

Day +28
All is well here in Philly for us. Cameron had a visit to the clinic today. All of his labs look good. He, however, has lost 10 pounds so he needs to continue to focus on eating and drinking. We both had a little more energy today.

He spent an hour with the teacher while we were over there. We were a little nervous. The whole idea of keeping Cameron isolated, out of groups any larger than a couple of people, has been stressed. Then there we were at the hospital with tons of people all around us. He wore a mask, of course, but we felt he was very vulnerable.

Thanks, again, for checking in on Cameron.

Thursday, April 29, 2004 6:45 PM CDT

Wednesday, April 28, 2004 7:05 PM CDT

Day +27
A nice, slow, quiet day. Honestly, Cameron and I are both totally exhausted. Although it is Cameron who has been at battle for the last month, I, too, am feeling it. I think now that he is out of the hospital, I feel I can let down a little and now my body wants to crash! We spent some time walking around outside. It was a little cool, but it felt soooooo good to just take in the fresh air and sunshine together.

He ate a few different things today and they tasted good. He eats small amounts at a time, but he's doing great!!!
I can see that he has lost quite a bit of weight.
We go to the clinic tomorrow. So we'll see what he weighs and get his current blood counts.

Thanks to Uncle Larry's friend, Skip, for letting us borrow his car for several weeks. He had to pick it up today so we got to meet him. Now I'll have to think about if I need to rent a car or try to do without one. I think we will rent one since it is so good to get out and see the area.

Cameron posed for a photographer today who is doing an exhibit to honor the 30th anniversary, I think, of the PRMH. He looked so handsome in his Yankees hat sitting there smiling.

Off to watch American Idol.

Tuesday, April 27, 2004 9:27 PM CDT

Day +26

We truly enjoyed our first full day out. We took a nice drive over to New Jersey. We played games with Kenton and Teresa and did some school work. Tonight we had to take Kenton and Teresa down to the hotel because they are leaving in the morning. We had a wonderful visit with them. They had a chance to do some sightseeing this afternoon. They went to Independence Hall and the Liberty Bell and that whole historic area in central Philly. They enjoyed it and took lots of pictures.

Cam has a long way to go to get his stamina back. But he is doing GREAT otherwise. He says "hi" to everyone and "hallelujah, we're out!"

Tomorrow is another day to look forward to and another day of healing for this terrific kid. Praise God for each day of health.

Monday, April 26, 2004 4:12 PM CDT

Day 25 2nd entry

We got moved from CHOP to RMH. It feels so good to be here. It was quite a job but with Kenton and Teresa's help, we did it. I will admit to feeling just a little insecure after having nurses and doctors available at all times if any questions came up. They are still available by phone if needed, though. We don't have to return to the clinic until Thursday! Three days on our own.

Cameron is quite tired out. He'll be hitting the sack early tonight, I think. We have to take it slow and easy for the first week or so and gradually increase our activity.

Monday, April 26, 2004 10:22 AM CDT

Day +25 and we are out of here

It's official. The doctor just came by and said we are being discharged! Cameron is really excited. :)

Cameron was able to drink 24 ounces of Dasani water yesterday and nibbled on some dry cereal so he is able to leave today. We will be going to the Ronald McDonald house for a week or two so we can return to the clinic as needed. We will stay in the area for a couple of weeks after that before heading home to Santa Fe.

I'm glad that Kenton and Teresa are here to help us move because we have accumulated quite a bit of stuff in the 34 days that we have been here to add to the things we brought with us.

Gotta go pack as soon as his school session is over.

Sunday, April 25, 2004 6:31 PM CDT

Day +24

It was a sort of breakthrough day. Cameron drank almost 2 bottles of Dasani water! Yesterday, he had to be coaxed to take a few sips. And he didn't throw up at all. He even ate a few bites of cereal and a bite of banana. YIPPEE!!!

His counts are wonderful.For those of you who like to follow them, they look like this
ANC 1360 -awesome
WBC 2.3 -pretty good
Hgb - 10.6 looking good
Plt - 65 - not too bad

Rachel left and went home to Springfield, MO on her 20th birthday. It was great to have her. My brother, Kenton and his wife, Teresa, (also from Springfield, MO) arrived in Philly kinda late last night so they came to the hospital this morning and spent the day here. They are game players so we played several games of "Sequence".
Kenton and Cam played PS2 baseball.

That's the good report for today. Thanks, again, for your prayers and continued support. We love you.

Saturday, April 24, 2004 9:14 AM CDT

Day +23

Well, not much to report....same as it has been. Counts are good and getting better all the time. ANC yesterday went from 429 to 1200!!! WBC went from 1.7 to 2.4!! He's still not even trying to eat.....the thought continues to be repulsive to him..... and barely sipping any liquids. He only does that with a great deal of coaxing on my part. He KNOWS what he needs to do, just CAN'T do it. Our release from here depends on it so the sooner he can drink, the better.

The doctors have reassured me that this is normal. The stomach is the last thing to come around and "it will get better, I promise".

The nurse practitioner told me another astonishing thing. Of all the transplants they have done here for several years, there are only 2-3 who have gone through the process without needing red blood transfusions. Cameron is one of them! He got a good boose of red cells from Chad when he got the marrow. That's all he has needed. Amazing and Thank God!

We specifically prayed for no mouth sores although we were told he WOULD have them....he had almost none. The sores were in his esophagus, not his mouth. We prayed for no fevers although we were told he WOULD definitely have them....he has had none. We prayed for quick cell regeneration and that has happened in remarkable time. God has been faithful and will continue to be as we continue to trust him. Now we have to focus more of our prayers on his drinking and stomach healing.

Ed could use a few prayers today. He has to run 18 miles in his training for the marathon! Yikes! I hope he doesn't push himself too hard.

The Penn Relays, a world class track event, are taking place here in Philadelphia. Franklin Field is right across the street from CHOP so there are thousands of people around here. The traffic is much worse than usual but there is an air of excitement with so many young athletes around.

Thanks for checking in on us. Have a beautiful day.

Friday, April 23, 2004 9:08 AM CDT

Day +22

Ooops. I missed doing an update yesterday. Cameron felt about the same yesterday as the day before. His counts continue to inch up. He looks good. The little bit of hair that was growing, has fallen out again from the most recent chemo. It will be months before he gets more. The physical therapist evaluated him and said he has maintained good strength and will not need outpatient therapy.

It was a busy day. Cameron did an interview for the "Children's Miracle Network" radiothon that will be aired in the Fall. Then he was a part of a videotaping for an in the hospital production. He did a skit on how many beanie babies they could fit in the hummer he got a few days ago. He was able to fit 23 in it!

I went to the airport to pick up my niece, Rachel. She came from Springfield, Mo to spend a few days with us. She's a nursing student so she might learn a few things around here to help her in the future. Some of the moms of patients were given a complimentary massage today by a professional therapist. It was great.

He still isn't eating but has been taking a few sips. He's taking most of his medicines by mouth now. They are discontinuing all of his IV nutrition so he will have to start eating and drinking. Since he isn't drinking enough yet, we will be staying here over the weekend and likely be discharged to the Ronald McDonald house on Monday. I feel good about that decision to keep him here over the weekend.

Overall, he's doing great. What a trooper and wonderful kid. (If I may say so myself :))

I'll write more later.

