Tuesday, June 6, 2006 8:30 PM CDT

Dear family and friends,

Tomorrow will be 2 years since our beautiful daughter Ashleigh was diagnosed with Neuroblastoma and 10 weeks since she became an angel. I recently took Ryan to the Dr. for his 2 year appointment and was told he is a "healthy" boy. I thought that was the same thing I was told when I took Ashleigh in for her 2 year check up and 11 months later we are being told she has cancer with a 50hance of survival. How fragile life is!

Jeff and I muddle through each day trying to establish normalcy and yet create fun for Ryan. All the while with a painful, empty void that is with us every minute of each day. With everything we do, see, or say, there is a memory of Ashleigh or a thought about what Ashleigh would be saying or thinking. At times this brings us comfort and other times the harsh reality that our precious Monkey is not physically here with us.

Jeff is back to work and very busy. Ryan is going to daycare partime (or school as we call it). Ryan absolutely loves school and has adjusted very well. He is a very special, sweet boy that is truly our saving grace. I am slowly getting back to work, working 1-2 days a week. I've also been doing alot of writing and have written 2 children books in honor and memory of Ashleigh. Being biased, I do feel that they have potential for publication and am currently working on this process. We've also been working on Ashleigh's headstone with hopes that everything will be in place by her birthday, July 12. We have been spending alot of time at our cottage relaxing and enjoying the nice warm weather.

We would again like to thank everyone for your continued support, prayers, words of encouragement, and generous gifts and donations to Ashleigh's care fund. You are all truly a blessing.

Please keep all of Ashleigh's friends with Neuroblastoma and all the other children at Devos with cancer in your prayers.

To our Monkey,

Thank you for the smile in your voice.
Thank you for the truth on your lips.
Thank you for the peace in your touch.
Thank you for the light in your heart.
Thank you for the love in your soul.

We miss you and love you Monkey. Forever and ever. Never Forget.
Mom, Dad, and Ryan

Sunday, April 2, 2006 10:00 PM CDT

May 8th, 2006

Dear family and friends,

Tonight we received the wonderful news of the birth of Taylor Ashleigh Wolf. Born today, May 8th, at 9:15 pm, 7# 11 oz and 19 inches long. Taylor Ashleigh is Caleb's new baby sister and of all things she was born today which is Caleb's 5th birthday!! What a birthday present. We are so honored, and I know Ashleigh is probably very excited!

Jeff and I would like to thank everyone for their continued support and prayers. It means the world to us. We would also like to thank everyone that helped "Team Ashleigh" win at the Make A Wish Walk and in helping make children's wishes come true. A special thanks to my sister, whom was the top fundraiser.
We would also like to thank Brittany for the fashion show fundraiser for Ashleigh and Anna. You did an unbelievable job! Anna will be buying toys, books, etc. for the Devos Childrens heme/onc unit in memory of Ashleigh and in honor of Anna. Anna, your song that you sang in dedication to Ashleigh's parents was absolutely beautiful and something we will never forget. Thank you.

Jeff, Ryan, and I are taking each day one at a time, sometimes hour by hour. We think of Ashleigh (Monkey) every minute of the day. I talk to her often and at times physically miss her sooo much it is almost paralyzing and difficult to breath. She will always be alive in our hearts and our souls.

Please keep all of Ashleigh's princess friends with Neuroblastoma (and their families)in your prayers. We think of all of you often.

To our Monkey

All of our love...All of our lives...Until we meet again.

Forever and ever, never forget. (As Ashleigh would ALWAYS say)

We love you Ashleigh
Mom, Dad, and Ryan

---------------------------


Dear family and friends,

As our baby girl laid between us, our precious, precious monkey became the most beautiful angel at 3:13am Wednesday, March 29th. Up until her last breath, she continued to show her unbelievable spirit, bravery, and strength as she has done unwavering for the past two years. The grief, emptiness, and pain we have is absolutely unbearable. The only thing that gives us any comfort is knowing that she is no longer in pain and praying that she is running, jumping, climbing like a monkey, and dancing with the fairies. As she told us often that fairies were with her when she slept and that they were her friends.

Jeff and I do not know where to begin to express our gratitude and thankfulness for the outpouring of support, prayers, and kind words from our family, friends, and all the wonderful people that follow Ashleigh's care page.

To our medical family; the doctors, nurses, and entire staff on 7 south, clinic, PICU, and hospice...We will forever be grateful for what you did for Ashleigh and our family.

To Bannan Funeral Home- Bill and Dave- You will never know how much we appreciate what you did for us. Our daughter's true beauty was shining through.

To Rev. Sam...Thank you, thank you, thank you!

To our Family... WE LOVE YOU!!!!!!!!!!!!!!

Through reading Ashleigh's guest book entries, we are deeply touched that our daughter showed so many people the true meaning of family and life. I believe our 4 year old daughter taught people more in her short life than most people could do in a full life time. Please always remember her and the lessons she taught us about life. She was truly an angel here on earth and may God now watch over our angel in heaven.

I once read this and would like to pass the words on.

To our Monkey,
Oh how you touched our lives, loving us unconditionally. Memories and tears, giving us the unbreakable bonds of family unity, you so loving wove into our lives. The tears may be wiped away, but our love in our hearts will always stay. We will always love you and have the precious memories of the days you were here.

We Love You Monk
Mom and Dad and Ryan

Wednesday, March 29, 2006 7:15 am EST

Dear friends and family,

Ashleigh passed away this morning at 3:15 AM with her Mommy & Daddy laying next to her. I can't describe the grief we are feeling..I guess words can't describe it. She was so beautiful and peaceful laying there - no more suffering for our sweet girl. Fly with the fairies to Heaven sweet baby girl and run free. We will Love you forever & ever.

Thank you for all the kind words and prayers - it has meant so much to have all of the support.

Amy & Jeff have requested no calls or visitors at this time -they know people are thinking of them. The funeral service will be private with only immediate family. For those of you that have asked...memorial contributions can be sent to Ashleigh's Care Fund...

Ashleigh's Care Fund
National City Bank
c/o Kate Hauser
5215 Wilson Ave. SW
Wyoming, MI 49418

Or any other National City Branch Location.

Love,
Aunt Angie (Ashleigh's Aunt forever)

Monday, March 27, 2006 11:55 PM CST

Please say a prayer for Ashleigh today -she did not do good last night and is having a rough time breathing...please pray if you can.

Love,
Aunt Angie
6:30 AM Tues.
----------------------------------------
Hi everyone,

Well, things have been changing again. The weekend started out great We have a very nasty cold going around our house. Ashleigh caught the cold which is affecting the chest and head. Saturday night Ashleigh had a very rough night. She was coughing a lot. She was having a difficult time getting enough wind to cough things up. Sunday she began to have difficulty breathing. She was breathing very rapidly. We became very worried and called our Hospice nurse, Jessica.

Jessica came out and listened to Ashleigh. She said Ashleigh was still moving air well and she did not hear any pneumonia or pulminary edema. We started Ashleigh on an antibiotic to hopefully help. Sunday she sat up/layed on the couch exhausted all day. She slept some but coughed frequently. She woke up around 7 pm and watched a video and drank water. But, she was not doing well.

Ashleigh slept fairly well last night (Sunday). Her breathing was still very rapid. Today she was lethargic and continued the rapid breathing and frequent coughing. Also, her color changed a few times. Sometimes, she looked kind of gray and had pale lips. This worried us a lot. She is looking like she did prior to going to ICU after tranplant last year. We are concerned she is not getting enough oxygen.

Even though she felt terrible, she still insisted on wanting to go shopping with mom. They made a quick trip to Target and she did okay.

So, we are a little on edge tonight. No one really knows what is going on in Ashleigh's lungs right now. Obviously, we know her lungs have been comprimised by her cancer. We notice a lack of wind to the point where she can not blow her nose. So, are we heading down a bad road? How much do we do? Oxygen? Hydration? Check labs and possibly tranfuse? We don't know. How things will play out is very uncertain at this time. We will likely be talking with Hospice tomorrow and maybe have Ashleigh checked out again.

There is no script on how this will all end. Tonight is one of those nights where you don't know if she will make it through the night or not. And, you question if that is okay or not.

Remember everyone - no news here tomorrow is likely good news, right?

So, thanks for your support in our journey. I'll update soon.

Friday, March 24, 2006 9:50 PM CST

Hi everyone,

This week went fairly well. We saw Hospice Monday. Ashleigh's lungs still sound clear. We also started a new medication for pain.

Aunt Angie has been researching kids with NB on hospice care to see what other people are doing for pain control. She also talks to people online frequently. She discovered some kids are having good results by being treated with a steriod (Decadron) to help with bone pain. We started the Decadron and things improved.

Wednesday, Ashleigh wanted to get out of the house for the first time in over a month! We went to the book store and she did very well. She went to the bookstore again another day and out to the pet store to get toys for Rosie Caleb. It was so nice to see her outside of the house.

Ashleigh has also wanted to do more. She is more interested in leaving her spot on the couch. Tonight she worked hard helping mom make banana bread. She was so proud of herself. Mom and dad were also very proud of her. Ashleigh's spirits have also been improved the past few days. She was very sweet today and talked with her brother the most that we have seen in a long time. She was teaching him about dogs tonight. It was very sweet.

So, things are good now, relatively speaking. We hope for a good weekend with no major events. Ashleigh also talked about possibly going swimming again soon. Maybe we will be hitting to pool again soon.

Take care all.

Sunday, March 19, 2006 11:10 PM CST

Hi everyone,

Sorry so long since the last update.

Things have been going okay. We have had grandparents in for most of the week/weekend. Overall, things have sort of been "staus quo" with no major changes.

Today was an exciting day. Ashleigh called Caleb this morning to tell him that Rosie Caleb's brother (she was actually a sister) was still at the pet store and looking for a home. Caleb called back later to tell Ashleigh his Mom and Dad took him to the pet store and they bought Rosie Caleb's sister. Caleb came over and Rosie Caleb got to see his sister again, Rosie Ashleigh.

In the afternoon, the people from the Equest Center brought Freckles and Mickayla right to our house. Check out the picture. Yes, that is a horse in our living room! Ashleigh loved seeing her horse friends again. She told Amy tonight that it was something she would "never forget". Thank you so much to Kathy and the people at the Equest Center! It was kind of funny to see this big horse trailer parked in the cul-de-sac.

Overall, we just keep going. There are some good times and some rough times. This week we will see Hospice and we may add another med to try to help with pain.

Thanks to everyone for their support and prayers. I'll try to update sooner next time.

Take care all.

Monday, March 13, 2006 12:05 AM CST

Hi eveybody,

Well, we are back on the rollercoaster.

We were able to get a handle on Ashleigh's pain with the increased morphine dose. The weekend was not too bad. Saturday, Ashleigh actually played for the first time in a few days. Overall, Sunday was okay. Today was decent.

As long as we keep Ashleigh dosed with her pain meds and she does not move much - she is able to have content times with occasional enjoyment. Moving her for anything usually involves a lot of screaming and pain. She remains camped out in her spot on the couch, watching Rosie Caleb, watching TV/videos, and playing at times. She is still eating. Mom and Dad need to push her and often feed her. However, Cheetos at night do not need Mom or Dad's encouragement.

We keep going. Sorry, if everyone was alarmed at the last entry. I am just giving you the real story - like I always have. Sometimes I wonder if Ashleigh will make it through the night. Other times, I feel like she will be her for weeks. I guess I have no idea about how things will play out in the end.

Thanks for your support. I'll try to update again in a few days.

Friday, March 10, 2006 12:14 AM CST

Hi everyone,

Things have been changing since my last entry.

Tuesday we met with hospice. Ashleigh had to have her port accessed and flushed. It is working fine. She did very well with the experience. She's a trooper. Her lungs were very clear. Our hospice nurse admitted she and our doctor are surprised Ashleigh was doing so well and had not lost more weight. It has been 7 weeks since we were given the prognosis of 1-2 months to live.

Wednesday, Ashleigh had Caleb over. You see the picture. That went very well. She gave him the most amazing hug before he left. It almost brought tears to my eyes.

Since then, things have gone down hill. Yesterday and today have been awful. It seems like Ashleigh's pain has progressed even more. She has been in agony. We called hopice today and our doctor told us to up the morphine again. We are also giving her the meds more frequently - every 2 hours. Just before bed tonight, we seemed to have a better handle on the pain. There is still a lot of pain though. Ashleigh also is showing no desire to do much of anything except lay in her spot on the couch. She's not even interested in watching her videos.

One bright spot: Ashleigh has been very excited about mom's upcoming birthday. She made her gifts earlier in the week and gave me strict instructions about the cake. Because of the way things are going, we moved mom's birthday party up a few days to this evening. Ashleigh was able to enjoy giving mom her presents, singing happy birthday, and helping mom blow out the candles on her rainbow cake complete with Care Bear figurines.

Things seem to be changing. There are a few indicators that the process of dying is starting. Amy and I had a talk with Ashleigh tonight about what is happening. She knows the "sick bug" (cancer) is back. I won't go in to much more detail. But, we think the talk helped to relieve her a bit. I think she was relieved she doesn't have to get chemo again or go back into the hospital. We also told her she doesn't need to try so hard to get better. We think this was adding to her agony. We told her we just want her to try to relax and be comfortable. I guess I did go into some detail.

We are not sure what the next few days will bring. Hopefully, some comfort; maybe peace. Please keep sending your positive thoughts and prayers. And, thank you all for your support and the favors we have recieved.

Sunday, March 5, 2006 11:36 PM CST

Hi everyone,

Since my last entry, we have had some good days and some bad days. Grandma Kelly and Binka were here Thursday and Friday. Things went well. Ashleigh was feeling fairly well and we had some enjoyable times.

This weekend, we had Grandma Kate, Grandpa Bill, Grandpa Dinger, and Grandma Esther. Ashleigh also looks forward to her frequent visits from Aunt Angie. There were good times and some rough times.

The only new developments in regard to Ashleigh's condition is she seems more weak, she has lost weight, and she complained of pain in her scapula. She is still eating and sleeping the same. She wants to do less. But, her sense of humor is still present. She does smile and laugh, especially when her brother is involved. She did sit next to the sliders and hold Tiger on a leash as he explored out on the deck today. Otherwise, she wants to be on the couch in her spot most of the time. She does also enjoy making "presents" for people, playing with her Polly Pockets, and telling stories.

Everyone please send positive thoughts and prayers to Ashleigh's friend Molly. She was diagnosed with NB a few months before Ashleigh. She recently had her second relapse after a lot of extra treatment. This is such an evil disease.

We carry on. I break the days up into: morning, afternoon/evening, and night. If Ashleigh has a good morning, I am happy. If the afternoon/evening is not good, I hope for a good night. I guess that is just a way to try to cope with this awful situation.

Grandparents will be coming again this week and coming weekend. We are hoping for some more smiles and good moments. I would like to geet her out of the house. But, her pain and comfort is a big issue.

Thank you to everyone for your thoughts, prayers, and support.

Tuesday, February 28, 2006 11:11 PM CST

Hi everyone,

Things have been up and down (and weird) since my last entry. Friday, we had a handle on Ashleigh's pain and we were able to take her swimming. She wasn't able to move around as much in the pool. But, she had a great time. Ryan was home with grandparents. So, Ashleigh, Mom, and Dad had some time together.

This past weekend we had Grandma Kate and Grandpa Bill as well as Grandpa Dinger and Esther. Ashleigh had some good times. But she also had a lot of pain and grumpiness. Ryan had the time of his life taking everyone back to his little play area to "play cars".

This weekend we also tried a medication change. We tried to switch Ashleigh from the morphine and Lortab to Methadone. The Methadone is more long acting and would be more of a constant dose in her system, hopefully minimizing episodes of intense pain. Well, this did not go well. It takes the Methadone a few days to build up in the system. Ashleigh was in extreme pain. So, we switched her back to the previous medications. She was happy with the switch back.

Overall, Ashleigh has had some good times. She spends a lot of time on the couch. She likes to watch Rosie Caleb. I have been trying to get her outside. But, she tells me she will go outside when her leg gets better. The medications only take the edge off the pain. Also, with the medications she does not seem to have a lot of pain if she doesn't move much. Chores like getting dressed or going to the bathroom bring a lot of pain. She sleeps okay, usually being up a few times with pain and asking for medication. She is eating. Although, you can tell she has lost weight.

There have been some weird and scary things that have happened. On a few occasions while sleeping, Ashleigh will gasp for air. Her breathing has been fine when awake. When she sleeps, she twitches a lot. She has also reached for things while sleeping. Jessica, our Hospice nurse said this is common for terminal kids. It is a signal her body is "changing" (getting ready to 'you know what'). Also, she has been talking a lot in her sleep. You can't understand what she is saying. Sometimes she laughs. This is all very odd stuff. Basically, things are happening or moving along so to speak. Jessica also warned us Ashleigh may see or hear things that are not there. This morning she said there was a dinosaur in her room and she got scared and pulled the covers over her head.

One person I am very proud of is little brother Ryan (aka. "Ryno"). He has probably handled all of this better than anyone. He used to like to go up to big sister and grab her, try to wrestle, try to take things from her, etc. He knows she is not feeling well. He talks to her and approaches her. But, remarkably, he knows a limit. When she is having a rough time, he knows to go do his own thing. He also makes her laugh at times. What a guy. He also likes to mimic her. He says "ow" alot and when she gives herself her meds, he wants a syringe to be like big sister.

We keep moving along. Last night was not great. Today was a fairly good day. Let's hope for a good night. Maybe there will be some smiles tomorrow.

Binka and Grandma Kelly will be here Thursday. Hopefully, things will be okay going into the weekend.

Take care all.

Thursday, February 23, 2006 11:11 PM CST

Hi everyone,

Where do I start...

The past few days have been very bad. Yesterday, Ashleigh sat on my lap while we watched home videos and would just scream in pain out of no where. We started Ativan to help with agitation. It really did not do anything. We have been wanting to take her swimming. But, she is just in too much pain to do anything or go anywhere.

Today was a better day. We maxed out her morphine dose and this has helped. She did not really scream out in pain today for the first time in a few days. Ashleigh is sleeping a lot. Even in the morning when her pain meds are worn off, she sleeps very late. She is also sweating a lot, likely due to the cancer. We have to work to keep her hydrated.

Our focus with Ashleigh used to be to bring her pleasure. Now, we are just trying to give her some comfort. We attained this goal today. That was nice.

I have no idea what tomorrow will bring. Hopefully, it will be similar to today. I really love to watch her sleep. She is at peace when she sleeps.

Send positive thoughts and prayers. Hopefully, we can get in some swimming soon.

Thank you again to everyone for their support.

Sunday, February 19, 2006 12:10 AM CST

Hi everyone,

We had a few good moments this weekend. All the grandparents were here. Ashleigh was able to spend quality time with everyone. Friday, Ashleigh and Mommy went to the pet store to get some new fish. Friday, we got a new addition to the family, Ashleigh's new pet bunny. She named him "Rosie Caleb". He is very cute and fitting in quite well. Saturday, Aunt Angie got a room at the Amway Grand so we could use the pool. Ashleigh was in a lot of pain that day and it was very painful to get her swimsuit on. But, she was determined to try to go swimming. We gave a little extra morphine and she did very well. She was a little high and enjoyed herself in the pool and had bearable pain.

The new gel: It has taken a few days; but, Amy and I think it is working. It does not take away the pain. But, Ashleigh is able have some comfort while lying on the couch. She has enough comfort to want to do things like play games, etc.

I said earlier there were a few good moments this weekend. There have been a lot of moments that have not been so good. Ashleigh's pain is excrutiating. Sitting on the toilet is painful. Getting dressed involves a few tears. This is all with pain meds on board. There is a lot of screaming in pain. It's awful. Emotionally, Ashleigh is not doing very well. She is very angry and lashes out. Sometimes, the anger turns into profound sadness. Amy and I layed in bed with her tonight as she cried herself to sleep. I won't recant the things she told us. But, they were intense and horrible to hear as a parent. Sometimes, I wonder what is worse; the idea of losing her or having to watch her go though what is happening right now. This is hell on earth. Our poor girl.

I hope tomorrow is a good day. I hope we see a few smiles and maybe a laugh.

Wednesday, February 15, 2006 11:00 PM CST

Hi everyone,

First of all, thank you to everyone who sent Valentine's Day goodies and cards. We especially want to thank you all the kids in Alpena who literally sent hundreds of valentines. We received several large boxes full of valentines, candy, and gifts. Ashleigh really enjoyed going through all the valentines and cards. She spent hours going through everything. Thank you!

Tuesday, we went to see the orthopeadic doc to get x-rays and potential ideas for pain management. The x-rays revealed that Ashleigh's bone in her upper thigh has basically been destroyed by the cancer. It occured just above where we discovered a lesion in September which was filled with bone cement. The only ideas for pain management were quite invasive including surgery, a large cast, numbing the femoral nerve, a new larger brace. The doctor said this type of pain is very intense and difficult to treat. All of the options had major downfalls and would be very difficult for Ashleigh.

A few months ago I read an article about a procedure called "compounding" medications. This involves taking medications that are usually administered orally and converting them into a gel or cream to be absorbed through the skin. It is a relatively new approach in pain management. So, who does this? Well, an old Alpena connection came into play. The article I read was about how Chris Lefave's pharmacy in Alpena is doing a lot of this type of work. I called Chris and talked to him about it. We got our ortho doc on board. He talked with Chris and one of his pharmacists Jesse. They converted a combination of pain meds into a gel to apply to Ashleigh's leg to treat her pain. Chris had it made up immediately and shipped to us overnight. We will start using it tomorrow. Thanks to Chris and Jesse! They have been great.

Despite Ashleigh's pain, she has been having some good times. She was able to go out to Valentines dinner with her pal Caleb yesterday. When we got there, he had a Strawberry Daquari (virgin, of course) waiting for her. Ashleigh and Caleb had a great time and got into eating lots of cherries. Ryan had fun too, saying "hi" to strangers in the restaurant and giving "high fives". Ashleigh has also been busy painting a lot. She has been eating a lot of candy. And, this morning she was very excited when her old friend Lenny the cardinal showed up (remember him?). Ashleigh thinks he left Florida and came back to Michigan early because he missed her. We have bird seed out for him and I suspect he will be joining us for breakfast outside the kitchen window just like last year.

This weekend there will be lots of grandparents in town. We hope this compounded medication gel works. The meds now only barely take the edge off the pain and when they wear off, the pain is very intense again.

We keep plugging along. It is difficult. But, we keep trying to help her live and enjoy, even with these new challenges.

Sunday, February 12, 2006 11:51 PM CST

Hi everyone,

Things have changed quite a bit since my last entry.

The first few days of the week were fine. Caleb stopped by to play and have dinner on Wednesday. Ashleigh was doing well. She didn't seem to want to use her walker much, preferring to crawl on the floor. Thursday, we headed up to Great Wolf Lodge for a quick get-a-way. Ashleigh began to have a lot of pain in her leg. We were up with her that night and she was in a lot of pain.

Since then, Ashleigh has had excrutiating pain in her leg and now her hip. We had to call Hospice and get the doctor involved. She is now receiving pain meds around the clock and morphine sulphate has been added. The morphine seems to help her sleep. But, the pain is still very intense. She only seems to have pain when she moves. This includes when we pick her up. Visually, her leg looks different. We suspect the bone has basically disintegrated. I have seen her in pain in the past. But, this is very intense. It is also taking a toll emotionally. She really can not do much anymore. Rolling over in bed is very painful and difficult.

Amy and I are trying to figure out what to do. We do not want to start the continuous morphine infusion yet. This would take away one of her few enjoyments, time in the bath tub. Also, the pain is localized. We are trying to figure out what else we can do for pain control. We may go see her ortho doc this week to get an x-ray and see if he has any ideas.

We do get occasional smiles and pleasent moments with Ashleigh. She enjoyed painting with cousin Alex today. Also, she laughed at her brother and his goofy antics a lot today. We will plug along and take care of her the best we can.

I'll update more this week, particularly if there are any developments. Send positive thoughts and prayers. And, hug your kids and cherish the normal.

Sunday, February 5, 2006 11:20 PM CST

Hello everyone,

Where do I start? A lot has been happening - all good things.

We went up to Alpena for a long weekend. Thursday, we got the extended family together for a nice dinner. Ashleigh loves going out to dinner with a big group. She walked around the table (holding on to the chairs and me) and passed out Valentines to everyone. Friday was the pizza and pool party at the Holiday Inn. Saturday morning we went on a horse and wagon ride through the woods. We stopped and made a campfire while drinking cocoa and hot apple cider. Then we fed all the horses. Saturday night we went to a Valentines Day party for Ashleigh. Grandma Esther's sister Cindy and her daughters put on a great party for Ashleigh at a club that had a pool. Thank you! So, more swimming. The club was out in the middle of the woods and Ashleigh was very excited when she found a real deer antler (provided by Grandpa Binka) on the ground outside. Sunday we woke up to at least a foot of snow. Ashleigh had a lot of fun playing in the snow before the long trip back home.

Ashleigh continues to do well. I would say things are unchanged (in her regard to her condition) since the last time I posted an entry.

Our two week Valentines Day continues. Thanks to the kids at Sanborn School in Alpena who made some great cards for Ashleigh and sent more stuffed animals and candy. She really had a lot of fun opening everything and feasted on candy.

Thank you to all who continue to support us. We continue to LIVE with cancer and plan to do more fun things in the week ahead. I'll try to have Angie put up some new pictures soon.

Take care all.

Sunday, January 29, 2006 11:30 PM CST

Hi Everybody,

Great Wolf Lodge was a blast! We were there two nights. All the grandparents were there. Also, Aunt Angie and family. Caleb was also there one night. Ashleigh had a great time playing in the pool with Alex and Caleb. On Friday, she was literally in the pool 7 hours! I was exhausted. She did not slow down the entire time. At night, we spent time in the arcade where Ashleigh played a lot of racing games.

While at the resort, Ashleigh had a fair amount of pain in her leg after the 7 hour day in the pool. Otherwise, she was feeling well. Ryan offered the medical excitement for the weekend. He had a reaction to the antibiotic he was taking for an ear infection. When we got back to GR on Saturday I actually had to take him into the ER to get a steriod shot. Poor little guy. When we got home, big sister wanted to take care of him. She told him how she had to get pokes before and he will be all right. She is such a good soul.

Overall, Ashleigh is doing fairly well. She is getting around with her walker. Weight has dropped a little. Amy and I are letting her decide/dictate her pain meds. She is doing a remarkable job deciding if she needs "white medicine" for a little hurt and "yellow medicine" if her leg really hurts. The main thing is; She is still very happy and active. We cherish this.

This week we may do some more horseback riding. Ashleigh has been talking a lot and getting excited for Valentines Day. We hope she is feeling well for this holiday.

Today was a good day. We hope tomorrow is good. If so, we will be very thankful.

Take care all.



_______________________________________

(Jeff - this will archive with your entry when you creat a new one)....Angie

Ashleigh was diagnosed with Neuroblastoma cancer last Monday - June 7, 2004 - 5 weeks before her 3rd Birthday.

Ashleigh was having difficulty walking starting six weeks ago at the end of April 2004. We thought it was some type of orthopedic problem -sprained foot, muscle strain, etc. We went to physical therapy (no improvement) and ended up seeing a chiropractor who is a family friend. He found a pelvic joint that was out of whack and adjusted it. Three days later a large lump popped out underneath Ashleigh's rib cage. We went to the pediatrician the next day and we were admitted to DeVos Children's Hospital that day -
Monday June 7, 2004.

The next few days were devastating. Lots of invasive tests, scans, crying, and trickles of information. Ashleigh underwent five and half hours of surgery on Wednesday June 9, 2004 and they removed a 4.5 lb. tumor (almost the size of a football), her right kidney, adrenal glands, and her appendix. Ashleigh
weighs 30 lbs. That tumor would be analogous to removing a 25 lb. tumor from me.

It was confirmed. She has cancer. The cancer is called Neuroblastoma, high risk, stage 4. They think they got the entire tumor. However, she still has a spot in her left lung and some cancer in her bone marrow.

She has recovered quite well from the surgery. We will be able to come home for a few days this week before being re-admitted. She also has a Broviac main line in her chest. Basically, she has a small hose sewn into her chest to use for chemo, blood draws, and blood transfusions.

Every day is difficult and we are trying to get her healed. We have been through some things that are so horrible it would blow your mind.

Ashleigh's Parents - Jeff & Amy

Wednesday, January 25, 2006 11:15 PM CST

Hi everybody,

As you can see from the pictures, Ashleigh is quite a cowgirl! She had a great time riding her new friend "Freckles" at the Equest Center for Therapeutic Riding. What a great place. The staff was so great. Kelly (Ashleigh's instructor) was awesome. Ashleigh became so comfortable, she told Amy and I to go sit down so she and Kelly could go off riding on their own. Ashleigh also met all the other horses and fed them carrots. As we were leaving, Ashleigh said, "Daddy, I love Freckles". We will be going back in the near future.

Today we met with Hospice and that went well. Amy and I really like the hospice nurse (Jessica) and the social worker (Dawn).

Overall, Ashleigh continues to be doing well. She still has some pain. But, she is eating well, playing hard, and is generally happy.

Tomorrow we are off to Great Wolf Lodge. All the grandparents are meeting us there as well as Aunt Angie and family. Also, Caleb will be there one night. We hope Ashleigh continues to feel well for the next few days.

We march on. Things are quite surreal sometimes. Sometimes I feel like we are ready for what is to come. Sometimes I feel like we are not ready. And most times I can't believe it. We hope and pray for a miracle.

In the meantime, we are happy at the end of the day when things went well and Ashleigh smiled a lot.

Monday, January 23, 2006 11:30 PM CST

Hi everyone,

Ashleigh has been doing better the past few days. She can not walk anymore. She can stand and crawl around some. She is eating well and emotionally is much better. We think her pain has increased. Although, she continues to deny pain most of the time.

Ashleigh has been having a lot of fun. Friday night she went swimming at a water park with Ryan and cousin Alex. Saturday, we went to the Care Bears Live show. Ashleigh really enjoyed herself. Sunday she had Alex over for lunch and to play. We also got in some sledding Sunday night. Tonight, her best friend Caleb was over for dinner and sledding in the backyard. They had a great time.

As you can see, while Ashleigh is feeling up to it - we are trying to have a lot of fun. Tomorrow we will go horseback riding. She is very excited. The end of the week we will be going up to the Great Wolf Lodge in Traverse City. This is a resort with a huge indoor water park.

We will be meeting with Hospice Wednesday. We are not looking forward to this. Sometimes it's hard to beleive Ashleigh has cancer and what the near future holds. That live for today idea really applies lately. We have been eating lots of candy and really focusing on having Ashleigh enjoy herself.

Thanks for all the response about the request for horse riding. We found a great place. I'll write about it soon and you will see pictures.

Take care everyone. Hug your kids.

Friday, January 20, 2006 2:45 PM CST

Hi everyone,

We received the results of all of Ashleigh's testing yesterday afternoon. The results were not good.

Up until 6-7 days ago, Ashleigh was doing great. She was running, eating well, gaining weight, and very happy. Then we noticed she started slowing down in her walking, complained of her back hurting a few times, dropped a little weight, and complained of her left knee hurting.

The results of the testing showed approximatly 50-100 small tumors (5mm) growing throughout her lungs, the MIBG lit up indicating NB in the liver and spleen, and evidence of cancer in her scapula and above her left knee. Basically, she has cancer all over now.

We didn't expect to hear results this bad. The prognosis is very grim. She has about 1-2 months left to live. With aggressive treatment, we may get an extra month. But, the cost to her quality of life of doing treatment doesn't make it worth it.

Ashleigh is still feeling well enough to play. She needs her walker to walk again. Emotionally, we can tell she knows something is wrong.

Hospice will be taking over her care. Our primary oncologist (Dr. Dickens) is also the director of the hospice service. Ashleigh also started on a pain medication.

We are still trying to grasp all of this situation. At this time, we ask if you have questions or need to contact us, please email Angie as opposed to calling us.

Also, Ashleigh wants to ride a horse. If there is anyone out there in the Grand Rapids or surrounding area that could help out with this; please email Angie.

We would like to thank everyone for their continued support, prayers, and well wishes.

Jeff and Amy

Wednesday, January 11, 2006 11:06 PM CST

Hi everyone,

Just a quick update to let everyone know things are fine. No new news. Ashleigh is being a typical 4 year old in many ways.

Next week is the big week. We will go through all the cancer testing and have to make our difficult decisions. Please send your positive thoughts and prayers.

I want to thank everyone again for their support. I especially want to thank the people who have held fundraisers to help our family. You have no idea how this has saved us!

Also, I want to thank Aunt Angie again. She has been phenomenal in her support. Not only has she set up and maintained this website; She has also done a lot of research for us and talked to a lot of people online. Doing this research is very difficult emotionally. You read lots of bad stories. Angie has been tireless in her love and support. Thank you, Angie!

I'll update again next week. Hopefully with good news.

Take care all

Tuesday, January 3, 2006 11:25 PM CST

Hello everyone,

Sorry so long since the last update. Remember, less updates should be interpretted as a good sign for us.

Ashleigh has been feeling great, doing well. She is running, playing, eating, seeing her cousins/friends, helping mom a lot, and being like a normal kid in many ways. Her hair is coming back in. She is my little "peach head" with a five o'clock shadow on her head. She is so cute.

Amy and I are starting to talk about what to do next. Ashleigh will be going through all of her cancer testing the week of January 16-20.

We would like to get Ashleigh started in pre-school. She is mobile now and really does not have any limitations. We have a preschool slot lined up. But, if we start her on treatment again, preschool might be out for now. We don't want to put her in a situation where her immune system drops and she catches something at school and ends up very sick and back in the hospital.

Overall, it's hard to believe our kid likely has cancer. We try to enjoy every day and cherish this time when she feels so good and is enjoying life.

Take care all. Thanks for your continued support.

Monday, December 26, 2005 9:37 AM CST

Hello everyone,

I hope everybody had a great Christmas. I know we did.

Christmas Eve we had a big dinner at Aunt Angie’s house. Ashleigh had all of her grandparents there. She, Alex, and Ryan had a great time running around, being loud. We had Christmas at our house this year. Yes, Santa Claus came and left all kinds of presents. We had Christmas brunch (a tradition) with all the grandparents, Aunt Angie and family, great Grandpa and Grandma McDonnell, and Aunt Peggy and family. Amy had everything figured out and worked so hard. She put on a great Christmas celebration for us.

All the family togetherness, good food, laughter, and nice gifts were great. But, the greatest gift was to have Ashleigh with us, feeling great and enjoying herself. The best gift I received this Christmas was being able to watch her run around and have fun with her cousin and brother. She had a Christmas like most kids. The way she is moving around, we might have to get her a new brace. She will probably wear this one out!

In the next few weeks, we have to start facing the reality of cancer again. And, as time goes on, we get more worried about new lesions, fractures, and Ashleigh’s mobility being taken away again. Does anyone know how to stop or freeze time?

Take care all.

Monday, December 19, 2005 11:01 PM CST

Hello everyone,

Sorry about the delay for an update.

Clinic went well on Friday. Ashleigh's numbers looked great. Her platelets were in the normal range for the first time (without transfussion) since she was diagnosed. White cell counts were in the normal range. Her labs showed a healthy kid.

We started talking with the oncologist about the next phase of potential treatment. It is really hard to think about putting her through treatment again. She is not showing any symptoms of cancer. All of our decisions about treatment now are complicated and difficult. If/when we start this next treatment, her immune system will be affected. She could get sick, possibly seriously ill. And, there will be side effects. Doing this to her when she is feeling so good and is so happy is tough.

We decided we are not doing anything until after the first of the year. We will begin with all the cancer testing and then start making decisions about potential treatment. We want to have a good Christmas this year. Remember last year at this time? We were in ICU and Ashleigh was fighting for her life.

Other things: The weekend was very nice. We had a great time, staying home. Tiger came back from the vet on Saturday after being declawed and neutered. Ashleigh took a tongue depressor, alcohol pads, gauze, and bandaids home from clinic for him. She did a full exam on him when he came home. He is recouperating fine.

This week we are getting ready for Christmas. We are having Christmas here, with all the family traveling here.

Amy and I want to thank everyone for donating to Ashleigh's Christmas tree on the Lunch for Life website. By following us, you have seen how rough this disease is. Each dollar helps to find better treatment and hopefully raise the cure rate. Thanks!!

We just want to thank everyone again for your support and prayers. Best wishes for a happy holidays.

Wednesday, December 14, 2005 11:20 PM CST

Quick update for those of you who have been waiting.

Our oncology appointment was rescheduled for Friday. Our doctor was not going to be in clinic Tuesday.

I'll probably update after the weekend.

Take care all.

Monday, December 12, 2005 10:45 PM CST

Hi everyone,

Quick update.

We had a great weekend. We went up to Alpena. Lots of Grandma and Grandpa time. Also, we spent an evening out at Great Grandma and Great Grandpa's cottage. That was nice. Ashleigh and I went outside and played in the snow with the sound of Lake Huron in the background. And, sitting inside watching deer about 30 feet away while it was snowing. It was heaven.

Today, we saw the orthopedic doctor. The x-rays did not show any new lesions! Also, he saw healing bone (yes, healing) around the areas where the lesions were. He said he was "surprised" by this. We like these kind of good surprises. He doesn't need to see her back for two months.

Otherwise, Ashleigh is feeling great. She is walking everywhere. She is even trying to run a little. This makes mom and dad very nervous. We can tell she is very happy and excited about getting her mobility back.

Tomorrow is a big day. We have an oncology appointment. Amy and I have lots of questions and lots to talk about pertaining to what we are going to do next for treatment. There are many difficult questions and decisions.

I'll try to update again in a few days.

Thanks for your support and prayers. Also, thanks to those who donated to Lunch for Life and helped to decorate Ashleigh's Christmas tree.

Take care all.

Tuesday, December 6, 2005 11:35 PM CST

Hi everybody,

Where do I start?!

We got home about 7 pm last night. Our trip/vacation was basically perfect. Riding in a limo and the plane rides were the first thrills for Ashleigh.