Wednesday, April 21, 2004 1:51 PM CDT

Day +20

Another day of gradual improvement. Cam threw up less although when he did it was still extremely painful. He had a busy morning with school and music. THANKS so much to John and Michelle, our neighbors from Santa Fe, for sending the big remote control Hummer!! He has so much fun driving it around the room and even out in the hallway. It has drawn a lot of attention from the hospital staff and some of the kids who are allowed out of their rooms, too.

His counts today look like this ANC 476!! nice jump from 240
WBC 1.7 another nice jump from 1.2
Hgb 9.9 about the same
Ptl 54 about the same
50 cells counted

Dr. Bunin is still talking about discharge for Friday or Monday. Yesterday I couldn't imagine leaving by then. Today, it seems a little more possible.

Yesterday, Dan and Evelyn Astuto came to visit. It was so nice to see them again. Evelyn is my sister-in-law, Joanne's, sister.

I'm writing from the room today and Cam said to say "Hi" to everyone. And he says "thanks to all of you for writing and praying for me".

Tuesday, April 20, 2004 3:05 PM CDT

Day +19

This has been a good day, Thank God. Cameron has been sitting up more and feeling better. He had two big break throughs. He ate a freeze pop...the whole thing. It came back up 15 minutes later but at least he ate it. Then he walked down the hall and back to the room. This is the first time he has been out of his room in a few weeks.

His white cell counts are still rising! ANC 240
WBC 1.2 up from .9 yesterday
Hgb 10.0
Platelets 58 (that's 58,000)
Cells counted 100

If you are interested in the normal range for these blood tests they are:
ANC anything over 1500-2000 is considered pretty good
White blood cell count - 4.1 - 10.9
Hemoglobin - children - 11.0 - 13.0
Platelets - 150,000 - 400,000 (anything below 50,000 can result in spontaneous bleeding)

Mom and Dad will be leaving early in the morning so tonight will be the last we see of them during this visit. It has been great to have them here. We'll sure miss them. I'm glad they got to see Cameron having a better day today before they have to go.

Thank you, Sue, for the wonderful puzzle. Thanks to the DeLongs for the Calvin and Hobbs books, too. We have been having fun reading through those.

My heart feels lighter today after Cam has had a better day. I have to admit, I was shedding tears on my pillow last night after a rough day yesterday. It is rough seeing him struggling. Thanks for your continued prayer and support. Don't stop yet, we still need it. THANKS!!!

Monday, April 19, 2004 1:46 PM CDT

Day +18

We have really good numbers today. Cam's new cells counted reached the big target of 100 new cells! His ANC jumped from 175 to 261. WBC jumped up .2 from 0.7 to .09. Hbg actually went up which means he is beginning to produce new red cells. Platelets dropped but that is not surprising. They are the slowest to rebound. Today they are at 59.

The thing that is discouraging is that although the numbers are good, Cameron is feeling about the same. He is still throwing up a lot although there is no blood, just mucous. He is still sleeping a lot, too. We hear and know that he is doing so good but don't actually see it.

Dr. Bunin wants to see progress in drinking and getting up. He has to start taking some of his medications by mouth rather than by IV which is another step toward discharge. It sounds easy but believe me, it isn't easy for him with his stomach problems.

Ed and Chad had a good weekend together. They enjoy hanging out together. Whenever I talk to Chad on the phone, he sounds happy and vocalizes a lot to me. I really miss that big guy and his incessant hugs. You can remind me of that in a couple of months after we are home when I am needing a break :)

It is a beautiful day here, nearly 85. I went out by myself and drove around over in NJ. It was nice to get out a little, again.

We continue to keep trusting God to continue the work he has begun in Cameron's body.

Sunday, April 18, 2004 4:15 PM CDT

Day +17

More of the same. There, again was a slight increase in white blood cells and in the ANC. Both Hgb and platelets dropped a little. Cam's mouth and throat no longer hurt and the pain medicine has been decreased but he still has pain in his stomach. Since they have decreased his IV nutrition, I think some of it is caused by hunger. Still he refuses to even discuss food but has tried to drink a sip or two of water.

He still doesn't have much strength and doesn't want to get up and walk around. I will continue to try to work on this.
Still no fevers or other complications. No signs of Graft vs Host disease yet, either.

It has been another slow, lazy Sunday. It was nice outside, nearly 80 so I went out for a little walk and got some fresh air. Mom and Dad walked outside, too, and went to a Chinese Food restaurant in the area.

Continue to pray for a better day tomorrow. He's got to start drinking and getting up more.

I removed the picture from this front page intending to replace it with a new one. So far, I haven't gotten the new one to work on it. I'll keep trying.

Saturday, April 17, 2004 4:16 PM CDT

Day +16

It has been a day very much like yesterday. Cameron's stomach still is giving him big problems. He throws up frequently and it hurts but there is less blood in it.

His counts are still 50 new cells counted, WBC .06, Hgb, 9.9
Plt - 70 and ANC 168.

Dad and I got out a little while Mom stayed with Cam. Overall it has been a quiet day. Cam slept most of the afternoon after getting some benadryl to help him not throw up so much.

Looking for a better day really soon.

Friday, April 16, 2004 4:18 PM CDT

Day +15

We have 50 new cells today! His WBC is 0.5 and his ANC is 130. Those are all good numbers and moving up. His Hgb is 10.2 and platelets, 40. He got a transfusion of platelets this afternoon because he is still bleeding in his esophagus. The blood goes into his stomach and makes him throw up. The platelets help to clot the area in his esophagus and helps the stomach problem. Soon he will be healing all those areas without extra help from platelets.

He was pretty busy this morning again but was tired out this afternoon. He still doesn't move around much because the movement makes him throw up. His activities have been limited mostly to his bed.

Guess what? They started discharge planning today!!! The nurse practitioner talked to us at length about what to expect at discharge....medicines, precautions in crowds, nutrition, Graft vs Host Disease and LOTS more information. Dad was pretty overwhelmed by all the information. Dr. Bunin said Cam could be discharged as early as late next week!!! We would need to stay in the Philly area for 4-5 weeks after that and go to the clinic frequently. We are simply amazed and so thankful to God for hearing all of our prayers and making things go as well as they have. Don't get me wrong. It hasn't been easy by any means, but it could be and usually is a lot rougher than Cameron has had it up to this point. The doctor is quick to remind me that complications can still arise after discharge, especially the first three months, but we are praying for that to not happen, too.

Sorry this journal entry has been so long. There just was a lot to write about.

We enjoy hearing from all of you so write back to us. :)

Thursday, April 15, 2004 2:53 PM CDT

Day +14

New cells are growing! He has 25 new cells counted and an ANC of 114. WBC is .03, hemoglobin and platelets are holding their own, too. Doctor Bunin is very pleased with the progress. He, however, doesn't seem too excited because he has been SOOOOO tired today. He also has nearly lost his voice so is not talking much. He not having much pain but still gets repulsed at the thought of eating, even smelling food.

Dr. Bunin told him they are gradually weaning him off of the IV nutrition and will be weaning off the pain medications. She wants him to be sitting up in the chair more and more. Today was not a good day for that since he has been so tired. We'll try to work on it tomorrow.

I slept good at the RMH last night and feel good and refreshed today. It is even finally a sunny, beautiful day here in Philly.

I am continually amazed at the amount of support and prayer we get from you all. THANKS AGAIN.