We were in Orlando for 6 days. We went to the Magic Kingdom, the Animal Kingdom for a safari, the Epcot Center for lunch with the princesses, and Sea World. At the parks Ashleigh went on rides, met several Disney characters and got autographs and pictures, played arcade games, fed dolphins, watched shows with Disney characters, saw a show with Shamu and other killer whales, saw African animals in a preserve, bought souvenirs and gifts, and posed for and took many pictures. Grandpa Dinger and Esther were along for most of our adventures. That was nice. Ashliegh had a lot of fun with them. And, Esther took a lot of video - freeing mom and dad up to enjoy things with Ashleigh.

We stayed at the Polynesian Resort on the Disney complex and it was awesome! The pool was amazing. The resort is also located on a lake and we could see the Magic Kingdom across the lake. Every night there was a fireworks show at the Magic Kingdom that we could watch from our beach. We went to a Luau one night. At the resort, Ashleigh was in the pool every day. We also rented little boats one day and cruised around the lake. The weather was nice - mid to high 70's most days and sunny with no rain. The food was really good too. In fact, all of us gained a little weight on the vacation. Ashleigh drank Strawberry Daquaris (virgin) every day. Mom and Dad were into the Pina Coladas and Mai Tais.

Ashleigh walked all over (without help) and felt great. You should have seen her. This cute bald little girl in her bathing suit with a brace on her leg, pink floaties on her arms, and her new "swimming glasses", - walking all over with her limp and going in to the pool, having the time of her life.

We called home frequently. Ashleigh was mostly concerned about Tiger. He was okay. Ryan missed us. Although, he was spoiled by Aunt Peggy and Grandma Kate.

The trip was great and much needed. We are hooked on Disneyworld now. We were a little shocked to come home to a snow storm and temperatures under 20 degrees. But, we are happy to be home.

Take care all. Enjoy the pictures.

Wednesday, November 30, 2005 1:13 PM EST

HI Everyone - I just want to let you know that I got a phone call around 11:30 AM from Ashleigh, Amy, & Jeff at Disney Land (Grandpa Dinger & Grandma Esther are there too!). They were sitting in front of the big magical castle waiting for Cinderella to show up. Ashleigh is having a wonderful time so far -last night she got to watch the fireworks and today she she gets to meet the Disney characters. She wears a special badge so that everyone knows she is on her special Make A Wish trip. Apparantly it creates a lot of attention with the Disney Characters as Minnie Mouse had already hurried over to see Ashleigh & get pictures with her when she was passing by. Ashleigh really loves her hotel room too. Right outside the door is a little beach she can play on. She sounded very excited & happy on the phone. I just wanted to share this. Have a wonderful day.

Aunt Angie

Monday, November 28, 2005 11:45 PM CST

Hi everyone,

Sorry so long since last update.

Friday clinic went well. Ashleigh's white cell count looked good. Her platelet and red blood cell count were about the same. Good enough to avoid a transfussion.

We had two Thanksgivings. The first on Thursday at Aunt Angies house. Saturday we did the second Thanksgiving at Aunt Peggy's house with family in from Alpena.

Ashleigh continues to feel great. Eating is more normal now. She looks great with the extra weight. She looks more healthy. We were worried last week because Ashleigh was complaining of soreness in her leg and walking less. The past three days she has taken off with her walking again. Tonight she even raced dad while using her walker. This is somewhat of a relief. Of course, we still worry.

Tomorrow is the big day! We leave for Florida on Ashleigh's Make-A-Wish trip to Disney. She is getting very excited. We will be staying at the Polynesian resort. Ashleigh has her grass skirt and is ready for the luau. She will also have lunch with the Disney princesses one day. It should be a great time. We need a vacation. After a lot of thought, we decided to leave Ryan ("the Ryno") home. He and Aunt Peggy and Grandma Kate will surely have a lot of fun.

Next entry there will hopefully be Disney pictures included!

Take care everyone.

Monday, November 21, 2005 10:55 PM CST

Hello everyone,

We had a great weekend. Grandpa Dinger and Esther were here this past weekend. They rented a room at a Holiday Inn that had an indoor water park. Ashleigh, Ryan, cousins Alex and Quinton all had a great time.

Ashleigh continues to feel good and be in great spirits. Her weight has stabelized. Cheetos are still big. But, a little more under control. She is eating healthy.

Ashleigh's walking has slowed down. She has complained her thigh is sore on the left leg (where all the work was done). We are not sure what is behind this and we worry. However, she is not in a lot of pain.

We are getting excited about Disney. We leave a week from tomorrow. We will have clinic on Friday to make sure numbers look good before we go on our trip.

When we get back from the trip, we will have to start talking with the doctor and try to figure out what we will do for the next round of treatment. We have lots of questions and concerns.

Have a happy Thanksgiving!

Thursday, November 17, 2005 11:25 PM CST

Hi everyone,

Clinic on Wednesday went well. Ashleigh's numbers looked good. Her platelets are slowly coming up (65,000). We don't have to be back in clinic until next Friday.

Ashleigh's hair is completely gone now. We also had to cut off her appetite stimulant. Her appearance has changed quite a bit over the past few weeks. However, she looks healthy. Cheetos are still big.

Ashleigh's walking has slowed down a little bit. This gets us very concerned. We don't know if she overdid it or if this is a sign of something to be worried about. She will still walk. But, not as easily or brisk as before.

Disney is booked. We are leaving the last week in November. We will be there a week. We are staying at the Polynesian resort. We are all looking forward to our trip. I hope the weather will be nice.

I didn't mention this in the last few updates: Ashleigh has been in great spirits lately. She is laughing, joking, and giggling constantly. She is also sleeping much better. It's so nice to hear her laughing and that cute little giggle.

Tonight, we were outside for a long time enjoying the snow. Ashleigh had a great time sledding in the back yard and making snow angels.

This weekend Grandpa Dinger and Esther will be here. We will definitely be swimming. We are looking forward to another good weekend. Hopefully, no major events.

Have a good weekend everyone.

Tuesday, November 15, 2005 7:14 AM CST

Hi everybody,

We had a very good weekend. Ashleigh felt great and was in a great mood. Saturday, Daddy and Ashleigh went swimming. We had a great time. She would not get out of the pool. Finally after an hour, with her little blue lips and shivering body, I was able to talk her into getting out of the pool with the promise we would come back next Saturday. The rest of the weekend including playing and relaxing at home, and a little shopping with Mom.

Friday, clinic was interesting. Ashleigh’s numbers looked decent. Her platelets were a little low. She finished her radiation. The staff gave her a little cake and a gift. We are glad that’s over. The interesting part came when out of no where, Ashleigh told Amy and I she wanted to walk (without help). She got out of her stroller and walked about 30 feet by herself with a big smile on her face. Amy and I almost fell over. We couldn’t believe it. Some of the staff in the clinic witnessed her feat. They were shocked as well.

I guess she has decided and now feels good enough to walk on her own. She has been practicing quite a bit the past few days. Her legs are getting stronger every day and she is learning how to walk with the brace.

Cheetos is still the food of choice. Ashleigh hit 15 kilos (33 lbs) for the first time in several months. We actually had to cut back her appetite stimulant. She is gaining too much weight too fast!

Hair: Ashleigh lost about 90f her hair over the weekend. Her cute little hairdo is gone. We had to dig out her hat collection. I don’t think she is that upset. When we ask her about it, she just says “It will grow back”. For some reason, this is very tough for Amy and I. I guess it’s the constant reminder we are again fighting cancer. It’s also one more “normal” we got back that has been taken away.

Clinic on Wednesday. We are still working on re-scheduling our Make-A-Wish trip. The Disney resorts are booked pretty solid over the next few weeks. Hopefully, we will get all of that set soon.

Take care.

Thursday, November 10, 2005 10:25 PM CST

Hi everyone,

Things have been going fairly well. At clinic today, Ashleigh's counts looked very good, a white cell count up to 9000. No pokes tonight (Neupogen shot). Her platelets were a little low. But, overall the numbers were good and Ashleigh had her 9th round of radiation. Tomorrow will be her last radiation.

Walking: A few days ago, we had Ashleigh standing holding on to the couch. Amy encouraged her to walk. She said she couldn't walk. With a little encouragement, she took off with about four steps. I wish you could see the look on her face. It was a combination of surprise, happy, and excited. Each day she walks a little more. She moves around quite well with her walker. She can walk if we hold her hand. Every day she gets a little better. She is learning how to walk with the brace. We are hoping she will be walking without help before Christmas. That would be great.

Eating: Wow... Ashleigh has put on about 3 lbs. in the past week eating Cheetos and drinking yogurt drinks. Three pounds is about 10% of her body weight. She looks great. It's so nice not having to hound her to take every bite at every meal.

One sad thing lately is that Ashleigh's hair is beginning to fall out again. We were told that the oral chemo she was on would not result in major hair loss, maybe just thinning. She has been losing clumps of hair and some eyelashes the past few days. This seems to be bothering mom and dad worse than Ashleigh, so far.

Overall, Ashleigh is feeling great. She is in great spirits and sleeping a little better. Make-a-Wish is trying to reschedule our Disney trip.

Tomorrow will be another clinic visit and radiation. We are planning to have a quiet family weekend. The big plans will be swimming on Saturday.

Take care all.

Monday, November 7, 2005 10:25 PM CST

We're home!!

Ashleigh's white cell count was 2420 this morning with an ANC of 580. This upward trend was good enough for the doctor to send us home. Ashleigh was home by 1:00 today and took a nap in her own bed.

Needless to say, Ashleigh is very happy to be home. Ryan is happy to have his big sister home so he can harass her. And, Tiger is happy. We had a great night with quality family time.

We are due back in clinic on Thursday for a check of counts and probable transfussion. Tonight, we had to do a poke. A shot of Neupogeon in the thigh. Not fun, but Ashleigh handled it like a trooper.

I'll try to update after Thursday. Take care all.

Sunday, November 6, 2005 10:51 PM CST

Hi everybody,

The past two days have seen small but steady improvements. Ashleigh's numbers have increased slightly each day. Her white blood cell count is now up to 1290 (normal is 5000-10,000). This is much better than the 550 we had the other day. Her ANC is still quite low.

Ashleigh is eating okay. Lots, and lots, and lots of Cheetos. The diahrea has stopped and no new fevers. Her spirits are good. The 2-3 hour passes out of the hospital for dinner help a lot.

There is a possibility we could go home soon, maybe tomorrow. They will probably let us go home even without hitting the mark (an ANC of 1000) usually required to get out of here. We know her well, know what to look for, and thankfully live 20 minutes from the hospital. If we go home, their will be frequent clinic visits until Ashleigh's counts get better.

We are supposed to leave for Florida/Disney this coming Saturday. We will have to postpone the trip for a few weeks, to make sure Ashleigh is stable and feeling well before we go.

Let's hope for good numbers tomorrow and a restful night. Take care all.

Friday, November 4, 2005 8:54 PM CST

Hi everybody,

Quick update before the weekend.

Ashleigh's counts dropped again today. We are on the rollercoaster. So, it looks like we will be here for a while. For some reason appetite was down too. Ashleigh spiked a low grade fever earlier today. That went away. She feels a little warm now.

Last night was a rough night. For the first time since we have been in, Ashleigh did not sleep well. She was very tired today and did not want to do much.

Ashleigh's friend Anna brought her a huge Care Bear bag with great gifts including two stuffed animals and new pajamas. That was a bright spot in a long and somewhat rough day. Thank you Anna and Heather!

Let's hope for a better night tonight and improved numbers in the morning. I'll probably update again Sunday night or Monday morning.

Take care everyone and thank you for your support.

Thursday, November 3, 2005 10:15 PM CST

Hi everybody,

Ashleigh's white counts were up today. They were up to 990 from 550 yesterday. We still have a long way to go. But, lets hope this trend continues.

We were able to make it home for dinner tonight on a pass. Ashleigh enjoys being home and spending time with Tiger. Ryan likes having everyone home. He gets nervous and upset when we get ready to go back to the hospital. He gets worried we are all leaving him again. As he gets older, our journey/battle is beginning to affect him as well.

Ashleigh continues to eat well. The new food of choice: (an old favorite) Cheetos. Last night Ashleigh woke me up at 2:30 am to tell me she was hungry and ask if she could eat some Cheetos. So, we enjoyed a short Care Bear video with her snack and she went right back to sleep.

New concerns are an abnormal heart beat at times. Her heart rate is also running significantly lower at times. Also, her temperature is actually below normal most of the time. These are weird changes that have come on suddenly. We don't know what they mean. Hopefully, there is not damage to her heart. We may have to figure this out after we get the main concern taken care of - getting her immune system up to par.

It's kind of a sad night for me. I just feel so bad for everything she has to go through. Out of the blue tonight, Ashleigh said "Daddy, I miss running". Running was one of her favorite things to do. What she is going through couldn't be any more cruel by design. Not only does this sweet little girl have to fight cancer, but she can't even walk or run and have that enjoyment anymore.

Please everyone - enjoy "normal" with your kids and your life in general. You never know when that could be taken away.

Wednesday, November 2, 2005 10:05 PM CST

Hi everybody,

Ashleigh's counts keep falling. Her white cell count is now at 550. She was at 2800 last Friday. Normal is 5000-10,000. Platelets dropped again. We continue to worry that if her counts do not come up soon, she will get hit by a nasty viral infection. Also, she looks to be retaining a little fluid and her blood pressures have been creeping up. So, we are very concerned and hope things turn around soon.

On the positive side: no new fevers; Ashleigh is now eating and drinking well - thank you Megace (appetite stimulant). We were even allowed a 3 hour pass out of the hospital (while wearing a mask) to go home so Ashleigh could check on Tiger to make sure he was okay without her at home. We had pizza for dinner and ate as a family. That was nice. The pass was a bit of a surprise. But, I think our doctor is a bit more liberal with us, given our situation and how long we have been at this now.

Amy and I try to remain focused on the present problem, trying to get Ashleigh better and her immune system back up and running so we can get out of the hospital. But, we also are starting to re-assess the decisions we have made about Ashleigh's treatment. Her body has been through so much. And, even with a mild form of chemo and radiation for palliative care, Ashleigh's immune system has crashed. We do not want her living like this if she only potentially has a few good months left. We have more hard decisions to make. And, our options seem to more limited now.

We need your positive thoughts and prayers. Hope for better numbers tomorrow.

Take care all.

Tuesday, November 1, 2005 10:31 PM CST

Hi everybody,

Last night went well. Ashleigh slept very sound. No major events.

This morning the numbers showed her white cell count took another dive, even after Neupogeon. Her counts were too low to do radiation. We need her counts up to be able to do at least 2 more sessions or radiation in order to have enough of a dose to do anything to the NB. Otherwise, the 8 sessions already done were worthless.

This morning they tested her IGG level. This is an indicator of her body's ability to make antibodies to fight infection. The level was low and she is receiving IV-IG to try to boost it up.

There has been no fever in 24 hours. That's good. Ashleigh had little interest in eating most of the day. However, she got hungry about 7 pm tonight and polished off a bowl and a half of ice cream and a pile of "fishy crackers". That's the most she has eaten in the past 5 days.

Today, Ashleigh was quite grumpy all day. I went home for a few hours this afternoon and she wanted me to call her as soon as I got home. When I called, she wanted to talk to Tiger. She talked to him twice today, saying she missed him and she hopes to come home soon. It was both cute and sad.

We are waiting and hoping for her counts to come up before we can get home. Hopefully, by the weekend. We also hope we can get her back into shape to make the Disney trip. That is coming up fast.

Take care all.

Monday, October 31, 2005 10:23 PM CST

Hi everybody,

A lot has happened since the last entry Friday night. Ashleigh began to run a low grade fever Saturday and started having a lot of diarrhea. She went to the movies with Caleb and MacKenzie but she didn’t feel very well. Saturday night the fever got a little worse and the diarrhea was frequent. We called the doctor and talked about potentially taking her in. We stayed home Saturday night and managed the fever with Tylenol.

Sunday we went to meet the Wiggles. Ashleigh was not feeling well at all. She managed to make it through the meet and great. It was a thrill to meet them and they were very nice. But, Ashleigh did not want to stay for the show and was not doing well. Sunday evening her fever hit 101.7 and we had to call the doctor. We were admitted about 9:00 Sunday night.

Ashleigh’s initial labs were a bit shocking. Her counts had taken a major dive since we were in clinic Friday. She was also a little dehydrated. She had to be cultured for infection and there were concerns about viral infections (remember the last major viral infection?). She also quit eating and already has lost a lot of weight. She is becoming skin and bones again.

It looks like the combination of the oral chemo, radiation, and a potential virus have really knocked her down. We stopped the oral chemo after finishing 15 of the 21 days prescribed. We have tested for viruses, particularly our old enemy Adenol virus that resulted in the multiple organ shutdown in transplant last December. So far, those cultures are negative. The kidney seems to be holding on okay so far.

Ashleigh was extremely tired and slept the better part of the day today. The fever has come and gone all day, getting up to 100.7 once. She received neupogeon (to help stimulate white blood cell production), platelets, and she will get red blood cells tonight. She also started on an antibiotic.

This evening she perked up a little bit and has been eating a little and sipping water. We will evaluate her counts in the morning to see if she can do radiation tomorrow. She has 4 more sessions left. We may start TPN (IV nutrition) tomorrow. Ashleigh is sleeping now and the fever went away at 9 pm. Let’s hope for a good night. We will probably be here a few days.

So, no Halloween fun this year. Amy and I did not anticipate we would be back in this type of situation again. I’ll try to update again in a day or two.

Take care all

Friday, October 28, 2005 11:28 PM CDT

Hi everyone,

This has been a busy week. Ashleigh had radiation every day. Ryan gave her and mom and dad his nasty cold. Appetite has been down. Ashleigh has lost a little weight. She has also had a few incidents of mild naseau. Emotionally, things continue to be rough. Yesterday, she was crying and told Amy she wanted to be "normal" (walking and doing the normal kid things).

Thursday the ortho appointment went well. The x-rays looked fine. No new lesions. The repaired areas looked good, no new bone destruction.

Today, we had clinic after radiation. Ashleigh's labs showed her numbers are being hit by the combination of the oral chemo and radiation. Her ANC (ability to fight infection) is down. Overall, the numbers were not really bad. We didn't need tranfussions. They are just down a bit. Ashleigh will start on an appetite stimulant. She needs to put on a little weight. She has one more week of radiation and 10 days of the oral chemo. We can't wait for this to be over.

Okay, now some good things. We are going to Disney on our Make-A-Wish trip Nov. 12th. We are all getting very excited. Hopefully, Ashleigh will be feeling well. What's the weather like in Orlando in mid November?

Ashleigh will be going to pre-school! The public schools were full. We found a private pre-school program willing to take her. Amy or I will have to be there to move her and help get her on/off the potty if needed. But, I think this will really help raise her spirits and give her some normal in her life.

Sunday will be a big day. The Wiggles are in concert in East Lansing. Apparently, they don't even advertise and sell out major venues (the Breslin Center). Ashleigh has been into them for a long time. Amy emailed and called the Wiggles marketing people. They set us up with tickets and Ashleigh will get to meet them. That will be a thrill for her! Ashleigh's oncologist (Dr. Dickens) is jealous. Apparently, he's a big fan. He even dressed up as Greg Wiggle one time (there is a slight resemblance). He said he might have to join us for "medical supervision". If hem/onc staff read this - please call him "Greg".

Tomorrow is also a big day. Ashleigh has a date. Her, Caleb, and Caleb's stepsister MacKenzie are going to a movie. She is very excited.

We keep plugging along, living life - trying our best.

Take care everyone. I'll try to update after the weekend.

Sunday, October 23, 2005 11:50 PM CDT

Hi everyone,

Sorry so long since an update. Just remember, less frequent updates is a good thing in our situation.

Things have been going well. Ashleigh started radiation(her "radiation pictures") Thursday. Piece of cake - no problems. I think Ashleigh kind of likes it. She doesn't need to be sedated this time. She likes the big machinary that moves around her and said it feels like she is in a spaceship. There haven't been any side effects as of yet. The oral chemo is going well. No side major effects yet either. Appetite is a little down though. That seems to be it, so far.

This weekend we went to Alpena. Ashleigh had a pool and pizza party at the Holiday Inn. All the grandparents (and great grandma and grandpa) were there to witness her first swimming in over 16 months. Ashleigh had a great time. She was literally in the indoor pool for hours! She loves to swim and with her burgeoning imagination, we were able to make up all kinds of scenarios where she was swimming away from sharks and whales. Ryan went in for a little while. He is dealing with a nasty cold right now.

Ashleigh's leg is feeling better. She continues to practice with her walker. She is getting more used to wearing the brace.

This week will be busy with radiation every morning, a ortho appointment Thursday, and a clinic appointment Friday.

Since Ashleigh is feeling so good and doing well, we have decided to keep plugging alone with life as if she didn't have relapsed NB. That includes getting her started in preschool. This is a challenge to some degree. Since preschool is not mandatory education, schools are not legally bound to provide accomodations for Ashleigh. Her only limitation right now is mobility. However, after talking with the schools last week, they said they may be willing to provide some accomodations for Ashleigh to attend regular preschool. That will be my main project this week. She would love to be around other kids more. I think she would really love preschool. So, we'll see what we can work out.

I'll update toward the end of the week. Again, Amy and I would like to thank everyone for your support, positive thoughts, and prayers.

Monday, October 17, 2005 11:55 PM CDT

Hi everyone,

We had a good weekend and things have been going fairly well lately.

Saturday, Ashleigh, Ryan, mom, Aunt Angie, cousin Alex, cousin Quinton, Grandma Kate, and Grandma Esther went to a pumpkin patch/farm near our home. Everyone had a great time. Ashleigh was very excited about feeding corn to baby goats from her hand.

Sunday was Quinton's baptism. After church, we had lunch at Aunt Angie and Uncle Steve's. I was a bit nervous. Steve's side of the family includes 7 neices/nephews. I was worried Ashleigh would get sad she could not run around like the other kids. But, she had fun hanging out with Claire and Sarah. They were so nice to Ashleigh. The girls played on the swings and Sarah and Claire found things to do where Ashleigh could participate. They are very sweet girls and they helped Ashleigh have lots of fun.

Overall, Ashleigh continues to make slow and steady progress in regard to using her leg and the emotional stuff/fallout. She even walked a bit tonight with her walker without help. Today Ashleigh and mommy took her brace in to have it adjusted and some holes drilled to make it more comfortable (less hot, more breathing). That helped out a lot. She still is not sleeping the best. But, this is getting better.

Ashleigh's weight was actually up a bit tonight. The new foods of choice: Hershey's chocolate bars (230 calories) and peanuts. Good choices. Since we were allowed to have baths (last Wednesday) - Ashleigh has demanded to be in the tub every night! She is a very clean girl.

Today, Ashleigh officially began treatment again. She started taking her VP-16 (oral chemo). The side effects are not supposed to be very intense. Let's hope she tolerates it well. Thursday, we start radiation.

We just keep plugging along, trying to help her enjoy life. Ashleigh feels good right now and she is still alive. We will take advantage of that.

Take care everyone. I'll try to update before the weekend.

Thursday, October 13, 2005 11:05 PM CDT

Hi everybody,

Today was a pretty good day in our world of childhood cancer.

Ashleigh had her simulation for radiation therapy this morning. This is basically a practice run and getting things measured and set up for her radation. She will receive 12 sessions of radiation beginning next Thursday and basically occuring every morning (excluding weekends)until completion. She did great during the simulation. They made a mold for her to lay in. We are going to try to radiate without sedating her. She will get the entire right femur radiated.

After radiation oncology, we had a clinic appointment. We were very nervous because this would be the first time Ashleigh had her port accessed. She again did an awesome job. She didn't even cry. Her numbers looked great. Actually, probably the best they have been since we began treatment. They didn't look like numbers you would expect for a kid with relapsed NB.

We met with our oncologist and finally hammered out a plan. There have been so many options with a variety of side effects and other issues. With relapsed NB, there really is no standard protocol about how to treat it. And, given how Ashleigh's disease is manifesting and other aspects of her case, we had a lot of things to think through and weigh in our decisions. It was exhausting for Amy and I to try to make our decisions. Thanks to Aunt Angie for her great research and talking to other NB parents online about what they have done.

This is our plan: We will do the radation therapy and start a 21 day cycle of an oral chemo medicine called VP-16. This will slow down the cancer, attempt to keep it at bay, and maybe even kill off some of it. Then we go to Disney (Make-A Wish trip). When we get back we will start a treatment our oncologist (Dr. Dickens) developed and conducted research on in the past. The treatment is a combination of chemo, an antibiotic, and an anti-inflamatory drug. It is very technical (major biochem) in regards to how it theoretically can work. All the treatment will be through oral meds and the side effects will be minimal (relative, I know).

Amy and I believe this is our best option at this time. It takes into account what gives us a shot at a cure and focuses on Ashleigh's wellbeing and happiness. She will be the first kid to recieve this particular treatment. It is different than many other things being done to treat relapsed NB. It's kind of hard to explain; but, it just fits well with what Amy and I believe is best for Ashleigh right now. Hopefully, it works and she becomes a famous case study. We'll see.

Other things: Tiger is great. He has really brightned things up around our house. Ashleigh started trying to walk with her walker tonight. She was a bit scared. But, she did great. Amy and I will be rehabbing her on walking again - for what, the fourth time.

This weekend, cousin Quinton will be baptised. Grandparents will be in town again and there will be lots of fun. Dad will get another shipment of polish sausage from Perch's in Alpena. Mike Kendziorski and his crew make the best polish sausage in the world. I can't wait for breakfast Sunday morning.

Take care everyone. Hug your kids.

Tuesday, October 11, 2005 11:15 PM CDT

Hello everybody,

Things have been a little better and I have have some good news to report.

Today we had an appointment with the ortho surgeon. Ashleigh had her right leg (the "good leg") x-rayed. There were no obvious signs of cancer. Her repaired leg looked good on the x-ray. We will see him again in two weeks. In the meantime, we will get an MRI of the good leg to look for any beginning lesions.

During Ashleigh's surgeries last Wednesday, our oncologist took bone marrow samples and sample of bone from Ashleigh's hips. The results came back and showed clear of cancer. The doctors are surprised and this has even been described as "weird". Neuroblastoma likes to travel or circulate in the body. The idea that the cancer has only destroyed bone and is not present in the bone marrow (or anyplace else) is very unusual. No one knows what to make of this. Ashleigh is not following the rules or a typical case again.

Ashleigh's pain has been better the past few days. She is only taking Tylenol now. We are still dealing with the emotional fallout from what she has been through lately. She is not sleeping well, is angry at times, and is very quick to cry. We have seen this before after hospitalizations. Hopefully, this will start to diminish.

Okay, the fun stuff... Ashleigh took her first real, full bath tonight in over 16 months! When she had her Broviac, Amy had to tape it up in Saran wrap and Ashleigh could not get it wet. Tonight, we filled the bathtub up and she had a great time. She always loved her baths. It was so nice to see her enjoy herself, splash, play, and lay back in the water.

Tomorrow, Ashleigh and mom will take Tiger to his first vet appointment. Ashleigh will help him if he has to get pokes. This weekend will find a place to go swimming! We are excited.

I want to thank the anonymous person who put money down to credit Ryan's account at daycare. That was a very nice gesture and helped our family out immensely. Especially since we received a letter today informing us our monthly premium for our COBRA health insurance will be doubled immediately. How can they do that?

Take care everyone. I'll try to update after the Thursday appointments.

Sunday, October 9, 2005 12:08 AM CDT

Hi everybody,

The weekend was rough. Ashleigh was basically miserable with pain all weekend. We could get a 1-2 hour window after she got pain meds (every 6 hours) where she wasn't entirely miserable.

Each day we saw a little improvement in being able to move. Friday, Ashleigh could not even pick her butt up off the couch or sit up, the pain was so bad.

A side effect of the pain med is our old nemesis, constipation. That pain is no fun either. But, Amy has Ashleigh's bowels figured out. Her regime of prune juice and Senacot (medication) given at particular times got things moving again. That was helpful.

Even though Ashleigh had a rough weekend, we tried to have some fun. Grandma Kelly and Binka were here this weekend. Saturday we spent some time at the cottage. On the ride back home, Amy stopped at a farm that had a big sign for "free kittens". Well, guess what... Ashleigh's new friend "Tiger" chose her and Mom and Ashleigh brought home a new kitten. Angie will put up a picture.

Tiger is very cute and a nice little guy (I think he's a he). He likes to sleep on Ashleigh's lap and is very playful. This helped raise Ashleigh's spirits a little. I think he will be a great help in this department in the future.

Sunday, Ashleigh and mom went out to visit her friend Anna. She is a friend from clinic fighting a form of lung cancer. Ashleigh met Anna's new dog. Even though she wasn't feeling well, Ashleigh had a good time. Anna made her a great poster with pictures of Ashleigh from the website. It's hanging in her room now. Sunday afternoon, we went to dinner at Aunt Angie's for her birthday.

Right now, Ashleigh and mommy are sleeping in her new full bed. I hope it's a good night. The past few have been tough with pain meds at 4 a.m. Let's hope tomorrow is better.

Tuesday is the ortho appointment and Thursday is Oncology and Radiation Oncology. I'll try to update after the appointments.

Take care everyone.

Thursday, October 6, 2005 11:58 p.m.

Hi everybody,

Thanks to Aunt Angie for the update this morning. I could not put on an entry from the hospital last night. There was too much happening. It was kind of a long night. We got home today at 4 pm.

To add to what Angie already told you: The surgery turned out well. But the doctors had a few challenges. There were a few problems with the putting in the port. Dr. Uitvulgt did the surgery. He has now done three of Ashleigh's surgeries. He had to get creative to get the thing in. Ashleigh has so much scaring due to all the lines she has had placed in her little body(remember me counting "tubes" during the ICU stay). He got the job done. He is awesome.

During the ortho surgery, Ashleigh's bone down by the knee was breaking and he had to put in two screws to secure the cement/rod to the remaining bone. Dr. Forness said he was very happy we decided to cement the lesion in the thigh because it would have fractured very soon.

Like Angie said, Ashleigh is having a lot more pain from this surgery. Obviously, she had a lot more done. The port is sore and bothering her alot too. It will take a little while for her to get used to it. The port is basically a 1 inch by half inch metal apparatus under the skin in her chest with a line that goes into a main artery. To "access" the port we will put on a cream to numb the area and they will place a needle. The advantage is Ashleigh will be able to swim and take normal baths.

We have meds to help with the pain. We suspect Ashleigh will have significant pain for a few days. Initially, the ortho doc said she would be able to walk as soon as she felt like it. Now, with what he found (the bone breaking around the knee) he wants her to remain in the brace indefinitely and learn to walk with it on. This is disappointing. But, it's better than no mobility at all.

Amy and I are also trying to manage the emotional fallout with Ashleigh. With her now being 4, she understands more. Tonight she was crying when we put her down to bed, asking who's "fault" it is her leg is broken. She said it makes her sad and she wants to "run away". She also apologizes for feeling pain. This is hard for us. These things are taking more of an emotional toll on Ashleigh as compared to before. The physical pain is hard enough. Now, the emotional pain is an ongoing concern.

Other news: We did not get accepted into the experimental antibody study. The study director would not take Ashleigh because she did not have a measureable tumor (yet). Our oncologist was not happy. We are very disappointed. We are looking into other potential treaments/experimental studies. But, this brings other difficult decisions. Do we want to take Ashleigh to New York for a month (for example) to participate in a treatment that no one knows if it will work. This would keep her away from home, enjoying her family/life, and keep her in a strange hospital feeling crappy.

We have made a few decisions about treatment. We will likely go with radiation to the lesions and an oral chemo to try to slow down the cancer and prevent pain. We are also looking into other options to try to address the bone destruction and try to catch other lesions earlier, before she fractures more bone.

Although we were only in the hospital 32 hours, it felt like 32 days. Thanks to Anna and her mom Heather. They were in and really brightened Ashleigh's spirits. Anna gave Ashleigh a few gifts, made her a mobile and a picture, and shared candy with her. That helped a lot.

We plug along. Things do not get any easier. Next week will include an ortho appointment for follow up, meeting with the radiology oncology people to set up radiation, and meeting with our oncologist to hammer out plans.

I'll probably update after the weekend. Take care and thank you for your support.

Thursday morning - Oct. 6, 2005

A QUICK AUNT ANGIE UPDATE: A few people have asked for a quick update from the surgery and since Amy & Jeff are still at the hospital I thought I would update. Ashleigh did great in the surgery yesterday. The surgery lasted longer than expected - over 5 hours. They took out her broviac (noodles) and replaced it with a port - this will now allow her to go swimming -yay. They put a rod in her left leg and cemented the two Neuroblastoma bony holes/lesion areas. Unfortunately the one lesion up by her hip bone grew within the last two weeks and was now the size of the original lesion down by knee. They ended up having to put screws into her knee - apparantly during surgery her leg broke around her knee -the bone is just so compromised. So it all took longer than expected but she made it through just fine. She is in more pain than the last surgery but she is awake and eating - hopefully they go home today. They are still discussing treatment options and trying to come up with a game plan. She may start oral chemo and radiation as early as next week. Thank you to everyone for your prayers and for thinking of Ashleigh so much. She is a beautiful girl and such a sweetheart - she has touched so many lives.

Love,
Aunt Angie
















Hi everyone,

I hope you all had a good weekend. We did! You know, Ashleigh is still alive and feeling good. So, we are having fun.

We made it up to Alpena Thursday evening. Friday was a big day. We went the the homecoming pep assembly at Alpena High. Ashleigh and Ryan had a great time. Ashleigh especially liked the Wildcat mascot (Romeo Bourdage) and the cheerleaders. Ryan liked everything especially when he was wandering in the hall at the school and stopped three high school girls to say "hi".

Ashleigh rode in the homecoming parade and threw candy to the kids. She loved that. Thanks to Rome for setting that up. Friday night we went to the football game.

Saturday we went out to Grandma Kelly and Binka's to pick pumpkins. Ashleigh loved eating pears straight off the tree and really enjoyed the practive of throwing the core on the ground after she was done (country living). That afternoon we watched the MSU - U of M football game. The outcome was not good. But, it was fun watching Mom jump up and make blocks during the game. Saturday night we went to the 19th hole for a party for Great Grandpa McDonnell's 84th birthday. Everybody had a great time.

Sunday morning it was out to Grandpa Dinger and Esther's for a boat ride on Grand Lake. It was beautiful.

It was a great weekend in Alpena. It's so nice, peaceful, and beautiful there. It was hard to come back to Grand Rapids. The weekend was a nice diversion. We didn't think about the upcoming week or cancer very much. Coming home today brought us back to the challenges ahead of us.

We are scheduled for surgery on Wednesday. The new challenge is trying to get Ashleigh in the experimental antibody study. Conversations with our oncologist Wednesday brought new concerns. The people running the study need to have some markers or indicators to measure if the treatment is working. That brings up more difficult decisions in Ashleigh's case. Specifically, we had planned to use bone cement in the two current lesions and a rod so she could walk. There is a possibility the study people may demand one lesion remain untouched so we have something to measure potential progress. The concern is if we don't intervene on the lesion, Ashleigh could have another fracture, more pain, and not walk again. If we intervene, we could be out of the study. We will be talking alot with the doctors tomorrow to try to figure out what to do. These decisions do not get any easier.

Take care all. Keep us in your positive thoughts and prayers.

Tuesday, September 27, 2005 11:22 PM CDT

Hi everybody,

Today we met with the ortho doc. Ashleigh had her purple cast cut off and now she is in a brace, toe to groin. This is much better. It is removable for baths and has a hinge in the knee. She should be able to ride her bike again. Good news was x-rays of both legs did not reveal any new lesions. This is good because we do not need any more fractures.

The ortho doc came up with an interesting plan. He wants to inject bone cement into the bone lesion in the distal femur (where the bone was destroyed) and the beginning lesion in the upper thigh. He has never used bone cement with a kid. It is usually used in people who have hip and knee replacements. He also wants to put a rod in the middle of the bone, cemented in at each lesion. Sounds radical. It is. The result would be Ashleigh would be able to walk again. The down side – some risks and her bone would not grow normally. She may not have the opportunity to grow that much. We are going to do it. We want her to walk again. Especially, if she only has months left.

We met with the oncologist later in the day. Yea, it was a long day. The first thing is we are removing her broviac and placing a port. A port is a central line in her chest, used for blood draws, infusions, etc. The good thing about a port is that it is under the skin. When it is accessed, a needle gets placed in it. The great thing is Ashleigh could swim and have a regular bath. She loves to swim. She has not been able to go swimming in almost 16 months. The surgeries would be coordinated and occur next week.

Treatment: We haven’t made our final decision yet. We ruled some treatments out. We are considering the experimental antibody treatment. Our oncologist is going to find out more about the side effects. We may try it. The big danger is the common side effects of fluid retention, lowered blood pressure, and abnormal kidney function. If you recall, that almost did her in during the bone marrow transplant. We will learn more this week. If we decide to go with the antibody treatment, we will have to begin within the next 3 weeks. A big concern is if we try this and the side effects end her life, we will be kicking ourselves because she could have had a few good months. This will be a tough decision.

By the way, Ashleigh is feeling great. She is eating well, having no pain, and has adjusted to her lack of mobility surprisingly well. It even looks like she has gained a little weight. Ryan will start daycare a few days a week. This will get him out of the house and interacting with other kids. As well, this will give Ashleigh and Amy quality time together. This is all exhausting for Amy and I. But, we are kind of getting into “the zone”, willing to do anything for our kid and exhaustion is not an option for us.

We are getting out of town again for some Alpena time. I have to figure out how and when I can work. We have to pay our bills. Also, we continue to lean on people helping us when Ashleigh has appointments and hospitalizations. Aunt Peggy has saved us. We are lucky to have great family support. We are also lucky to have all of you for support. Thanks.

Enough for now. I’ll update after the weekend. Take care all. Hug your kids.

Saturday, September 24, 2005 10:42 PM CDT

Hi everyone,

Sorry it took me a few days to update. Things have been rough here. The results of the bone biopsy confirmed there is active neuroblastoma that appears to be attacking bone tissue. The reason it did not show up in the other tests is that it hasn’t clumped into tumor yet. It’s too busy moving around attacking bone.

We are having a sample sent off for a second opinion. There is also a question if tuberculosis is present in the bone and accounting for or contributing to the bone destruction. This question will be answered by cultures that are growing and the input of an infectious disease doc who will be brought in on the case.

So, what do we do now? I met with our oncologist Friday to get information and talk about our options. Amy and I have a lot to talk about. We will meet with him next week to discuss a plan. Her disease is very aggressive. Unfortunately (?), it is attacking bone and not organs at this point. That makes for a very painful and potentially drawn out disease progression. In Ashleigh’s type of situation, the average amount of time left is 8 months (with treatment). That can vary widely, as this disease manifests and develops differently in each kid. The big question is; how many of these months will be good months?

We are discussing a few of our options. With how her disease is manifesting (in her bones), our options are limited. There is one experimental antibody treatment available. There is really no research data to indicate if it will even help. This would be an attempt to cure it. The side effects are a big issue, especially with her kidney issue. The other option is palliative care, which would attempt to extend life and slow the progression of the disease and associated pain. The options vary. Some involve chemotherapy, radiation, etc. What is difficult is examining the side effects and trying to decide if it will be worth it to Ashleigh. (i.e., Do we want her to be feeling very sick, but get a few extra months?; Do we want to just take advantage of what time we have and do minimal treatment?, Do we want to try a risky treatment while she is feeling good and what if something goes wrong?, etc.) These are all very complicated and difficult questions.

We will see the ortho surgeon Tuesday to discuss using a bone cement. This could help to eliminate a large cast and potentially give Ashleigh more mobility and comfort. We also will be talking and working on removing her Broviac so she can go swimming.

At this point, we really are not sure what we are going to do. This experience is surreal. Sometimes it’s unbelievable, other times it’s horrible. It’s always overwhelming. So many questions run through your mind. Why? What do we tell Ashleigh? How is all of this going to affect Ryan? And, there are no simple answers (that make sense) to any of the questions.

We thank you for your support, prayers, and positive thoughts. I’ll try to update next week.

Thursday, September 22, 2005 4:11 PM CDT

Where do I start…
A lot has happened since my last entry.

Tuesday, we had the MRI and the results were not good. Most of the docs were convinced the MRI showed cancer and there was a new smaller spot up higher, on Ashleigh’s thigh. If not NB, maybe another type of cancer?

Amy and I had a big decision to make. We could opt for a bone biopsy. This would involve surgery where they would remove a portion of the effected bone and test for cancer and all kinds of other things. If it was cancer, this bone would probably never heal and Ashleigh would spend the remaining few months she would have, being in a cast and not being able to run and play. Or, we assume it’s cancer, skip the bone biopsy and let her try to enjoy herself for the next few months.

Ashleigh was already hardly walking at all and having some pain. We went for the bone biopsy. We had to find out what is going on. She underwent surgery yesterday afternoon at 4:30 pm. Surgery last 1.5 hours. When she came to she was in a lot of pain. Morphine finally took care of that. She now has a full length leg cast. The cast will be on a minimum of 6-8 weeks.

The ortho surgeon met with us and said what he found when he went in was “weird” and “very interesting”. He said he expected to find tumor (cancer). What he found was a bone that had basically deteriorated into mush or as he called it “like soup”. He said he was very surprised with this and does not know why/what this is.

All the samples were sent off to pathology. If it is cancer, we will know Friday. If it’s something else it may take a few more days to see what the cultures grow out.

We came home today around 12:30 pm. Ashleigh has a purple cast from her groin to her toes. There was some novelty to the cast at first. She liked the way it looked. That wore off quickly. She is just starting to realize she will not be able to walk or ride her bike. This is devastating for her and for us to witness. What’s really terrible is if this is indeed cancer, the bone won’t heal and she probably did her last walking and bike riding.

We will get a waterproof/removable cast in a few days. This will help if/when we pull her broviac. Then, we will be doing a lot of swimming.

We now have a wheelchair for Ashleigh and a walker. In a few days, we may try to teach her how to use the walker. She wants to walk and get around so badly. Fighting cancer and our other complications were bad enough. Now this? Whatever it is? This is really getting hard to believe or even comprehend.

We wait. We will meet with our oncologist tomorrow to go over some of the results. And, we try to figure out how to explain all this to Ashleigh. She doesn’t deserve this.

I’ll try to update when we learn more. Take care all.

Wednesday, September 14, 2005 10:55 PM CDT

Hi everyone,

Well, Ashleigh tricked the doctors again. The MIBG results were negative for Neuroblastoma! We are so relieved. The oncologist even spoke with the radiologist to discuss the results and they decided there is "defnitely not Neuroblastoma". We don't know what the lesion in the bone is, but it's not NB.

We will get an MRI next week and possibly have to do a biopsy to figure out what is going on. Our oncologist said that after we figure out what is happening in the leg he wants the Broviac to come out. That will be another huge day.

Ashleigh is walking. Her (extra) limp seems to get better at times.

Leave it to our kid to not present the typical pattern or symptom picture, fooling everyone. The x-ray looked like a relapse occurred. But the urine, CT, and MIBG rule it out. Now, we will have a new potential complication to deal with. But, it's better than where we thought we were going.

Tonight we even had a little celebration. Aunt Angie and family, Grandpa Dinger and Esther, and Grandma Kate were here for dinner, cake and ice cream, and a few presents for Ashleigh.

Thanks again to everyone for your support, positive thoughts, and prayers.

I'll try to update next week.

Tuesday, September 13, 2005 11:58 PM CDT

Hi everyone,

Quick update.

Today Ashleigh had her CT scan and saw her oncologist, Dr. Dickens. She did great during the "circle picture".

The results were interesting. They were clear, no tumors, no evidence of disease.

Now, don't get too excited. It really was not that surprising, since her urine was clear. The CT scan is not the most sensitive. It will find tumors or other obvious signs if present. The really big test is tomorrow. The MIBG specifically looks for neuroblastoma.

Ashleigh will have the MIBG tomorrow morning and we should hear back by early afternoon. If NB is present, we will have lots of discusion with our oncologist and many decisions to make. If the results indicate NB, the prognosis is rather grim in our case in the long run (2 years). If the results come back clear, then we would get an MRI to see why her bone appears to be degenerated. That will be the ortho docs job.

Let's hope for just a serious orthopaedic complication and not cancer.

Thanks again for all your support.

Take care all, another sleepless night at our house.

Monday, September 12, 2005 11:15 PM CDT

Hi everyone,

Here is an entry to describe how much fun Ashleigh had during our amazing 2 days in Alpena.

The trip starts out fun before we get to Alpena. Ashleigh gets very excited to stop at "the tunnels" in Houghton Lake. Actually, it's the Kid's Playland at the Burger King there right off the express way. It's about half way on our trip. She loves to crawl up in the playset and yell down, telling us which color (of tunnel) she is in.

When we got to Alpena Saturday, we went out to Grandpa Dinger and Esther's and took pizzas out to lake and went on a pontoon ride. Great Grandma and Grandpa joined us along with Grandma Kate and Grandpa Bill. The sunset on Grand Lake was awesome.

Sunday was quite a day. Grandpa Dinger and Esther took Ashleigh on her first plane ride with Mom and Dad up to Mackinac Island. Just before we took off, Ashleigh said, "Dad, this will be so cool, like the Care Bears!" (flying through the clouds). She really loved the plane ride and was not scared at all. On Mackinac Island we took a carriage ride into downtown. Ashleigh cracked everyone up in the carriage when she announced the horses had "really big butts". We had lunch downtown, bought fudge and a sweatshirt, and took the carriage back to the airport. On the flight back we flew low over "The Wreck" (family cottage) and Great Grandpa and Grandma were on the beach waving. That afternoon and night we had dinner at the Wreck and were joined by Grandma Kelly and Binka. Ashleigh and Ryan had fun playing in the water and at the bonfire at night.

It was quite a weekend. Our kid had a lot of fun. Amy and I almost forgot about how big this week will be. When I woke up this morning, I started to remember and my stomach has been doing flip-flops all day.

Tomorrow we will do the CT scan and Wednesday is the MIBG.

Keep sending positive thoughts and praying!

Friday, September 9, 2005 11:42 PM CDT

Hi everyone,

It’s been a very stressful week.

Amy took Ashleigh in to the ortho doc Wednesday to get the limp checked out that I mentioned in an earlier entry. The x-rays showed a stress fracture in the lower left femur. The x-rays also showed a distinct dark spot in the area. The doctor said it looked a lot like relapsed Neuroblastoma. This was devastating. She couldn’t confirm it from just an x-ray. We were told there is a slim possibility it could be something else besides cancer. We met with our oncologist that afternoon to discuss a plan and potential options if Ashleigh’s cancer has indeed relapsed.

The plan is/was to start the testing for cancer immediately. This would begin with the 24 hour urine collection. This test is very sensitive to detect neuroblastoma. They would also try to get the other tests moved up to as soon as possible.

We also had a talk about potential options if the cancer is back. Our oncologist told us the cold, hard fact that the survival rate for relapsed neuroblastoma is 1-2%. With Ashleigh’s kidney problems, we probably could not do aggressive treatment. We also talked about how long she would live without treatment and the gory details of passing away from neuroblastoma. We have been/are emotional wrecks.

Today we waited for results from the urine testing. The results were strange. There are two basic indicators of NB. One indicator was normal. The other was slightly elevated, not enough to indicate widespread disease. This did not give us a definitive answer if the cancer is back or not. We will have to wait for the testing that will occur on Tuesday and Wednesday this coming week.

So, positive thoughts and prayers are sorely needed. This new development is devastating. Ashleigh is also very upset her leg is not better. She can still walk. But she is having pain and limps. It’s so cruel that if the cancer is back – she will not be able to run around like a kid and enjoy the short time she will have left because of this fracture and potentially more to come.

What do we do now? We are heading up north for a little Alpena time. I don’t know how/when I’ll be able to work. We were so close to normal…

Things look grim. There is a small chance this could be another complication rather than relapsed cancer. The chance is small. But, it’s better today than yesterday. We will know this coming Wednesday.

Take care everyone. Thanks for your support. Keep those positive thoughts and prayers coming.

Tuesday, September 6, 2005 11:20 PM CDT

Hi everyone,

Good stuff and a new worry...

We had planned to go to Alpena for the holiday weekend. But, Grandma Kate came down with the flu and we didn't want to expose Ashleigh. We were all very bummed.

We stayed in Grand Rapids and ended up having a great weekend. Friday we met Aunt Angie, Uncle Steve, Alex, and Quinten at Michigan Adventure (amusement park) Ashleigh had a great time riding on all the rides with Alex. She tried to act tall and get on a rollercoaster. But, they wouldn't let her on. She took it in stride.

Saturday it was out to dinner and over to Aunt Angie and Uncle Steve's. We went to a playground and Ashleigh, Ryan, and Alex had a lot of fun.

Sunday, out to Ashleigh's cottage. We had people out and Ashleigh had a lot of fun playing with friends. She stayed up with mom and dad by the fire that night and snuggled in a blanket on mom and dad's laps while watching the fire.

Monday, more friends out to visit. Ashleigh caught a fish with her new Barbie fishing pole. Her buddy Caleb stopped by. They had a great time catching "weed fish" from the boat as it was tied to the dock.

We did a lot over the weekend as we try to extend our summer as long as we can.

The new worry is Ashleigh began limping a week ago. Limping is a symptom of Neuroblastoma. So, Amy and I are pretty freaked out. Remember, we had a period of limping several weeks ago. It went away in a few days. This time it doesn't seem to be going away. It is not consistent though. Today she only had a slight limp (in addition to her regular limp). We will be seeing the ortho doc tomorrow to have it checked out. We are seeing oncology next Wednesday and will likely begin testing for relapse.

So, this new worry is tough for us. Ashleigh was getting a little upset by her trouble walking this weekend. That was hard for us to see. Let's hope it's just an orthopedic problem and nothing more. I guess we might know a little more tomorrow. Next week we will begin to know a lot more. Like I said in the last entry, this really isn't getting any easier.

Take care everyone.

Tuesday, August 30, 2005 11:15 PM CDT

Hi everyone,

Sorry so long since last update. I guess it's kind of nice that I have to save up things to update once a week. Rather than every day because things are not going well.

Friday the clinic appointment went smooth. Numbers looked good. Accutane was finished friday. FRIDAY, ASHLEIGH OFFICIALLY ENDED HER CANCER TREATMENT. It's been almost 15 months. Can you believe it? Amy and I initially thought we should have some type of celebration. But, the reality of this disease hits us. We will have a celebration June 7th, 2009 when she is officially cured (5 years post diagnosis).

Ashleigh will remain on one medication to help prevent any gall type stones in her biliary system. This may stop if her triglycerides lower. They are likely elevated due to the Accutane. Also, we are dealing with skin sensitivity and fungal issues - likely an after effect of the Accutane.

We managed to have another great weekend! Saturday we went to the Hemoc/Oncology/BMT picnic. It was very nice. There were over 400 people there. Ashleigh saw some of her clinic friends - Anna, Kaitlyn, Sarah, and Lily. Also many of the clinic/unit staff and docs were there. Ashleigh and Ryan both had a blast. The event was really well done. Thanks to Colleen of PORT and everyone else involved. It was great!

Sunday we spent the day at Ashleigh's cottage. Aunt Angie, Uncle Steve, Alex, and Quinten came out. Again, the kids all had a great time

Today we had a nephrology appointment. That went well. Ashleigh's kidney is not functioning perfect. But, the numbers keep getting better. The nephrologist said he has no immediate concerns in regard to her kidney function. He now is thinking about how to get her kidney to last until she is 15 years old before a transplant is needed. That is a huge improvement compared to where we were a few months ago. He doesn't need to see us back for another 3 months. We are happy.

We plug along trying to enjoy life. Amy and I continue to worry. The September testing weighs heavily on our mind. The results could allow us to approach a normal life again or send us down a bad road. This doesn't get any easier.

Lots of good news this time? I'll try to update next week some time.

Take care.

Wednesday, August 24, 2005 12:30 PM CDT

Hi everyone,

Sorry no recent update. Thanks to Aunt Angie for putting up the new pictures!!!

This past weekend went well. The forcast called for rain all day Saturday. So, we didn't make it out to the cottage. Of course, the forcast was wrong and it never rained.

Saturday Ashleigh went to see her first movie in a movie theater - "March of the Penguins". The movie was okay. A little different than what we expected. Ashleigh was amazed at the size of the movie screen. She enjoyed her experience and wants to go back soon.

Grandma Kate was in town this past weekend. Of course, Ashleigh and Ryan had a blast. Mom and Dad were able to sit down a few times.

Sunday, we went to a Whitecaps baseball game with Aunt Angie, Uncle Steve, Alex, and Quinton. Ashleigh always has fun when she spends time with her aunt/uncle/cousins. Her and her cousin Alex are becoming good friends. On the way home from their house recently, Ashleigh was exhausted and under the effects of her Accutane (emotional). She was crying and saying "I love Alex so much! I want him to be with me all the time!" Of course, her statement was also accentuated with the common statement (when upset) : "I miss Caleb!"

Great weekend overall. The kids had a good time.

This week, Ashleigh, Ryan, and mom have been spending time at the cottage - trying to get more time in before the cold weather hits. In fact, she is probably playing in her sand pile right now.

We have 2 more days of Accutane left. Ashleigh's face and lips are really peeling and dry. Her ears also itch alot. She was scatching them so much, they were bleeding a little last night. Weight remains the same. Appetite has been hit. But, Mom is good at getting Ashleigh to eat. Newest food: "rainbow ice cream" - every night.

Friday is a clinic appointment. Ashleigh's testing for the cancer relapse is scheduled for the third week in September. Amy and I are already freaked out.

Please send your prayers and positive thoughts to Ashleigh's friend Molly. She relapsed with her Neuroblastoma a few months ago. She will begin the chemo today for her second bone marrow transplant. We hope this will do the trick. Molly is a very sweet kid with a great family. Her mom (Michelle) has always been a great support for us and Amy and her compare notes constantly. This has helped a lot.

I'll probably update after the weekend. Saturday is a picnic for the Hemoc/Oncology and Bone Marrow Transplant Programs. We plan to attend - if numbers look good on Friday.

Take care everyone.

Thursday, August 18, 2005 11:50 PM CDT

Hi everyone,

Quick entry before the weekend.

This week has been uneventful - like we like it! This past Sunday Ashleigh went out to her cottage to help Dad cut the grass. She had a lot of fun chasing butterflies and runnning around "...like Pocahontas". Ryan's fever went away over the weekend. That was a relief.

Ashleigh went out to Caleb's house to play Monday night. They had a lot of fun. She loves her buddy Caleb. The rest of the week Ashleigh has been helping Mom with things around the house, the shopping, and taking care of baby brother Ryan. We are seeing the effects of the Accutane. But, they're not too bad. Mom does a great job taking care of Ashleigh's skin. Her face is just beginning to peel.

Tuesday, Ashleigh went with her brother to help him at his 15 mth. doctor appointment. He had to get two pokes (shots). Of course, Ashleigh is an expert at pokes. Also, it gave Ryan's pediatrician (Dr. McMahon) a chance to see Ashleigh. He stopped in to visit Ashleigh and offer help several times during her transplant and ICU stay. He has also been great about squeezing Ryan in to his schedule if we had any concerns. He's been a great support. I think he liked seeing Ashleigh doing so well.

This weekend Grandma Kate will be in to visit. We will be out to the cottage. I hope the rain holds off. Next week there will be a clinic appointment at the end of the week.

Take care everyone and have a good weekend.

Saturday, August 13, 2005 4:45 PM CDT

Hi everyone,

Quick update.

Clinic went well yesterday. Numbers looked good overall. No major events or concerns. Ashleigh started her last round of Accutane this morning. She will be on it for two weeks. We are starting to schedule the routine scans to test for relapse. These will take place in September. No clinic or appointments next week.

We are planning a layed back weekend at home. It's cloudy and potentially rainy. Baby brother Ryan has been battling low grade fevers the past few days. His pediatrician thinks it's some type of virus thing. So, we are disinfecting everything constantly and worry about him. We get very worried at our house about low grade fevers with no obvious cause.

Ashleigh is happy and doing well. Her weight still remains about the same. She went with mom and got two new pet fish this morning (Apple and Kissy). Kissy is doing well. Apple croaked after about 10 minutes in the fishbowl. Dad went back to the pet store during Ashleigh's nap. The new Apple is doing fine.

Things are going well (knock on wood). Let's hope our semi-normal life continues.

Take care all.

Tuesday, August 9, 2005 11:50 AM CDT

Hi everybody,

Ashleigh had a great time this past weekend at her cottage. Saturday, we had the Donakowski and Hier families out. Ashleigh had so much fun playing with Abby, Elle, and C.J. Ryan just kept walking up to little Maggie and saying “Hi Baby” (she will be 1 y.o. in a few weeks). It was so great so see her have fun playing with other kids, giggling with the other girls, and having serious conversations at the kid’s table about topics like what everyone can do on their swingsets. To see her do normal kid stuff was awesome. That night we also had a bonfire with smores. I think everyone had a great time, perfect weather, lots of boat rides. We made more great memories.

This weekend Ashleigh also caught her first fish off the dock. Sunday morning she caught two bluegill and a rock bass. She was very excited. She is quite the fisherman. We kept the fish for the day and when someone would come to visit (Aunt Angie/Uncle Steve/Alex, Aunt Peggy/Uncle Mike), Ashleigh would take them out on the dock to show off her fish.

The end of last week and the weekend started out with a new concern and worry. Ashleigh started limping a little Thursday night. She had fallen on a knee just before bed Wednesday. Friday she was limping bad and we considered canceling Saturday. This was very scary for Amy and I. Limping can be a symptom of a tumor relapse or a fracture from possible cancer involved in the bone. Also, if you remember, limping was Ashleigh’s initial symptom of her cancer last year. We were pretty freaked out. Saturday morning the limp was still quite bad. Throughout the day, her limp got better. By the evening, she was running around with the other kids. We didn’t know what to think. Amy and I both had knots in our stomachs for days.

Yesterday, (Monday) we had an appointment with the ortho doc. Good timing. Ashleigh was not limping or complaining of pain. The x-rays and exam did not reveal any fractures and there was not visible evidence of cancer. So, that was a relief. I guess she just hurt her knee from falling. A normal kid thing. Normal is hard for us to determine sometimes. So, now we are back up on the roller coaster.

We continue with our fun summer. For the next gathering at Ashleigh’s cottage, we will probably invite the Marchlewski and Kaminski families. Ashleigh loves having people out and playing with the kids. Friday brings a routine clinic appointment and the start of the last round of Accutane. Hope for good numbers and no surprises. I’ll try to put on a quick update after.

Take care everyone.

Tuesday, August 2, 2005 11:25 PM CDT

Hi everyone,

WOW... What another great weekend in Alpena. Where do I start?

Saturday was a fun filled day at The Wreck. Ashleigh and Ryan had a lot of fun. She was able to spend time with extended family - Uncle Micky and family, Aunt Peggy and family, great grandma and grandpa, Grandma Kate and Grandpa Bill. Ashleigh ran so much on the beach she could hardly walk that night. We also did a lot of riding on the 4 wheeler, playing in the water, and a bonfire with smores at evening.

Sunday was out to Grandpa Dinger and Esther's place on the lake. We had a boat ride when the rain cleared up. Ashleigh drove the boat again, beeped the horn alot, and played the music loud.

Monday morning we went out to Binka and Grandma Kelly's. This included a visit to Binka's friend Larry to see his deer. Larry has several deer he raises. Ashleigh was excited when they ate the carrots she brought.

Monday night was a trip to the Alpena County Fair. After a lot of fun in the animal barns - Ryan called every animal a "kitty" - it was off to the midway. Ashleigh was not very interested in the rides for little kids. She spotted the ferris wheel and wanted to go on it. So, she took Dad on his first ferris wheel ride. I was a little nervous, it didn't even phase Ashleigh. She wanted to go on all the big rides. Of course, she was too small for them. They let her on about half of the ones we tried. This included three turns on the Tilt-a-Whirl. She loves speed and heights!

Of course, Ashleigh had a great time staying at Grandma Kate's house. She kept finding these new Beenie Babies stashed everywhere. She kept saying "Where are they coming from?" Ashleigh thought about it and decided a "fairy godmother" was leaving them for her.

Another great weekend in Alpena and a nice mini-vacation for our family.

This week, no appointments. Next week includes ortho doc appointment on Monday and clinic on Friday.

Take care everyone.

Tuesday, July 26, 2005 10:40 PM CDT

Hi everyone,

We had a great weekend at Ashleigh's cottage. Uncle Mike dropped a huge mound of sand on the beach area this past week. Ashleigh had a lot of fun playing on her "mountain" and Ryan had a lot fun rubbing sand in his hair and occasionally eating it. We were able to enjoy a boat ride and smores by the bonfire. We spent our first night there. It was nice. The lake is so peaceful in the morning.

Today things went well at clinic. Actually, very well. The numbers all looked very good. The nephrologist told us to hold Ashleigh's remaining kidney med before labs today to check her CO 2 level. It came back normal. After a phone call to the nephrologist, the last of her kidney meds was stopped! Now, she still has a damaged kidney. But, we are very happy that it is stable enough at this point where she doesn't need meds. Of course, that could change with the next nephrology appointment. Ashleigh will start on an anibiotic. She has had a sinus infection for the past two weeks.

Accutane will stop by the end of the week. Ashleigh's weight remains the same.

This coming weekend will be a lot of fun. We are heading up to Alpena for another mini-vacation. Uncle Micky and family are in from Texas. We will be spending time out at "The Wreck". Also, I'm sure Ashleigh will want to drive Grandpa Dinger and Esther's boat again. Hopefully, we will have good weather. Also, we are planning to go to the Alpena County Fair. Amy and I both loved the fair when we were kids. This will be Ashleigh's first fair in Alpena. We are excited.

Ou fun summer continues. Hopefully, no major events.

Take care everyone.

Friday, July 22, 2005 11:45 PM CDT

Hi everybody,

This week has been pretty low key. We like it that way. Ashleigh actually put on a tiny bit of weight at one of her nightly weigh-ins. We still need to her to put on a little more. But, her appetite seems to have improved a bit lately.

Tuesday, Ashleigh hooked up with her daycare buddies for a field trip to the children's museum. She had a good time even though she was a little cranky from her Accutane.

Tomorrow we will get up early and go to Ashleigh's cottage for the weekend. She is very excited. The weather is supposed to great tomorrow. Hopefully, the whole family will get to relax a bit.

Next week (Tuesday) brings a routine clinic appointment. I'll try to update soon after.

Otherwise, nothing else to report. We continue to be focused on enjoying our summer!

Take care everyone.

Monday, July 18, 2005 11:05 PM CDT

Hi everybody,

Great weekend. Angie will be putting up pictures soon.

We had Ashleigh's birthday party Saturday at her cottage. Her best friend Caleb was there. Ashleigh had a blast. She received lots of nice gifts. But, what she enjoyed the most is having everyone there. She really loves family get togethers.

Grandpa Dinger and Esther brought a boat and the kids enjoyed boat rides. It rained a little, later in the afternoon. But that didn't stop Ashleigh and Caleb from having fun running in the rain. Ashleigh, Caleb, and cousin Alex all had a great time playing. Ryan just roamed around talking and hugging everybody. It was a little stuffy (humidity) in the cottage during the rain. But, I think everyone had a good time.

We also made it out to the cottage on Sunday to clean the place up and have dinner. We all love our little get-away.

This week will be low key. We are still trying to get Ashleigh to put on weight. Tomorrow, Ashleigh and Mommy might meet up with her daycare pals at a field trip to the children's museum.

Next week we will have clinic again. Otherwise, Amy and I remain nervous. When things are going so well and we see Asheigh having so much fun - we get worried, expecting something bad to come out of no where. That is hard to get past. We have been through alot over the past 13 months.

Everyone take care.

Thursday, July 14, 2005 12:05 AM CDT

Hi everybody,

Things have been going fairly well. We had a little bit of a scare on Tuesday night. Ashleigh had a low grade fever for about an hour and a half. We think it may have something to do with the cold she and her brother have shared and recently passed on to Mom and Dad. A low grade fever may not seem like a big deal. But, with our situation, you get very worried quickly about what could happen.

Yesterday clinic went well. Numbers looked quite good. Normal white blood count (8000) and platelets almost normal (130,000) - the highest they have been since November.

Today was the nephrology appointment. Numbers looked okay. No major problems. Weigh continues to be an issue. The nephrologist would like to see her about a kilo heavier. The appetite stimulant we are now using does not seem to be working. The nephrologist said we wouldn't have to come back for another 6 weeks. So, that's good.

Tomorrow, Ashleigh starts round 5 of Accutane. She will be on this for 2 weeks. We're ready for the mood swings, peeling face and lips. Unfortunately, the Accutane also seems to hit her appetite. So, that will be a cause for concern.

This weekend we are having Ashleigh's birthday party. I think we will be having it at the cottage. Hopefully, we will have good weather. We went out there last night to cut the grass. Ashleigh and Ryan love it there.

So, we plug along, focused on having a fun summer. We want to have as much enjoyment as possible before the next round of cancer testing in September.

Take care all and have a great weekend.

Monday, July 11, 2005 11:15 PM CDT

Hi everybody,

We had a great weekend at Ashleigh's new cottage. She played outside at the beach area and walked in the water. She also had a lot of fun fishing off the dock. She didn't catch any bluegills. But, she was very happy catching "weed fish" (weeds). The cottage is a perfect fit for our family. Ashleigh and Ryan absolutely love it there. Grandpa Dinger and Esther are letting us borrow a boat for the summer which will arrive this coming weekend. So, that will even add to the fun.

Tomorrow is a big day for Ashleigh. It is her 4th birthday! She is very excited to be 4. We will have cake and a small celebration (just the 4 of us) tomorrow. This coming weekend is her birthday party. She is very excited about that. Lots of family will be at the party and best friend Caleb as well. We are not sure if we will have the party at the cottage yet. That may depend on the weather.

Other things: Weight is holding steady. Ashleigh ate well today. She has been feeling great and playing hard. Wednesday we have a routine clinic visit and Thursday is a nephrology appointment. Hope for good numbers.

I'll update after the appointments this week.

Take care everyone.

Thursday, July 7, 2005 11:05 PM CDT

Hi everyone,

Great, awesome vacation! We got back yesterday.

Where do I start.

We rolled into Alpena Friday afternoon. That evening we went downtown to an event where there was a band and fun things to do. We left and went to a great playground on the lake. Ashleigh, Ryan, and cousin Alex had a great time. Ashleigh especially liked chasing the seagulls.

Saturday it was out to the lake. We spent most of the day on the beach at Amy's family cottage, "The Wreck". It's my favorite place on earth. The weather was perfect. Ashleigh had a lot of fun walking in the water and playing in the sand. Ryan was not too impressed with chilly Lake Huron. But, he enjoyed playing in the sand and exploring on the beach. We also enjoyed a bonfire and smores that evening.

Sunday was another day of great weather. We spent the day at Grand Lake with Grandpa Dinger, Esther, Aunt Angie, Uncle Steve, and Alex. Ashleigh loved driving the boat. She couldn't swim. But, she made the best of it by walking and playing in the water. Mom and Dad were nervous. But, no accidents and the Broviac stayed dry. It's amazing how cautious she is and careful not to get her "spagetti noodles" wet.

Monday was the 4th of July. It was rainy. We went to the parade and Ashleigh had a great time. She sat on my lap, ate candy and Pringles, and had commentary on every float. That afternoon we were out to The Wreck for a family dinner. Even though the weather wasn't great, everyone still had a great time. That evening, we watched the fireworks from Grandma Kate's driveway while Ashleigh ate barbeque chips (the new 'in food').

Tuesday was dinner out at Binka and Grandma Kelly's house. We also stopped in to see Grandpa Bill at work on Tuesday.

We spent 5 great days in Alpena. Ashleigh and Grandma Kate had a lot of quality time. She and Ashleigh had a sucker and grapes before breakfast every morning. Ashleigh ate well. Her weight was the same when we got home. This was surprising, given how much we we were on the go. Five days has been the longest we have been away from Grand Rapids since she was diagnosed. We were nervous. But, no problems or events. It was so nice to be able to do the things we love to do up north. We missed out on all of this stuff last summer.

Tomorrow, Ashleigh will get her new cottage. We will probably spend some time there this weekend. Although, we don't have a boat yet. Maybe this weekend Ashleigh will learn how to fish for bluegills off the dock.

Next week brings a routine clinic visit and a nephrologist appointment. Hopefully, only good news and no big concerns. I'll keep you updated.

Have a good weekend.

Thursday, June 30, 2005 12:25 AM CDT

Hi everybody,

Good numbers in clinic today. We are headed up to Alpena tomorrow for a well deserved vacation. We just got done packing. Two kids and a week up north requires a lot of packing. I shouldn't say "we". Amy did most/all of the packing. I just followed orders and tried to get things ready before we leave.

Ashleigh's numbers today looked very good. Our kidney is still hanging in there. Her liver calmed down. So, nothing in the labs today that made us nervous. We still can not relax. With the year we have had, it's hard to not expect or worry about what is going to come out of nowhere and knock you down again.

But, we are headed up north! Yea, the grandparents are excited. I can't wait for time on the boat and the Alpena Fourth of July parade. It's quite an event. Also, we usually bump into old friends and that's nice.

So, enough for now. Time to get some rest. I hope you all have a great holiday weekend.

Take care.

Monday, June 27, 2005 11:30 PM CDT

Hi everybody,

Where do I start. There has been a lot going on - mostly good.

We heard back from the ortho doc today. We received good news. She said the growth plate in the leg is "open". That means Ashleigh's leg is still growing and their is no evidence of growth arrest. This is huge! Any other result would have meant orthopedic surgeries over the next several years. We are so relieved. We will still be followed by ortho to make sure everything is fine. Her leg bones are still healed at funny angles. She has the cutest little limp. But, the doctor is optimistic her legs will eventually grow back or "model" to more normal angles.

Weight and eating: We have lost a little more weight. Ashleigh was down to 13.2 kilos (29 lbs.) yesterday - skinny girl. Eating was slightly better tonight. We still have to push her to eat. But, that's getting better. Her appetite stimulant has not kicked in yet. We would like to see her start gaining weight soon.

We had a great weekend. It was very hot outside. Mom bought Ashleigh a new bathing suit. She picked out a fun sprikler. We covered her Broviac site and "spagetti noodles" with Saran wrap and Ashleigh enjoyed playing in the sprinkler with Ryan and cousin Alex.

Big news in our family's life. Our goal for this year is to have a great summer. We did not have much of a summer last year. Ashleigh loves the water and the cottage up north. Unfortunately, we can not drive the 4.5 hours every weekend to go to Alpena. We kept thinking; wouldn't it be nice to have a cottage down here to spend our weekends and have a change of scenery and pace (hospitals and doctors) when we are not up north. Something close to home. Close to the hospital!

So, what did we do last week? Well, I'm using some of my 401k and we bought a cottage 30 minutes from our home. Yea, I know it's crazy. But, we are kind of in the mode of 'live for today'. Besides, early retirement is probably over rated and Amy was offered to start some part time consultant work.

Ashleigh and Ryan absolutely loved it at this cottage and I think it will bring us alot of good family time.

Routine clinic visit on Thursday. Hope numbers are good and we are able to head up to Alpena for the 4th of July weekend.

I'll try to put up a quick update after clinic.

Take care everyone.

Thursday, June 23, 2005 12:07 AM CDT

Hi everybody,

Sorry so long since my last update. It's been pretty busy (not in a bad way) around here lately.

Tuesday the nephrologist appointment went well. Actually, the labs showed Ashleigh's kidney function appears to be improving. This is quite surprising. She is now only on one kidney medication and the doctor cut this in half. She is no longer on blood pressure meds. Her blood pressure has been great. We know we have a damaged kidney. Her labs are not perfect. But, we are happy for the time being with how things are going with this issue.

We have not heard back from the ortho doc about the hip/leg issue. She is out of town all week. In some ways, we are okay with that. We are worried and expecting bad news. So, not getting the results for a while is okay with us.

The big issue now is Ashleigh's weight. She has been losing weight. She is now 13.6 kilos (almost 30 lbs.) She has lost about 4.5 lbs. since before her surgery. The nephrologist is concerned too. Ashleigh will start back on an appetite stimulant this week. She tries hard to eat and we encourage/reward her. But, her eating isn't cutting it. Time will tell I guess. We are waiting for her to turn the corner on this issue and take off like she has so many times before. We don't want to get into discussions about placing a tube for feedings. That would not be good. Amy has a few other ideas/strategies to try in order to help. Amy saved her from a feeding tube in the past. Let's hope that can happen one more time.

We are in the middle of the Accutane. We are seeing that happy one minute and crying the next. But, we are used to it and so is Ashleigh. We plug along.

Ashleigh has been happy overall. She, Ryan, and Mommy have been spending a lot of time at the school playground near our house. Tonight, Ashleigh and I weeded the garden. She is such a hard little worker. We had fun.

The weekend should be layed back. No out of town visitors and no big plans. Maybe it will be relaxing. Relaxing...? What's that like?

Take care everyone and have a great weekend.

Sunday, June 19, 2005 10:24 PM CDT

Hi everyone,

Busy and fun weekend for our little munchkin.

Friday Grandma Kate came into town. She had to watch Ryan Saturday so Ashleigh could go to Caleb's mom's wedding. I think Angie will be putting up pictures. She was very excited to wear her new pink dress "with roses on it". She looked so adorable we just couldn't take it! The wedding was great. We are so happy for Jenny (Caleb's mom) and Caleb who gets a Dad and a sister. Ashleigh was able to spend a little time with Caleb. Although, he was very busy with his duties as a ring bearer and knocking down chairs in the parking lot and generally just running around having a good time.

Today (Sunday) we woke up and met Aunt Angie, Uncle Steve, Alex, and Quinten at the zoo. We had a lot of fun feeding ducks and we got to see a new exhibit with wallabies ("baby kangaroos"). Ashleigh also visited her old favorites - the bears, tigers, penquins, fish, and of course the monkeys. She and Ryan both had a lot of fun.

Overall, Ashleigh is doing well. She is feeling good. Although a little cranky, possible due to the Accutane. We still have to be on her to eat. She is doing better though. Her weight is stuck at 14 kilos (30.8 lbs). She looks okay. But, we would like to see a little more weight on her. Being overnourished will help the kidney last longer.

This week brings a nephrologist appointment on Tuesday. Otherwise, no other appointments. We should hear some news about the leg this week.

Take care everyone.

Wednesday, June 15, 2005 11:05 PM CDT

Hi everybody,

Quick update.

Great news today. Ashleigh had her MIBG (a scan that detects neuroblastoma)today. The results came back all clear, no evidence of cancer! She is still officially in remission. That was a huge relief.

Tuesday was a routine clinic visit. Overall, Ashleigh's numbers looked awesome. No major worries. Her platelet counts even made it over 100,000 for the first time in several months. Her bone marrow is working.

Tomorrow Ashleigh will have an MRI of her leg in the hip area. If you remember, the ortho doc was not sure if Ashleigh's fractures through the growth plate had completely recovered. I do not anticipate we will get feedback/results immediately. If the growth plate has not recovered, we are looking at orthopedic surgeries beginning soon and occuring every few years as she grows. That would be a bummer.

Our girl seems to be feeling well and has been happy. A big issue is still food. She is not eating well yet. Amy and I have to stay on her to eat. Tonight she did clear her entire plate. As a result, Daddy had to do a "crazy dance" that included throughing myself over the couch, getting a great round of laughter from Ashleigh and Ryan. What you will do to inspire your kid! ha ha ha

Take care

Sunday, June 12, 2005 10:51 PM CDT

Hi everyone,

Great weekend. Although, it started out a little scary.

Friday Ashleigh went into clinic for a quick check of labs. Some of the labs were off and concerning. Ashleigh saw the doctor and she has a urinary tract infection. That added another medication (antibiotic). Also, another medication to sort of help out in the bile duct system was added to get a particular lab indicator down. This needs to be down be the next round of Accutane can start.

Friday night Ashleigh started complaining of her tummy hurting and she vomitted. We were about ready to pack the bags again, thinking we might need to go back to the hospital. She got nauseous one other time. Saturday things seemed to improve. She was eating a little and denied her tummy hurt. Amy and I suspected she still had a bit of tummy pain. But, she denied it. She did admit to her tummy hurting "a little bit".