Wednesday, April 14, 2004 5:04 PM CDT

Day +13

The doctor reported that there were a few more new cells, 10 to be exact. The ANC was 20, HBG 10.8 and platelets, 60.

These are all good numbers and indicate that the engraftment is taking place. By Friday or Saturday, the white counts are expected to take a giant leap up. That will be the big day. He has been feeling pretty good with the few exceptions when he has to vomit....still mucous and blood.

Cam kept busy with school, mostly working on algebra and then he had music and physical therapies. I think music therapy is his favorite.

Aunt Elinor came from New Jersey to spend some time with Cameron and to give Mom, Dad and me a chance to go out for a nice meal together. She will also be spending the night here at the hospital and I'll go get a good night's sleep on a real bed at the Ronald McDonald house. I went and got a root canal today so the day has been anything but boring for me.

Thankfully, it has been another good day all around.

Tuesday, April 13, 2004 12:16 AM CDT

Day +12

Engraftment is beginning to show itself. The new cells counted today was 5 and the white blood count was up to .02. That's a baby step but we'll take it. His HGB is still 10.2 and platelets are 67. Because he is still vomiting a lot of blood, he had to get another platelet transfusion again this morning. He is looking good with a slight fuzz of blond hair beginning to grow on his bald head.

Grandma, Papa and I are working on a jigsaw puzzle, thanks to Barb T. and Stephanie, the social worker who found a perfect board for us to use for the puzzle. The room is really crowded!

Cameron wants to show me how to play the new PS2 baseball game his Uncle Roy and Aunt Lori sent to him. I'll give it a try. Puzzles are more my speed, though.

Thanks, Charles, for taking care of Chad after school. It sounds like he is doing really well. Thanks, too, to Pinon
Elementary School people who are providing meals for my guys once in a while. I'm glad they are eating some good food rather than eating out all the time.

Monday, April 12, 2004 3:17 PM CDT

Day 11

We still do not have much to report. His counts are pretty much the same and he is feeling and acting pretty much the same. The doctors, who had not seen Cam since Friday, said they thought he looked better. Dr. Bunin said she can just feel those cells coming. They'll be here soon.

Mom and I went out shopping at Cherry Hill Mall. We didn't buy much, just enjoyed looking around and getting out of the hospital.

Sorry I can't write anything more exciting but that's just the way it is. We are excited that there continue to be no fevers, no infections, no complications!!!!!! Praise God for that!

Sunday, April 11, 2004 2:05 PM CDT

Day +10
Happy Easter. It doesn't feel like a holiday to us since the day was just like all the others around here. Cameron has had more of the same and has been very tired today. There is no good new, and no bad news....waiting and waiting....boring and boring. I remind myself that the doctors always say they want boring. It is a rainy, miserable day here so it is not inviting to go anywhere, either.

I am going to try to put some new pictures on the web soon so be watching for them.

The counts are almost identical to yesterday.
WBC 0.1
HBG 11.2
PLT 70 this is after another transfusion last night
ANC 0
New cell count 0 This can fluctuate from 0-20 or so for a while. When the new cell count reaches about 100, then we will see the WBC and ANC jump and we'll be in business. But any new cells are indicators that Chad's marrow is starting to engraft. Isn't the whole thing simply amazing?

Chad and Dad seem to be doing well. Ed has lots to catch up on after being away from home and work for almost 3 weeks.

Mom and Dad brought me a beautiful Easter Lily. No live plants are allowed in Cameron's room, so it is in the reception area for others to enjoy, too.

Saturday, April 10, 2004 5:22 PM CDT

Day +9

The hours keep clicking away. Not much change....just more waiting and waiting. Today, Cameron was throwing up quite a bit of blood so he is getting platelets now. The platelets will stop some of the bleeding in his GI tract. It is the blood that drips into his stomach that makes him throw up. Hopefully, these platelets will turn that around. The premedication makes him go right to sleep.

Dad and I ventured out and explored some of Philly. We went south toward the airport to get a feel for that area. He took me out for some real food at Ruby Tuesdays. Otherwise I have been eating only the hospital food. It was a nice break to get out. Mom and Cam just hung out together. When we came back to the hospital the thought crossed my mind as we pulled into the hospital parking garage "home sweet home". Now ISN'T THAT PATHETIC that a hospital feels like home? Oh well, it's only temporary.

Cam's counts are as follows today for those of you who are following these with us
WBC 0.1
HGB 11.5
PTS 80
ANC 50
AND they counted "10 new cells!"

HAPPY EASTER to all of you. I hope the weather cooperates for you wherever you are to wear your new Spring clothes to church as we celebrate the Risen King.

Friday, April 9, 2004 4:08 PM CDT

Day +8

I just wrote a whole page and then hit a wrong button and lost the whole thing. I'll try again. The good news is that things are boring. Dr. Bunin said we want boring and that's what we have. It is just a waiting game for the marrow to infuse.

He has been tired today and napped frequently. He has the throat sores and thick, yucky mucous. But overall, he's doing very well.

He was a little down today. I think he is getting tired of being confined to the room and just getting tired of the whole thing. I can't blame him, he has every right to get a little down. He still doesn't complain, though. What a pleasant patient to be around. After music therapy this afternoon, he perked up some. Grandma, papa watched the movie "Cheaper by the Dozen" with us. We got some good laughs from that.

Although we can lose track of the outside world somewhat, we have been aware of the fact that the Yankees won their home opener yesterday! but seriously, we have not forgotten the significance of this day.....Good Friday. We are so thankful for what Jesus did for us all those years ago.

Thursday, April 8, 2004 11:54 AM CDT

Day +7
More of the same, basically. Still the painful sores in his mouth, throat and esophagus. He throws up blood and mucous from the lining of the esophagus. Gross, huh? I can tell from watching him that it feels even worse than it sounds. His pain medication continues to give him relief. The nurses are amazed at how well he is doing. He had school and played darts (they are magnetic so we are not putting holes in the walls) and other games with the Child Life specialist this morning. He was busy from 9-12. It helps time go by.

His counts continue to be ok. For those of you who want the specifics ANC 75 (up from 0 for the last 7 days)
WBC 0.1 these are the white blood cells
HGB 12.0 the red cells or hemoglobin
PTL 35.0 platelets, he'll get a transfusion of platelets today or tonight

I have been having some dental issues for months now and have ignored them because I just didn't have time to go to the dentist. The one tooth is really hurting and since my mom and dad are here, I took advantage of the opportunity and called a dentist. They are getting me in this afternoon. I'll be relieved to get this one tooth fixed anyway. The nurse practitioner will be glad. She has been getting on my case about taking care of this since I mentioned it to her a few days ago.

Mom and dad are trying to find their way around the big city. By the time they leave here, they will know these streets well.

We are amazed at how God's presence and your prayers continues to sustain us and especially keeps Cameron's spirits uplifted.

Wednesday, April 7, 2004 12:47 AM CDT

Day +6
Cam is about the same as he was yesterday. He continues to have tremendous pain in his throat when he swallows or throws up. They have given him a suction to help him clear out some of the excess mucous that accumulates in his throat and mouth and increased his pain medication. Dr. Bunin decided to discontinue the Dilantin. We were happy about that because it is one less medicine he has to take by mouth. He is doing well.

He was a busy guy this morning. He had school for an hour, then music therapy for an hour and right after that physical therapy came. I'm so glad he was feeling up to doing all of that. Right now he is playing Mario Cart on Nintendo 64.

Ed and Chad got home safely last night. Chad was tickled to be home and Ed said he was very excited to go back to school this morning. His friends and teachers seemed glad to have him back, too. It is a relief to know they are home and safe.

Mom and Dad arrived at Philadelphia International Airport about 10:00 last night. They took a taxi to the hospital to see us and then took the car to the place they are staying. A friend of Larry's has loaned us a car to use while we are out here. It is incredibly generous of him to do that. It helps us get around without having to rent a car. Mom and Dad are staying at a Host for Hospitals house. A family has opened their home to people just like my parents who are coming from a distance to be with kids in the hospital. It is going to work out fine for them and the cost is right....it's free!

If anyone wants to e-mail mom and dad, write to our e-mail and they will get it.

Tuesday, April 6, 2004 11:50 AM CDT

Thankfully, I don't have much to report. Cam is doing about the same as yesterday. He's having pain in his throat and mouth. It's not too bad since it is managed with pain medication. He still has a hard time taking oral meds. They make him throw up every time. I HATE that because it hurts him so much to throw up. Other than that, he is doing well. No fevers, etc. YEAH!! Dr. Bunin said she likes things to be "boring". We don't need any extra surprises to deal with.

He had an hour of school today and has physical therapy almost daily, too.

Ed and Chad spent the night at my parents' house and had breakfast with Derek before heading west for home. My mom and dad are flying into Philadelphia tonight to spend a couple of weeks here with us. It will be so good to see them. They went through this whole ordeal with my sister, Linda, when she had leukemia back in 1989. She had a bone marrow transplant in Seattle. Unfortunately, she passed away from complication after the transplant. We still miss her so much.

Cam and I have been busy making some Easter decorations for his room. It is looking a little better already.

We continue to draw our strength from the Lord. We know Cameron is in His hands and guiding us through this process.
Keep praying for us that we continue to "bored" as we wait for the marrow to engraft.

Monday, April 5, 2004 10:14 AM CDT

Day +4

Cameron is getting more sores in his throat and mouth. It really hurts him to swallow. They are starting to give him continuous pain medication to help. He had to get his first transfusion of platelets last night. When he threw up last night, there was a lot of blood so they knew he needed them.

To make a not so good day, really not so good is that we had to move to a different room. It is really amazing how much stuff we accumulate in 2 weeks. What a job. There are twins coming in for transplants...yes! both of the are getting transplants. Can you imagine that? They needed the bigger room so we are not in a much smaller room. It is pretty crowded. We will have to adjust but it is a little disappointing.

Ed and Chad slept in Ohio near the border of Ohio and Pennsylvania. They have a long trip today but are both doing well. They plan to sleep at my mom and dad's house tonight in Springfield, MO and will try to see Derek.

Thank you for interest in how Cam is doing. Please keep praying because I think the next 2 weeks will be kind of rough. Pray that the marrow will engraft quickly so he can start producing white cells. That's the only way the sores can heal. Thanks.

Sunday, April 4, 2004 12:33 AM CDT

Day +3

Another fairly good day here so far. Cameron still has nausea and occasional throwing up, he has some pain in his esophagus when he sneezes or coughs and a few small mouth sores have developed in his mouth. So far, he just wants tylenol or nothing for the pain. The medical staff want him to respond quickly to pain so they can manage it before it get too bad. He is reluctant because he doesn't want to be sleepy all the time. His platelet count and red cell count are still good enough that he won't need a transfusion yet.

Ed and Chad left last night. Ed was VERY reluctant to handle Chad at the airport and on the plane by himself so he decided to drive across the country. Those of you who know Ed won't be surprised. He loves to drive and Chad loves to ride so I guess it will be ok. However, he had to return the rental car to Providence, RI and pick up a new one to drive to NM. I had a hard time saying good bye to them. I have never been away from Chad for more than a couple of days. Now it will be possibly a couple of months! Arnold and Elinor stayed here again. Arnold stayed in the hospital with Cam. Elinor and got the room at the Ronald McDonald house cleaned up and checked out. Now my home away from home will be right here in the hospital room with Cam.

Cameron says Hi. He is busy playing Play Station 2. Oh, Dr. Joe, if you read this, he enjoyed demonstrating his straw trick with Dr. Brown. She LOVED it. He keeps us laughing.

That's about it for now. We are going into mellow mode for the rest of the day. It's a rainy, gloomy day here.

Saturday, April 3, 2004 11:23 AM CST

Day +2

Here is a message directly from Cameron.

Hello everybody,
I am feeling really good today except I haven't eaten for 15 days. I'm sooooo glad Chad did well. He wasn't down for long. The hurricane is back in action. He's out with dad and Uncle Arnold today. Keep writing. I like to hear from you. If you have some good jokes, I like to get those.

Love, Cameron

PS: duct tape rules

Back to mom's comments.
Medically, Cam is still doing well. His white blood counts are officially 0. He is VERY susceptible to anything right now. We have to be very careful. His red cells are ok because there were some red cells in the marrow he got from Chad. The platelets are dropping and he will need some soon, probably tomorrow.

Aunt Elinor spent the night at the hospital to give Ed and me a break. That worked out well.

I'll try to write more later.

Love to you all

Friday, April 2, 2004 10:19 AM CST

Day +1

Everything is going well for both Chad and Cameron this morning. Chad shows almost no signs of discomfort. Hallelujah! I can hardly believe it. I removed the thick bandages and there is even no bruising around the two sights! God's hand has been on him the entire way. He has been as eager to move around as ever. I actually was hoping for a little slow down :).

Cameron, once again, had school this morning. He's still feeling "ok". He won't say he is feeling "good" but "ok" is acceptable for now.

I will be going to the hospital later to switch places with Ed. I'll write more about the doctor's report after that.

Thanks, again, for the wonderful words of encouragement from all of you. Keep praying. We still have a long way to go before Cameron is "out of the woods".

Thursday, April 1, 2004 2:01 PM CST

DAY 0, Second edition :)

The marrow is being infused right now. Cameron is sleeping through it. He woke up long enough for a few pictures but the pre-medication, benadryl, has made him very sleepy.

Chad did great!!!! The procedure to harvest the marrow usually takes about 2 hours. It was done in 45 minutes! He woke up confused and upset but it didn't take him long to settle down after I got there. He was put in a room but he is doing so well that I think we will go back to the Ronald McDonald house to sleep tonight. He will sleep better there. The doctor said he is probably not feeling the pain in his hip bones yet because they put a lot of pain medication directly into the area. The pain will come as that wears off. Right now, he is wheeling himself around in the wheelchair in Cam's room.

The nurse practitioner said that in about 2 days, Cameron should start getting mucositis (bad sores in the mouth and esophagus). Please pray with us that they are not too bad or that he won't get them at all.

Thursday, April 1, 2004 7:49 AM CST

DAY 0!!!!!
The transplant day is here. Right now, Chad is in the operating room right now. It went pretty smooth getting him relaxed and to sleep. I went into the OR with him until he was asleep. The people are all so gentle and wonderful. He will be out at about 11:30. The marrow will be given to Cameron around 2:00. Chad will be in a room across the hall from Cam. That will be convenient.