Saturday, our friends Tom and Laura were having people over. They have a pool. We decided to go and talked to Ashleigh a lot beforehand. We knew there would be kids there swimming and we were worried Ashleigh would be sad because she couldn't go in. She loves to swim. She did great and had a good time. She still interacted with the kids - she was prentending to catch them like fish with these big floating rod things. She even asked if Ryan wanted to go in. So, that was nice for everyone. We were able to go out as a family and see our friends again. We have not been able to be very social the past year. We're lucky to have great friends.

Today Ashleigh seemed to be feeling very good. She is now walking almost as well as before she went into the hospital. We are just working a lot on the eating. She has lost a kilo (2.2 lbs) since her surgery. We have to stay on her to eat, so she doesn't lose anymore weight.

Overall, it was a great weekend. We needed it. This coming week includes regular clinic visit, MIBG (a scan that looks for neuroblastoma), and an MRI of her leg fractures. The MRI will be big. This will give us an indication if the fractures in the growth plate of her femur by the hip have "recovered". If not, we are looking at starting orthopedic surgeries in the near future.

So, it will be a busy week. I'll update in a few days.

Thanks to everyone for their support.

Thursday, June 9, 2005 10:50 PM CDT

Hi everybody,

Guess what? WE'RE HOME!!!

Amy got all her ducks in a row and made the case for why we should be home. The doctors were convinced and Ashleigh was discharged this afternoon. We were in for 13 days.

Ashleigh has continued to improve. The belly cramps stopped yesterday evening. She slept great all night. She was eating some, not a lot, but some. Her labs were okay - no major problems. So, they let us out.

It is so nice to be home. Ashleigh was so excited about going home, she couldn't take a nap today. Early bedtime for our tired girl. Ryan and Kitty are very happy she is home.

Ashleigh is hooked up to IV fluids tonight. No big deal. Most 4 year old girls have stuffed animals, dolls, books, etc. in their rooms. Ashleigh has all of these plus an IV poll and infusion pump. It's been there next to her bed for several months. No big deal, it's decorated and part of the decor of her room. ha ha

Ashleigh is walking better. She walked a little around the house today without help. This will improve over the next few days I'm sure. She ate better tonight. Overall, she keeps a slow and steady progress.

Tomorrow, Ashleigh will be back in clinic for a quick check of labs to make sure things are still okay. We are planning to enjoy a quiet and private weekend at home.

Take care all.

Wednesday, June 8, 2005 10:05 PM CDT

Hi everybody,

We continue to make slow but steady progress.

Ashleigh was able to keep everything down yesterday. She didn't eat much; but at least it went in the right direction. The doctors also heard very strong bowel sounds yesterday - a sign things are up and running. Our surgeon saw us yesterday and explained everything he is seeing with Ashleigh and how she is not showing any signs of anything wrong or any serious complications. He basically went through everything with us and really put our mind at ease. His name is Dr. Uitvungt. He's a wonderful man. He did both of Ashleigh's surgeries.

Last night, Ashleigh had cramping that kept her up on and off between 11 pm to 2 am. But the cramping is actually less intense and less frequent now. It's still no picnic.

Ashleigh ate better today. For dinner, she had 5 bites of yogurt, 5 goldfish crackers, a bite of chicken, and a bite of turkey. That is actually more than she has eaten in the entire 12 days total. So, that's good. Baby steps.

She has been walking better. She still can not walk on her own and tires easily. Her body has been through so much in the past year, she isn't able to bounce back like she did in the past.

At this point, if things continue how they are going, we may be discharged Friday. That would be exactly a two week stay.

Ashleigh is getting to the point were she needs to get out of the hospital. She is starting to have a few of her mini nightmares, saying "No,no, no!" in her sleep.

She is having some enjoyment in between the belly cramps. She has created quite a collection of spin art paintings and spent more time in the playroom tonight.

So, send those positive thoughts and prayers for us to get out on Friday.

Update in a few days.

Monday, June 6, 2005 11:10 PM CDT

Hi everyone,

Last night Ashleigh was up with more of what appears to be cramps/spasms in her gut. Poor kid. I crawled in bed with her at about 3 a.m. to rub her back to get her back to sleep. She battled these cramps/spasms all day. The bowels are definitely up and running. That's a good sign. Surgery cleared Ashleigh to start taking in liquids and "clear" food (i.e. jello, applesauce). She ate a few bites of jello tonight with apple juice. However, she threw everything up. So, that was disappointing. Maybe tomorrow will be better with eating.

Amy and I are starting to get a little worried about the cramping stuff. The surgeons do not seem to be very worried yet.

Ashleigh's spirits were fairly good today. She is a trooper. She was laughing for the first time in over a week. Her walking has also improved. She spent some time painting in the playroom today. However, the belly pain became intense and she wanted to go back to her room.

Mom and Dad are trying to keep their spirits up. Amy and I are so saddened with what Ashleigh has to go through AGAIN. And, the weather has been so nice. Our little girl is stuck in the hospital again. I'm home tonight. Mom has the night shift. I had to weed "Ashleigh and Daddy's Garden" alone again. I miss my little helper.

Guess what tomorrow is? The one year anniversary of Ashleigh being diagnosed. Can you believe it? Not a happy anniversary. What a year it has been.

Enough for now. I'm exhausted. I'll try to update tomorrow or the next day. Don't get worried if I don't update tomorrow. I may have lost my laptop at the hospital.

Take care everyone.

Sunday, June 5, 2005 10:01 PM CDT

Hi everyone,

Today went well. We removed the NG tube this afternoon. Ashleigh is very glad to have that thing out. Also, we jump started the bowels and things are starting to move. The rehab begins again. We took a good walk tonight and their is some improvement in this area. We are still a long way from her walking on her own.

This afternoon and tonight, Ashleigh has been having rather intense gas pains/possible spasms. This is to be expected given the gut has been shut down for a week, all the morphine she received, and the type of surgery. These pains will probably be waking her up tonight. It will probably be a long night. I hope this problem passes soon.

We saw more humor and joking today. She even called me "Fancy pants Daddy" - another little joke we have. Ashleigh even laughed for the first time in a long time today.

So, we continue to make slow progress. We hope there are no major events. We have now been in the hospital 10 days so far. This week we will focus on the rehab of the walking, eating, and bowels. We are not sure when we will be getting out. I hope we can get out before next weekend.

Take care all.

Saturday, June 4, 2005 10:40 PM CDT

Hi everybody,

Ashleigh had a good night last night - no fevers and she slept well. She even woke me up at 4 a.m. to go potty. She still isn't up to the early a.m. Care Bear videos yet.

Today, slight improvement but she was still pretty miserable all day. We removed the drainage tube from her side today. That was not fun. I'll spare you the gory details. It was nice to get that thing out. Hopefully she will have less pain in that area tomorrow.

The NG tube is really bothering Ashleigh. I think it's starting to become painful. Best case scenario - it will come out tomorrow. That depends on a few things. More likely, it will hopefully come out Monday. I think after it comes out, Ashleigh will be start feeling much better.

Even though Ashleigh was miserable most of the day, we did see a few positive moments. She even smiled for the first time in several days. A little bit of her humor came out. She was lying there looking unhappy. I was cleaning up the room. She said "Daddy". When I turned around she said "Your butt's on fire". So I had to run over to the sink to put my butt out. It's one of our little jokes. Ashleigh also went to the playroom for a short time and worked on some puzzles. She works so hard to walk. She is still in a lot of pain. But, we keep telling her she needs to move in order to get better.

Hopefully, all is peaceful tonight. We're kind of back into that "baby step" mode of improvement we relied on during the intesive care stay.

Take care everybody.

Friday, June 3, 2005 8:04 PM CDT

Hi everyone,

Yesterday afternoon and last night were a little rough. Yesterday morning, Ashleigh was doing fairly well. After she woke up from her nap, she was having more pain and was not interested in doing anything, even watching videos/TV. We knew she was not feeling well.

The NG tube tends to cause a lot of irritation. Ashleigh was coughing up a lot of flem, gagging, and having dry heaves. Of course, whenever she coughed, she was in a lot of pain. Even with morphine, she was miserable with fitful sleep.

Amy and I noticed her heart rate was creeping up in the early evening. Around 11 pm her heart rate climbed to 180 and the doctors were called in. She also started running a fever. We gave her Tylenol for the fever and we had to ride it out. It was a long night.

Things improved a bit today. No significant fevers. There were less dry heaves. Still, Ashleigh needed a fair amount of Morphine to get through the day. She did sleep well today. We also got her up and made her walk. She is a long way from walking on her own yet. She has to get moving to help healing. Also, if she lies in bed alot, her lungs could be affected. We don't want to go down that road again. Ashleigh also had a bit more interest in things. Still not a lot of talking. She told Amy she isn't talking because of the tube down her throat. So, overall there was slight and steady improvement today.

Hopefully, the night will be peaceful. Ashleigh is watching a video right now and seems fairly comfortable. She promised me we would play a competitive game of "Go Fish" tomorrow.

We will be in the hospital for a while. Then the rehab process again. I think getting her back to walking, eating, and pooping (on her own) will be challenging. But, we have rehabbed her how many times already? Our nephrologist keeps calling this "a bump in the road". Let's hope he's right and things will be back to our "normal" soon.

Have a good weekend everyone and thank you for your support.

Thursday, June 2, 2005 12:23 PM CDT

Hi everybody,

Thanks to Aunt Angie for putting on an update. She had all the details. Sorry this is somewhat repetitive.

Ashleigh is doing okay. The surgery went well. We didn’t have the greatest outcome. It could have been better- it could have been worse. They think they got all the stones. However, they had to cut through part of the intestine to get the stones lodged in the bile duct. They also had to flush stones out of the pancreas and take the gall bladder.

The surgery took about three hours. Ashleigh has a drain tube and bag to pull any fluid off the area of the intestine where they cut through. She also has an NG tube through her nose. This goes down her throat and into her stomach with a suction to make sure nothing/very little gets into her digestive track. The tube will also help any potential vomiting. They basically went in the same place as they did for her tumor surgery a year ago. The incision is about 5-6 inches long.

Overall, she is doing well given what she has been through. She is getting morphine for pain. She is mostly not happy about the NG tube. The tubes will probably be in a week, until things heal. We are also watching a lot of the labs to make sure the other organs continue to work properly. She wants to drink, eat ice, and eat popcicles. These are all off limits for now.

So, Amy and I are trying to keep her comfortable. Obviously, she is not in a great mood. She also battles dry heaves. These aggravate the healing areas and the pain is bad. She still has her feistiness. She will not go in a diaper and insists we put her potty seat on the bed and lift her on to it. Hopefully, her spirit and fight continue and get us out of here early. We will probably be in the hospital a minimum of a week to ten days.

Enough for now. I’ll try to update again soon.

Oh, I almost forgot! The results of the urine tests did NOT show any evidence of the cancer back. That was a huge relief. We are still officially in remission.

Wednesday, June 1, 2005 10:14 PM EST

Aunt Angie's Entry...

Hi Everyone - I wanted to do a quick update for Jeff & Amy tonight. Ashleigh's surgery is over and the stones are all out!!! They took her in at 1:00 PM and worked for about 3.5 hours. The first 2 hours they worked on the large stone stuck in her bile duct -they ended up not being able to get it out without cutting through her intestines - it was just too big and it was really stuck. We are happy they did not have to cut through the bile duct - it was not the best case scenario as we were hoping he could blow the stone through or get it to pass on its own, but overall it was the next best option. Once they got that stone out , they proceeded to take her gall bladder out - there were approximately 13-14 stones in her gall bladder. The Dr. was not able to biopsy her kidney just due to the complications of getting to that organ. He did not notice any Neuroblastoma cancer anywhere (Thank you God!). Her incision is quite large and her recovery will be approximately 1-2 weeks. They inserted a drainage tube around the site of the incision to drain fluids off and they also inserted an NG tube through her nose. Both of these tubes will stay in for a few days until her intestine heals and she can start eating on her own. She was out of recovery & back to her room around 6:30 PM and Amy & Jeff said that she is comfortable on morphine - she is not full awake yet but she is responding to them. Thank you all for your prayers - they are so much appreciated. We are all hoping she recovers quickly and gets back on her feet again so she can play in the sun and take a trip to Alpena this summer. I am going to try & download some new pictures!

Love,
Angie

Tuesday, May 31, 2005 1:23 PM CDT

Hi everybody,

Quick update.

We are having surgery tomorrow. There isn't anyone the doctors know of who they are comfortable with doing the procedure on Ashleigh at any other hospital. Also, the labs this morning indicated we need to move on this thing now.

So, tomorrow will be a big day. The surgery will probably be complicated. Hopefully, the surgeon will be able to get the stone out without cutting the bile duct.

Ashleigh is still in fairly good spirits. The novelty of staying at the hospital is starting to wear out a bit. She was started on TPN (IV nutrition)because she has not really eaten since Thursday. No news back on the urine testing for cancer yet.

We forge ahead and continue to be very worried. I'm also not looking forward to holding her hand while they put her under tomorrow. I've had that experience. It was probably the worst experience of my life.

Positive thoughts and prayers are needed. I'll try to have Angie put on an update tomorrow.

Monday, May 30, 2005 10:40 PM CDT

Hi everybody,

Last night went okay. Ashleigh slept well. She stirred a little. But, no major problems.

Today, the ultrasound revealed the stone is basically stuck in the same place. Ashleigh had two incidents of nausea today. However, they passed quickly. She continues to be in good spirits most of the time. Her sense of humor is still there. She woke me up at 4:07 a.m. for Care Bears video this morning.

We are still waiting to formulate a plan. Tomorrow (when everyone returns to work) our oncologist and his resident will be calling around to see if anyone can do the ERCP procedure to remove the stone. We have been assured that tomorrow we will have a plan. Also, we will probably get results back from the urine to test for cancer indicators. Tomorrow will be a long, rough day.

Wish us luck. I'll try to get an update on tomorrow.

Sunday, May 29, 2005 8:55 PM CDT

Hi everyone,

Last night went very well. Ashleigh slept very good and no pain. She even woke me up at 5:23 a.m. to go potty and repeat the ritual from our last time we were in. That includes watching a 20 minute Care Bear video and eating ice. She thought she was so funny. After the video she went right back to sleep and didn't wake up until after 8:30 this morning.

Today, she felt good all day. She tried to eat a little more. No vomiting or stomach pain (so far - she is sleeping). The latest labs suggest the stone has not been passed. But, there is no pain. No one quite knows what to think yet.

Tomorrow is a big day. We will have an ultrasound to check were the stone is and talk a lot about a potential plan. One possibility that came up today is potentially looking at other hospitals that could do the procedure to remove the stone from the duct, possible Detroit. But, since this is a holiday weekend, we won't know if anyone can or is willing to do it until Tuesday.

So, we wait and hope some luck comes our way.

Gotta run, Ashleigh is stirring a little. I hope it's not a bad night.

Saturday, May 28, 2005 9:43 PM CDT

Hi everyone,

Well, we’re back on the rollercoaster again.

Thanks to Aunt Angie for putting on an update. As Angie said, Ashleigh started feeling sick Wednesday. She started vomiting Thursday night. Yesterday, she probably threw up 6-8 times. She was also jaundiced.

Friday morning we went to the hospital. The initial labs showed elevated liver enzymes. The liver was not happy. That’s why Ashleigh became jaundiced. She also became dehydrated from all the vomiting. Over the course of the day and into the evening it was testing, trickles of information, more testing. One initial concern was that her cancer relapsed and there was a tumor pressing up against the liver. Ashleigh had a CT scan last night about 9:30. The idea of a potential tumor was ruled out. Thank God. However, the CT scan and an ultrasound showed the gall bladder was inflamed and a gall stone was blocking a bile duct. Basically, the stone left the gall bladder and was stuck in the bile duct. This gall stone was likely formed due to the medications she has taken and possibly the long ICU stay contributed.

Today, more trickles of information, doctors consulting with other doctors, and potential plans of attack. When this happens with adults, it’s an easy procedure where a tube/scope is basically used to go in (down the throat) all the way through and open up the blocked duct to allow the stone to pass. However, there are no instruments available that are small enough to do this procedure on a 4 year old.

So, what are our options: She will need surgery. If the stone passes on its own – they will go in a take the gall bladder so this doesn’t happen again. If the stone does not pass, the surgeon will go in take the gall bladder and cut the bile duct open to take the stone out. If we go with option 2, Ashleigh will likely have a stint and shunt placed. The shunt will be a tube to drain bile. This will drain into a bag outside of her body. The shunt will probably be in several weeks until the bile duct is healed.

Where are we now: The surgeon does not want to place the stint and shunt. So, he said we will wait. The hope is the stone will pass. Monday, we have another CT scan and we will likely make a decision then.

So, the last few days have been hell. I don’t know what a gall bladder attack feels like, but I heard they are extremely painful. Ashleigh was definitely in a lot of pain. It was terrible to see her suffering again. She has been feeling so good the past few months. She was exhausted and basically did not sleep for two nights. She really has not eaten in the past 36 hours. Everything she would eat or drink would be vomited.

Today: Today was interesting. Amy and I were stressed. Ashleigh was tired but feeling good. Yea, that’s right. Last night she got some good pain medication and slept 5 hours. Today, she would not eat (3 spoonfuls of Jello) and had sips of water and apple juice here and there. But, no major attacks of pain and no vomiting. I don’t want to get too excited or optimistic. We will see what tonight and tomorrow brings. Let’s hope she has passed or will pass the stone. Regardless, she will have surgery before we leave. Hopefully, just the basic gall bladder surgery. Another thing, we decided to start the cancer testing while we are here. We are doing the 24 hour urine collection right now. That’s a very sensitive indicator if the cancer has relapsed. So, that will have Amy and I worred.

I’ll try to update tomorrow. The hospital let me use a laptop tonight. I’m not sure if one will be available tomorrow.

Take care everyone. Positive thoughts and prayers needed. I need sleep now. It’s been a long three days and next few days will probably not be easy.

Friday, May 27, 2005 11:12 PM EST

Aunt Angie's Entry -Friday Night

Ashleigh has been admitted to the hospital today. She had nausea that continued to get worse this week along with leg and joint pain that was bothering her. Last night she started throwing up and she was very sick. She went to the hospital at 10:00 AM. Jeff can fill in on the details, but they did an ultrasound & a CT scan which was completed around 9:00 PM. We just received the results that she has gall bladder stones and she will have surgery tomorrow (we don't know what time yet). We are so relieved that this was not something worse -thank goodness - what a sigh of relief for us that have been waiting today for bits of information to come in from Amy & Jeff. My Mom came here to take care of Ryan and between her and myself we are keeping all the grandparents updated in Alpena. I feel so bad that Ashleigh did not get to take her trip to Alpena -she was so looking forward to it - poor pumpkin. Please say a prayer and send positive thoughts that her surgery goes well tomorrow.

Love,
Aunt Angie

Tuesday, May 24, 2005 10:38 PM CDT

Hi everybody,

Clinic went very well today. It was a short visit with no major (well, new major) worries. Ashleigh's numbers looked very good. Especially since she just finished Accutane Sunday. The Accutane usually hits her numbers.

Ashleigh's white cell count was up to 4600, up from 4000 two weeks ago. 5000-10,000 ins normal. Platelets hung in there, down slightly. This is good because the accutane usually hits these hard. Hemoglobin was down slightly (9.8 from 10.0 two weeks ago). This is good, given Ashleigh has kidney disease. So, overall we and the oncologist were happy. Ashleigh was a little miffed she had to go home right away. She missed her friends at clinic. Next appointment is in 3 weeks. That's weird. Three weeks... Wow, we never thought we would see that much time between appointments.

Back at home, we continue to have fun. Ashleigh and I planted the garden tonight. We call it "Ashleigh and Daddy's garden." We planted corn, peas, beans, carrots, and green onions (for Mom). Ashleigh worked hard and insisted on planting every single seed herself. I was impressed by her stamina.

This weekend we will be going to Alpena for a long weekend. Hopefully, it won't snow (ha ha) You never know when you go up North. Actually, we hope to get out on the boat with Grandpa Dinger and Esther. We will see all the Grandparents.

It will be nice to be back in Alpena. It's such a mello place and it's so awesome to literally drive 1 minute and your looking at Lake Huron. We miss it.

Take care everyone and have a good holiday weekend.

Sunday, May 22, 2005 10:55 PM CDT

Quick update as follow up to Friday night's entry.

The nausea and elevated blood pressure went away! Ashleigh felt great all weekend, had energy, and had a lot of fun. Saturday, she and Ryan had pictures taken together. They're very cute. I'll put one up on the website when they are done.

So, good weekend. No major events. Tuesday will be routine clinic appointment. I am really curious about what her numbers will look like. We have not been to clinic in two weeks. I'll update after the visit.

Take care everyone.

Friday, May 20, 2005 10:45 PM CDT

Hi everybody,

Quick update...

The nephrologist appointment went rather well. Ashleigh's kidney numbers were slightly better. Not perfect, but not going in the wrong direction. The nephrologist said he thought she looked "awesome". Even though we are still dealing with kidney disease, he said she is doing very well, given all the things she has been through. So, things seem to be stable with the kidney problems at the current moment.

All the cancer testing is scheduled for the second week in June. We will probably do the 24 hour urine collection the week before. The urine collection is a sensitive indicator to assess if the cancer is back. So, that will be a rough week, waiting for results.

Everything has been great since the last entry. Then, things got a little worrisome tonight. Ashleigh has not been feeling well most of the day. She was nauseous tonight and almost vomitted a few times. Also, her blood pressure was a little elevated. Of course, Amy and I think of the worst case scenario. We are also racking our brains trying to figure out what is going on. When these little things happen, your mind goes to all the bad things that could happen. They all start out with what seems like little things. We saw that in some of the kids who met with a bad outcome.

So, tonight it will be hard to sleep. The rollaway bed is in Ashleigh's room. One of us will sleep there tonight.

We never get a chance to breathe and enjoy. We're sort of too traumatized and we have seen too much with all the time we spent in the hospital.

I'll update after the weekend.

Take care everyone and have a good weekend.

Monday, May 16, 2005 10:42 PM CDT

Hi everyone,

What a weekend.

Friday was the trip to daycare. Ashleigh was very excited the night before. When we got to daycare, things were a little overwhelming at first. I think she forgot how loud and crazy things are there. She took a bucket full of suckers to hand out. At one point, she was also a little confused. When she last went to daycare, she was in the toddler room. Her buddies have all been promoted to the pre-preschool room where she would be if she was still enrolled.

After a while, Ashleigh became more acclimated and enjoyed herself. She spent some quality time with her friend Natalia. They sat and watched a video together. Natalia rubbed her back and told Ashleigh she liked her new hair. Natalia is a sweet kid. Caleb talked with Ashleigh. But, he was very busy rough housing with the older boys. Ryan walked around like he was a regular there and constantly pointed to all the artwork on the wall saying, "What's that?".

Overall, things went great at daycare. Ashleigh said she would like to go back there all day. She asked when her "spagetti noodles" will be coming out so she can go back to daycare.

Saturday: We read the invitations wrong. We had Abbe Hier's party at Bounce Party on Saturday and Caleb's party Sunday morning. Ashleigh had a blast at Abbe's party. She definitely had energy and she laughed a lot. Her strength was pretty good too. Bounce Party has all these inflatable slides, tunnels, etc. Ashleigh and Daddy climbed everything and played hard. I am still sore today, wow.

Sunday was a lot of fun too. Ashleigh was very happy to see her Caleb. She kept following him around. And, she was able to get some good tickle-chase time in. We hit the tunnels and slides again. I could tell she was a little tired from the day before. That was all right with me because I was 'Ibuprophined' up and still exhausted from the day before. ha ha

Overall, a great weekend. Ashleigh's Accutane has made her moods a little unstable at times. She gets very emotional at the drop of a hat. But, she is coming out of her emotional times better. Her face is really starting to peel. Appetite is still good.

No clinic this week! However, we see the nephrologist Thursday. It looks like we will be doing all the cancer testing and MRI of the hip after Memorial Day. In the past, Amy and I would probably be pushing to get them done more quickly. But, we really are not looking forward to that week and are trying to enjoy ourselves now.

So, things are very good. The nephrologist appointment will be interesting. Hopefully, no bad news.

Take care all.

Wednesday, May 11, 2005 10:55 PM CDT

Hi everybody,

The latest includes lots of good news and some worry.

Monday, Ashleigh's appointment with the ortho doc went well. Ashleigh was a trooper with the x-rays. The doctor feels the fracture through the growth plate above the knee on the left leg is totally recovered and the angle of the bones will eventually model back to a more normal position without surgery. The leg fractures in the hip area are the new concern. The doctor said she really can not tell if the fractures through the growth plate in this area are totally recovered. She seemed disappointed. We will have an MRI in the next few weeks to get a better idea. We are not sure what we will do if the growth plate has not recovered. We definitely will need surgery, likely quite soon. Then possible orthopedic surgeries every few years while she is growing. We won't know for sure until the MRI results come back.

Now, the good news. Tuesday, clinic went very well. Ashleigh's counts jumped up again. Her white blood cells were over 4000 (5000 - 10,000 is normal). Her platelets jumped again to 89,000 (over 120,000 is normal). That's a 20,000 jump in the past week on top of the 20,000 jump the week before. Hemoglobin slightly down, but no big deal. Kidney labs looked good again. Dr. Dickens was pleased and thinks we are heading in the right direction. So, now we do not have to come back to clinic for two weeks. Moving to every two weeks is huge and very weird. Remember when we were in three times per week or more? That wasn't that long ago.

Ashleigh's ability to fight infection is also on the rise. Therefore, Amy is going to take her to visit her friends at Daycare on Friday. She is so excited! She has been talking about it all day today. Ashleigh has not been able to visit since November. She said she thinks Natalia will not recognize her with her "hair different". We assured her that her friends will remember her. So, that will be a huge day coming up. We are so happy for her.

The weekend will also bring more of Ashleigh's social life back. Saturday, she will go to Caleb's birthday party in the morning and Abbe Hier's party in the afternoon.

It is so nice to have bits of normalcy come back into Ashleigh's life. Amy and I still have a hard time, worrying and anticipating that with things going so well, something bad is lurking around the corner. The cancer testing protocol will be scheduled for the week after next. That will be a rough week for us.

I guess we won't relax until Ashleigh turns 8. At that point, she would be 5 years post diagnosis and considered "cured". We will be able to deal with kidney transplant and orthopedic surgeries if we can beat this cancer. Only time will tell.

Everyone take care and thanks for all the support. Next update after the weekend.

Sunday, May 8, 2005 11:05 PM CDT

Hello everybody,

We had a great weekend!

Big Ryan ("Rhino") had his first birthday party Saturday. It was lots of fun. He really didn't know what was going on - but he seemed to enjoy himself.

Ashleigh had a great time. She was very happy for her brother and worked hard to help with the getting ready for the party. She had me put a stool next to the sink so she could wash all the fruit for the fruit salad. She loves to help. She takes a lot of pride in being able to do things on her own.

The party was great. Perfect weather and Ashleigh got to spend time with all 3 sets of grandparents as well as her great grandparents. This morning, Ashleigh helped to make breakfast for Grandma Kate, Grandpa Bill, Grandma Kelly, and Binka. Pancakes and Polish sausage (imported from Alpena - "Perch's") - what a great feast.

Tonight, it was off to the playground. In the past two weeks Ashleigh's thighs have sort of reappeared. She had great muscle in her legs before she got sick. She was very athletic. So, on the playground equipment tonight, she put those legs to the test. She must have been 5 times stronger than the last time we went to the playground 2 weeks ago. She was able to climb up the stairs to the slides. I had to carry her up last time. This was nice to see.

This week brings an appointment with the orthopedic doctor tomorrow. Ashleigh will get x-rays of her leg and hip. Hopefully, they will show the bones have healed well and we will not need eventual surgery. Remember, two of the fractures were through growth plates and there was concern she may need surgery if they did not recover. Tuesday will be the routine clinic appointment. Accutane starts tomorrow. This will run two weeks.

So, things are going well as can be expected. Thanks to everyone again for your continued support.

Wednesday, May 4, 2005 11:25 PM CDT

Hi everybody,

Yesterday, clinic went great. Ashleigh's platelet count has been stuck at 51,000 for two weeks (normal platelet count in over 120,000). Yesterday we saw a jump up to 69,000! This is good and an indication that the bone marrow may be doing what it is supposed to do (finally). Her hemoglobin was down slightly and the white blood cells were up a bit. Hopefully, we are heading down a good road and all the counts will continue to rise.

Also, Ashleigh's kidney labs were normal. This is the first time this has happened since she was diagnosed with kidney disease. Now, don't get too excited. These were only labs from the blood. I'm sure her kidney labs from her urine are still a mess. Nonetheless, we see this as a small victory.

So, yesterday the clinic visit was short. No time for lunch with Dad. Ashleigh and Mom went to order Ryan's birthday cake and do some shopping for his birthday party.

Ryan is 1 year old today. We are having a birthday party for him on Saturday. Ashleigh is very excited. She has been helping Mom with all the preparation.

Another story of our child with her good soul: Today was Ryan's birthday but we will celebrate it with the extended family Saturday. Ashleigh thought we should still have a cake for Ryan today. So, she decided she would make her brother a cake in her Easybake oven. Isn't she incredible? We had the cake Ashleigh made tonight after dinner. It was good and Ryan liked it too - two bites and throw it on the floor and lean over the side of his chair pointing at it. Ashleigh is such a caring and giving person already, she is not even 4 yet.

More sobering news about one of Ashleigh's friends from clinic. Anna is 7 (I think). She has a type of lung cancer. Sweet girl, very nice and dedicated parents. She and Ashleigh have become friends. I read on her website tonight that her chemo doesn't appear to be working to shrink her tumor any more. She was almost to the point were her intense chemos were done. On top of this, there has been concern some of the chemo meds have caused her brain damage. This is another case that doesn't make sense, does it? So, please send your positive thoughts and prayers to Anna.

Take care everyone. I will probably update after the weekend. I haven't said this in a while - hug your kids.

Monday, May 2, 2005 10:45 AM CDT

Hi everyone,

Sorry I’m late on the update. Busy, busy, busy.

Good weekend again. Grandpa Dinger and Esther were here. Ashleigh had a lot of fun with them. She also got to see her new cousin (Quinton) quite a bit. She is so cute. She is really into Quinton. When we are around him, she wants to hold him a lot. We prop up a pillow and she sets there holding him with the sweetest look on her face. She strokes his arm and talks to him. It is awesome. Not awesome enough for Amy and I to talk about having another baby though! Ha ha. We are getting too old and we already have enough going on.

Ashleigh continues to gradually feel better and slowly get her strength back. This week she started her frequent wrestling matches with Dad. Before she got sick, we used to wrestle every night. It’s a lot of fun and she always seems to win. She will be playing or reading books, then will abruptly say, “Dad, I want to wrestle you”. More of our old kid is coming back.

Amy and I continue to be nervous. Things have been going so well. We are enjoying it. But, with what we have been through and just the nature of this cancer, you anticipate something bad will happen. I guess we each have our good days and bad days with this issue. Sorry, today is not a good day for me. I am so worried at times.

Tomorrow is the routine clinic appointment. Hopefully, numbers look good. Maybe a short clinic visit and visit Dad at work and go to lunch!

Take care all.

Wednesday, April 27, 2005 11:24 PM CDT

Hi everyone,

Things have been going great. Tuesday Ashleigh's numbers looked stable. Not great, but stable. The kidney labs showed slight improvement. We will not have to be back to clinic until next Tuesday. Horray!

It has been nice to have Ashleigh off the Accutane. Her moods are better and her appetite is back full bore. She also has increased energy. This lowers our worries (a little bit) that something bad is looming or was beginning to happen when we saw less energy and lowered appetite.

The big news: Today, Aunt Angie had her baby! Quinton Stephan was born this morning, weighed 8 lbs. 1 oz., 20 inches long. Mom and baby are doing fine. Ashleigh, Mommy, and Ryan went to see him when he was about 2 hours old. Ashleigh was very excited to meet her new cousin. Tonight, when we went for another visit, Ashleigh held him for a long time. She was stroking his arm and kept talking about how "cute" he is. I have a great picture of this. But, I don't know how to put it up on the website. Angie usually takes care of that. Maybe it will be up in a few days.

It was nice to go to the hospital tonight and get off the elevator on a happy floor. It was kind of strange though because Angie's room had the same view as our room in intensive care. Basically, we were in the same room, 2 floors lower. That was wierd at first - like a flashback. But all the joy in the room helped to orient us back to happiness of the 6th floor.

Grandma Kate is here. She will stay with us for the next two days, then stay at Aunt Angie's to help out. So, Ashleigh will have a blast the next two days. Hopefully, she'll have time for mom and dad. ha ha ha

Things are great at this moment. We will enjoy.

Take care.

Sunday, April 24, 2005 11:10 PM CDT

Hi everyone,

Very good weekend!

Friday morning Ashleigh's knees had nasty deep bruises from crawling around on playground equipment. This is a sign of low platelets. So, we ended up taking her in to clinic for a check of numbers. Her platelets were the same as Tuesday (51,000). So, no transfussion needed. That put our mind at ease for the weekend.

The weekend was uneventful. The weather was bad. So, we spent most of our time indoors. Ashleigh was able to help Dad with the grocery shopping. That was fun for us. She is such a great helper. Ashleigh and I would do the shopping every Saturday morning in the past. It was kind of our job together. She had not been to the grocery store since October. Funny, how you can miss (and now cherish) the tasks of normal living when you are faced with what we have been fighting.

Ashleigh's second round of Accutane was done today. We are glad. One of the side effects is mood swings. She has been having these incidents where she bursts out crying over little things. Also, occasional grumpiness. So, it will be nice to be done with this until the next round in two weeks.

Tonight we had Aunt Angie, Uncle Steve, and cousin Alex over for dinner. Ashleigh enjoyed the company. On the way up to bed, she spontaneously said, "We had a good dinner tonight, didn't we?". She sounded like she was 33, not 3 years old. She's so funny.

Hopefully, this week will bring no major events. Also, we hope we will only need to be in clinic on one day this week. We're also hoping counts remain stable.

Take care everyone. Update in a few days.

Thursday, April 21, 2005 11:20 PM CDT

Hi everybody,

The appointment with the nephrologist was better this time as compared to last. Ashleigh showed improvement in all the indicators. We saw one of the nephrologists (there are two) that we had not seen in a long time. I think she was surprised at how good Ashleigh looked physically. Even though the numbers looked better, they are not great. However, she is stable at this point. This could change at any time. We're happy with where we are right now.

We were reminded that eventual dialysis and kidney transplant are inevitable. As she grows, her kidney will not be able to handle it's job due to the damage. Our approach at this point is to hopefully prolong the life of the kidney as long as we can. Hey, if we are talking about kidney transplant 3 years from now - believe me, I'll be happy. For what we have been through, a kidney transplant will be probably be a walk in the park.

The past two nights, we have been going to the park/playground. Ashleigh has been having a lot of fun. The playground equipment has been good rehab for her. She was such a strong and athletic little one before she went though all this. It will take a while to get her muscles back. The important part: she has been having a lot of fun!

Accutane is done Sunday. The weather is supposed to bad all weekend. We will probably be staying close to home. Maybe a quiet, "boring" weekend. I like "boring". It's much better than all the excitement fighting this illness has brought us.

Take care everyone and have a good weekend.

Tuesday, April 19, 2005 11:25 PM CDT

Hi everbody,

Things for us continue to go as well as can be expected.

Clinic today went well. Ashleigh needed a transfussion of hemoglobin. She has not had a blood transfussion in almost a month. And, for the first time since October, Ashleigh's platelet count actually rose without help. This is very encouraging. The kidney labs looked slightly better.

Thursday will be a big day. We meet with the nephrologist. Our last meeting and the aftermath was stressful. Amy has been doing a lot of homework to get ready. It will be very interesting. Wish us luck.

On to the daily living stuff. Since Friday (last entry) Ashleigh has kept busy with a lot of playing outside. Her energy level and strength have been low - low hemoglobin. However, she has been in very good spirits. The weekend had Grandma Kate and Grandpa Bill in for a short visit. Yesterday afternoon, Ashleigh's pal Caleb dropped in for a visit. They had a lot of fun. Caleb is a great entertainer and Ashleigh just laughs and laughs. The same routine they had when they were in daycare together. They are true friends.

Ashleigh does not need to go back to clinic until next Tuesday. Horray, we have been promoted to once a week visits. Within the next few weeks, we will go through all the cancer testing again. That will be a stressful and worrisome time for Mom and Dad.

I have a couple of great pictures I'll have Aunt Angie put up on the website. Take care everyone. I'll try to update after the appointment on Thursday.

Friday, April 15, 2005 10:50 PM CDT

Hi everybody,

Today clinic went well for Ashleigh. No transfussions needed. She didn't get any transfussions the entire week. That's the first time since November she has went this long without needing anything. Her blood pressures have been great. In fact, she has been getting her blood pressure med twice per day (instead of three times) because her blood pressures have been so good. We're not sure what is going on. The kidney is improving? That would be a long shot.

Ashleigh started round two of her Accutane last Sunday. The side effects include very dry skin on her face and lips as well as some funky mood swings at times. Still, she continues to be very happy most of the time and has been spending a lot of time outside lately. She and mom went shopping for brother Ryan's birthday gifts and party supplies. Can you believe he will turn "1" in about three weeks? They had a lot of fun. I was so glad to see Amy and Ashleigh get out for quality mother-daughter time.

Some bad news was confirmed with one of the other Neuroblastoma girls this week. If you recall, four girls were diagnosed with Neuroblastoma in the Spring/Summer of 2004 - Molly, Kaitlyn, Ashleigh, and Sara - "The Neuroblastoma Princesses". They are all close in age. Molly finished her last round of Accutane this week. It was discovered that her cancer has returned. She has relapsed. This is devastating. She has been doing so well. She is such a beautiful child and she has such a nice family. Her mom (Michelle) put on the Neuroblastoma fundraiser last month. We feel for them. You have probably seen Michelle's entries in the guestbook. She has shown us so much kindness and support. I wish there was something we could do to help them and their situation.

This is just another reminder how nasty this cancer is and how unpredictable things can be when you deal with pediatric cancer. So, many prayers and positive thoughts are needed for Molly Cavera and her family.