Cam is very mellow. He says he isn't feeling good. I know that isn't true but I think he is also contemplating the day.

Wednesday, March 31, 2004 9:48 AM CST

Day -1
We are getting closer now. I'm thinking a lot, today, about how Chad is going to handle the procedure tomorrow. I am nervous but hopeful that everything will work out ok. The nurses said he will likely be on the same floor as Cameron since there are a couple of vacant rooms. That would be nice.

Cameron had a rough few hours early this morning with vomiting and diarrhea. This is to be expected but not pleasant. This morning, the school teacher had his busy doing algebraic equations and then the music therapist had a set of 4 drums that Cam was playing while he played the key-board. That is right up his alley! He enjoyed that and said he would like to do that with kids in the hospital when he gets older as a hobby or something.

The nurse practitioner, Anne, said that although his blood counts are not showing it yet, that his bone marrow is pretty empty. It can't be producing any new blood after all the treatment he has gotten. That's what they want so the new marrow can go in there and start reproducing soon. Cam, therefore, will be needing red blood and platelet transfusions soon. Things are going well, right on schedule. Thank God.

Thanks to all of you who have written. we are so encouraged by your support!!!!!!! It means so much.

Tuesday, March 30, 2004 2:13 PM CST

Day -2
Cameron got his last dose of chemo today! The cytoxin is still making him throw up a lot and he is tired. He is sleeping now which is the best thing for him. Dr. Val Brown is pleased with how he is doing. She says he is responding just like he should be at this point. There are no surprises. His blood counts are about the same as yesterday. He did some more school work this a.m.

Ed took Chad out for a ride to give me some time with Cameron. Chad has been happy and good today. I believe that last night he was fussy and agitated because earlier in the evening he saw Cameron get sick and was feeling really bad for him. He finally settled down after I tickled him, played hide and seek and made a fool of myself dancing to crazy music on the radio. Sometimes a mom will do just about anything to make her kids happy. He's been great today.

I met a lady at the McDonald house whose son just had surgery. They are from Albuquerque, she is a speech pathologist, works 4 days a week in an elementary public school, and her husband is from Springfield, MO where my parents are from. Her husband's dad is even a preacher like my dad. I just found the commonalities unbelievable.

That's it for now.

Monday, March 29, 2004 7:07 PM CST

This will be a quick update. I have Chad sitting here with me in the "cyberspace" room at the Ronald McDonald house. He is not very happy to be here so he's continually trying to escape.

Cameron has had a difficult day with lots of vomiting. Because the vomiting is so frequequent and hard, at least every 90 minutes, he is getting sore in his stomach, back, throat and face muscles. Poor guy. Still, he isn't complaining much. He spent about an hour with the school teacher. They are building a kite of string, straws and tissue paper. That's right up his alley. He's doing some algebra in math. The Child Life specialist came and played games with him for a while, too. Ed and I had to go get some food and stuff, so we left Cam alone for about 2 hours. He wasn't happy about it but just rested and made the best of it. Ed is back with him tonight.

Now that the thiotepa is finished, he doesn't have to shower frequently, but he now is on cytoxin. This one can damage his kidneys so he is forced to urinate every 2 hours. Tomorrow will be his last dose of that. Then, guess, what! No More CHemo!!

His counts are going down steadily but have not hit bottom yet.

Gotta run, Chad has HAD ENOUGH of CYBER SPACE!!! Off to watch the Disney Channel. Bed won't be far off.

Sunday, March 28, 2004 5:20 PM CST

Day -4
Thank God it has been another relatively good day. Cameron has had some vomiting, but not too bad. He has taken his frequent showers.

Best of all, we had some visitors. Ed's brother, Stanley, from Long Island came and Ed's other brother, Arnold and his wife, Elinor came from northern New Jersey. Stanley took Elinor and me out for lunch while Arnold kept Cam company. It was a beautiful day so it did me a lot of good to get out in the fresh air. I only wish I could have brought Cam out there with me. He's not complaining, though.

Ed and Chad are on their way back down here. Ed will stay with Cameron tonight and Chad and I will be staying at the Ronald McDonald house, again.
God bless each of you. Keep praying. It is sustaining us.

Saturday, March 27, 2004 4:01 PM CST

Day -5

Good news! The cultures taken from the central line came back negative so Cameron doesn't have to have any more iv antibiotics at this time. Thank you, Lord for answered prayer.
Cameron started the thiotepa. This chemo drug is excreted through the pores of the skin so he has to take showers every six hours for 3 days to keep his skin from burning and blistering. Yuk!!

He is not eating at all. He can't start iv nutrition until after the transplant. I'm not sure why. Anyway, he is hungry and nauseated at the same time. The nausea wins that battle. He's felt good all day. We watched a James Bond movie and he beat me twice in chess. That's not my game so I am not a good challenge for him. Dad will do better, I'm sure.

Since Cam isn't eating, the nurses told me to order from the patient menu what I want instead of having to buy food for every meal. So far the food has been pretty good.... certainly not home cooking but not bad. The only thing I don't like is that they do not allow anyone but the patient to eat in the room so I have to stand out in the hallway and eat. It's not the best way to eat but I'll handle it.

"The Lord is my rock, my fortress, and my deliverer." Psalm 18:2

Friday, March 26, 2004 5:08 PM CST

Day -6

Not much to report today. Cameron felt good today and finished the last two radiation treatments. We have been playing games, (we learned a new one called Sequence) watching movies, and doing physical therapy exercises. The only concern is that there is a little indication of an infections beginning around his central line. This is certainly not a good thing at this point. They have started him on an iv antibiotic to prevent it from getting any worse. A neat thing is that his day nurse today, shares our belief in prayer and in God's ability to heal. She asked us if she could pray for Cam that the infections would not get any worse. So we all prayed together! It was great.

We start the thiopeta tomorrow. It's a powerful chemo. Right now his blood counts are still holding pretty steady. Ed and Chad are enjoying being at Ed's parent' house.
That's it for now. See you tomorrow!

Thursday, March 25, 2004 5:41 PM CST

This is considered to be Day -7 meaning 7 days until his new "birthday" or the day of his transplant.

Wow! What a difference a day makes. After a sort of rough day yesterday, Cam has had a really good day today. He had two radiation treatments, the 3rd & 4th of 6, but he did not get sick. He even ate a very little bit. We watched a Monty Python movie and laughed a lot. He did physical therapy and had the hospital school teacher come by. For the radiation treatments, he has to be taken in a wheelchair from this hospital next door to the adult hospital. They go through an underground route. This afternoon, he decided he wanted to wheel himself in the wheelchair all the way over there. He worked up a little sweat but refused to give up. It's that kind of determination that is going to get him through all of this.

His counts are still good but will be nose-diving soon. He is being treated as "protective isolation" already.

Thanks, again, for your encouraging notes, calls and prayers. Love to all of you.

Wednesday, March 24, 2004 5:45 PM CST

Cameron had his first radiation treatment this morning. This was supposed to be the "boring" stage with few side-effects except maybe a little tired. Well, Cam threw up 7-8 times this morning. He started to feel better. Then they gave him some medicine to prevent nausea after the next radiation treatment. He had a negative reaction to the medicine and got agitated and jumpy. He was miserable. The second radiation treatment was this evening. It went well and he is sleeping soundly right now. It is 7:00 p.m. here. I feel angry at this disease right now...I just wish my little boy did not have to endure this whole thing!!!!

Ed took Chad for a ride to Arnold and Elinor's house in North New Jersey, to Mystic, CT to say hi to some friends and is now on the way to upstate New York to stay with his parents for a few days to keep Chad occupied and to spend some time with Mom and Pop. Chad gets too antsie being in the hospital too much. This break is great for both of them.

Thanks to all of you who have taken a few minutes to write on the guest book. We love reading your encouraging comments. Send us some jokes if you have any. We can use some good laughs.

Tuesday, March 23, 2004 6:15 PM CST

We thought today would be a quiet day with some time to explore the city a little bit. But it didn't turn out that way. We arrived at the clinic at 9:30 and didn't leave until 5:30. We had consultations with several doctors for Chad and Cam and did lots of necessary paperwork. Ed got to meet the Director of the Transplant Center, Dr. Nancy Bunin.

We learned that if Cameron and Chad had different blood types, (yes that is possible in spite of the tremendous bone marrow match) that an extra step would be required before the marrow would be infused into Cam and his blood type would actually change over time. Well, we learned today that they are both A !! One more miracle. Now they will bring the marrow directly to Cam as soon as it is harvested from Chad! It is such an amazing thing. It brings tears to my eyes when I think of the wonder of the whole process. Thank God for the pioneers that came up with this idea and have perfected it so much to get to this point.

The people here are so wonderful with both boys. They are patient and understanding with Chad and encourage Cam to ask lots of questions.

Tonight, Cam and Ed will stay at the hospital. I'll stay at the Ronald McDonald house with Chad. God is good and He's keeping us encouraged. Thanks for all of your prayers. We love to get your comments so keep those coming, too.

Monday, March 22, 2004 7:44 PM CST

Well we are here at CHOP. Actually, I am writing this update from the Ronald McDonald House in Philadelphia. It is a beautiful facility close to CHOP.

We had a wonderful weekend visiting many, many friends in Connecticut. Each of you that we had a chance to see really blessed us. Cameron really had fun spending time with his close friends. Chad was full of excitement almost the whole weekend getting the chance to see many of his favorite people again. One of the many highlights of the weekend was being able to go to our old church, Seaport Community Church. That place, the pastors and all the people are so special to us. They took time during the service to talk to Ed and Cameron about what is coming and to pray for all of us. Friends from Florida who had been in California on their honeymoon, even came to CT to see us for a few hours. Can you believe that? Thanks Marco and Nicky!

On our way from Mystic, CT to New Jersey, we stopped and got to see Cameron's original oncologist, Dr. Joe McNamara. He came to the office on a Sunday to visit with us for a while. It was a pleasure to see him and thoughtful of him to take that time out of his weekend to see us. He will always have a special place in our hearts, especially Cameron's. We slept at Ed's brother, Arnold's house in northern New Jersey and drove down here this morning.

Chad had to have some blood drawn today and handled it really well....Thank God. Cameron had to meet with the Radiology Oncologist....not fun but ok. Then Cameron had to have a stress test. He worked up quite a sweat on a bicycle with the heart monitor on.

We are all tired and emotional tonight. Tomorrow, Chad will be examined by Dr. Bunin and Cameron will be admitted.
We feel the love and prayers of all of you and it helps us when we feel drained like we do tonight.

More later. Love to you all!

Thursday, March 18, 2004 6:27 AM CST

We will be leaving here in less than an hour. It is hard to believe the time has come. It is hard to believe, too, that Cam and I won't be home for 2-3 months!

Cam had a great day yesterday. We spent some time with his class at school. They are so supportive of Cameron and make him feel so special. Later, his good friend came over. It was such a beautiful day that we all hung out outside and had fun. Now we look forward to seeing more friends for a couple of days.

I'll do my best to journal while we are in Ct but I'm not sure what connection I'll have with the internet.

Pray for Chad to be good and cooperative on and before the flight. He can be quite a handful in situations he is unfamiliar with!

Tuesday, March 16, 2004 8:38 AM CST

Cameron's headache and vomiting continued yesterday so I called the clinic. They wanted to see him so we drove down there. They confirmed it was a spinal headache. The vomiting can be a part of that because of the pain. They gave him some IV fluids and insisted that he drink caffeine. I went to the gift shop and got him Mountain Dew. He drank that and with the fluids, he felt considerably better.

The doctors and staff were so supportive and encouraging about the upcoming transplant. It is so hard to believe that we are leaving in 2 days. My last day of work was yesterday. It was sad and a relief at the same time. Ed is working hard to turn over his responsibilities at work for almost three weeks.

Better get packing. It's hard to know how to pack because I hear they are getting a lot of snow out in that area today and it was Spring-like yesterday.

Friday, March 12, 2004 7:40 AM CST

Nothing much to say today. Yesterday, Cameron had a pretty bad headache and pain in his back from the spinal but it was controlled with pain meds. He is having so much fun having Derek around. I love to hear them laughing together.

Today he has to take a math test at the school he will be attending next year so they can determine what math level he should be placed in. I guess it is good to focus on what will be happening after the transplant.

Ed's dad is home from the hospital and doing much better.
My nephew from Denver, Pat, was just sent over to Iraq this week. He is in the Army and has been waiting eagerly to go for a while now so he's happy to finally go. I'm sure his parents, Larry and Kathleen, feel a little less excited about it. Just another thing to pray about.

Tuesday, March 9, 2004 8:27 PM CST

Cameron had a busy day today. It started with a bone marrow aspiration and a spinal tap with 3 chemos injected into the spine. He then had to have 2 chemos IV which took 3 hours. He is not feeling well tonight....throwing up a lot. He has had many spinals in the past and never had any difficulty. Today, two doctors had a great deal of difficulty getting the needle in the right spot. It took a lot of time, he was heavily sedated, and a couple of extra punctures. They expected that he would be sore and they were right. He does not have the spinal headache they told him he might experience. That's the good news!

He had pulmonary tests yesterday and has some ct scans tomorrow so we are getting all the pre-tests covered.
We've had some long days and we are tired. I'm already looking forward to the weekend and it's only Tuesday! A day at a time is the only way to look at it, I guess.
We're going to get some good sleep tonight.

I read in the book of Job, and I'm paraphrasing, the he, or in our case we, did not chose for these things to happen to us and wish they had never happened, but in spite of that, we WILL remain steadfast and faithful to God and He will see us through.

Thursday, March 4, 2004 4:30 PM CST

We got great news! Chad's school aide got the test results back and he does NOT have mono! That's a relief. Now we just have to keep our eye on Cameron for any sign of chicken pox. I am believing that he won't get them!

I only have 4 days of work left. It is getting harder and harder for me to concentrate.

I want to tell you about a wonderful little boy. His name is Tanner. He and his family have become friends of ours since we moved to New Mexico. Tanner also has ALL and is still undergoing treatment. He goes to the same clinic as Cameron. He just had his 9th birthday. For his birthday, he requested that instead of giving him gifts, that they give money to donate to Cameron to help toward the expenses of the transplant! Can you believe that generous little guy? Incredibly, he gave Cameron $860.00 toward our expenses. Nancy and Randy, you should be VERY proud of your special son and of your beautiful daughter, Morgan, too. I continue to pray that his treatment continues to go well and that he will say good-bye to leukemia forever!!!!!

Thank God for the wonderful people He has put in our lives.