Take care all.

Wednesday, April 13, 2005 6:48 AM CDT

Hi everyone,

Quick update.

Clinic went well yesterday. Counts looked okay - not super great, but not bad. At this point we will be holding off on adding the new med (shot). That's good. Ashleigh took her pictures from Disney on Ice and was showing everyone. Short clinic visit and then visit Daddy at work and go to lunch. Good day in the life of our cancer kid.

So, overall things are going good. The latest issue/concern is the plan for the kidney. We received a copy of a letter from the nephrologist that he sent to all the physicians involved in Ashleigh's care. To Amy and I it almost seems like there are some disagreements about what to do with Ashleigh's kidney treatment. Amy was up late last night going through all of Ashleigh's labs from the past few months and researching the medications she has been taking, trying to make some sense of what we are seeing. We meet with the nephrologist next Thursday. That will be interesting.

In the meantime, we continue to enjoy our girl. Ashleigh and Ryan continue to become closer buddies. He's walking some and tearing the house apart. Ashleigh helps to keep an eye on him and lets us know his every move. They also laugh a lot together, particularly during meals. She gives him the "bug eyes" and he laughs and responds with a raspberry.

Take care everyone.

Sunday, April 10, 2005 11:43 PM CDT

Hi everyone,

What a great weekend!

We made it to Disney on Ice. I would say it was probably one of the most fun/memorable times Ashleigh has ever had. She has been talking about it non-stop since Friday night. We had great seats and it was really a good show. She was very into it. She is also very proud of her new "Belle" (Beauty and the Beast) t-shirt. We just had an awesome time.

Clinic on Friday was okay. Ashleigh's blood counts looked better. Although, she did get a little shot of platelets. Everyone feels the graph is slowly coming back in. However, we my have to add a new medication to help stimulate blood cell production. This will involve a weekly shot. That won't be fun. At least it's not every night like we used to do.

Saturday, Amy and Ashleigh did a mother-daughter thing and went to visit Amy's friend Michelle and new baby Noel. Saturday afternoon Grandpa Dinger and Esther flew in and we all had went to Aunt Angie and Uncle Steve's for dinner. Ashleigh had quite the busy social calander this weekend.

Sunday was work and play around home all day. Lots of time on the swing and in the sandbox. We had a lot of fun. The weather was beautiful this weekend.

So. overall, things are great. We may be able to back off to one clinic visit per week soon. Ashleigh has just been very happy lately. I mean VERY happy. Amy and I still can't relax, worrying and waiting for the next big event/problem to arise. We really just hope for a good summer at the least. We didn't have a summer last year. Ashleigh was diagnosed on June 6. It's kind of like we are not used to things going well. We are sort of convinced something difficult/bad will happen when things are going so well.

That's the latest. New update in a few days.

Thursday, April 7, 2005 11:22 PM CDT

Hi everyone,

Quick entry before the weekend.

Things are good here. ("Knock on wood") - Ashleigh has not come down with the virus Ryan has been battling. I hope she can make it 24 more hours. Ryan is doing much better. No fever and 'the squirts' have settled down. He is much happier.

We have been spending a lot of time outside this week. It's been lots of fun and we are getting a lot accomplished. Ashleigh was out with her little rake helping mom and dad rake the front lawn. She is such a helper and a hard worker for a little tyke.

Tonight was a big event. Ashleigh had her hair washed with shampoo for the first time in about 6 months. She was very excited and kept telling Amy and I to smell her hair.

So, overall things are as good as can be expected right now. Tomorrow is the routine clinic appointment. Amy and I are nervous. It's hard to relax when things are going well. So many times in the past when things have been good, something comes out of nowhere and we are back on the roller coaster again.

Wish us luck tomorrow. Hopefully, I'll have good news. And, hopefully we will make Disney on Ice.

Have a good weekend!

Tuesday, April 5, 2005 10:55 PM CDT

Hi everyone,

Today we had good news. Ashleigh's white counts dropped a little (down to 3300). But, the oncologist thought enough other indicators were stable that he decided we did not need to do the bone marrow aspirits today. That was a relief. We will keep monitoring.

Clinic appointment was short today. We were home early and spent most of the day outside. The weather was great here.

The biggest stressor now is Ryan. Amy took him to the doctor Monday. He has some funky virus that is going around. He has had a fever for the past few days and a lot of diarreha. Poor guy. No fever in the last 24 hours though.

We are worried to death Ashliegh will come down with it. We don't need another hospital stay. Our hands are raw (Amy's are bleeding)from constant washing and cleaning,to prevent Ashliegh from catching it. And, another worry is her plans for Friday. Disney on Ice is here and we have tickets. She has been so excited about going. She has been telling everybody she talks to about it and starts yelling with excitement when the TV commercials come on. If she gets sick and has to miss this; it would be devastating. It may not seem like such a big thing. But, this kid has already missed out on so many everyday joys of being a 3 year old. We try to do anything special that will make her happy and enjoy life. I wish it was Friday already.

We need more of those positive thoughts and prayers.

Take care everyone.

Sunday, April 3, 2005 10:24 PM CDT

Hi everyone,

We have had a very good last few days.

Friday at clinic we had a great surprise. Ashleigh had not received Neupogeon (stimulates white cell production)since the previous Friday. Lately, she has been getting it every Friday. Her white cell count was 4780. This is huge! Normal is 5000-10,000. We had not seen a count this high since before transplant. In fact, I think we have seen it over 3000 once, a day after receiving Neupogeon. And, this count came without the help of Neupogeon. This could be a sign the counts are coming in again. Also, her immuglobin (an immune system indicator) was 1600. Normal is 400-1200. This is another good sign. I don't want to get too excited. But, I can't help it.

Tuesday will be a big day. We have our routine clinic appointment. If her counts have dropped, they will do a bone marrow aspirit. This will involve sedating Ashleigh and sticking a needle into her hip in two places to draw out bone marrow. Yea, she will be sore. They will analyze the marrow to try to see what is going on in order to make a determination if we will infuse the remaining stem cells. So, we need positive thoughts and prayers.

Ashleigh continues to feel great and is in great spirits. I think she is becoming addicted to playing Candyland. We spent more time outside this weekend. Grandma Kelly and Binka were here for a visit. The only problem with the weekend was Ryan. He had a fever today and was not feeling well. We are scared he has some type of flu bug. We have been sanitizing everything constantly. Ashleigh does not need anything like this now.

So, we are on a positive upswing of the roller coaster today. Wish us luck on Tuesday.

Thursday, March 31, 2005 10:42 PM CST

Hi everyone,

The roller coaster continues.

Tuesday at clinic Ashleigh's counts were a bit more stable. She did not need any transfussions and she was out of clinic in an hour. Her and Mom stopped by my work to see me and we all went out to lunch. It was awesome.

The weather here has been so nice, in the 70's Tuesday. Ashleigh and Ryan had a great time playing outside. We spent a lot of quality time on the swings and slide. It was somewhat surprising to she how weak she had become as she tried to climb on the ladder up to her slide. But, she worked hard and our time on the slide was good rehab for her.

So, we were feeling very good. Ashleigh is feeling great, happy, and continuing to eat like a horse.

Then today we had the appointment with the nephrologist. The urine labs did not look good. Some of the initial indicators raised a lot of concerns. He started talking to us about the possibility of starting dialysis in a few weeks if some of the other indicators were not improved. This would include putting a catheter in her chest for dialysis. Remember our tube countdown in ICU? Putting in a dialysis catheter would not be good. This thing is very uncomfortable and painful. The idea of having to do this to her when she has been so happy and doing so well just crushed us. So, when we left the appointment today, Amy and I had that feeling again like we were just punched in the stomach. It's so difficult to hide that from Ashleigh.

Later in the day, Amy called the nephrology clinic to see if a very important indicator lab value had come in yet. Luckily this number was improved. This was kind of big. It possibly bought us more time before she will have to go on dialysis. We're not out of the woods yet. But, this result helped us alot.

So, back to the roller coaster after a weekend and a few days of respite. Tomorrow is a routine clinic day. We have no idea what the labs will look like tomorrow. Our hopes are not up. But, who knows.

I just know this is getting exhausting. The ups and downs are so difficult to take. This is supposed to be the time in the treatment when we are on the downslide and things are getting easier. Not for us. Maybe we will get lucky tomorrow.

In the meantime, I'm going to enjoy Ashleigh and all the joy she brings to our life. She is such a funny kid. And, she is so concerned with her brother. They are already friends. That's magical to see.

I'll quit for now. I'm kind of babbling, partly due to emotional exhaustion.

Take care everyone and have a good weekend.

Monday, March 28, 2005 10:50 PM CST

Hi everyone,

We had a great Easter weekend up in Alpena!

Ashleigh felt great all weekend. She saw all her grandparents and her great-grandparents. The Easter bunny visited. Ashleigh ate chocolate and jelly beans all weekend. Along with numerous individual pizzas. The pizzas are still in for those of you who are keeping score. Great Grandpa treated everyone out for Easter brunch. Ashleigh got to see Grandpa Dinger and Esther's new kitties. We just had a great weekend. Lots of fun. It was hard to leave and come back to our routines. Blood pressures and all the other things we continuously monitor looked great all weekend.

When we got home today, Ashleigh was very excited to play outside. It was beautiful here, 57 degrees. We set out lawn chairs on the deck and had a picnic complete with peanuts, cheese, and pretend "Rosy tea" (the Wiggles).

Tomorrow is the routine Tuesday at clinic. Thursday we see the nephrologist. Send positive thoughts and prayers for Ashleigh's counts to come in better and be more stable. Like I said in an earlier entry, we have until April 5th for things to get better. Otherwise, we will use the last stem cells.

Take care everyone. New update in a few days. I'll try to get some new pictures up soon.

Friday, March 25, 2005 10:52 PM CST

Hi everyone,

Sorry I'm getting an entry on so late. We have been busy packing for our weekend in Alpena for Easter.

Today at clinic, Ashleigh's counts were good enough to allow us to go to Alpena for Easter. Ashleigh is very excited. Her potassium came down. That's a relief. Overall, her counts were low. She needed a transfussion of hemoglobin, platelets, and Neupogen. The counts were slightly better this week. The oncologist admitted he was disapointed the counts were not higher. But, at this point, we are just glad we can go up north for the weekend and we don't have to worry (too much) about Ashleigh being in danger.

Ashleigh has been feeling great lately. Her sense of humor is full bore. So is her inquisitive nature, with constant questions and her own theories in regard to every twist and turn in her before bed video that she has seen dozens of times. Responding to her gets somewhat exhausting at times. Anyone with a bright 3 year old knows what I'm talking about. But, I think about how much I missed that when she was paralyzed and sedated in ICU. Now I'm exhaustedly thankful for her banter! ha ha

Ashleigh has also been enjoying her brother a lot lately. He is 10 months old and a bit of a character. Every night before she goes to sleep she asks that I bring Ryan up to her room to wake her up in the morning. He crawls around her bed, screams, laughs, pokes at her while she is half asleep, and bangs his head on the wall or headboard about ten times. She just laughs and calls him "my crazy brother". They are developing quite a bond.

So, to some degree we Ashleigh is getting more normal back in her life. Mom and Dad still continue to deal with the abnormal, watching lab values and constantly worrying. We hope Ashleigh's counts will become more stable so she can go visit her buddies at daycare soon. She has been talking a lot lately about wanting to go see her friends. We need better numbers and for the cold and flu season to pass.

Next week brings an appointment with the nephrologist and our routine clinic visits. However, we will try to focus on enjoying our weekend up north with all the grandparents. We should have new pictures to post next week. I have to hve Angie put one up with a close up of her hair. It seems like it grows every night!

Take care everyone. Have a good Easter holiday.

Tuesday, March 22, 2005 10:20 PM CST

Hi everyone,

We had a great weekend. We layed low and relaxed. Sunday morning we met Aunt Angie, Uncle Steve, and Alex at Meijer Gardens to see the butterflies. Ashleigh and Ryan enjoyed our time there. Ashleigh was fascinated by the cocoons.

Since my last entry things have been going well with no major events. Ashleigh finished her two week treatment with Accutane. She will be off it for two weeks, then start again. Her blood counts have been a little better lately. We had a long discussion with our oncologist Friday. He was hopefull her counts will come back. However, we set a date of April 5th. If her counts are not coming in better and more stable, we will plan to infuse the remaining stem cells.

Blood pressures have been very good. Kidney function is still all over the place. Friday, all but one lab indicator was normal. We were cautious to get excited. Today, the kidney function labs were not great. That lead to more tweeking of the kidney med. Actually, an increase in the med that is the most difficult for her to take. Also, potassium is creeping up again. So, tonight Ashleigh is hooked up to her "pet pole" (IV hydration) to hopefully help out with some of the indicators.

The good news at clinic today was her counts looked good enough there were no transfussions. This doesn't happen very often. It was kind of funny. Ashleigh and Amy head to clinic and get set up in the infussion room. Ashleigh has her food around her and a video in. I stopped by during my lunch break from work. The lab results come back and we had to pack everything up to go. In and out of clinic in less than 2 hours!

Ashleigh was also very excited that her "friend" Karen (the sedation nurse from radiation) stopped by to visit her. She must have told me 5 times tonight.

Our little girl is eating like a horse. She has gained some weight. The new food: pizza, good choice. She has been eating these individual frozen pizzas for almost every meal and as her night time snack. This morning when I asked her what she wanted for breakfast, Ashleigh responded "Pizza and fruit". Okay by me.

We are hoping things continue to go well and remain stable. We are planning a trip to Alpena this weekend for Easter. Ashleigh is very excited to go to Grandma Kate's house. She has also decided that when Grandpa Bill teases her this weekend she is going to "Just throw him in the garbage, Daddy (laughing)". That will be interesting.

I hope we can just make it to Saturday with no major events, like being admitted for low potassium. She is so excited about going to Alpena again. We have only been there once for 24 hours in the past year. Wow.

I'll get a new entry on before the weekend. Take care everyone.

Thursday, March 17, 2005 10:50 PM CST

Hi everybody,

Quick entry before the weekend.

The Bounce Party was a blast. It was a very nice fundraiser/party! Michelle Cavera (Molly's Mom) did an awesome job. Everything was perfect and there was a big turn out.

Ashleigh was so excited for the party she couldn't take her full nap today. She had a great time crawling through the inflatable tunnels with her best friend Caleb and her cousin Alex. Ryan had a good time too.

About a half hour before we left for the party, bloody noses started. But, we were going anyway. Luckily, they didn't turn out to be a big issue. Her energy level held up pretty good. Or girl will sleep good tonight. She didn't mind wearing her mask while playing and it didn't seem to phase Caleb or Alex.

It was just so nice to see Ashleigh do a normal kid thing. Also, being out in public outside of the clinic or the hospital helped to give a little more normal back to her life. We like normal life and miss it greatly.

Tomorrow is a routine clinic visit. I'm sure we will need a transfussion or two. Hopefully, no major events. This weekend we may try to catch the butterfly exhibit at Meijer Gardens.

I hope you all have a great weekend.

Wednesday, March 16, 2005 11:20 PM CST

Hi everybody,

At the moment, things are going well.

Ashleigh went to clinic this morning. All her blood counts looked very good. No transfussions. We were surprised. Her white cell counts, hemoglobin, and platelets all hung on quite well. This would be a nice new trend. We will see again on Friday. Today, Ashleigh's ANC (ability to fight infection) was the highest we have seen it in weeks. Her kidney labs showed slight improvement in some areas and stayed the same in others.

If things go well tonight and tomorrow, we plan to go to Molly's fundraiser for Neuroblastoma research at Bounceland tomorrow. Ashleigh is very excited to go. Hopefully, no bloody noses or high blood pressures tomorrow.

Ashleigh has been in a very good mood lately and talking non-stop. Out of the blue the other day, she said "Daddy, I feel great!" She continues to improve in walking. The "poopies" have been a new found victory. Ashleigh's bowels have basically come back on line now. Up until a week ago, she needed medication to go every few days. Now, things are moving almost close to normal. Normal defined as the way she operated before getting sick. This issue might not seem like a big deal. But, if you have been following us long, you realize this 'system' has not worked without medication since last Fall. So, I'm excited about something working normally in her body without medication. A sign her body is healing??

Ashleigh continues to have fun with her brother. He is a source of great entertainment. He is 10 months old now and constantly moving. They really like each other and this is fun to see.

Her hair seems to be growing daily. That's great to see. Ashleigh has talked about wanting to grow her hair to put it in a ponytail again. She said she is glad she doesn't need to take any more "chemo medicine" and that her hair will stay and keep growing.

So...things are good today. We still have a hard time being able to breathe - assuming a new worry or event is right around the corner.

Take care everyone.

Monday, March 14, 2005 11:16 PM CST

Hi everybody,

Boy...the ups and downs of having a cancer kid.

The beginning of the weekend was great. Ashleigh was feeling good. Grandpa Dinger and Esther were here to visit. We even went over to Aunt Angie and Uncle Steve's for dinner and to celebrate Mom's (29th?) birthday. Yes, she did graduate from high school at age 11. ha ha Ashleigh was very excited to see her cousin Alex. It had been a long time since she saw him.

Sunday morning Ashleigh had a bloody nose. It is very dry in our house. We can't have a humidifier. It can produce certain fungi that could be a problem for her. Also, the Accutane may be drying her out a bit. Well, Ashleigh's nose just kept bleeding and bleeding. This was due to low platelets. We worried and debated calling the hospital all day. The clinic is closed on Sunday. Throughout most of Sunday she had these bad bloody noses. It would usually take about a half hour for them to stop. This was especially scary because of Ashleigh's blood pressure issues. Low platelets with high blood pressure can lead to brain hemorrhage. Fortunately, her blood pressures have been very good for the past week.

This morning she woke up with blood all over her face. We called clinic and ended up going to the inpatient unit. Apparently, the outpatient clinic was short staffed. Our oncologist (Dr. Dickens) was covering the inpatient unit and he really helped us out. Ashleigh got a transfussion of platelets and Neupegon. The bloody noses stopped. We were able to stay in an inpatient room for the transfussions. That was nice - quiet and privacy. Ashleigh was a little miffed we didn't stay. She said she wanted to sleep there so she could wake me up in the middle of the night to eat ice and watch Care Bears ("Daddy, remember that?").

It was nice to see the inpatient nurses again. It was really nice to see them and then go home.

Ashleigh seems to be feeling really good and looks good (on the outside). Her labs and kidney function are still out of whack. We talked again with Dr. Dickens about the bone marrow numbers dropping. We are going to wait two weeks, hoping they come up. If not, we will talk about infusing the last stem cells.

So, that's the latest. Amy and I need to talk about if Ashleigh will be able to go to Bounceland for Molly's fundraiser party Thursday. Maybe we can go if she wears a mask.

More sad news on 7 South. We heard another 3 1/2 year old came in and was diagnosed with Neuroblastoma this weekend. We don't know many details yet.

Everyone take care. New update in a few days.

Friday, March 11, 2005 2:05 PM CST

Hi everyone,

We are at clinic right now and I am sitting next to Ashleigh while she is sleeping and receiving a platelet transfussion.

Sorry about the depressing and negative entry a few days ago. I guess if you are along with our journey you realize there are many ups and downs.

Today we had a good discussion with the oncologist. Ashleigh's counts were down again. The oncologists really believe what we are seeing now is a side effect of the radiation rather than we have lost the bone marrow graph. These radiation side effects commonly occur a few weeks after the the treatments are completed. Also, she had a very large area radiated and some vertebrae, hip, and ribs were involved. They said they are not that worried about her graph at this point. We still have to keep the same precautions in regards to exposing her to things. So, in a sense, our day 100 hasn't happened yet. We can deal with that. We were just so worried we had lost the graph.

Today, Ashleigh's potassium was down into the normal range. That was a huge relief. The kidney labs were still abnormal but slightly improved. We will be hooking her up to IV fluids at night for the next week. That seems to have helped the kidney functioning.

So, I wanted to get an entry in that wasn't so depressing before the weekend. We plug along another day. Thanks for your support.

Take care everyone.

Thursday, March 10, 2005 4:50 PM CST

Hi everybody,

The last few days have had good and bad. The good is Ashleigh seems to be feeling good. She is happy and playing. She is joking around a lot. She has such a great sense of humor. She continues to walk more, wear her “big girl underpants”, take all her meds like a champ, and help take care of her baby brother.

The bad is new worries and problematic labs. Tuesday during the routine clinic appointment, her labs showed an extremely high potassium level. It was in the critical range and there was worry she was at risk for cardiac arrest. They were planning to admit her. We tried a few things to get the potassium level down. Finally, at about 5:30 pm, her potassium level was in the safe range and we were allowed to come home with an appointment first thing in the morning on Wednesday. That night at home Ashleigh complained of a headache. She never has headaches. Her heart rate was very high for some reason. That eventually came down and the headache relieved with Tylenol. Putting her to bed that night was not easy. Seeing her wake up in the morning was a relief.

Wednesday, Amy talked with the nephrologist. Basically, they are concerned that the kidney is taking a turn for the worse. She (the nephrologist) talked about the idea of possibly starting dialysis in the near future. That was kind of devastating news. We having been talking, planning, and looking forward to this summer so much. We had hoped Ashleigh would get her Broviac removed and she could enjoy the summer, go swimming again, see her buddies at daycare, etc. We thought we want to have a great summer with her because the reality is it could be our last summer if she relapses after treatment is complete. Now, if she has to have a permanent dialysis catheter placed in her chest and receive dialysis, that would ruin all the plans and our kid will not have her normal life back this summer. Also, things could go down hill fast and we would be looking at a kidney transplant sooner rather than later.

The other new issue/concern is her blood counts. Today is day 100. This is supposed to be a big day. However, her counts are not where they should be. She still needs frequent platelet transfussions, red blood cells, and Neupogen. The meds used to fight the viral infection and the radiation are rough on the bone marrow graph. The graph may be damaged and we might have to look at infusing more stem cells. That may not seem like a big deal. We won’t have to do the chemo again. However, there were only two collections of stem cells harvested. We used one and only have one left. If the second one doesn’t take, we are in serious trouble. We will be discussing this with the doctors next week.

So, Amy and I are pretty much emotionally exhausted and exasperated. This is supposed to be the time when things should get easier. Instead new complications and major worries. We are also so traumatized from our last hospital stay. When her potassium was out of whack and they were talking about admission, we kept thinking , this is just the beginning. The beginning of heading back to the hell we went through before.

Sorry such a negative entry. There are just lots of worries here. And when you think things are getting better and you can breathe - new things happen and all new worries set in.

I hope you all enjoy and appreciate what you have. I hope none of you will ever have to deal with things like this in your lives. We will enjoy Ashleigh this weekend and try to ignore the latest numbers (impossible). We’re due for a break, one of these worries to be alleviated or a negative to turn around. Send your thoughts and prayers!

Sunday, March 6, 2005 11:41 PM CST

Hello everyone,

Great weekend. Ashleigh had a lot of fun with Grandma Kate and Grandpa Bill. She felt great all weekend. We even went out to dinner. Technically, she shouldn't be out in public until Thursday. But, we were careful and went early to avoid any crowds. Also, we disinfected the entire area were we were sitting. Ashleigh was so excited to go to restaurant again. We had to bring her food from home - she can't eat restaurant food yet. However, she just likes the atmosphere of a lot of people around. Today, (Sunday) we made a snowman. Angie will probably put up a picture soon.

Since the last entry, things have been going well. At the nephrologist appointment, we got a better idea about long term plans. He upped one med and changed it to pill form. This one is a little harder to swallow. Put Ashleigh pulls it off. He said he now considers her "stable" with no immediate need for dialysis or transplant. However, she will likely need these in the future. Hopefully in a few years. He is still chasing lab values, trying to get them into a better range with the medications. Blood pressures have been pretty good.

We had a major scare after the nephrologist appointment. After we met with him, he walked out and left a copy of Ashleigh's most recent urinalysis report. We hadn't seen it yet. Our oncologist ordered a "spot check" of a few cancer indicators. The one indicator read "13.6 H (high/abnormal)". I went to work and looked the indicator up on the internet - the wrong thing to do. Amy or I didn't sleep that night. We just kept thinking, how could this thing come back already?

The next day (Friday) we met with the oncologist. We asked him about the number. He said that didn't worry him at all and the indicator could be elevated for a variety of reasons. He pulled up her numbers from when she was first diagnosed. The idicator (HVA) was 162! That was cancer present. Her HVA before she went into bone marrow transplant was 15.1. At that time, all the other testing showed no detectable cancer. So, Thursday night was rough. When that concept enters your mind of her not making it - it really messes you up (emotionally) for a day or two. But, these darn numbers will be our life and the source of worry for the next few years.

Tomorrow our last phase of treatment starts. Ashleigh will begin to take Accutane. Accutane is a medication often used for acne. However, it has been shown to help a great deal in preventing relapse of Neuroblastoma. We have been told studies suggest it adds 10-15o survival rates.

The big challenge for mom tomorrow is trying to get Ashleigh to swallow two gelcaps of Accutane twice. Amy and I were experimenting with how to possibly sqeeze to med out to mix in yogurt if Ashleigh is not able to swallow the capsules.

Ashleigh will be on the Accutane for two weeks and off for two weeks for the next 6 months. The most common side effects are extremely dry skin on the face and her lips drying, cracking, and pealing. We have also heard of mood swings.

I hope you enjoy the new pictures. Ashleigh has been feeling great! A little tired sometimes. When she gets tired, she is tired right now. This is still a side effect of the radiation. Otherwise, she is walking great, wearing her big girl underpants, and helping mom take care of Ryan. She likes to pick out his clothes everyday and help mom get him dressed. Thursday is 100 days since transplant. We haven't decided how to celebrate yet. I can't wait to take Ashleigh to daycare to visit her buddies, see cousin Alex again, and hook up with her pal Caleb.

Everybody have a good week. I'll update in a few days.

Wednesday, March 2, 2005 10:29 PM CST

Hello everybody,

We are having a good week.

Ashleigh has been feeling pretty good. Blood pressures have been under control. Labs pertaining to kidney function are still bouncing around. However, no major events the past few days.

"Big girl underpants day(s)" have been very successful. No problem for our little girl. She is feeling increasingly independent since she started walking again. She also takes a lot of pride in helping mom with things around the house and taking care of her little brother.

Eating has been going very well. The newest food sensation - an oldie but a goody - our friend the buttermilk biscuits are back! Breakfast, lunch, dinner, and snacks always include a biscuit. We like these - lots of calories.

Tomorrow, we go see the Nephrologist. This should be an interesting meeting. We are going to discuss our plan for dealing with Ashleigh's kidney disease and where things are in regard to the potential for kidney transplant and/or dialysis in the near future.

Ashleigh's friend from clinic Molly is having a party to raise money for Neuroblastoma research, proceeds going to the Children Neuroblastoma Cancer Foundation. Molly was diagnosed a few months before Ashleigh. She went through the same treatment as Ashleigh and is doing fabulous now.

Here is the info from Molly's mom Michelle posted on her website at CarePages.com:

"We are having a Bouncing Fun Party from 5:15 - 7:15 on March 17 (St. Patricks Day) . Kids and adults too can bounce away in the inflatable playrooms then join us for the pizza party that follows. The location is BOUNCE PARTY (NW corner of Patterson and 52nd). We're asking for a $10 minimum donation/child and your total donation (checks made out to C.N.C.F) will go for Neuroblastoma research. RSVP by March 10 to our address (2861 Maplewood Dr. Grand Rapids, 49506). Please join us and bring a friend. If you're too far away to celebrate our Luck of the Irish party, feel free to support our research cause. With Neuroblastoma lagging behind in childhood cure rate advances, we want to do a small part so someday all those kids can BOUNCE back from a cure for Neuroblastoma."

So, for those of you with little ones who may enjoy this party - please consider attending. We are planning on going if Ashleigh's counts are okay. I have never been to this Bounce Party place. But, it sounds like something fun for the kids. Neuroblastoma is such an nasty cancer. Anything we can do to help advance treatment through research and help save more kids is sorely needed.

We are also looking forward to the weekend. Grandma Kate and Grandpa Bill are planning on coming for a visit. That's always a lot of fun.

Everyone have a great rest of the week. I'll probably post an update Sunday night. Send positive thoughts and prayers for Ashleigh's kidney.

Take care, everyone.

Sunday, February 27, 2005 10:30 PM CST

Hi everyone,

Good weekend.

Ashleigh was in a great mood. She was a little tired but wanted to do more than just watch videos. We played lots of Candyland and Go Fish this weekend. Blood pressures were pretty decent. She didn't eat that great. We're not sure what this was about. Hopefully, this will turn around soon.

Some of Ashleigh's meds were changed over to tablet and capsule form this weekend. We were not sure how this was going to go. You can't sneak anything by her like hiding a med in juice or applesauce. Before changing over two of the meds, she had to take approximately 70 ml of liquid meds throughout the course of a day. Many of these meds do not taste good. How much is that? Well, if you give a 3 year old a dose of Tylenol, it's usually 1.6 ml. Motrin is 1.875. So, imagine giving your 3 year old 43 doses of Tylenol thoughout a day. The volume of meds was incredible and we will be increasing some of the kidney meds soon.

So, we explained to Ashleigh we wouldn't have to do as much of the "squirter medicines" (using a syringe) if she could swallow a spoonful of applesauce with medicines mixed in. Amy showed her the medicine. Our kid took it like a champ and said "That was easy". I'm glad she is getting into this because the retonic acid only comes in tablet form.

This weekend Ashleigh really started walking a lot on her own and looked quite stable. In fact, we even played a bit of "Monster Chase" today as well as hide and seek. She has also wanted to help with everything since she is walking around again. Cleaning up the kitchen after meals and helping mom get Ryan dressed our two of her favorites.

This week we are scheduled for clinic visits twice and meeting with the nephrologist on Thursday. Day 100 is March 10th - less than two weeks away. After that, we will be able to take Ashleigh out into the public. We may go to her favorite restaurant which has a water/light show. Also, she really wants to visit her buddies at daycare. It will be nice to be able to take her out again.

So, things are stable now. With her new found independence from walking we may start getting her back to how she was before she got sick. Tomorrow will be "big girl underpants day". She was potty trained before she got sick. But, like a lot of the kids in her type of situation, she regressed a bit. Having fractured legs and being bedridden kept her in diapers too, obviously.

Everyone have a good week. New update in a few days.

Thursday, February 24, 2005 10:41 PM CST

Hi everyone,

The last two days have been very good. Ashleigh has been in great spirits and eating well. She even gained a little, tiny bit of weight.

Wednesday radiation was finished. This feels great. The most invasive parts of treatment are over (we hope, barring any potential complications). Ashleigh has been coping quite well with not going to her "radiation picture". She was able to stay home from the hospital today with Mom and Ryan. I think she enjoyed the break.

The blood pressures have been better since Tuesday. Thank God. As you could see from my last entry, this issue can stress us out a lot and be a major source of worry.

Ashleigh has been walking a lot more and better. Cute story: This morning, I was downstairs feeding Ryan. Amy came down and asked me if I gave Ashleigh books during the night. I said no. I went upstairs to check on her. She had a pile of books on the floor next to the bed. Aparently, our little munchkin is able to get out of bed and get a lot of her books in the middle of the night for a little late night reading party while mom and dad are sleeping.

Eating has been going well. A few new favorites: meatballs, spagetti, and saltine crackers. Ashleigh asked if she could take a bowl of crackers to bed tonight because "Daddy, I wake up and I'm hungry". Of course, our little skinny cancer kid can eat in bed or any other time she wants. This would have been unheard of before she got sick.

So, overall things are going quite well. There still is a lot of work. Ashleigh had to take 13 medications today. She took them all like a champ.

Tomorrow is clinic. Ashleigh will probably need a platelet transfussion and neupegon. Her brother may go to clinic for a while to hang out with her. Also, we need to talk with the doctor about our next phase of treatment, retenoic acid. This is basically an oral med with some side effects. This phase of treatment lasts 6 months and is designed to prevent relapse.

Enough for now. Everybody have a great weekend.

Tuesday, February 22, 2005 10:20 PM CST

Hello everyone,

Sorry so long since the last update.

Things have been good and worrisome over the past few days.

The weekend: Saturday Ashleigh was pretty exhausted from the five days of radiation. She was very upset (with crying) Saturday morning when she realized we would not be going to the hospital that day for her "radiation picture". She actually likes going! She has bonded with the sedation nurse Karen. All weekend, she talked about Karen and wanted to take things to the hospital to show Karen, save candy to give to Karen, etc.

Saturday we also dealt with blood pressure problems and ended up having to call the doctor. Things mellowed out with this issue (for a short period of time) on Sunday morning.

Sunday Ashleigh felt great and had a good day. She did the old sneak downstairs after nap routine again. Grandpa Dinger and Esther were here this weekend and Ashleigh had a lot of fun playing with them.

Monday was radiation and today (Tuesday) was radiation and our regular clinic visit. Dad went to "radiation picture" this morning. It was kind of funny. We were sitting in the waiting room. There are all these 50 something women, guys in their 70's, and our little Ashleigh. She is quite the little celebrity there. I think the staff and other patients have really taken an interest/liking to her. Especially, we she is riding in her stroller eating Pringles after her radiation.

Tomorrow is Ashleigh's last day of radiation! Can you believe it? We are happy. I don't know if Ashleigh will be. She made a lot of friends there.

Today, blood pressures became a big issue again. Her meds were bringing it down but not keeping it down as long as needed. I was on the phone with the nephrologist tonight, trying to figure out what to do. They seemed to mello out a bit early this evening.

The blood pressure thing is very scary. The problem is the radiation knocks her platelet count down. Low platelets plus high blood pressure can result in a bleed in the brain. Not good. This is a real risk and you feel powerless to stop it when the meds are not working.

Hanging around DeVos 7 South makes you realize how quick things can go bad when the kid is doing well. I mentioned a kid named Trevor a few weeks ago. He was admitted to intensive care the day we left. He was doing well and started feeling bad one day. He had bleeding around his heart and passed out. I heard the other day he didn't make it. These kind of stories scare the hell out of you. Especially, when you know the kid and the family. Doing well one minute, then it's over. What is weird is you simply don't see the family any more and no one talks about them. Then we deal with Ashleigh and this blood pressure issue. It's difficult when you put her down to bed at night and try to go to sleep. I'll be very happy if when I wake up tomorrow (if I sleep)and check on her and she is okay. This is the insanity we deal with daily. Wow

Sorry to end on such a bummer. Reality in our situation is tough to deal with sometimes.

Hug your kids and be thankful if they are healthy!

Friday, February 18, 2005 10:10 PM CST

Hi everybody,

Sorry it took me so long for a new update. Yesterday, I had some flu symptoms, so I didn't stay at home last night and didn't have access to a computer. Flu and bone marrow transplant kid do not mix! I'm feeling better today. I'm just going to wear a mask constantly and wash hands alot.

Ashleigh has been doing quite well. Nine radiation sessions down, three to go. Today was a long day. Ashleigh and mom started with radiation at 8:15 a.m. Then it was off the the scheduled clinic visit. Ashleigh needed to get a blood transfussion, platelets, IV IG (immune system booster), and neupogen (stimulates white cell production). She and mom did not get home until 6:30 p.m. tonight.

Ashleigh's counts have really taken a hit from the radiation. This was expected. That's why she has needed so much extra stuff in clinic lately. We are glad she will be done with radiation on Wednesday. Then we will move on to Accutane, a medication that helps to prevent relapse of the cancer. I think that treatment lasts 4-6 months. More on this later. Also, she will still go to clinic twice a week to monitor everything else until her bone marrow is producing all the right counts without the extra help.

The kidney: Ashleigh's labs for kidney function have sort of moved all over. Some things are better, some things are worse. It's hard to tell what will happen. The nephrologist lowered her blood pressure med and added another med to help the kidneys. We will continue to monitor and watch.

Other new news: Results of a stool sample came back negative of Adeno virus! That's good. Walking continues to get better. Ashleigh is showing more interest in walking. Eating is going well. We actually saw a tiny increase in weight this week. Yahoo! Cheeseburgers and pizza are the new foods of choice. Good pick, kiddo.

So, overall things are going fairly well. We are looking forward to being done with radiation and day 100. Amy calculated day 100 as March 9. That will be great. Ashleigh said she wants to go visit her friends at daycare and go to Grandma Kate's house in Alpena when the doctors say it is okay.

Have a good weekend!

Tuesday, February 15, 2005 10:35 PM CST

Hello everyone,

Things have been going very well overall.

Today we reached the halfway point with the radiation. Six down, six to go. Dad forgot to give Ashleigh her anti-nausea med this morning. That was a big mistake. She threw up right after the radiation. That won't happen again. There is just so much to remember and you get so exhausted sometimes. But after she threw up - no big deal. She just went back to eating.

Walking is improving more and more. Ashleigh walked without any help tonight for a short distance and did a great job. No more independent walking adventures without mom and dad the past few days.

Ashleigh has been getting very tired from the radiation. Still, her spirits are very good most of the time. She beat mom and dad at Candyland again tonight.

I think Amy and I always enjoyed our time with Ashleigh before she got sick. I know I basically gave up all hobbies and cut back my working just to spend time with her. Kids bring so much joy to your life. When they are this age, you really need to spend as much time as you can with them. I hope seeing what we have been through and are going through helps people re-evaluate where they spend their time and what is important. Things can change in an instant. Ask any of the "new" families you see up in 7 South at DeVos Children's Hospital.

Sorry. Enough for now. I'm exhausted and getting a little too philosophical. ha ha

Take care. New update in a few days.

Sunday, February 13, 2005 10:05 PM CST

Hello everybody,

Good weekend overall. Saturday Ashleigh had a good day. Grandma Kate and Grandpa Bill were here. So, she was showing off her improved walking abilities. We played outside, riding her bike and playing on the swing.

Ashleigh can walk while he hold her hands. She is getting stronger and you can see the muscle beginning to come back in her legs.

Saturday, she was upstairs for her typical afternoon nap. Ryan and I were downstairs and Mom was laying down upstairs. I pick Ryan up and as I turn around to head upstairs to check on Ashleigh, she is standing there in the kitchen holding herself up against the wall. She climbed out of bed, came down our large flight of stairs, and came around the corner into the kitchen. I almost had a heart attack! She can't even walk by herself yet. She told me she held on to the wall the entire way and came down the stairs on her butt. When I asked her why she didn't call for mom or dad to get her out of bed, she responded, "I didn't fall. I went slow. I wanted to do it myself". We like the independence... But, that's all we need are more broken bones!