Wednesday, March 3, 2004 7:58 PM CST

The time is getting closer and closer to the date when we leave. Cameron had his dental and eye exams this week. He had a friend spend the night last Friday night. It was great, but on Monday his friend broke out in chicken pox. Cam has had it before but it would be a big concern if he got it again. We're praying that he won't!!

I got a note from Chad's school yesterday saying that his one-to-one aid has been out of school for a few days because he has not been feeling well. He went to the doctor and is being tested for MONO! That's certainly not something I wanted to hear. He will get the test results back tomorrow to let us know if he indeed has it. If he does, we'll have to watch Chad closely, too. I haven't told the doctors about this yet since we don't even know for sure what we are dealing with. Please pray that this, too, is not going to hinder our plans in any way.

I just feel like I want to put all of us in a protective cocoon!

God tells us to "Trust me in your times of trouble, I will rescue you and you will give Me glory." Psalm 50:15. That's what we are doing....trusting Him.

Thursday, February 26, 2004 5:12 PM CST

Yippee! We got a call from the clinic that Cameron's counts are back up to an acceptable range. The neulasta finally kicked in to help him. We are relieved after having a couple of days of being pretty nervous.

I can't believe that I only have 9 more days of work until we go. There is a lot to do but somehow it will all get done.

Tuesday, February 24, 2004 4:36 PM CST

We are off to the hospital. I got a call from the clinic as I was driving home from work around 3:15. They just got the lab results from yesterday. His platelet count is only 7,000. Anything under 30,000 is considered dangerous and spontaneous bleeding could occur. So we are going to get a platelet transfusion tonight. His ANC is 19 (remember that is supposed to be at least over 500, normal is around 2000)
That "miracle" shot that is supposed to help his counts recover after the last chemo hasn't done it's job yet.
Hemoglobin is holding steady and is ok. In spite of everything, he is still feeling fine. He did a lot of school work today. He's learned how to do power point presentations so he did one on an endangered species, the Sumatran Rhino for a school project. It's neat.

Monday, February 23, 2004 11:33 AM CST

As the old adage says, no news is good news. In this case it is true. Since Cameron came home from the hospital last Sunday, Feb 15, he has been feeling good. His counts were low but he had his shot so they are recovering nicely. He has had a friend here playing a few times anyway. It has been beautiful weather so we have been outside some, too. I had a bad cold that I tried desperately to not give to Cameron. But it seems that he has gotten it. Right now it is just a running nose...no fever or cough.

Plans are underway for all the pre-transplant testing. He has to have an eye exam, a dental exam, and lots of medical tests.

That's it for now. Thanks for checking in!

Tuesday, February 17, 2004 8:08 PM CST

Cameron got home from the hospital on Sunday. He was nauseated and threw up on that morning but has been doing very well since. His counts are low. He'll be getting the neulasta tomorrow. It will help his counts recover. He looks and feels great. We have had a couple of beautiful days here, nearly 60, so we have been enjoying the fresh air outside.

Cameron, Ed and I played a LONG game of RISK and of course Cameron beat us both bad. He really likes that game now!

I pray for everyone who reads this post to be blessed today in a really special way. God is good.

Juli

Sunday, February 15, 2004 12:30 AM CST

Cameron and Ed are on their way home from Albuquerque. Cam was in the hospital for 5 more days for Ara-C. That chemo has knocked his blood counts way down. He will have to be isolated for several days. Tomorrow he will be getting that expensive drug to help his counts recover. It's the one that cost $3000, ($750 co-pay...ouch). I trust it will work like it did last time.

The doctors do not think he will have to be hospitalized any more here before going to Philadelphia. However, they need to do several pre-transplant tests here before we go. He has to have a bone marrow aspiration on March 9, EKG and stress test, dental exam, eye exam and lots more I can't think of right now.

He is very nauseated right now after the chemo. He has to be able to keep fluids and his oral meds down or he will have to be re-admitted to get iv fluids and meds. One day at a time.

When I was totally exhausted last week to the point of feeling sick, the Lord gave me this scripture to meditate on. Psalm 121:1-2 "I lift up my eyes to the hills- where does my help come from? My help comes from the Lord, the Maker of heaven and earth." Thank God for His help in our time of need!!

Monday, February 9, 2004 6:37 PM CST

We got home late last night from our trip out East for the consultation for the bone marrow transplant. We met with the director of the transplant department on Thursday at 3:00 and met several other members of the team. I did not hear many things that were surprises from Dr. Bunin, but it is difficult to hear everything that we should expect in one setting. I was emotionally exhausted. I was so fortunate to have my sister-in-law, Elinor, drive us down to Philadelphia from North Jersey and home again. I didn't have to worry about that, too. Elinor is a nurse and she sat in the consult meeting with me. She helped me remember things I did not hear or recall.

Cameron met with Dr. Bunin, too and then we toured the transplant unit. It will soon be our home away from home.

Chad has to be at CHOP on March 22 for some blood tests. Cameron will be admitted the next day, Tuesday, March 23. He will begin total body irradiation (TBI) on Wed. He has
TBI for 3 days, 2 days of intense chemo and on April 1 he will be ready for the transplant.

I could write so much more but I am so tired. We got home around 1:30 a.m. and I got up and worked all day. I'm ready to crash tonight.

Cameron goes into the hospital in Albuquerque tomorrow for about 5 days.

Tuesday, February 3, 2004 6:51 PM CST

We are leaving in the morning from Albuquerque to go to Philadelphia. We will meet with the transplant team on Thursday. The weather is a little questionable. There is snow in New Mexico tonight and tomorrow. Hopefully, the plane will take off on time and there will be no delays.
I am both looking forward to this meeting and dreading it at the same time. Does that make sense to anyone?

Ed's brother, Arnold and his wife Elinor, will pick us up at Newark Airport. We're thankful that we can stay with them for the few days that we will be there! We fly back to New Mexico on Sunday.

Cameron continues to feel good....thank God!

Sunday, February 1, 2004 12:05 AM CST

We don't have much news. I do want to express my gratitude that Cameron is feeling so well right now. After the high dose chemo he received last week, it was expected that he would be sick with very low blood counts this week. But praise God, he has been feeling great and his counts have been strong. He had a friend come over to play on Friday after we stopped by his school to say hi to his friends there. On Saturday we went bowling and he rode his bike. Today, we got an inch or two of snow so he is planning on sledding after he comes home from church. Those sound like good 12 year old boy activities to me!

Ed is doing great with his training for the Leukemia and Lymphoma Society's Team in Training marathon. He ran over 6 miles yesterday....half of the run he was going up the side of the mountain. He much preferred the half when he was coming down the mountain!

I'm preparing my self mentally for the consultation on Thursday. I am trying to organize my thoughts to ask all of the questions that keep going through my mind. I'll write more after that visit.

Wednesday, January 28, 2004 5:08 PM CST

Thanks to all of you who have signed the web page.

Thanks to so many of you who have done thoughtful things this week....to Uncle Arnold and Aunt Elinor for sending the box of fun stuff, to the Vaughns for the "Cameron" hat, to the teachers at El Dorado for some good meals, to Susan for the lovely tulips, to Robin for the Harvest muffins, to Uncle David for the plane ticket he is donating, Uncle Larry and Aunt Kathy for the Rocky and Bullwinkle DVD's and to the Weems for tutoring and their good friendship. Thanks to SOOO many of you who pray for us every day and encourage us with phone calls, e-mails, etc. I sure hope I didn't forget anyone.

We are leaving a week from today to go to Philadelphia. Cam and I are going alone this time. We will meet with Dr. Bunin, the head of the transplant center, and her team on Thursday afternoon at 3:00 EST. I have so many questions in to ask them. We are staying at the Ronald McDonald House that night and then probably staying with Arnold and Elinor. We return home on Sunday. Cameron has to go into the hospital again on Tuesday for the next round of chemo.

The home health nurse comes every other day to take his CBC because the doctors expect his blood counts to drop after that last round of chemo and want to be sure he gets a transfusion of red cells or platelets if needed. We also need to know if he has a high enough white cell count to be around people or if he should stay isolated. His ANC dropped from 5000 on Friday to 1300 on Monday. Today, it will probably be a lot lower. He's still feeling great. THANK GOD for that!!! We'll take every good day we can get.

Saturday, January 24, 2004 (MST)

Many of you have commented on Cameron's dormant web page. When I read back on the last journal entry, I recall how well Cameron was doing and we were just cruising right along with the remainder of his treatment.

On April 22, 2003, Cameron was finished with treatment. We were sure that was the end of leukemia for him. His port was removed in June, 2003 and we moved to Santa Fe, NM in August.

We connected with the pediatric oncology group in Albuquerque for follow-up visits. By November, Cameron was showing some signs of being more tired than usual and was losing some of his appetite. By the first of December, I knew we had to check this out and was fearful of relapse. On Dec. 5 he was seen and the doctor suspected, by his blood counts, he was pale and lethargic, that it was relapse. It was confirmed on Dec. 9 by a bone marrow biopsy! We were devastated!!!!!!! scared and confused!!!!!!!

He was hospitalized for 11 days beginning chemo, etc. He lost all of his regular hair but kept the fine, blond, baby hair all over his scalp. It reminds me of when he was a baby.:) He was home for only 4 days when he developed a fever and was hospitalized for 8 more days. He experienced tremendous mouth sores and was in a lot of pain. It was awful!

On January 6, we were all tested to see if one of us matched Cam for the transplant. On January 8, Dr. Winter called and was so excited. He said Chad was one of the closest matches he had ever seen!!! Praise God. Somehow, Ed and I knew Chad was going to be the donor.

Cam had to go back into the hospital on Jan 15 for chemo. A week later, he was home. He is looking great and feeling pretty good.

Cameron's best friend in Santa Fe is Walker. His mother is a 5th grade teacher at Cameron's school and is home tutoring Cam. He is keeping up with his 6th grade school work very well.

We are not sure what the next step will be. Either he will go back into the hospital on Feb 5 for more chemo or we will be going to Philadelphia for a consultation visit for the transplant at Children's Hospital of Philadelphia (CHOP). I'll try to update more often so keep checking back if you want to know what's happening here.

That's it for now.
Juli

Wednesday, July 10, 2002 at 07:10 AM (CDT)

Good Morning,
We returned from our vacation to Missouri last week and it already seems like several weeks ago. We had a wonderful time celebrating my parents' 50th wedding anniversary and spending time with my family. There are 6 of us siblings and their spouses and 14 grandchildren. It was thrilling for Ed and me to see Cameron doing all the things the other kids did such as jet-skiing, jumping/diving off the cliff, playing basketball, swimming, going on roller coasters....hugh ones...etc. Most people would have no idea that he is currently in treatment for leukemia. Thank God for his strength and tolerance of the chemo drugs.

His blood counts continue to be right where they should be, ANC 1333, Hgb 13.2, platelets 255.

Hope all our friends and family are enjoying a good summer.

Juli

Wednesday, October 31, 2001 at 12:34 PM (CST)

Well, tomorrow marks the one year anniversary since we first heard a doctor say that Cameron might have leukemia. The diagnosis was confirmed two days later by Dr. Joe McNamara. What a year this has been but today I can honestly say that Cameron is doing good. Thank God. He turned 10 just two days ago, Oct. 29. He is a 4th grader doing very well academically. He is just finishing up his soccer season, is taking piano lessons, and enjoys playing with his friends, especially outside.
He has endured 6 Bone Marrow aspirations
9 Spinal Taps
7 hospitalizations
40+ finger sticks
Hair loss (but it's back!!)
Mega doses of methotrexate, purinethol (6MP), vincristine, leucovorin, alsparginese, decadron, Ara-C, 6TG, cyclo-(something), daunorubicin, etc.
Through it all, he has been a trouper. We continue to pray for God's blessing and protection on him.

Thursday, August 30, 2001 at 06:23 PM (CDT)

Cameron had a great time in camp last week. He was not so sure the first day, he wanted to come home but "toughened it out" and was glad he stayed. He had fun the rest of the week. His favorite activities were the talent show, kayaking, climbing the big walls and swinging on the rope into the lake.

Now we are back to routine as school started this past Tuesday. Cameron has starated 4th grade and Derek is in 11th! I'm back to work 2 - 3 days a week at the Waterford Country School.

This week was the boost of chemo that Cameron gets every 3 months. He had the spinal methotrexate and vincristing on Monday and will have a full week of decadron this week. He also has methotrexate, 4 doses over 24 hours today and of course the usual 6MP which he gets every night. It would be amazing if he feels "normal" with all those chemicals being pumped into him at once. So far, he is doing well, though. Praise God.

We will go see Dr. Joe tomorrow for a blood check.

Sunday, August 19, 2001 at 12:47 PM (CDT)

We just got home from dropping Cameron off at his camp, Camp Rising Sun, in the Litchfield hills of NW Connecticut. It is a camp for 5-18 year olds who have or have had cancer. It is a beautiful facility with so much fun stuff to do. Cameron was a little choked up as we left but I think he will have a great time. I don't know who will have a harder time, him or us. I will miss him so much this week. We will pick him up on Friday when they have a family picnic planned. We can watch for updates of the camp daily on www.ghymca.org. They will have updated photos each day of the activities at the camp. Hopefully, we'll see Cameron there!

Saturday, August 04, 2001 at 06:32 PM (CDT)

It has been a while since I've updated our journal. Last weekend we went up to Schroon Lake, NY to visit Far Mor and Far Far. Several of our friends went with us. They have a new four wheeler/quad. The kids and the "grown up kids" had a lot of fun with it. Cameron went canoeing with his Royal Ranger (scout) group today and had lots of fun. He continues to amaze us with how well he is managing his chemo and how his counts continue to hold steady. Praise the Lord for His help.

Derek left for Sturgis, SD today. He went with the worship band from church to play at a couple of venues during the huge motorcycle rally there. 600,000 bikers are expected to be there!! We'll miss him while he is gone for the whole week especially since Daddy is not going to be home for two more weeks.

Thursday, July 19, 2001 at 03:12 PM (CDT)

July 19, 2001
Cameron had his weekly oncology visit yesterday. His counts continue to hold at a good level. He is playing with a friend today and feeling great. He has his 4 doses of methotrexate at 6 hour intervals today. I am always afraid I will miss a dose when it comes in the middle of a busy day. Today, he went to Dan's house at 1:30 and I had to drive over there to give him his 2:00 dose. He will get it, again, at 8:00p.m. and 2:00a.m.

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