Today (Sunday) was a little tense with worries. Ashleigh did not want to get out of bed this morning. This is not typical. Her blood pressure was running higher. She had dry heaves like she was going to throw up this morning. We were worried all day. She perked up a little later. But we get so nervous when she starts acting sick. We are still traumatized from everything that happpened while in the hospital. Walking was less today because she said her leg "Didn't feel good". She may have overdone it yesterday.

Weight has stayed stable. This is good. The newest food sensation, those breaded frozen fish sticks were huge (every meal) until today for some reason. Stay tuned for the next food of the week.

Radiation every day next week. Four down, eight to go. I can't wait until this is done. Ashleigh has been doing extremely well taking all her medications. Currently she takes a high blood pressure med four times a day, a kidney med three times a day, an appetite stimulant, an antifungal, and an anti-nausea med. She also needs a med every few days to get the bowels moving. Lots of meds - but she is becoming a pro. No pokes (nightly shots). That's nice.

Ashleigh's spirits have been good. She continues to process things from staying at the hospital with a lot of stories that start out with "Remember when, at the hospital..." We started playing Candyland recently. Ashleigh likes this. And, last night, she went to work in her kitchen, preparing a picnic that took place on a blanket on the living room floor.

She is becoming a little peach head with soft, fuzzy hair coming in. She's so cute. Also, she has found motivation for "school time" with mom, citing she wants to be ready when she goes back to daycare. Of course, this won't happen for at least another 5 months. We are at day 75 of transplant. Twenty five to go to our magic number of 100. Hopefully, we won't get sick and end up back in the hospital over the next three weeks.

Enough for now. Update in a few days.

Thursday, February 10, 2005 11:25 PM CST

Hi everybody,

It's getting late - so a quick update.

Hopefully, Angie was able to put the new picture of Ashleigh up on the site today. Doesn't she look good? She is getting her eyelashes and eyebrows back. She is looking more like our Ashleigh. She's such a beautiful kid!

Radiation: Three down, nine to go. She seems to be tolerating the treatment rather well at this point. She threw up the first day - but not since. Amy has been giving her a nausea med every morning. That probably helps.

Eating: We are continuing to work at this. As you can see from the picture, we are expanding out from the Pringles. Pringles are still a major player. She has not lost any weight the past two days. That's good. We need a waffle week like we had that one time in the past, remember?

Walking: Getting better, slowly. We make her practice. She is strong enough but still a little shakey. She needs to hold on to your hand our her little grocery cart. This will come along.

Tomorrow, radiation in the morning. Clinic after. Ashleigh will need a platelet tranfussion and her IV IG (an immune system booster).

Looking forward to a good weekend. Grandma Kate and Grandpa Bill are coming. Mom and Dad may be able to sleep in until 7 a.m. as Grandma Kate will get up with Ryan.

Everybody have a great weekend and hug your kids.

Tuesday, February 8, 2005 9:29 PM CST

Hello everybody,

Long day at clinic. We arrived at 8:15 a.m. and left at 5 p.m. Ashleigh was a trooper and did very well. Nine hours at the hospital and in clinic. No problem for our girl. It's like going to a job for her. Amazing.

Today, radiation finally started. The best way to describe it is bizarre. Ashleigh is sedated lying on this little table and this huge machine is rotated around her. We have to stay in another room and watch her on a monitor. It's very strange.

Then we were back in clinic for a blood transfusion and IV neupogen. The testing for kidney function looked better - likely due to the medications. Ashleigh vomited twice in clinic - a side effect of her radiation. Basically, a routine day in the world of a Neuroblastoma kid.

Pringles are still the mainstay of the diet. She polished off two small cans today. That's about 600 calories. Not great nutrition, but we'll take it. She also ate other food (a decent dinner) and plenty of juice.

A long but decent day today. We hooked Ashleigh up to IV fluids tonight. Her labs showed she was drying out a bit. So, I'll sleep in her room to help in the middle of the night when she rolls over and gets tangled up in her line. We have bizarre routines in our life nowadays.

So, one radiation down, eleven more to go.

Take care. Update in a few days.

Sunday, February 6, 2005 10:22 PM CST

Hi everybody,

Great weekend. No major events. Ashleigh was in a great mood. Eating is getting steadily better. She is still losing weight. But, if she continues to eat like she did today - we should be okay. She has lost about 2.5 lbs since coming home. She now weighs 13.2 kilos (29 lbs). The newest thing in eating is Pringles potato chips. I had to run to the grocery store tonight to get more. Hopefully, something more hearty will be the food of choice. But, we'll take Pringles for now for sure.

Our kid is back. Wow... I forgot about all her great smiles. She sort of has different types of smiles. She has her laughing smile, her sneaky smile, and her sweet girl smile. Her sense of humor is back. She is such a funny kid. Also, her constant questioning of "why" is something that was sorely missed. Another thing is the storytelling that usually starts out with "Hey Dad, remember when...". Another funny thing. Ashleigh is on this kick of wanting to get a pet "bunny rabbit" after the snow goes away. Amy and I keep trying to talk her into another kitty. But, she won't have it. She's precious.

Tomorrow is clinic and a practice run with radiation. Radiation is set to start Tuesday. Ashleigh will have to be sedated. They are radiating a big area. Also, she will be kind of propped up on her stomach/side. So, they need to have her motionless. There will be 12 sessions of radiation.

Blood pressures have been better. Tuesday they will take urine for kidney function testing. Wish us luck.

Enough for now. Take care everyone.

Thursday, February 3, 2005 10:37 PM CST

Hi everybody,

Well, this will be a different entry. Some good things and one bad thing. Don't worry, no cancer back. But, another big issue.

We received a call from the nephrologist yesterday. More labs came back concerning Ashleigh's kidney function. This was not good news. Basically, to get right to the point, Ashleigh is now considered to have a chronic and progressive form of kidney disease. This means (given the new lab results) that it is unlikely Ashleigh's kidney function will return to normal. It's more likely her kidney function will get worse. She is started on another medication to help. She may beat the odds, but probably not.

It looks like her kidney took such a beating with the chemo, the adenol virus infection, and the medications to fight off the two viral infection - that her kidney is probably permanently damaged. So, what does this mean? Well, we might be able to control the problem with medication for a long time. We may have to get dialysis in the future. There is also a good chance of an eventual kidney transplant. When could all this happen? Its hard to say. Hopefully, later rather than sooner. The nephrologist said one factor is how her kidney will grow as she grows (assuming she doesn't fall into kidney failure soon). He mentioned possible transplant when she is 8 or 10 years old. If we can get her to 8 years old, we'll be happy. Basically, we don't know how this thing will progress. It's kind of a wait and see.

This news was devastating of course. Dealing with this type of cancer is tough enough. All the other things we have had thrown at us is really unbelievable, if you think about it. I would just like this kid to have a somewhat normal childhood. That kind of seems like it is not going to happen. I, myself, am kind of getting so tired of getting devastating news. I just want my kid to have some of the enjoyment in life most 3 year olds have.

Anyway... on to good things.

The orthopedic doctor called tonight. She looked at all of Ashleigh's x-rays and her bone scan. She said they look great. No fractures or bone problems. In fact, she said she "couldn't believe" how good the tests looked and some of the funky angles her bones healed at are already getting better.

Ashleigh finally had a day where she did not have to go to the hospital. Her, mom, and Ryan had a great day. Lots of creative projects, some practice walking, and "school time" to practice writing her name and learning letters. She was very happy to be home for the entire day.

Eating: Things keep moving along, getting better. At 3 a.m. last night Ashleigh was awake and calling for Mommy. Amy went to see what she needed. Ashleigh said she was hungry and wanted "smiley faces" (smiley face spagetti O's). Today, when I called home from work, she asked me stop at the store and buy stuff to make tacos. I did. During her snack before bed, she was watching her video, eating tacos and the the taco cheese. She looked at me and said "Daddy, I want to stay up all night and eat cheese". ha ha ha

By the way, our kid is back. She has been feeling good and joking - a lot. She has such a good sense of humor for such a little squirt. The trauma stuff is slowly getting better. She is regaining some of her independence back, by "baby steps". Walking is going with the same baby steps. But since we were cleared by orthopedics, we will be concentrating on this more.

Sorry about the negative news. I sort of need to tell it like it is. Even though the kidney thing is not cool. We have more positives to hold on to the past few days.

Take care everyone.

Tuesday, February 1, 2005 10:25 PM CST

Hi everybody,

Things have been cruising along fairly well the past two days. No major events or problems.

Ashleigh is beginning to eat more. We ate goulash for two days, including breakfast and snack before bed. Now, goulash is out and spagetti O's with meatballs are in. She is eating at about half of what she typically eats when feeling well. This is good. This is also enough to prevent her from getting an NG tube in the near future.

We had clinic again today and saw the nephrologist. Ashleigh had a few labs that showed some kidney problems. The nephrologist is not that concerned because other indicators looked good. Ashleigh's blood pressure has been slightly better. She still needs her med every 4 hours. But, her blood pressure is not getting as high as it was just before med times.

Radiation: We are still waiting. The radiation oncologist called last night to update us. He said Ashleigh's case has been the most difficult he has ever worked on. We have to do another simulation. The simulation is when they sedate her and set her in a position and sort of do a practice run to get the radiation set up perfectly. They want her to be placed more on her side for radiation now. He said this should work and we may start two days after the simulation. The simulation is tomorrow.

This week we will be at the hospital Monday, Tuesday, Wednesday, and Friday at this point. She still needs to see the orthopedic doc to get cleared for us to work on walking again.

Ashleigh's spirits have continued to improve slightly each day. This often depends on how exhausted she is from clinic or the status of her bowel problems. She is still quite emotional and traumatized. That will take a lot of time to resolve.

Ashleigh has been enjoying her brother who is a constant source of comic relief. He is a riot. Very talkative, active, and loud. Ashleigh just laughs at him and his antics. He just smiles back in response. It's great to see.

"Baby steps, baby steps"... At least we're headed in the right direction.

Sunday, January 30, 2005 2:43 PM CST

Hi everyone,

Merry Christmas (yesterday) from the Kieliszewski household. We had quite the celebration with all three sets of grandparents and Aunt Angie and Uncle Steve. Ashleigh was very excited on Christmas Eve and left out cookies, milk, carrots, and sugar for Santa and his reindeer. She was excited when she saw they ate what she had left for them. After she and her brother opened a mountain of gifts, she had a “special visit” from Santa himself (Kurt Donakowski). Thanks to Kurt, he did an awesome job. I think she was a little shocked. But, she kept talking about his visit for the rest of the day and even mentioned it this morning. I’m sure she will be talking about it for many years to come.

Overall, this was a very memorable and enjoyable Christmas. We feel lucky and thankful we were able to have a Christmas with Ashleigh this year. She had a great time and was excited about all her gifts. I think she was most excited to have all the family around. She really likes that.

For this coming week, we are getting geared up to tackle the next phase of treatment, radiation. Our radiation keeps getting delayed. We want to get it going and done.

Eating: Remember our phrase “baby steps”. We have baby steps with eating right now. For lunch today, she did eat the best we have seen so far. However, she has a long way to go.

Funny story: This morning we asked Ashleigh what she wanted for breakfast and laid out the entire menu of possibilities like we do for every meal. She looks me right in the eye and said, “I want goulash”. Goulash for breakfast? Yea, that’s what she wanted and she insisted she help mom make it. For those of you who have followed us for a long time – remember the grilled chicken phase after one of the chemos and how I was out on the deck grilling chicken at 7 a.m. on a Sunday morning? Well, we couldn’t pull off the goulash and she agreed to a few bites of peaches, yogurt, and sausage. Yes, we are having goulash tonight for dinner.

Other things: If you see from the photos, Ashleigh’s eyebrows and eye lashes are growing back. Also, she is getting a little peach fuzz growing on her head. I like to rub her head and call her “peach head girl”. She thinks the name is funny.

Walking: Not much improvement here. Ashleigh did crawl a little yesterday. She is still quite weak and her muscles are still deconditioned. Hopefully, we will begin to see “baby steps” in this area soon.

Talking: Ashleigh’s talking is getting closer to what it was prior to hospitalization. She is also getting a little more wind and beginning to be able yell a little.

Trauma: This is getting a little better. She was able to sleep alone in her room last night for the first time since we have been home. She isn’t waking up crying anymore. She is still quite emotional. But, this is getting better.

Overall, our little girl is still very sick and weak. But, she is steadily improving at a slow pace. She is happier and laughing more. I think our Christmas this weekend helped immensely.

Thanks to everyone for your support. It means a lot. New update in a few days.

Thursday, January 27, 2005 9:26 AM CST

Quick update:

Sorry I didn't get an update on last night.

The MIBG scan came back negative. Horray! No detectable Neuroblastoma present. We keep forging ahead.

Radiation: Radiation will not occur until next week. They are having a hard time figuring out safe angles for the radiation and proper doses. This has become complicated due to the kidney gone. The organs kind of fell into the space left after the surgery. So, it's not a typical picture they are looking at or a straightforward call.

Sadness: Ashleigh continues to be sad. However, she received a video from Caleb yesterday. On the video he sings, dances, talks to Ashleigh, and kisses her picture. It was awesome. Everyone in the room was crying. Initially, it was hard for Ashleigh. She looked very sad. Then there was a part in the video were Caleb tries to put on his Ashleigh t-shirt. He has a little trouble. Ashleigh burst out laughing and smiled for the rest of the video. After, her and I talked about it (entering the mind of a 3 year old). She said she was a little sad because she misses him. However, she was able to sort of switch gears and talk about how funny he was and how she was happy he sent her a video. She also commented that he needs to do "clean up" in his room because it was messy. ha ha Thanks to Jenny (Caleb's mom) for dropping off the video. It was sorely needed and helped immensely.

Short (hopefully) visit to clinic today. Tomorrow will be a long visit. Saturday will be Christmas at our house. More on this later.

Gotta run.

Tuesday, January 25, 2005 10:56 PM CST

Hello everyone,

We have been busy the past two days. Overall, things have been going fairly well. Things are still very tough and we have a very sick girl. However, after staring death in the face in intensive care a few times, things become relative.

Monday, we were in clinic from 10 a.m. until 6 p.m. Ashleigh needed a blood tranfussion and platelets. Before, we would have lost our mind spending that much time in clinic. Now, we ate dinner there in the infusion room knowing we will be going home that night.

Radiation was supposed to start Monday, then Tuesday, then Wednesday. Now it is tenatively scheduled for Thursday. They are putting in a lot of time trying to set up the angles and doses of radiation to try to minimize damage to the remaining kidney and the liver.

Today, we had an appointment with the nephrologist. He confirmed Ashleigh has kidney disease due to the beating her kidney took from the adenol virus. What does this mean? It's hard to tell. The nephrologist does not think she will need a kidney transplant. However, we will be seeing them for a long time - possibly years. For now, the big issue is the high blood pressures as manifested from the kidney disease. He tweeked the meds today and we are talking about a lot of different plans/strategies to deal with this problem.

Eating is slightly (very slightly) better. We still have a long way to go and Ashleigh is losing weight. Hopefully, we turn the corner on this issue soon.

Tomorrow is a big day. We have the MIBG and MRIs. The MIBG is a body scan that picks up Neuroblastoma. If you recall, the scan in October showed no detectable cancer present. We hope we get the same result. If not, we are in serious trouble. This cancer is very aggressive. There is a chance it's back. So, we need your thoughts and prayers.

We continue to see more of our Ashleigh coming back. She wanted to get down on the floor and crawl today. She is still so weak. She seemed quite proud of herself that she could do it. We have been practicing standing. Also, I noticed she was doing her own rehab on her legs while on the couch watching videos. She will lay there and pick her legs up and play with her feet. This is what she did when we had to rehab her to walk before.

We are still dealing with the effects of the trauma from being in the hospital so long and all the horrible (and necessary) things that were done to her. I slept in her room last night. In her sleep, she starting kind of crying and saying "No,no, no!". Then she fell back asleep. She sort of moaned in a kind of distress while sleeping 4-5 times last night. Poor kid. That last hospitalization really did a number on her. Not being able to walk is also hard on her emotionally. Amy and I desparately hope Ashleigh will walk again before her brother does.

Sweet story: This demonstrates how sweet our little girl is... She received a gift the other day. There were two rubber duckies. She said (without prompting), "Look two duckies. I can give one to Ryan". This blew my mind. She is 3. How many 3 year olds would come up with this idea on their own. This kid has a good soul. No matter how sick she is - this innate goodness comes out. She has to make it. The world needs more people like her.

Sunday, January 23, 2005 10:49 PM CST

Hi eveeryone,

Great weekend. Ashleigh was worn out all weekend from wanting to do so much and playing hard.

Saturday, we put up the Christmas tree. Ashleigh started putting ornaments on until she got too tired. Today, she put on more ornaments. She also enjoyed going outside and being pulled around on her sled. Tonight, she helped give her baby brother a bath. He was so funny. He gets very excited and is quite the performer. Ashleigh was laughing to hard at him. She also enjoyed her own bath tonight and played for a long time in her tub.

Medically, oxygen sats have been great. We have not needed oxygen at all. Blood pressures have been an issue and concern. The docs think her blood pressure keeps shooting up because her kidney is working hard to get up to speed. We had to call the doctor on Saturday and he increased the frequency we give the blood pressure med while lowering the dose.

Meds: We are done with a few meds. However, we still give 7 different meds and 12 doses throughout the day. This has not been fun.

Eating: This is becoming a big issue of concern. Ashleigh has absolutely no desire to eat. She has lost about 1.5 pounds since we left the hospital. She will only take small bites of yogurt and applesauce after we get stern with her. We are very concerned if she doesn't start eating soon, she will need an NG tube for feeding.

Positive things: We are slowly getting more and more of our old kid back. Since some of her heavy duty meds are done, Ashleigh is able to speak better. Also, her old laugh is coming back. Before, she had what we called her "drugged laugh". Her sense of humor is also coming back. And, tonight, I had a conversation that required me to answer endless inquiries of "But why".

A few things are hard to take. This poor kid has been through so much. We are working with her to get her standing and eventually walking. She seems scared to try. Also, the med thing is horrible. She often cries when she has to take so many meds. Sometimes, mom or dad has to "get tough" and hold her down to syringe in meds. This is horrible and never gets easier. Especially, when Ashleigh is in a good mood and enjoying herself. Then we have to ruin her fun by giving yucky medications, AGAIN.

Also, the emotional impact of her trauma from what happened in the hospital is obvious to me. She has started this sobbing thing. Before, she used to do a kind of mad cry. This sobbing is sort of a helpless cry and it breaks your heart. I'm worried a little depression is starting. Out of nowhere tonight Ashleigh said, "I want to go to daycare again." Sobbing, she elaborated "I miss my freinds." This is coming from a three and a half year old. This makes me tear up just writing it. This poor kid.

Next week: Tomorrow, regular clinic appointment. Ashleigh will likely need a platelet and possibly blood transfussion. Radiation will start Tuesday and will encompass 12 sessions. This week will also include a MIBG scan and MRIs. Busy week.

I have to run. Will update every 1-2 days this week.

Take care.

Friday, January 21, 2005 10:11 PM CST

We are home!!

Aunt Angie summed things up well. How do you like the pictures? Ryan (isn't he a big moose for 8 mths old ) was very excited to have big sister home. He was also excited to have mommy and daddy home for most of the day.

It's just starting to sink in we are home, hopefully for good. We are very nervous though. Ashleigh's blood pressure creeps up througout the day until we medicate it. She is sleeping right now hooked up to an oxygen saturation and heart rate monitor. Also, she is getting a IV fluid throughout the night. Even thought there is medical equipment in her room - it is still her bedroom. It was awesome to see her snuggle into her bed today and tonight. She loves her bed.

We are working hard on giving all the meds. It's really crazy how many meds she is getting. We are also trying to get her to eat. We don't want to go back to another tube.

Thanks to our neighbors who decorated our house for Christmas. Ashleigh was very excited when we pulled in. She asked me, "Daddy they glow in the dark at night?" She was also very excited we had snow in our yard. Tonight, we took her outside to see everything lit up and she really liked it. We are very lucky that we live in a "neighborhood" with good people. That's hard to find nowadays.

So, we are happy, exhausted, nervous, etc. I can't believe we're home. We still have a long way to go. But, I think being home will make our strong little girl even stronger.

Take care all and have a good weekend.

Thursday, January 20, 2005 10:35 PM CST

Hi everyone,

Last night was a good night. The Care Bear/ice eating scenario played out again. However, Ashleigh waited until 3:30 am to wake me up.

Overall, today was a good day, busy day, and interesting day. The morning started out with Ashleigh in a very good mood. She spent most of the morning in the play room.

Early in the afternoon, she had to be sedated and had a bone scan. Also, they took out the NJ tube. Another tube out. We are finally back to the original one tube, the Broviac.

Interesting part: The original plan was to replace the NJ tube with an NG tube. Amy was very concerned Ashleigh would not be able to tolerate feedings through an NG tube and would throw up everything including the tube. One of the doctors involved (the nephrologist) and his dietician heard of the plan and they said there is no way Ashleigh would be able to tolerate the prescribed feedings. So, the doctor said they were just going to pull the tube and he expected Ashleigh would start eating in a couple days. No nutrition until she eats on her own. This kind of freaked us out. But, we trust his judgement and opinion. Also, Ashleigh has gained about 5.5 pounds due to the tube feedings. So, she finally has a little reserve she can burn off.

Now the challenge is getting in all her medications. Before, we just pushed them through her tube. Now everything is by mouth. Many of the meds do not taste good. She is currently taking 10 different medications. Many are a few times per day. Basically, she gets 19 different doses of medication during a 24 hour period. Sometimes we have to hold her down while she fights in order to quirt the medications in her mouth. Obviously, this is very unpleasant. She also throws them up occasionally and we need to give her a new dose. So, basically... this is insane. Luckily, some of the meds will be done over the weekend.

Speaking of medications, I just had to wake her up to give her a blood pressure medication. Her blood pressure occasionally creeps up due to her kidney not quite being 100 percent. The medication works well. Waking her up to give it stinks.

Oxygen sats looked great today. They even hung in there well after sedation. We probably had one of our best days in regard to the oxygen/breathing issue.

On to the good stuff. Today was day 60 of our hospitalization. We are also day 52 since transplant. At this point, we are planning to be discharged tomorrow. Isn't that great? A lot of the staff describe this and Ashleigh as "amazing". Given how sick she was a few weeks ago, I guess it is remarkable how she has turned things around. Hopefully, there are no major events tonight. I think Ashleigh will be very happy to be home. Even though we have a lot of work ahead of us, it will be nice for all of us to sleep in our own beds again.

We are hoping to be home tomorrow afternoon. Hopefully, we will not have to be re-admitted. We have 48 more days until we hit the magic number, 100 days post transplant. That's when our T cell friends will be here and able to help Ashleigh fight off viruses.

Take care everyone. Hopefully, I be able to keep providing good news.

Wednesday, January 19, 2005 9:34 PM CST

Hi everyone,

Busy day. Good day.

Ashleigh had another good night with no need for oxygen. Here is a good story. For the past four nights, Ashleigh woke me up at about 2:30 a.m. and asked to watch a video. When I explain to her it's late and we should be sleeping she says "Daddy, I'm hungry". I get excited and ask her what she wants to eat. (the quicker she eats, the quicker we can get rid of the tube) She responds, "I want ice". ha ha ha So, I go get her ice and we watch a video and go back to sleep. I keep hoping she'll say yogurt, fishy crackers, or even tuna. Not yet.

Today I worked at home all day cleaning. The house is ready. Everything has been steam cleaned and their is no dust anywhere. Amy held things down at the hospital and worked all day on discharge planning. There is a lot to get set up before we go home including meds, oxygen, breathing treatment stuff, and tube feeding stuff. Also, they are planning to start radiation Monday. There are also several tests next week. It will be a busy week with Ashleigh coming to the hospital every day. At least she'll get to sleep at home and Mom and Dad will be able to see Ryan for more than and hour or two a day.

Tomorrow is a big day. We will probably switch feeding tubes. We are nervous about this. Ashleigh could possibly not tolerate feedings through the NG and may throw it up.

Today her blood pressure was a little high. We are not quite sure why this happened. She needed a med to bring it back down. We will have to keep an eye on this.

No snowman today. However, Ashleigh rode her bike a lot and spent some time in the playroom She is slowly getting stronger and was able to move pretty fast on the bike tonight. She isn't showing much interest in trying to walk again. I think this will come back when we are home. Her mood seems to be getting better gradually. She is joking and laughing more.

So, keep the positive thoughts and prayers coming. Hopefully, tomorrow is smooth.

Take care.

Tuesday, January 18, 2005 9:08 PM CST

Hi everyone,

Another good day. I like saying that.

No major developments/problems today. Ashleigh had a chest x-ray to make sure there isn't any pneumonia brewing. The x-ray showed little pockets of fluid here and there but no infections. She has been started on an antibiotic just in case, hoping she will go home soon.

Today also included a trip to the play room to paint. Ashleigh painted a picture for Daddy to put in his office. She said it was a boat. It looks pretty cool. It also started us talking about this coming summer when we will be spending lots of weekends at the lake and on Grandpa Dinger and Esther's boat.

We also took a bike ride tonight. We went up to the ICU to say hi to the people who took care of Ashleigh when she was so sick. They usually only see the kids when they're really sick. When they start getting better they transfer off the unit and they never see them again. So, I think they liked seeing how their hard work pays off as Ashleigh rode up on the bike.

That sort of provides a good segway to tell everyone what wonderful treatment Ashleigh has recieved at DeVos Children's Hospital. It is amazing how the nurses are so dedicated in what they do. Also, Amy and I are not always the easiest to deal with at times. We are always very involved, ask a lot of questions, and are sort of demanding for answers and reasons for tests and changes in her treatment. Almost all the docs have been great too. I think one was not entirely pleased with our participation in Ashleigh's treatment and demands to be involved in the decision making. We could tell in reading his notes in the chart. Yea, we read through the chart from time to time. Amy's knowledge has really helped out a lot. Who knows where we would be without her catching things and contributing to the decisions and direction of Ashleigh's treatment.

Plans continue for potential discharge on Friday. Thursday will be a big day. That day we will likely change Ashleigh's feeding tube. There is a chance her stomach will not tolerate the change. This could keep us in for a few more days. Wish us luck.

Tonight snow is forcasted in Grand Rapids. It looks like I will be building snowmen tomorrow with Ashleigh. I'll take the camera this time.

Enough for now.

Monday, January 17, 2005 9:39 PM CST

Hi everyone,

Day 57 of our hospitalization. Today was a good day.

Ashleigh had her radiation simulation today. It went well. Her oxygen sats bounced back a lot quicker this time.

A few new challenges will occur as she moves on to radiation treatment. One big challenge is the NJ tube. It has a metal weight at the end and it interferes with the radiation field. So we might have to remove it and replace it with an NG tube. The NG tube doesn't go as deep as the NJ and it will be easier to throw up. Also, there could be some problems with tolerating feedings and medications. The NG is also more uncomfortable.

The other challenge is to hit the entire area where the tumor was with radiation and miss the kidney. The radiology oncologist called this "tricky". One weird potential side effect: the radiation will hit 5-6 vertebrae. As a result, these bones may not grow as well as she ages and she may be 2-3 inches shorter than what her height was supposed to be as an adult. We'll take that side effect. I especially like the part about her height as an adult.

Radiation may start Monday or next Thursday. Ashleigh will receive 12 treatments. Due to the size of the area treated and the tricky angles to avoid the kidney, she will be sedated for every treatment.

And today... another tube was removed! The dialysis catheter was removed. This one was kind of in the chest by the arm pit and very uncomfortable. Ashleigh was glad to see it gone. We are only down to two tubes from our ten while in ICU. All that is left is the NJ and the original Broviac who will be with us until at least the summer.

At this point, we are planning discharge for Friday if things continue to go well. That would be an awesome gift for the weekend. The house will be cleaned. We have a lot of setting up to do with the home health care company. We will need oxygen, potential breathing treatments, an oxygen sat monitor, a tube feeding pump, and various new medications as well as tube feeding formula. No pokes though. Daddy will not have to give shots anymore. Thank God.

Ashleigh is starting to get excited for Christmas and Santa Claus. Remember, we didn't have Christmas yet. I'm kind of getting excited too. When we get home we have to decorate the house and set up the Christmas tree. I can't wait.

Things are looking up. A few short weeks ago it looked like she wasn't going to make it. I think everyone has been amazed by her turn around. I can tell you... She never gave up. Even when she was on the vent and paralyzed, whenever she broke through the sedation, she was fiesty. That must have been what pulled her through.

Hopefully, no surprises, we will continue to progress, and Ashleigh will be sleeping in her own bed this weekend.

Sunday, January 16, 2005 10:06 PM CST

Hello everybody,

Another great day. Ashleigh was able to go home again today. She was home for about 5 hours and had a great time.

Things remain stable. There is a small concern that has developed over the past few days with an elevated amonia level. We think it is being caused by a slight bleed in the GI track coupled with constipation. This isn't a huge concern at this point as long as we can get Ashleigh to move things out. Medication has been helping this to a certain degree.

Oxygen issues are about the same. No substantial eating yet. We have about a week to go on the weaning of the meds for withdrawel. I can't wait until that's done. I think once Ashleigh is off these particular medications, the bowels will start working better and appetite may begin to develop.

Tomorrow will be a big day. Ashleigh will have her simulation for the radiation therapy that will begin soon. Basically this will involve sedating her and getting detailed measurements and planning for the radiation. They will basically get everything set up to do the radiation. After this, she will have a CT scan of the chest and abdomen. So, tomorrow will probably get stressful. When Ashleigh comes off sedation, her oxygen sats tend to drop and it takes a while to get her back up to an acceptable level. This week will also involve other tests.

Interesting development: Today, the bone marrow doctor started talking about discharge. Can you believe it? He said best case scenario - we could get out at this end of this week! However, there are many things that could keep us in. So, I'm trying to not get too excited.

Therefore, I need to make a lot of calls to have the house cleaned. After transplant, you basically have to have your entire house thoroughly cleaned (all carpets steam cleaned, etc.) before she can come home for good. It's probably best and easiest to have it professionally done. We are also going to have the furnace ducts cleaned. With all the construction that happened behind us, the ducts are probably full of nasty fungi and other potentially harmful stuff.

Hopefully, I can get this done soon. I would hate to have to prolong potential discharge because the house isn't ready. The doctor kind of sprung this on us. We didn't expect to have this conversation for a few more weeks. Ashleigh has just been doing so well the past few days.

So, that's big news. Maybe we will have some of our life back again in the near future!

Wish us luck for tomorrow and the rest of the week.

Saturday, January 15, 2005 8:48 PM CST

Hello,

Great day, big day!

As you can see - a new picture of Ashleigh during a HOME VISIT! Her labs looked great this morning and she did not need oxygen at all last night (the first time in a month). So, we told the doctors we wanted to take her home for a few hours. They said okay and we came home for about 3 hours this afternoon.

As you can see, she enjoyed her time at home. It was the most we have seen her smile in several weeks. At first, she did not know what to do/think. But after we were home for about 25 minutes she got into it. She was petting the cat and laughing at her little brother. It was awesome. Towards the end of the visit, she had to get her dose of Methodone and this knocked her out a little. On the way back to the hospital she was very tired and fought closing her eyes so she could look out the car window.

I think/hope this visit did wonders for her. I think it did wonders for mom and dad too. Ashleigh pretty much slept the late afternoon/early evening away when we got back to the hospital. She was so tired.

If labs look okay tomorrow, we may try to get another visit home. We figure, if they let us go home everyday, they may start thinking more about discharging us soon.

At this point, Ashleigh has been off oxygen for about 24 hours. She is not pulling perfect numbers. But hopefully this positive trend will continue.

Dad's health (mental): Mom wanted to do the night shift tonight. Therefore, I will stay at home for the first time in 37 days. It was nice to give Ryan a bath, feed him, and put him down tonight. Also, I get to have a beer! I haven't had one of "Daddy's juice" (what Ashleigh used to call it) in 38 days. That's the longest I've gone without my 'medicine' since 1985! Tastes pretty good.

On that note, I'll sign off. Please keep the positive thoughts and prayers coming. We are cautiously hoping we are moving towards getting discharged in the next few weeks - if nothing major develops or happens.

Take care all.

Friday, January 14, 2005 9:38 PM CST

Hi everyone,

Long day today.

Ashleigh's labs showed a few problems where he had to do another dialysis today. We were supposed to get started at 8:30 this morning. We couldn't get the blood we needed and had to wait. They decided to bring the dialysis machine right to our room because Ashleigh was probably not feeling very well, according to her labs. When the blood finally came, the machine would not work properly. So, we ended up in the outpatient dialysis clinic and didn't end up finishing our dialysis until about 4 p.m.

Ashleigh looked slightly better on her oxygen sats today. She still needs oxygen while sleeping, but was pulling higher numbers today when not on oxygen. Hopefully, this is the beginning of an upward trend.

A new change on the virus front. The docs think we have a good control on the Adenol virus at this time. We may have beaten it into submission. Therefore we are now going after the CMV virus before it causes any problems. This includes a change in medication to focus on the CMV. We will still watch Adenol. But their is concern if we don't go after CMV, a pneumonia could start and this would be very tough to fight. The doctor said a CMV pneumonia can be quite lethal. It's the primary pneumonia that does in AIDS patients.

We were not able to do much fun stuff today. This morning Ashleigh was very sick and lethargic. We ended up trying to get our dialysis done for most of the day and she missed her afternoon nap. She played in bed a little early this evening but was too whipped to go anywhere or do anything. She fell asleep early. I can tell by the way she is sleeping, she is exhausted.

Amy and I think this ordeal is starting to get to Ashleigh emotionally. She was sobbing tonight over little things. We have been in the hospital for 54 days. I can honestly say less than 5 of these days did not involve pain, extreme stress/distress, or both. That's a lot to go through.

Tomorrow, we are going to talk to the doctor about letting us take Ashleigh home for a few hours. We will have an oxygen tank and other assorted breathing gear just in case. We think it could do her wonders to get out of the hospital and see home again. I hope they go for it.

Sorry this entry was not full of good and happy stories. I warned people early on, I'm going to tell you the way things really are - good, bad, and otherwise.

Have a great weekend everybody.

Thursday, January 13, 2005 9:25 PM CST

Hi everyone,

Little change from yesterday. I guess that's good. No major problems. Ashleigh's kidney labs did look a little off this morning. We hope she will be done with dialysis. But, we may wait a little while before removing the dialysis catheter until these labs settle down.

Oxygen sats were about the same today. However, her cough is different. It's more productive. Hopefully, this is a sign she will be able to move the junk out of her lungs better.

I think Angie was planning to put up two new pictures of Ashleigh. Believe it or not, she looks really good in these pictures compared to how she was a few weeks ago. In the one with her Michigan State shirt, she is doing her mouth care (a tooth swab with an antibacterial solution). The tape on her face is holding her NJ tube. Notice, no oxygen in that one. In the other picture she is in the playroom creating a masterpiece. Sorry no pictures of her and her snowman. I'm kicking myself we never took the camera with us. Next time I will make sure to get a picture.

Today Ashleigh got out of her room a few times and down to the playroom to play and draw in this big cardboard house. I got her laughing pretty good by pretending to get my head stuck in the window. We also threw pennies in the fountain. She was a little disappointed her snowman melted. But she understood and we made a "pinky swear" promise we will build a new one when we get more snow.

So overall, no new developments. I'll be glad when she is weaned off the withdrawel meds. They keep her kind of spacey at times. Her speech is also affected. She talks very slow and can not put a lot of words together. She would rather communicate through nods and head shakes.

Wish us luck for a good night and maybe some progress tomorrow.

Wednesday, January 12, 2005 9:47 PM CST

Hi everybody,

Ashleigh had a good day. No major events. No big changes. She needed a little bit of oxygen while sleeping. When awake she pulled adequate oxygen sat numbers. They weren’t great, but enough where she didn’t need oxygen. Eating was about the same. She lost .4 kilo last night, which is good.

Today, mom decided to let Ashleigh have a day where she could sleep as much as she wanted. She took advantage and slept a better part of the day. She was also up sitting in a chair with Mommy and read a lot of books. No trips outside because it was raining. She enjoyed a good bath tonight. I think the extra sleep did her some good. She looked more rested when I came back to the hospital after work at 4pm. Tomorrow we will get her up and moving around more.

We are still concerned about the leg. There does not appear to be any overt fractures but there is evidence de-calcification has occurred. Our orthopedic doc is off for two weeks. So, we don’t quite know what this means for Ashleigh. We may try to have her stand a little bit tomorrow. But, we won’t push it.

The nephrologist said we should be able to remove the dialysis catheter in the next few days if Ashleigh doesn’t need any more dialysis. That would be another tube gone.

We had a meeting this evening with our oncologist, the bone marrow doc, and the bone marrow nurse to discuss the next round of treatment, radiation. We will do the simulation for the radiation treatment next Monday and probably start the radiation treatments the following week. The simulation is kind of getting the specific measurements and plan of where to radiate. We are not sure about the amount or duration of radiation at this point. We do know we will only be radiating the site of the original tumor in the abdomen.

With the other things, we just keep plugging along. No new news on the virus front. We are still waiting/watching for pneumonia. The withdrawal med weaning is going well. However, we probably will not be done weaning her until 1/23. That will be nice. She won’t be as tired or zoned out when she gets off these meds.

I hope to get some pictures to Angie to put up on the website soon. Ashleigh has not looked very well the past several weeks. She is starting to look better. Pictures of her up until recently would probably been upsetting to see.

Take care everyone.

Tuesday, January 11, 2005 10:20 PM CST

Hello everybody,

Today was okay for Ashleigh, tough for mom and dad.

Ashleigh had an echocardiogram today. The results were good with no cardiac function problems or fluid around the heart. The x-rays of the legs/hips did not show any fractures or overt major problems. Although, they haven’t been read by a pediatric radiologist yet. Ashleigh also had a chest x-ray. It didn’t show any major fluid problems. There was an area that looked a little “wet”.

One of the biggest concerns today is Ashleigh continuing to have difficulties keeping an adequate oxygen sat level. She needed oxygen on and off today. Without oxygen, she pulled numbers that were barely above the level were continuous oxygen is needed. Nobody quite knows why she was improving with this issue and took a step back. She has sort of maintained the same pattern for a few days now. Most of the docs said they are concerned and expected she wouldn’t need oxygen this long. So, we will keep watching this and they are going to try to take off more fluid, hoping this will help to improve her breathing.

Another concern was when Ashleigh complained of pain during physical therapy a few days ago in the leg where she had two of her fractures. The x-rays did not show anything. So, as a result of this pain, they want to do an MIBG scan early next week. The MIBG is a body scan that picks up Neuroblastoma cells. The concern is whether cancer may have re-emerged in the bones, resulting in pain. If you recall, her MIBG on Nov. 17 did not show any cancer present. The doc said he doubts the cancer would have come back this quick. However, it is a possibility.

This last issue resulted in mom and dad not having the best day. Can you imagine, with all the extra problems and struggles Ashleigh has been through, cancer showing up this quick again would obviously be the worst bad luck. It seems hard to believe the cancer could show up this quick. However, this cancer is very aggressive and it was remarkable how quickly it destroyed bone in Ashleigh. That occurred in a matter of weeks.

There were a few good moments today. We went outside twice and built a new snowman. Also, Ashleigh asked to walk in the snow. So, I held her up and she enjoyed making a few footprints. Uncle Steve and Aunt Angie came to visit tonight. Uncle Steve has always been able to make Ashleigh smile since she was a baby. She was very happy they came to visit.

Sometimes this roller coaster seems too hard to take. There is little relief and constant concern. Being reminded of the nature of this type of cancer brings the concept of Ashleigh not making it into your mind again, resulting in a lot of turmoil. Also, living here at the hospital wears on you. Last night it was loud out on the unit. There were two kids who were sobbing intermixed with screams of pain during much of the night. Also, I saw a new family and it was obvious they were a new diagnosis. You can see it on their faces. I’m also worried about a boy named Trevor who had the same clinic days as Ashleigh. He ended up in ICU the day after we left and I learned from his mom he was in bad shape. I haven’t heard anything about him or seen his mom around the hospital. That’s not a good sign. The amount of pain and agony on this unit is mind blowing. Then throw in children dying as a somewhat regular occurence. This is definitely hell on earth and I live here.

Hopefully tomorrow we will see progress again. Send your positive thoughts and prayers for her lungs to start working 100% soon.

Monday, January 10, 2005 9:28 PM CST

Another pretty good day.

Last night Ashleigh slept well. She managed to drop .4 kilo (.88 lbs.) of fluid yesterday. That was good. She is still a little puffy and needs to get more fluid off.

Today went well. Ashleigh needed a small amount of oxygen during most of the day. However, she has been off oxygen for about 6 hours at this moment. She is falling asleep now and her oxygen sats are dropping. I’ll probably have to give her a little bit of oxygen for sleep tonight. Eating consisted again of a few bites of yogurt and Popsicle. She drank a little juice and said it tasted good. No problems with blood pressure today.

New concerns: One of the docs thought he might have heard some irregularity in Ashleigh’s heart beat today. Therefore, she will get another echocardiogram (heart ultrasound) tomorrow to check for any problems. Also, during physical therapy, Ashleigh complained her leg hurt. So, we are going to get our orthopedic doc involved again and possibly do some x-rays before we start trying to get her to walk again. I don’t think she could have any fractures again. But, we need to get things checked out.

Ashleigh did some time on the bike again and down to the playroom. Also, her brother came to visit at her request. In the early evening she asked if we could take a ride in the stroller to the fountain to throw pennies and outside to check on her snowman. She got so excited to see he was still there and did not melt. She didn’t want to come in from outside.

Tonight was also a big night in that Amy went to stay at home tonight. This was the first time in about 34? days that either of us have stayed at home. She is very nervous being home tonight. One of us being at home at night is good for Ryan as well as us.

I had to draw money out of Ashleigh’s Care Fund today. I just wanted to thank everyone again for your extreme generosity. I’m blown away. As some of you know, Amy has been off work caring for Ashleigh since June. Actually, she was off on maternity leave when Ashleigh was diagnosed. Also, I cut my work way back and I’ve ended up losing a lot of business because I have not been as available and I’ve also been late on reports, due to all the unexpected problems in Ashleigh’s treatment as of late. Therefore, your generosity will help get us through this year of treatment without financial ruin. I would love to thank every one of you personally (and I will try). Besides trying to thank you personally, I will be dedicated to donating some of my time and professional expertise to people in need after this nightmare with Ashleigh calms down.

Thanks again to all of you.

Sunday, January 9, 2005 9:51 PM CST

Good evening everybody,

Today could best be described as decent. Ashleigh was sort of grumpy for most of the day. She seemed pretty tired. Last night she slept like a rock. She needed a small amount of oxygen for most of the day, especially when sleeping.

We were somewhat disappointed that she had to be on oxygen. We were probably more worried we were heading back down a bad road. But we didn’t and no major events or problems today. One of the docs said not to get disappointed with moving three steps forward and then one step back.

Ashleigh’s kidney is putting out decent. They added another diuretic in hopes to remove more fluid and sort of shrink her down a little. She is only a little puffy nowadays. Blood pressure creeped up a little. But, we didn’t have to knock it back down with meds. Eating was up to three bites of yogurt per meal and a few bites of popsicle. We have to remember our baby steps concept with this issue.

Fun stuff: Yes, Ashleigh got out on her bike today and down to the playroom for a little painting and playing with puzzles. This evening we got permission from the doctor to go off the unit. We took Ashleigh out to the lobby and she enjoyed throwing coins in the fountain. Then we took her over to a window to look out at snow on the trees. She said she wanted to go outside to see the snow. So, I ran back up to the room to get her coat, hat, and mittens. We were outside for a while. Ashleigh wanted me to build a little snowman for her. She also had fun throwing snowballs at Dad while sitting in her stroller.

We just have to keep getting her out of bed and out of her room every chance we can. The problem is many of the meds she is taking make her exhausted. Especially, the meds to combat withdrawal from everything she was on in intensive care.

Amy had a copy made of her med schedule made for us. Ready for this: Ashleigh gets meds 14 times over 24 hours. She is currently on 11 different meds every day. Certain times of the week, one or two more are added. I remember when Amy and I would be worried when she had a cold and we gave her Benadryl three nights in a row. Some of the docs have commented that she seems to have a tough liver and stomach. I told that that’s not surprising – she is a Pollock.

Anyway, we keep plugging along. We are kind of in a rehab phase now while we continue to fight the viruses. We are trying to get the kidney, gut, lungs, and muscles working on their own again. This takes a while. We will have to rehab her to walk again. If you remember, we already did that once.

Enough for now. Thank you for your support. Also, thanks for the messages posted in the guestbook. I read them every night and they help me a great deal in trying to cope. Take care all.

Saturday, January 8, 2005 10:03 PM CST

Hello everybody,

Another good day. Can you believe it – two in a row.

Last night Ashleigh slept well all night. Today, another day with no major events.

Labs are continuing to look a little better each day. Ashleigh tolerated her respiratory treatments well. Blood pressure was high once, but easily fixable. We were even able to get her to eat a few bites of yogurt tonight. She didn’t want to at first, but eventually took a little bit and was able to keep it down. We will try again tomorrow. We have to get her back to eating.

Oxygen: Ashleigh was on a small amount (half liter) last night while sleeping. Amy came to relieve me at 6 a.m. We looked at Ashleigh and found the canula was on top of her nose. She wasn’t getting the oxygen and still pulling decent oxygen sat numbers. During the day today she was off oxygen for 10 hours. That was great but a little scary. That’s the longest she has been off oxygen in 6 weeks. She needed some “blow by” oxygen during her nap this afternoon. Right now she has her canula in and is getting a half liters while sleeping.

We did some time on the bike and playing in the playroom today. Ashleigh had a lot of fun but got tired very quickly after getting her Methadone. Baby brother Ryan came to visit tonight. He made his big sister smile a few times.

Overall, another good day. Amy and I actually started talking about one of us maybe being able to sleep at home again. Neither of us have slept at home in 32 days. We have a room at the hospitality house connected to the hospital and take turns sleeping there. This has helped out a lot. The person sleeping in the room is only two minutes away when things get bad. If Ashleigh can continue to have stable nights and good days, we could switch off going home in the evenings like we did during the chemos. That would not only be good for our sanity but it is also good for Ryan who gets to spend time with a parent and we are able to put him to bed at night and get up with him in the morning.

So, we are trying to enjoy these good days and nights. Still, we continue to be nervous about the unexpected problems. Hopefully, we are over the hump.

Friday, January 7, 2005 10:22 PM CST

Hi everybody,

Today was the best day we have had in six weeks!!!!!!!!!!!

There were no major events. Ashleigh did well with all her treatments. Her labs are looking better. We had a small issue with high blood pressure. However, the nephrologist (kidney doc) said this is an after effect of the dialysis. He prescribed a medication that offered a quick fix. We only use it if we need it. Her diarrhea was better. The chest x-ray this morning showed the portion of lung that was collapsing is better. She needed a small amount of oxygen throughout most of the day. However, she was totally off oxygen for about 5 hours this evening and did very well.

Today our mission was also to get her up and out of bed. We have a little tricycle here Ashleigh loved to ride around during her other hospitalizations. She protested when we put her on. However, within a few minutes she was peddling down the hall with a little help at first. She is still so weak. This was the first time Ashleigh had been out of her room in 6 weeks (not counting her being in bed and wheeled down to another room for a procedure). The staff were somewhat amazed and happy to see her out and about. She rode through the entire unit and down to the playroom. Ashleigh was hesitant at first, but with a little coaxing, she decided to stay in the playroom and play. We were in the playroom for and hour and a half and she painted a wood cutout of a turtle. She had a great time and rode the bike all the way back to the room. She was so exhausted she could hardly make it back.

When we got back to the room, Ryan was waiting for her with Aunt Peggy. Ashleigh was so happy to see him. Ryan was being Ryan and he made Ashleigh laugh. She had a great time playing with her little brother. They had some great moments and it was such a joy to see her so happy.

This evening we had our first bath in over a month. Ashleigh protested at first but got into it and acknowledged it felt good to get clean again.

So, overall, an awesome day. Amy and I are so cautious to celebrate, being concerned the night will go bad or we will fall back into major problems. I guess we are sort of traumatized from what we have been through the past month.

We continue to push forward. We still have a long way to go. But, the more Ashleigh does to get back to her old self has to help with her healing. I can’t wait to get her out on the bike tomorrow. Hopefully, another good day tomorrow.

Thursday, January 6, 2005 10:10 PM CST

Wow. What a day.

Last night went fairly well. Our first night back on the oncology unit. I think Ashleigh was happy to be back. She wanted to watch the “Funny donkey movie” (The Emporer’s New Groove). During the video she actually laughed. I have not heard her laugh in 6 weeks. It was so awesome!

During the night, Ashleigh’s oxygen sats dropped steadily. Her oxygen had to be turned up significantly. Then the day from hell started. About 6:30 a.m. her NJ tube plugged. This is the tube she gets most of her meds through as well as her tube feedings. The nurses tried all kinds of tricks to get it unstuck. Amy worked on it forever. Finally, one of the intensive care docs tried to unclog it by running a thin wire down the tube. No luck. She needed a few meds that do not come in IV form. So, we started getting ready to pull the tube and put in another one – the third NJ tube in two days. We had to give her a platelet transfusion so she wouldn’t bleed a lot during the procedure. We sat and waited as Ashleigh’s oxygen sats dropped more. Things were getting desperate. We needed to get this new tube in before she had dialysis. She needed the dialysis because she was loaded with fluid and a small area of her lung was collapsing due to fluid. The dialysis will remove the extra fluid. Amy and I were a wreck. Amy couldn’t sit still and just kept working on the clog in the tube. Finally, it unclogged after Amy worked on it for 4 hours!

We made it on to dialysis as Ashleigh was bottoming out on her oxygen sats. She had to move to a mask and things were bordering on dangerous. The docs said they wanted to check the NJ tube after dialysis and also needed to put in an NG tube (this goes up the nose and into the stomach) in order to deliver a medication Ashleigh needed desperately to avoid kidney damage.

Ashleigh did great in the dialysis. They were able to pull off a lot of fluid and her sats improved. Her heart rate also went down to normal. The fluoroscopy of the NJ tube showed it was working fine. The NG med thing was a little tough, but they got the job done. She had to be sedated for this and with this particular sedation her oxygen sats drop for a period of time. Amy weaned her oxygen back to a reasonable level earlier this evening.

Right now, we are back in our room. Ashleigh remains on a fair amount of oxygen. She is exhausted and sleeping. We thought we were going to end up back in ICU today. We may still tonight if her oxygen sats take a dive again. They have been dropping a bit tonight. Probably not much sleep for me tonight – watching monitors again.

This poor kid can not get one day where a major event doesn’t happen. It’s exhausting. It would be so nice if she could rest tomorrow and not have anything major happen. I’m just going to hope nothing major happens tonight.

Wednesday, January 5, 2005 7:57 PM CST

Hi everybody,

Sorry no update from me yesterday. We were dealing with major problems until after 11 pm. Angie left about 8 p.m. Things got rough again. Ashleigh continued to have problems with her NJ tube. We eventually had to pull the tube and put in a new one, the second new NJ for the day. It was horrible. Imagine holding down a 3 year old while they put a tube up her nose, down her throat and weave it in her intestines. Yea, not fun.

Sorry. On to positive things. Ashleigh was moved off of pediatric ICU and down to the general oncology floor today!!! I’m blown away and everyone else is surprised how quickly she turned around after being taken off the vent. We were in ICU for 28 days. Can you believe it?

Amy and I are happy to be on the 7th floor again. Don’t get me wrong, the nurses and docs in ICU were great. We will miss them. Hopefully, next time we visit will be when Ashleigh is walking around and at the hospital for her outpatient clinic visit.

We are also scared to death being here. You get used to all the extra attention you get in ICU. We had our own nurse and Ashleigh was her only patient. We have to share a nurse here. However, we sort of feel more comfortable here and appreciate having our own bathroom again.

Ashleigh is doing okay. She remains on a small amount of oxygen. She is dealing with diarrhea the past few days and continues to throw up mucus 4-5 times a day. Blood pressures look great and heart rate is okay. We seem to have a good handle on withdrawals. Ashleigh will get dialysis tomorrow. She is retaining a lot of fluid. However, her chest x-ray looked good today. The virus battles continue with little new news.

We remain very worried about fluid backing up into the lungs again as well as viral pneumonia. We could end up in ICU again. If we do, hopefully it won’t be as serious as last time.

So, good day – great progress. We have come a long way in the past week. Honestly, I’m surprised we made it. I know I’m not the only one. Ashleigh truly was on death’s door a couple of weeks ago. This kid has really fought hard all the way.

I hope we have turned a corner this past week. We will still be here a while. These virus’ have not gone away yet. We are at day 36 of transplant and have been in the hospital 44 days. I keep telling everyone, we can’t stay past day 100 of transplant – her T-cells will be up and running by then. If she can make it through this (hopefully with less pain soon), I don’t care if we get home for Christmas in March!

Wednesday, January 5, 2005 7:49 PM CST

I'll put a full entry on tomorrow a.m. The disk drive in this computer will not allow me to open the disk with my update.

Sorry

Tuesday, January 4, 2005 9:15 PM EST

Aunt Angie's Entry

I am doing Jeff's update for him tonight until he can use the hospital laptop again after they do their big move down to the 7th floor (pediatric oncology). Ashleigh was officially discharged this evening from the pediatric intensive care unit - I think we can do a little happy dance about that!! Its a great improvement over our situation just 2 weeks ago! But, the move down to the 7th floor didn't actually end up happening tonight because of a slight snafu in the game plan. Ashleigh's NJ tube was partially pulled out today while they were trying to position her on the bed. They ended up going through the whole procedure of sedation, fluoroscopy machine, and replacement of a new tube which overall took a few hours. After the new tube was replaced, within an hour or two it was plugged. The nurse and Amy tried numerous times to unplug it and they even did the good old Coca Cola trick (works as good or better than drano if you didn't know :-)but the tube remained plugged. So they rolled an extremely large, portable x-ray machine in and x-rayed her tummy/intestine to find that the tube had actually looped back and had a kink in it. The Dr. used a wire inside the tube and got the kink worked out and Ashleigh was back up and running by about 8:00 PM tonight. At this point everyone was quite exhausted (a lot of restraining was needed during the trouble shooting with the tube), it was getting late, and she started building up with fluid fairly significantly which was becoming more and more visible. Her tummy is fairly distended and her face looks puffy. She also started up with the bad diarhhea and tummy pains that we think are associated with the Adeno virus complications. So overall we all decided it was best to keep her in the PICU tonight, discuss further with the Dr.'s about her fluid build up, and try to do the move again tomorrow if possible.

Ashleigh's heart rate is down to 130 which is a huge improvement over 180 - Steve & were discussing that 180 is basically 3 beats per second - its amazing we couldn't see her heart beating right out of her chest that is so fast. Her temps. looked good and her blood pressure was stable. Oxygen was great all day but took a major nose dive after sedation so she was back on the canula nose tube which Jeff calls her nose fan. I am thinking that once the sedation is totally worn off from the tube replacement procedure, maybe her oxygen levels will increase. She is throwing up a lot - lots of mucous stuff which is good to get it all out. She coughs and hacks a lot also to help her clear things out. She is still drinking water herself and watching videos occasionally. No smiles yet as she really isn't feeling good - if you ask her if she is feeling good she wildy shakes her head no. So that's it for now - we will see what happens with the fluids overnight. Thank you for all the great positive guest book entries - it means a lot to everyone. Have a good night and either Jeff or myself will update tomorrow!

Love,
Aunt Angie

Monday, January 3, 2005 10:08 PM CST

Hello,

Good day.

Ashleigh had no major difficulties today. Last night she was pretty restless and up a lot. Hopefully, tonight will be better.

Today: Ashleigh had dialysis and that went well. The nephrologist was happy the way she tolerated being off the machine for 18 hours. The plan at this point will be a 2-3 hour dialysis every other day.

Today Ashleigh’s heart rate all of a sudden dropped down to a more acceptable and relatively normal level and remained there. Also, her blood pressures were great and stable all day. Oxygen sats were still a little low. Ashleigh remained on a small amount (half liter) of oxygen with a nasal canula today. Poopies are cool. And, there has been some urine output. This is very good considering her kidney did not have to produce urine for the past two weeks. Temps stayed in the low grade fever range. This is good. Ashleigh is retaining fluid. This is somewhat expected with her coming off dialysis. Everyone is watching this closely to make sure her lungs do not get wet again. She has also been vomiting a lot of mucus today. Weird where her vomiting is no big deal. Ashleigh is so used to puking it really doesn’t phase her anymore.

The doctors and nurses told us everyone is pleasantly surprised with how well Ashleigh is doing and how quickly she began doing well. They even said they are starting to talk about her being able to move out of ICU if she continues to do well. Amy told them we won’t leave. We feel so safe here and the regular nurses we get have been awesome. They know how to deal with us well. We like to the regular oncology floor and the great nurses there too. We are just a little traumatized after all we have been through and we are constantly nervous things could go wrong if we move out of ICU. Kind of irrational. But, for what we have been through – understandable.

Other cool things: Ashleigh continued to drink water today. When I got to the hospital after work today; I walked into Ashleigh sitting on Amy’s lap in a chair eating ice chips watching a video. She also sat in my lap and was out of bed for 2 hours. This was great for everybody. The doctors and nurses were also thrilled to see this.

Good day, hopefully good night. No new news about our virus problems. We still wait and hope nothing bad develops.

Take care all. Hopefully, more positive news tomorrow.

Sunday, January 2, 2005 10:52 PM CST

Today was full of great things, nervousness, and a new worry.

Where to start…. First of all, can you believe the week we have had. Tuesday, Ashleigh was still on the vent with several meds and many uncomfortable tubes and IV lines. Now, things are very different.

Positives for today: Say goodbye to another tube. The NG tube was pulled today. This tube was through her nose and into her stomach. Only three tubes left – the Broviac (“spaghetti noodles”), the dialysis catheter (the “spaghetti noodles” on the other side of her chest), and the NJ tube. The heart meds are all stopped now, also. Ashleigh is up to her full tube feedings now.

The big one: The nephrologist (kidney doctor) said Ashleigh is doing so well that lets stop the dialysis and see how she does. Wow. She came off dialysis at about 5 pm. She will get dialysis again. The hope is she will only need it a few times per week if she can tolerate coming off it today. This is a great step. But it makes us nervous. We thought we may be able to try her off dialysis next week some time. The doc said she is doing well enough we can try it now.

So, as a result, Ashleigh is only hooked up to her tube feeding. This is blowing our minds. No IV’s going. She gets most of her meds through the NJ tube.

Worries: Ashleigh’s oxygen sats continue to play funny games. She needs to be on “blow by” (this is an open tube of oxygen blowing by her face) from time to time. We are not quite sure why this is happening. Her lungs supposedly sound and look great. The only thing we can think is the mucus blocking some of her airway.

Another big worry. One of Ashleigh’s cultures grew out active CMV virus. We and the doctors don’t know quite what to think about this. The virus hasn’t produced any disease state yet (i.e. viral pneumonia). We basically just have to watch for any type of infection to arise and potentially add another antiviral medication next week, after results of other testing.

Other worries include the continued high heart rate. Ashleigh will get an echocardiogram (heart ultrasound) tomorrow. Also, we have been watching an elevated temperature the past few days.

On to awesome stuff: Ashleigh was more content today and interacted with us a lot. Her voice is coming back and I think her throat isn’t as sore because she talked a lot today. We read books, she watched a few videos, and she talked with Mommy tonight. While her and Mommy were talking, she put out her arms and wanted a hug. You can imagine how the tears of joy were falling. Also, she actually smiled!! Daddy worked hard at being foolish and she smiled as we played. That was awesome. Another great thing today – Ashleigh sat up a lot and asked to drink water. We were blown away! She had not ate or drank anything in about a month. She really got into the ice water. She actually drank more than her dormant tummy could handle and she threw it up. Then we agreed to only take little sips.

Overall, what a day. What a week. We are nervous. We want to celebrate. But there are so many other things that could crop up and take us back (quickly) to the vent, 9 tubes, and lots of meds. We expect setbacks. Things have been going too well lately. Trying to anticipate and prepare for the setbacks is what fuels our worries nowadays.

Wish us luck in the days ahead.

Saturday, January 1, 2005 9:23 PM CST

Overall, a good day today.

We got rid of another tube today! Good bye to the artery line in Ashleigh's right arm. This one was pretty uncomfortable. It included this board thing taped to her wrist and hand. Only 4 tubes left from the 10 we had a couple of weeks ago.

Also, Ashleigh is almost up to the full amount on her tube feeding. That means the TPN (nutrition through an IV)is gone now too. Her gut is processing nutrition now.

Blood pressures were a little low today but relatively stable. No big or dangerous drops. Oxygen sats were still not great but improved from yesterday. Ashleigh has been off oxygen since 4 pm but will probably need a little bit tonight at some point. We think/hope the oxygen sat problem is due to the amount of mucus Ashleigh continues to produce due to all the tubes down her throat. She seems to clear out and have better numbers after her percussion chest therapy and suctioning.

A new concern is Ashleigh's high heart rate the past few days. She has been running at about 170 per minute. The doctor ordered an EKG and some other tests to rule out any more heart problems. We were also watching a low grade fever for most of the day.

Ashleigh did have some content time today and watched a few care bear videos. She has been talking a little more. Although, she is difficult to understand since her vocal cords are not back to normal yet. Ashleigh is still very weak. But she is getting a little more strength. She was able to rub lotion on her hands today and pull off the sticky lead grounds from the EKG. That doesn't seen like much. But this kid was so weak, she couldn't pick up her hand to point a few days ago.

So, let's hope for a good night tonight and continued baby step progress for tomorrow.

Friday, December 31, 2004 7:37 PM CST

Hi everybody,

Today was a weird day. We had a few positives and a few things we are becoming concerned about.

First the positives: We were able to pull Ashleigh's femural line today. This was a catheter in her femural (thigh) artery. That thing was very uncomfortable. Ashleigh was happy to have it gone. Another tube out, 5 left!

After we pulled the femural line, Ashleigh was wide awake and nodded yes when i asked her if she wanted to watch a care bear video. She watched the entire video before falling off to sleep. This is the first video she has watched in over 3 weeks. This was great. It was a small piece of normal for her.

The sedation meds are getting more settled. This morning was a little rough. Ashleigh was wimbering alot with some crying. This afternoon Ashleigh was more comfortable.

Things that are getting us worried: We had to put Ashleigh back on a nasal cannula today. Her oxygen sats were running low. We are scared to death pneumonia is starting. Also, her blood pressures were a bit lower and we had to increase the one heart med left. If it wasn't for these things, we would be very happy.

Send your positive thoughts and prayers our way. She has come so far this past week. Hopefully the pneumonia will stay away and we can keep moving forward, not slide back on to the ventilator.

Good bye all.

Thursday, December 30, 2004 9:27 PM CST

Hi everybody,

Rough day for withdrawels. Amy had the day shift while I was at work. I went to the hospital for about an hour and a half over lunch. Ashleigh was crawling out of her skin, grabbing tubes, and not feeling very well at all. It was a long day for Amy and Ashleigh.

I talked a long time with the doctor today about her withdrawels. She said trying to get Ashleigh to a comfortable place with the new meds is difficult. These meds are given through her tube and into her stomach. The absorbtion and metabolism is different for every kid and we will need to continue to tweak the meds for the next few days. These particular meds need to be given orally instead of IV. She said it will probably take two weeks to get her past the withdrawels.

Some positives: We had the chest tube removed today. That was great. This thing had a huge plastic lumen on it and the tube went in between two ribs up high. Not very comfortable obviously. Getting rid of this helps Ashleigh rest/sleep/lay on her side more comfortably. Another tube out - six more to go! Remember, we have had a total of 10 different tubes.

Also, Ashleigh had one of her heart meds stopped a few hours ago. She seems to be doing okay with it gone at this point. Another baby step.

Ashleigh needed a little "blow by" oxygen this afternoon for a few hours. She is doing well without oxygen now. The poopie watch is over. Today was... well, very... maybe overproductive in that area. Better to get it out though.

I keep saying this - more "baby steps" today. That's good. They will add up over the next week or two. Ashleigh is finally sleeping now. She looks peaceful. Hopefully, tomorrow will be a little easier day.

Enough for now. Take care.

Wednesday, December 29, 2004 9:08 PM CST

Hi everybody,

We continue with our baby steps.

Last night I layed down to go to sleep around 10:30 pm. I was very nervous and I got up several times to make sure Ashleigh's mask was positioned okay. About 12:30 I got up and our nurse Hilary was in the room. She said, "Hey look, Ashleigh is off her mask and on a nasal canula". I couldn't believe it. Hilary said her oxygen saturations looked so good she kept lowering the oxygen until we could get rid of the mask. Wow. The canula is much more comfortable than the mask.

Things have mellowed out since Aunt Angie's visit at noon. They were able to re-place the NJ tube. Ashleigh was coming out of her sedation (Propofol) when Angie was there. She is never very happy when this sedation wears off. Blood pressures stabelized and Ashleigh's oxygen sats were good. They were able to gradually turn the oxygen down lower. And, they felt comfortable moving the ventilator out of the room. She has been off it for almost 36 hours now.

We are still dealing with the withdrawels. Also, Ashleigh is very uncomfortable with all the tubes and wires. These two problems make her very squirmy and she grabs her tubes alot.

Early this evening, we had Hilary again. She is the oxygen sat queen. She lowered Ashleigh's oxygen again and said "Let's try her without oxygen and see how she does. Worse thing that could happen is we would have to put the canula back on". So Ashleigh has been off oxygen for about 2 hours now and doing pretty well. Some times the oxygen sats are perfect. We are watching her close.

Other things: her tube feedings started again and we may remove the chest tube tomorrow. Cultures of stool came back still showing Adenol virus. However, the concentration was lower. We are again back on the poopie watch. Baby Grumpy bear got more hugs today.

So, overall things are moving along well. We want to get excited but we continue to worry about the unexpected. One thing for sure - getting off the vent was a huge step. Our little girl continues to surprise people with her strength and feistiness. She is doing a great job.

________________________________________
Earlier today....
Aunt Angie's Entry - Wednesday December 29, 2004 Day 29
Things today were just mediocore when I went to visit Ashleigh. Her oxygen has been dropping low and her blood pressure is dropping low and taking major swings. Her NJ tube came out again (it goes in through her nose & down to her intestine) so they had to sedate her and take her off the dialysis circuit to get the tube back in and that wasn't helping the situation. Amy and the nurse have been working full time since 4 AM trying to calm Ashleigh and get her stabilized. Amy was very exhausted when I was there and having to work "full time" next to Ashleigh's bed side. So I just hope that these next few days will be working out some of the bumps and maybe things will stabilize after that - or maybe tonight things will stabilize. I know there were some periods of time yesterday that things were stable so we are hoping for that. OH - Ashleigh tried to talk one time when I was there - it is just a little squeak and we can't understand her but she tried - she is such a trooper and our big sweetheart.

Love,
Aunt Angie

Tuesday, December 28, 2004 8:42 PM CST

Whew, what a day.

As you see from Angie's entry, Ashleigh was taken off her vent today. She has been off the vent for almost 11 hours now and is doing fairly well. She is coughing a lot and bringing up a lot of mucus. She is also getting breathing treatments and percussion therapy for her chest. They have been lowering her oxygen percentage in hopes that she could maybe move to a nasal canula tomorrow rather than the mask.

We actually heard Ashleigh's voice for the first time in almost three weeks. She can't talk very well. But, just hearing her voice made Amy and I shed a tear or two.

One big challenge now is helping Ashleigh through withdrawels from the heavy duty narcotics and sedation meds she was on for so long. We have some meds to help. But she will sort have to rough it for the next few days. I don't anticipate very much sleep for mom and dad this week.

Basically, Ashleigh has no significant sedation at this point. She is very weak and does not feel very well. But, we are happy to have our girl coming back. She even spent a little time hugging "Baby Grumpy Bear" Care Bear today. That was awesome to see.

We still have a long way to go. Getting her body to work on its own again will take some time. And, we are still in a battle with the nasty virus and worried about other unforseen challanges .

We're making baby steps forward. Let's hope setbacks are only minimal in the days to come.

I'll try to update again tomorrow.

--------------------------------------

Aunt Angie's Entry - Tuesday December 28, 2004 - Day 28

Ashleigh is off the ventilator!!!! They took her off at 10:00 AM this morning and as off 1:00 PM she was still hanging in there. She has an oxygen mask covering her mouth and nose and taped to her face to help her breathe. So far her oxygen saturation was holding at 99-100ith the exception of one episode where they had to suction her. She is trying hard to cough as she seems to have a lot of mucousy stuff hanging around giving her a hard time. She is very weak and working hard. Still not able to talk and sedated when I was there. She is having the "shakes". The ICU Dr. basically described this as a bit of withdrawal from the narcotics. He told me she was on some heavy duty narcotics and barbituates and that they have to basically wean her off like a drug addict. It will be a long process to do this and in the meantime she may have the shakes, sweating, nauseau, high blood pressure, high heart rate. They will use 3 drugs to wean her off the heavy duty narcotics. I hope Jeff can describe it better. The Dr. said the next 24 hrs. are critical as to whether she is going to make it on her own off the vent. He also mentioned that although the 24 hrs. is critical, usually within 6 or so hours they know whether someone is going to need to go back on the vent. His only goal for today is to keep her off the vent and try to keep her comfortable - no tweeking of heart meds, blood pressure meds, feeding, etc. She did finally go poopy - that was exciting (its amazing what we get excited about). I hope Jeff will have much more info. tonight when he does his update - this evening and tonight will be critical. Take care!

Love,
Aunt Angie

Monday, December 27, 2004 10:10 PM CST

Hey everybody,

I'm sitting here watching Ashleigh's blood pressures bounce all over the place while the staff scratch their heads. She won't play by the rules again.

The bump in the road today of Ashleigh throwing up her tubes was rectified. They sedated her more, brought in a fouroscopy machine, and re-placed the tubes. Amy herself infused the meds slowly tonight to make sure Ashleigh tolerated them.

Today we started to try to move forward. Ashleigh's cardiac tube was removed. One tube out, eight more to go. Also, we made major steps in trying to get her ready to take off the ventilator. Tonight at 8:30 they put her on a sedation med called Propofol which should put her into a deep sleep. Then they finished weaning her off the Fentynol and stopped the Ativan. Basically, they took her off her pain med and longer acting sedation while keeping her sleeping. This is designed to basically stop her continuous sedation. When they stop the Propofol, she will wake up in 5-10 minutes without any sedation left over. The plan is to try to take her off the vent tomorrow morning, get her breathing well while she is asleep, and then let her wake up.

So, tomorrow could be a big day. We are pretty nervous and excited at the same time. A few potential roadblocks: no poopies yet after lots of meds. Her stomach is getting distended again. It will need to go down so she can breathe effectively. Second thing are these unstable blood pressures. At this point, I don't know what will happen tomorrow.

So, that's the latest. Tomorrow should be an interesting day. Hopefully, we'll catch a break. We are due.

Take care all. Thanks again for all the support.


Earlier Today............
Aunt Angie's Entry - Monday December 27 - Day 27.

Soooo close - they were so close to to taking the steps to getting Ashleigh off the ventilator and then whammo - another set back - darn it. Ashleigh threw up her NJ tube this morning after her meds got infused too quickly. We need this tube in place in order to get certain meds going that are needed to get off the ventilator. Due to a crisis on the floor in another room, they couldn't give Amy & Jeff any timing as to when the procedure for getting the tube back in place would occur. I know Amy is pushing hard and asking almost every hour. I guess the ICU Dr. yesterday worked very hard on preparing the vent settings and getting her as close as possible so that today they could infuse the meds in the tube and get her off. Amy is soo bummed - I feel so bad for her frustration. I know the nurse explained to me yesterday that they are very concerned about Ashleigh getting "vent-induced" pneumonia and especially with her condition of fluids so every day that we have a window of opportunity is critical for getting her off this machine. So I have my fingers and toes crossed that this procedure gets done quickly and they can try again soon. Blood pressure and her temperature continue to do swings but overall everything else seems stable. They did take her heart drainage tube out - that is good. Wish us luck that maybe by the end of this week she can get off the ventilator which would be one major step amongst the baby steps (at least I think so :) Thanks for all your prayers!

Love,
Aunt Angie

Sunday, December 26, 2004 8:41 PM CST

Hi everyone,

Today was a pretty decent day overall. No major problems. Blood pressures were stable. Heart meds were lowered. We are back on the poopie watch again. Nothing happening there, causing some pain.

The intensive care doc talked with us a lot today about trying to get Ashleigh ready to take off the ventilator. He actually might start setting her up for it tonight. The tests they have been doing to see if she will be able to handle it have come back with good results. Her GI system is beginning to show some bowel sounds (movement). This will help to move fluid out of her. Getting her ready includes tapering off her Fentynol (narcotic pain med)with another med called Methodone. Yea, that's the same stuff they use to help heroin addicts battle withdrawels.

So, hopefully, if all goes well, maybe, we could get off the vent this week. Keep your fingers crossed.

Ashleigh had some content time during her awake time. I was even able to read her three books today. She seemed to like it. But, she also got a little sad with a few tears. She also got into the hand holding again.

So, overall today was bearable. Hopefully, the night will be good and I'll have more positive news tomorrow.

Good night all.

Sunday, December 26, 2004 8:41 PM CST

Hi everyone,

Today was a pretty decent day overall. No major problems. Blood pressures were stable. Heart meds were lowered. We are back on the poopie watch again. Nothing happening there, causing some pain.

The intensive care doc talked with us a lot today about trying to get Ashleigh ready to take off the ventilator. He actually might start setting her up for it tonight. The tests they have been doing to see if she will be able to handle it have come back with good results. Her GI system is beginning to show some bowel sounds (movement). This will help to move fluid out of her. Getting her ready includes tapering off her Fentynol (narcotic pain med)with another med called Methodone. Yea, that's the same stuff they use to help heroin addicts battle withdrawels.

So, hopefully, if all goes well, maybe, we could get off the vent this week. Keep your fingers crossed.

Ashleigh had some content time during her awake time. I was even able to read her three books today. She seemed to like it. But, she also got a little sad with a few tears. She also got into the hand holding again.

So, overall today was bearable. Hopefully, the night will be good and I'll have more positive news tomorrow.

Good night all.

Saturday, December 25, 2004 9:48 PM CST

Merry Christmas again.

Today was better than last night. Blood pressures dropped again about 11 am. They cranked up Ashleigh's heart medication and that seemed to work. She had some content time today.

One of the doctors did an ultrasound of Ashleigh's stomach today and found a condition called ascites. Basically, it is pockets of fluid that have collected in her stomach that are just sitting there contributing to her being somewhat distended, not allowing her to breathe effectively and possibly causing the fluid to collect/back up into her lung. The nephrologist and the intensive care doc came up with a plan to try to help clear up the ascites. We are starting up tube feedings again with a more mild formula, adding an amino acid to help repair potential damage in the stomach, and starting a certain type of breathing treatment to break up mucus. They think that getting the gut back working could help to clear out some of the fluid, hopefully keeping the lungs clear, and maybe helping her be able to breathe more efffectively. I hope this will help us get her off the ventilator soon. I miss her.

Enough of the technical stuff. During Ashleigh's alert time, she was in the mood to hold hands. She probably held Mom and Dad's hand for an hour. Towards the end of the hour she was becoming frustrated with not being able to communicate and she had a few tears.

Today was kind of rough on Dad emotionally. Ashleigh was already getting excited for Christmas last month, watching Christmas videos and talking about what she wanted to leave for Santa's reindeer to eat. Instead of waking up excited this morning, she lay in a hospital bed incapacitated. This kid has literally been in agony for almost 4 weeks. It's not fair to her. I wish I could take on her pain and suffering. For example, I started writing this about an hour ago. I've had to go to her side several times because she is mouthing the words "Owwie" while holding her tummy. This is insane.

Sorry, thanks for letting me vent. Hopefully, some positves will begin to come along. One positive is that she is still here fighting. A week ago I wasn't so sure she would have made it this far. Her strength never ceases to amaze me!

Take care all.






Dear Ashleigh - I have some Christmas Eve memories for you today and I want you to know that although you are not with us tonight, we are thinking of you and we Love you very much. Do you know that 4 years ago on Christmas Eve we had a big celebration at Grandma Kate's house in Alpena to celebrate two wonderful things? We toasted and celebrated with your Mommy & Daddy on their news of expecting you in 7 months!!!! Your Mom and Dad were sooo excited - I will never forget it. Boy the Ableidinger and Kelly (Kieliszewski) family's were soo excited to know that their very first grandchild was on the way! We also celebrated the news of your Uncle Steve & I getting engaged on this day 4 yrs. ago. It sure was a Christmas Eve full of excitement and many happy memories- I will never forget it. And I think of last Christmas Eve one year ago at Grandma Kate's in Alpena. You were soo excited for Santa Claus to come visit you and Alexander. You were such a big cousin to help Alexander take his first bath in the "big" tub on Christmas Eve night. You were so excited to get ready for bed so we could read "Twas The Night Before Christmas" before falling asleep. I miss you today Ashleigh. I hope next year we can all once again make wonderful memories to cherish in the years to come! Merry Christmas sweetheart. Happy holidays to the Ableidinger, Kieliszewski (Kelly), McDonnell, and Hepburn family's and all of our extended family's and friends, and to all the people who we don't know that have so willingly prayed for Ashleigh. May God bless you all.

Love,
Aunt Angie

Saturday, December 25, 2004 3:26 AM CST

Merry Christmas,

I hope everyone has a great holiday today. I’m kind of not considering today Christmas for us. We will have our Christmas a week after Ashleigh gets home – even if it’s March!

We have been chasing low blood pressures all night. Yesterday, Ashleigh had a decent day overall. There was one incident of vomiting. Otherwise, no major problems. About 7 p.m., Amy and I were sitting here watching t.v. Ashleigh was sleeping. All of a sudden we look up and her blood pressure is dropping. It went low enough where the nurse had to inject Albumin to bring it out of the danger zone as well as turn up her heart meds. We have not had to deal with this in the past 5-6 days. We were both sitting here with knots in our stomach. We couldn’t believe it.

During the night, Ashleigh received a blood transfusion and platelets. This has helped. Her blood pressures look relatively stable now – not great, but stable. Who knows what will happen today.

Sorry not great news or a lot of positives for today. Great entry from Aunt Angie. It made me smile and brought a tear to my eye. I guess when times are tough you have to be reminded to remember the good times.

Everyone have a great holiday. Hug your kids.

Thursday, December 23, 2004 8:41 PM CST

Good evening again.

Today was... interesting?

Last night went well. Ashleigh slept most of the night and she seemed content. Our nurse knows her well and had the sedation perfect.

Today, I went off to work. Amy called me about 9:30 and told me the routine morning chest x-ray showed a lot of fluid around Ashleigh's right lung and they needed to go in and get it. Tube #9, a chest tube was placed to help the lung drain. The procedure went well. Ashleigh was pretty knocked out for most of the day from the meds to sedate her for the procedure. This tube basically went in between her ribs a few inches under her arm bit. The tube will stay in for a while. What's weird is these things are starting to become routine... a hole poked in her chest and a tube placed - just a typical day in pediatric ICU.

We had another experience of her breaking through sedation and being very awake today. She also pooped like crazy. The staff thinks that's a very good thing. It looks like we won't be off the vent by Christmas. Her tummy is too destended from the virus.

Another day and we alive and still fighting. Hopefully tonight will go well. I'm a little nervous since she was out all day and last night went so well.

Wish us luck.







Thursday December 23, 2004 Aunt Angie's Entry. I really did type an entry yesterday but I just couldn't post it. I was so heartbroken that things had taken a turn for the worse and once I got to the hospital and saw the pain and suffering going on for just the short period of time I was there, I just couldn't find the right words really to describe it. No parents should ever have to watch their child suffer -its emotionally wearing day after day, hour after hour - it seems very unfair. Please pray for Amy & Jeff during this difficult time. I will try to update today after my visit but please read Jeff's update for more details of yesterday. Have a wonderful Holiday.
Love,
Aunt Angie

Wednesday, December 22, 2004 9:15 PM CST

I don't even know how to describe the past 24 hours. We have pretty much had everything - good, bad, very bad, confusion, worry, amazement...

Last night things were moving along fine. I usually stay most of the nights and Amy relieves me at 4 a.m. Around 2 a.m. Ashleigh's blood pressure started dropping. They had to increase her heart medication. We had weaned her down to a low dose over two days. We ended up back at the dose we had worked down. One step forward, one step back.

After Amy relieved me, things started to get rough. Ashleigh was coming out of the sedation and grabbing tubes. She also had a lot of tummy pain. Amy and the nurses could not calm her down. I had to go to work and this struggle went on until about noon. Eight hours of pain and discomfort. Amy and our nurse were fried. Seeing your kid in agony for 8 hours and there is little you can do to help is emotional torture.

Ashleigh was calm and sleeping until about 4 p.m. Then she totally broke through her sedation and was wide awake, trying to talk and grabbing her tubes. They gave her more sedation and it didn't slow her down. I have not seen her this awake in almost two weeks. She could communicate through nodding and shaking her head. It was wild. The nurses were amazed. Now, I'm sure everyone is thinking this is great. Well, it's kind of bittersweet. It's nice to see her look at you and communicate on a primitive level. But, she is also very uncomfortable, in pain, scared, frustrated, and sad. She held up an arm to me and I asked if she wanted a hug. She nodded yes. We hugged and a few tears came out of her eyes as she tried to talk. I still don't know if that was a good experience or a horrible experience for me. Very confusing.

Medically: We were not able to start weaning Ashleigh off her vent today. Her tummy is so distended from the probable infection it is affecting her breathing. This could resolve in two days or two weeks - nobody knows. With the help of medications, she finally had a bowel movement for the first time in 9 days. Some of the doctors think that is a good sign things may improve. We had to stop the tube feedings because of the tummy pain this morning. The chest tube to her pericardial sack had slowed drainage way down. Recently, it began draining more. Nobody knows why.

Tonight her blood pressures have been some of the best we have seen. And, her heart meds have been lowered. However, her breathing has been abnormal and they had to turn up the support from the vent. Trying to keep her sedated and calm will be the challenge tonight since she has this new level of awareness.

Overall, a long day filled with everything I guess. Sort of confusing. But, we made it through another day and she is still here. Time can only help in our fight.

Take care everyone.













Aunt Angie's Entry -December 20, 2004 - Day 20.
No change today in Ashleigh -things seem to be fairly stable which is good. They are working today to get some fluid off her with the dialysis machine. The nurses have commented again and again how spunky this girl is - she fights sedation so much and she does not like to be bothered (thats our girl). Amy truly believes more and more that her blood pressure fluctuations are brought on by her being agitated more than fluid problems. She is still having moments where her eyes flutter and her body moves a little. She is a fighter for sure. That's all for now. Have a good one!

Love,
Aunt Angie


Aunt Angie's Entry -Sunday December 19, 2004 - Day 19

I missed out on seeing Ashleigh yesterday since I came down with some kind of flu bug (or maybe it was the hospital food ??) but I was back to see miss princess today. The first thing I noticed is that she was moving her head around and opening her mouth. They have started to reduce some of her sedation drugs today and they also worked on tweeking the ventilator to get her to breathe a bit more on her own. Things are going pretty good so far - while I was visiting, there was one time where her oxygen saturation dropped real low so they were working on getting that up. She gets very agitated with noise and touch so it almost seemed to happen after one of the respiratory therapists came in and was talking loudly. We all whisper very quietly and try not to disturb her. Jeff said the plan was to continue working on her ventilator and they are going to try again on a small decrease in her heart meds. Jeff thought the next few days would be up and down as far as trying to keep her stabilized while they work on tweeking the ventilator, heart meds, and sedation drugs. He said that hopefully by Tuesday they will insert the permanent line that will be needed for future dialysis and they will remove the large one from her neck. It's seems so long since I have seen Ashleigh move - I told Jeff it kind of scared me because it wasn't peaceful movements. She seems to be grabbing out in pain and her face tells a story of pain so it's kind of hard to watch her do this all of a sudden. Overall we are moving in the right direction - just very, very slowly. Almost like one step forward, two steps back, and then try again. You just wish she could come off all of the machines and meds as quickly as she went on them all - it's such a roller coaster of good and bad days. Well, I am back to my lunch hour visits next week so I should have more updates. Have a great Sunday!

Love,
Aunt Angie





Friday Dec. 17, 2004 - Day 17
Ashleigh is having a hard time today. Her skin has broken down underneath her neck to open sores as a reaction to the tape they use for all the tubing. It looks pretty bad. They started putting some ointment on it and some gauze but it looks infected with huge sores. Her temperature is up high again and it's possible she may have a new infection starting somewhere as green slime is coming out of her nose (even with the tubes in her nose). Amy said her lung culture is showing CMV virus which it did previously so I am not sure if this means the virus is now growing in the culture and its proliferating or what this means. Her abdominal area continues to fill with fluid and her lungs sound more "wet" to the nurse. They were unable to keep her stabilized on the lower amount of heart meds - her blood pressure and O2 sats crashed pretty bad so my understanding is that they are not touching the heart meds for the time being. I was hoping for some better news when I got here but I know that days can be up and down. I am hoping our baby girl will have a better day tomorrow and any possible infections won't take over. I will update if she makes any progress today. Have a good weekend everyone.

Love,
Aunt Angie

Tuesday, December 21, 2004 9:48 PM CST

Hello everybody,

Today was a long day, with good results. (so far)

The procedure to put in a permanent dialysis cath went well. Ashleigh was off dialysis for 4 hours and did not spike a fever. We were shocked. The dialysis cools the blood. It can often mask a fever. Fevers often mean infection. The last time she was off dialysis (for only 40 minutes) her temp shot way up. But, I don't want to overinterpret what we saw today. Just hope it's a sign that the potential infections are mellowing out.

Today we also continued with our other challenges - keeping fluid off, effective sedation, and trying to treat a probable sore tummy. We also kept a watch on blood pressures. They were relatively stable today with a few isolated incidents of mild drops.

Today an NJ tube was added. This is a tube that goes in the nose and extends down past the stomach. This tube was placed to begin "tube feedings" and introducing formula into the GI system to get things moving again. The tube feedings started at 5 pm today and she seems to be tolerating them well so far.

Tomorrow we may begin to try a wean the vent, slowly. We keep being reminded we must do "baby steps". I hope we are now at a place where interventions will be taken away rather than new ones added.

Wish/hope us luck for tomorrow.

Monday, December 20, 2004 8:19 PM CST

Hi everybody,

Well, we're still here. That's okay with me. Our feisty Ashleigh is still fighting.

The latest: Blood pressures have remained relatively stable. We have been able to wean some of Ashleigh's heart medications down. Recently, the vent was turned down to a C-pap mode, allowing Ashleigh to initiate all her breathing. The machine helps to support her. Her lungs showed a small amount of fluid today. So, the dialysis has been working to take some of the fluid off. The tube to her pericardial sack is still draining a little. So, that won't be going anywhere.

Last night things got a little tricky. The dialysis machine showed some weird readings. The doctor came in to look things over and found the catheter going into Ashleigh's neck was not secure. The stitch had broken. The catheter slid out 3 inches and was almost entirely out. That would have been a real mess if it came out. So, we had to hold her head back while he put in another stitch to secure the catheter. No time to numb the area. That wasn't fun but we got it done.

Our biggest challenge lately has been trying to keep her comfortable and not trying to pull out her tubes. Since they are trying to wean her off the vent, they have lowered her sedation. When she wakes up, she is not happy with the tubes coming out of her nose. Last night at 1 a.m. the nurse and I were trying to calm her down. When she gets agitated, the sedation won't calm her down quickly. This afternoon, Amy and the nurse tried to de-escalate her for about 4 hours. Exhausted, she finally fell asleep.

Tomorrow is a big day. We are planning to remove the catheter in her neck and place a permanent line in her chest for dialysis. This is good because the neck line is very uncomfortable and painful. The permanent line will be similar to her Broviac - just on the other side of her chest. So, Ashleigh will now have two sets of "spagetti noodles".

If things continue to be stable, we may try to get her off the ventilator by the end of the week. This will be huge. Ashleigh will be able to talk (eventually) and will not have to be sedated so heavily. We could get our kid back. She may not be a happy camper. But, it will be nice when can communicate with her again. I never thought I could miss Care Bear videos. But, I can't wait until she asks to watch one again.

Again, we move ahead cautiously optimistic. We continue to be nervous, waiting for something to come out of left field. The virus-medication battle continues in Ashleigh's tummy.

At least we are moving ahead... slowly. Keep sending positive thoughts. Thanks again for your support.

Saturday, December 18, 2004 8:13 PM CST

Hi everybody,

It's Saturday night, gorgeous outside with a light snow. We're still here fighting.

We had some luck with stable blood pressure for about 30 hours. We took advantage of this by running her dialysis to take off fluid. This seemed to help. The fluid was reduced on Ashleigh's lungs and her oxygen saturation has been great today. About 4 p.m. today her blood pressure became unstable again and we had to turn down the dialysis and focus on keeping her out of danger.

While she has unstable blood pressure, we can not begin to reduce her heart meds or begin to try to wean her off the life support. So, tonight we'll be watching monitors. Hopefully, things won't get bad where the docs will have to rush in to save her again. That hasn't happened in a few nights.

Ashleigh was beginning to make a bit more sense to the staff recently. I mean her symptom manifestation was sort of "playing be the rules" a little bit more. This blood pressure thing coming back will make everyone scratch their heads again.

Another new change has been that there has been a lot of blood and some tissue coming up from Ashleigh's stomach during suction. Her tummy is very bloated. This could be a manifestation of the war going on in her GI system between this Adenol virus and the medications.

Mom and Dad are trying to keep themselves together. It is very tough. Ashleigh has been sedated for over a weak now and we miss her talking. We miss her in general. We haven't seen her smile in over two weeks.

We are trying to get home (each of us) for an hour or two a day to spend time with Ryan. I think he misses us. Today was tough for me when I was home this afternoon. There was a nice light snow falling and I knew Ashleigh would be so excited to get outside and play. Instead, she's in a hospital bed, sedated, with tubes coming from everywhere. When she does open her eyes, she is usually uncomfortable with pain and they turn up her sedation so she will be comfortable again. Seeing this over and over wears on you after a while.

I dream about having our life back. Being a family and doing nothing on Saturday afternoons was the greatest. I miss just having meals together and Ashleigh laughing at Ryan getting messy. Hopefully, we will experience this again soon.

Enough for now. Take care everyone.


Aunt Angie's Entry - December 16, 2004 ---- Day 16. Ashleigh's bone marrow is engrafted!! Her ANC and her white blood counts continue to rise and go up (I can't remember the exact numbers). YAY - we will celebrate this achievement since this was the whole original goal of doing the bone marrow transplant. OK -the other stuff. Ashleigh is stabilized in the PICU. Her organ function has not gotten any worse, and she has had no major crashes in the last 24 hours. So we have a plan ( I love a good plan). The plan is to take baby steps to get her weaned off meds and enough machines to get her back to floor 7 (pediatric oncology/cancer). They will start with her heart meds and go slowly. She will most likely need to stay on some heart meds, but the goal is to get it to certain ones that have approval to be administered on the 7th floor. Then they will look at removing the large line from her neck and replacing it was a different line on her side for future dialysis. Then they will look at "firing up" her gut with replacing the TPN to being tube fed through a NJ tube so her gut can re-start. Then they will look at optimizing the dialysis amount and see if they can get her kidney fired back up. Then, last but not least, they will try to take her off the ventilator. They assured us that this will take weeks in the PICU and that it will be small, small baby steps to get through all of this. Thats OK - its better than not knowing if she is going to make it another day or not. Also - she will continue to stay on anti-viral drugs as she did test positive in her stool for Adenovirus. This would explain her extreme stomache pain and diarhhea that was going on even before they put the stem cells in. Its frustrating to think it wasn't caught sooner but oh well - we will deal with it now. They tested her kidney for two types of proteins & the one that suggests her kidney will start to work again was there - only in a tiny amount but none the less they found it. I hope Jeff can explain that better since I came in late on the conversation. This is all great news to me and I am happy today! Obviously we have a long road and many things can still happen but for now we have a plan and options- that feels tons better than no options and feeling helpless. I think all the prayers for a miracle have made a difference!

Love,
Aunt Angie


Aunt Angie's Entry - Wednesday December 15 - Day 15.

Ashleigh had a fairly good day yesterday after her surgery until her temperature creeped up to approximately 105°F. Luckily they can use the dialysis machine to somewhat have control over the temperature so they got it down to 101°F and as of today it was about 100°F when I was there. She crashed on blood pressure one time this morning and I believe they had to revive her so Amy said that was pretty scary but I think it has happened quite a few times now so nobody is overly worried about it. Today she started accumulating fluids in her abdominal area and her face is extrememly swollen again. These were the 2 areas that took on fluids first back when this all started becoming a problem before the fluid went to her heart & lungs. Nobody is sure why her body is unable to process the fluid and why it continues to build up. Maybe we will have more answers on this in the next few days. Her bone marrow continues to kick but and I think she will be considered engraphed by tomorrow. Its so hard to not think that if this would have gone normally like other tranplants she would have most likely made it home for Christmas. Amy & I said to each other today that we will try not to think about that. Everyday is another day towards getting better. Once we have a day that nothing happens (no reviving needed, no fever, no fluid build up) we will begin to celebrate a bit of progress. I am staying hopeful that this day will come soon :)

Love,
Aunt Angie


Aunt Angie's Entry - Tuesday, December 14 ----- day 14 10:30 AM

Ashleigh's heart surgery was bumped up to 7:30 AM this morning and they just finished. Everything went smoothly and there were no complications with the procedure. I am sorry for the mis-information but it was not open heart surgery as they did not have to break in through the chest bone. They went in underneath, and inserted a tube to drain the fluid from the sac surrounding her heart. They obtained 68 ml of fluid with normal being 8 ml with someone of her age. My understanding is that the tube is permantly placed and drains out of her chest so that if more fluid accumulates, it can easily be drained. Amy has been watching patterns with Ashleigh's blood pressure and she was convinced that there was a reaction with her medicines and nebulizer treatment throught the ventilator causing her blood pressure to drop so drasically. The anesthesiologist (sp?) said that during surgery he discovered there was a reaction going on between 2 of her meds & basically confirmed Amy's suspicions. So it was nice to feel like we have figured out one piece of the puzzle. Today they will work on continuing to stabilize her from the surgery and get her back and running with the machines. The fluid that was collected from her heart is being sent out immediately for viral (including CMV & Adenovirus), bacterial (gram positive and negative) and fungi testing. We should have results in a day or so. I hear the white blood cells are at 1,500 something today - no word on her ANC count yet -we need to see ANC counts of at least 500 for 3 days to be considered engrafted in the bone marrow. Sometimes the whole reason why we started this - bone marrow transplant - seems so insignificant since we are fighting to keep her organs running. But it does play a big role in the overall scope of fighting stage 4 Neuroblastoma cancer. I suppose I should mention that there is discussion if her kidney does not recover she will need permanent dialysis treatment and also a kidney transplant. One day at a time....that is all we can focus on at this point. Thank you for the prayers today - they are so much appreciated. I will continue to keep everyone updated.

Love,
Aunt Angie

Aunt Angie's Entry - Monday, December 13 ---- Day 13.

Things continue to be in "survival" mode as nothing has improved and things tend to get a little worse each day. They are just trying to keep Ashleigh alive while we continue to determine what virus's are causing problems and how we keep her organs functioning. She is considered to be in multiple organ failure as they put it but they are still able to keep things going with medicine and machines. The procedure to remove the fluid from her heart with a needle was determined to be too risky yesterday due to the location of the fluid. Tomorrow, late morning they will perform what I believe to be open heart surgery to remove as much fluid from her heart as possible. They said today that it looks like most of the fluid is actually behind her heart so I don't think they have a good grasp as to how much is there. They will obviously test and culture the fluid to determine if a virus or infection is present. In the meantime they continue to work "full time" at keeping her blood pressure up. Blood pressure medications only work temporarily. Today they are troubleshooting with some of her ventilator settings to see how those affect her blood pressure. People ask me how the bone marrow engraftment plays into all of this. Her bone marrow IS starting to engraph. Her white blood count was in the 550's yesterday and her ANC count was in the 350's. We were told that what she really needs are the T-cells (a form of white blood cell) to come back on-line before she can begin to fight the virus's. Their estimate on T-cells was about 2 weeks before they come in. We discussed yesterday that its possible we will just continue to do everything to fight the multiple organ failure and keep her alive for the next 2 weeks until her counts come back on board a bit more so her body can fight this. I have to tell you that she is such a fighter - it took them twice the normal dose of paralzying medicine to get paralyzed and she fights it every bit of the way. She still has that fight within her. She is in a constant paralyzed state now but she will come out of it frequently and start moving her toes or head. Yesterday Amy told her "Ashleigh honey - you are doing great - you can do this" and she shook her head no. It breaks our heart to think that maybe she is aware of the struggle going on - we don't want her to suffer -its so hard on us to see her like this. Thank you for the continued prayers as always. Ashleigh is in so many prayer circles around the United States and prayers even coming in from Australia. I am sorry I stink right now at getting e-mails returned to people but I do want you all to know that I read them all, I am just trying to get caught up at work and still get to the hospital as much as I can.

Love,
Aunt Angie

Aunt Angie's entry - December 12 -Day 12 8:45 AM. We were called early this morning to come immediately to the hospital. The fluid accumulation around Ashleigh's heart has become more of a serious problem and her blood pressure was dropping significantly during the night. Medicine was given to up the blood pressure but it didn't seem to do the trick. The Cardiology specialist was called in at 5:30 AM and he proceeded to put Ashleigh in a paralyzed state and wanted to do draw the fluid away from the heart using a needle. The procedure is extremely risky because there is little room there to get to the fluid. After paralyzing Ashleigh, her blood pressure increased and stabilized before they started the procedure of drawing the fluid. They are baffled as to why this happened. They are now going to keep her paralzyed and take echocardiograms of her heart every hour or so to watch the fluid today and determine if they still need to go in and remove the fluid. Ashleigh seems to be a mystery case for them - nothing is making sense to them with her heart,lung, kidney problems and the other symptoms she has. Samples sent to a different lab yesterday showed that she did NOT have Adenovirus while the previous lab said she did. However both labs agree she has CMV virus and we did find out yesterday she is positive for CMV in her lungs so we are still praying for no pneumonia on that front. The anti-viral drug for Adenovirus is still being administered until new samples are tested to determine exactly which virus's she has and where they are. This is turning into an art as the Intesivist said - we don't have concrete answers to the questions and they can only continue to try everything they can think of to figure out what is truly wrong and how to fix it. Thank you for your prayers as always. I will continue to update. Please, please don't call the hospital or the house - the hospital has talked to us about phone calls recieved from people wanting updates. Please, please just e-mail me if need-be as Amy & Jeff need to focus only on Ashleigh now. Prayers, prayers and many more prayers are needed. I am very hopeful that things will turn out. I refuse to accept defeat until the the bitter end when the Drs. tell us there are no more options. She IS a fighter and they have told us how evident that is. May God protect her and keep her strong until she can be with us again.

Love,
Aunt Angie



Entry - Day 10

5:30 PM I am writing from the pediatric intensive care. Jeff has asked me to update the page since I don't think he will be updating anytime soon. Ashleigh has contracted Adenovirus. Its a virus that spreads rapidly and is very serious. We don't know at this point if she will pull through this or not. There is one anti-viral drug they are going to try - they should have it going anytime now. It's a fairly new drug and they don't have a lot of good data as to how well it will treat the virus - especially if her virus is primarily in the lungs. The intensive care Dr. did not think she could make it any longer struggling to breathe on her own so they sedated her and intubated her at 2:30 PM and there is now a ventilator breathing for her. They also inserted many additional lines and she is being hooked up for kidney dialysis right now as her kidney can no longer handle the burden of all of this on top of an anti-viral drug that will hit the kidney hard. So the dialysis machine will take over her kidney function. We have been told that the anti-viral drug is our only option right now. If this doesn't work, there is no plan B, there is nothing else they can do and they have informed us of this fact and have been very honest which we appreciate. It sounds as if we might know by the end of this weekend whether the anti-viral is going to hold this virus at bay. The entire family has been called to hold vigil this weekend. Amy & Jeff have requested no calls or visitors to the house or hospital right now. Thank you everyone for your prayers. We can't tell you how much we appreciate the outpouring of Love. I will continue to update as information comes in. Please know though that Ashleigh is now not having to work to breathe and she can be at rest and peace to fight the battle within her. She is such a fighter - God Bless her. Amy & Jeff got to spend some time alone with her before they sedated and intubated her - they told them to continue to talk to her and comfort her as it can only help her and she can most likely hear them. Thank you for everything.

Love,
Aunt Angie

Thursday, December 16, 2004 8:52 PM CST

Hello everyone,

Wow... Aunt Angie's entry shows she's fired up.

Cautiously, I can say things have been a little more stable the past two days. The last two nights the docs and nurses have not have to stop Ashleigh from dying. This is progress (?). We'll take it.

We still battle low blood presures. We are getting better at preventing it. However, we still do not have an understanding of why it is occurring or how to stop it.

As Angie reported, Ashleigh is engraphted! She now has some capacity to fight off bacterial infections. This should rise to a "normal" immune system (against bacteria) in a few days. However, she will not be able to adequately fight off viral infections for about another 85 days when her t-cells come in.

The other big news for today is that we have a better handle on what type of viral infection we are dealing with...Adenol virus in the gastrointestinal system. This is a nasty virus and we hope it will not spread or become present in the lungs or heart. We still do not have tests back on the fluid around the heart to know what might be going on there. We are treating the virus with a new antiviral drug that shows some promise. However, treating this type of virus is very difficult.

As Angie said, we are starting to try to do "baby steps" to get Ashleigh less dependent on the machines and medications. We are not getting too excited because something could come out of left field and put us in a bad situation. Ashleigh is still extremely sick, sedated, and really can not communicate. When the sedation wears off, she is in a lot of pain and mouths the word "Owee" since she can't talk. We are also fighting fluid problems, skin breakdown, and other body decompensation.

So, we move forward another day. Each day we can keep her alive, she will hopefully get stronger. Although a few good things have happened lately, we can only be cautiously optimistic. We were reminded tonight of the seriousness of our type of situation and how things can change drastically very quickly. A 4 year old boy we knew from clinic named Alex recieved his transplant a week after Ashleigh. I talked to his mom Kim two days ago and he was doing great. He went down hill fast and passed away up here in ICU about 3 hours ago. Very sad and very scary.

We still need your prayers and positive thoughts. Thank you all for your support.

Tuesday, December 14, 2004 8:36 PM CST

Hi everybody,

I'm here bedside again. Ashleigh is resting. She looks peaceful.

As you can see from Angie's update, today was a big day. The surgery went well. A few of the doctors admitted Ashleigh did better than they expected.

Ashleigh's blood pressure has been good all day. The new problem is her temperature. Right now she is running a fever of 101 while on dialysis. Dialysis usually cools the blood and body. The nephrologist said without the dialysis her temp would probably be 104. This is a big area of concern. Is there a major infection operating? Infection would not be good.

Positives: The nephrologist did an ultrasound of her kidney today and said she did not see any damage. If she makes it, she would probably not need a kidney transplant (unless something else bad happens). Also, her lungs are clear of fluid for the time being. ANC is 957. It was 411 yesterday. Normal ANC (indicates the body's ability to fight non-viral infection) is 5000 . She should be engraphted in two days.

Other: Ashleigh is no longer paralized. However, she is heavily sedated. She comes out of sedation sometimes and opens her eyes for a brief moment. We even got her to nod yes/no a little bit today. We didn't see many tears from her today. She has been too sedated to grab her tubes. (she now has 9 tubes implanted in her little body) She has tried to grab them and occasionally fights the vent breathing. The good part is she can at least grasp your finger or hand at times. I fell asleep today in a chair while she was holding my hand. That felt good.

Overall... she survived another day. That's the best we can hope for. These docs and nurses in ICU have literally stopped Ashleigh from dying about 10 times so far. The last episode was at about 4 a.m. this morning.

The big concern now is if viral infection will come in. If it does, we are in serious trouble. Amy and I try to be hopeful. But, quite frankly, the odds are really stacked against Ashleigh making it. We have not stopped trying. The doctors told us we are not at the point where our efforts are fuedal.

So, we try to keep her alive another day and hope for a miracle. I hope she will surprise everyone and survive. Her body has tried to die a few times but her spirit has not.

Saturday, December 11, 2004 3:58 PM CST

I am sitting bedside with Ashleigh right now.

As you have read from Angie's update, things have become very serious. Ashleigh is basically being kept alive by machines while we try to figure out and treat potential viruses that are causing problems with her heart, lungs, and kidney. She is a bit more stable right now. However, her oxygen saturation dropped drastically at one point and the nurse had to revive her. Things basically can change hour by hour. Last night was bad. She kept waking up out of sedation. She has tubes up both nostrils and new catheters in the arteries of the neck and thigh as well as a foley cath for urine. She was agitated, trying to pull tubes out. We basically sit and watch monitors all day as the doctors come in and tweek medications. We also have to suction her mouth and nose frequently. We keep talking to her and I think she can hear us.

I can't even put into words how horrible this is right now. The doctors are still trying to figure out what is going on. We occasionally get promising news - today her chest x-ray showed fluid is clearing from her lungs. However, there is increased fluid around the heart. A lot of things do not add up.

Bottom line: she might not make it through this. We just don't know. Nobody knows. We are sort of looking for a miracle and trying to keep her alive each day.

Please do not call the hospital or send packages here. We appreciate the concern. But we have to focus on her. Also, you really can't have much in ICU.

Best case scenario: we are here a few weeks and things clear up. She will probably be a case study in a medical journal. You can guess worst case scenario.

Gotta run. Please send positive thoughts and prayers.

Thursday, December 9, 2004 2:15 PM CST

Hi everybody,

I'm just home for a minute to get a change of clothes.

Alot has happened recently. Ashleigh was increasingly having trouble breathing. She was getting a high rate of oxygen. She was continuing to retain fluid. She was found to have pulminary edema (fluid in her lungs) as well as fluid around her heart. Things got very serious

The Bone Marrow Team basically brought in several specialists/experts including a pediatric nephrologist (kidney doc), cardiologist, and an infectious disease doc. They came up with plans to try to get the fluid off of Ashleigh. One problem was her kidney was not able to do it's job (get rid of fluid). Also, her heart was not "squeezing" hard enough. We tried the first plan to not avail. Ashleigh was getting worse. So, we were admitted to pediatric intensive care last night. We were concerned she may need to go on a ventilator.

Ashleigh is being treated with meds to help her heart squeeze/pump more effectively and a diaretic to help her kidneys move fluid. We are having some success at this point. Her kidney is now up and running well. Her oxygen need is lessening and she is moving some fluid out of her body. She still has fluid in her lungs and around her heart. But, she is fairly stable at this point. However, we have been told things could change within an hour. We are still waiting on results of cardiac testing.

Things are better, but still serious. Ashleigh is talking some but is extremely exhausted. There are other issues we are still watching, assessing, etc. At a minimum, we will be in intensive care for a few more days.

With all of this, her white blood cells started increasing. She is starting to engraph! This will hopefully help. I hope we will win the race against possible pneumonia.

Gotta run. Send positive thoughts.

Monday, December 6, 2004 10:33 PM CST

People at the hospital I run in to ask me how Ashleigh is doing. I have had a hard time answering. I guess my best answer is "Some things are going okay and some things are not going okay".

Today we finish Day 6. Remember, between Day 10 and Day 15 we should start to see evidence of engraphing beginning to occur.

The past few days have been similar to what I described on the last entry. She continues to wake up with pain in her stomach from the mucositis. Her mouth hurts her. But the stomach pain is very intense and acute. We are increasing her morphine baseline daily. She also continues to vomit mucus and blood. Her face/mouth/cheeks are swollen. She mostly just lies there when not sleeping, with little interest in anything. She hardly talks and continues to be miserable.

Last night her blood pressure went high and I had to turn up her oxygen. What a night. Sit there exhausted listening to her breathe and watching a number on a monitor (oxygen saturation). If the number gets up and steady around 94-95, you feel like you can try to get a half hour of sleep before she wakes up again. We took off her oxygen for a brief time tonight to change the tubing. Within 3-4 minutes her numbers dropped to the point where it is dangerous. It's weird to think this little tube is keeping Ashleigh alive. Without it, she would be in trouble. She continues to run a low grade fever on and off. This is okay. We just hope a major fever doesn't start. It's not uncommon for these kids to get fevers. However, why they have the fever can be a big issue (i.e. infection).

We continue to try to hammer out a balance with certain lab values and the fluid she is retaining. It is a very complicated issue, especially with one kidney. We were able to move ahead due to some stability in the labs and use a diaretic (to relieve fluid retention). With this, Ashleigh's blood pressure was better.

The CMV fiasco: Our sample to culture the CMV virus supposedly never made it to the lab or there was some confusion in the doctor's order. We are not happy. They took another sample today and sent it to be cultured. This will take another 48 hours. This 48 hours would have been nice to have if she indeed needs treatment for the virus. Now if the thing is active, it has a 48 hour head start on us.

Basically, things remain stressful and difficult. We try to make it through each day. We hope/can't wait to have our kid back soon.

Saturday, December 4, 2004 10:50 PM CST

Hey everyone,

Things are still rough. Ashleigh is in extreme pain for much of the day. They keep upping her morphine to catch up. I stayed with her last night and she was up every hour. The pain is very intense. Also, the mucositis is getting worse. Ashleigh has noticeable sores in her mouth. Her lips are bleeding. She keeps throwing up mucus and blood. We have to suction her at times. She is miserable. I have not seen her smile or initiation of conversation in a few days now. Her labs are decent. However, we are still stuggling to get a good balance with her body chemistry, trying to make sure she doesn't hold too much fluid or become dehydrated while taking into account potassium and sodium levels with one kidney,etc. Amy is constantly working on figuring this out.

The pain issue is challenging. Ashleigh remains on oxygen. One problem is that upping morphine can affect oxygen saturation. So, the challenge becomes trying to reduce pain and still keep her breathing effectively. We are actually getting a handle on this.

We were hit with something very scary today. Before transplant, Ashleigh tested positive in her blood for something called a "CMV virus". This virus basically lives within cells and typically will not leave the cell because the immune system kills it. Eighty percent of the population walks around with this virus and it's no big deal. However, Ashleigh has no immune system. We recently learned of test results that indicate she has CMV in her urine. This means some of the virus escaped from the cells. The problem is this virus can cause viral pneumonia or gastrointestinal infection in kids undergoing a bone marrow transplant. The doctors are very concerned. If she develops any of these conditions, we are in serious trouble. The only drugs to treat this virus will impair engraphing of the stem cells. This is a major problem because the longer she is without an immune system the more susceptible she is to infection and the longer she will be in pain. Also, these meds are tough on the kidneys - we only have one kidney. And, the worst - this particular scenario occurs in kids who don't make it through transplant. Wow.

We have a waiting game. We have to patiently wait for Ashleigh's immune system to come back on line - probably start in 6-8 days from now - before the CMV virus causes pneumonia or GI infection. There is nothing we can do to prevent or impact what could happen.

So all of you who are into prayer or sending positive thoughts - we need your help. Things are getting pretty serious. I don't want to think I've seen Ashleigh's last smile. Lots of tears on this end.

Thursday, December 2, 2004 10:02 PM CST

Hi everybody,

Day by day. That's what we need to keep thinking to help Ashleigh get through this.

Yesterday, things were pretty smooth until the early evening. Throwing up was down to twice that day and there were a few breaks in the constant diarrhea. Although she did throw up blood (not uncommon). That was scary.

Ashleigh's pain became much worse in the evening. She is a tough kid. Twenty four hours after her tumor surgery she only needed tylenol for pain. I can't even imagine how excrutiating this pain must be. About 9 p.m., her morphine dose was tripled. She slept well. However, her oxygen saturation dropped. Basically, she was not getting enough oxygen in her body. We tried to put a cannula (tube in her nose)to supply oxygen. She wanted no part of that. So, she slept with a tube blowing oxygen by her face. This worked and her oxygen saturation was better.

Today, Ashleigh was snowed most of the day and couldn't do anything. Her oxygen saturation became low again, even with the tube blowing oxygen by her face. They lowered the morphine dose a bit, hoping this would help to increase the oxygen saturation and help her sit up. She actually sat up this afternoon and watched a video for 45 minutes and we gave her a bath. This is the most she has been awake in two days. She hardly talks and no smiles.

I just talked with Amy an hour ago. Ashleigh's oxygen saturation was staying low. So, they had to hold her down, place a cannula, and tape it to her face. She obviously was not happy. However, her oxygen saturation looks good since she is getting a good dose of constant oxygen. They did a chest x-ray also to look for fluid collecting in the lungs. Results are not back yet. Ashleigh is retaining a lot of fluid. She is very puffy. Also, her mucositis is worsening in her esophagus. Amy thinks the increased fluid and worsening mucositis is causing the breathing problem, lowering oxygen saturation. We will have a lot to talk to the doctor about tomorrow. Labs look great due to the adjustments in the TPN (IV nutrition).

Tomorrow, another day to get through. I am off of work tomorrow and all of next week. Hopefully, this will lighten the load on Amy. We alternate nights and she does most of the days when I'm working. Ryan is having a great time at home playing with Aunt Peggy this week. He's so happy when Amy or I get home at night.

Take care everyone. New entry in a few days. Thanks to Angie for the great entries when I can't put one on.

Tuesday, November 30, 2004 10:20 PM CST

Hi everybody,

Things have become increasingly rough over the past few days. Ashleigh is still throwing up frequently and has constant diarrhea. Also, she has a lot of tummy pain. Yesterday we decided to give her some Ativan. Ativan is an anti-anxiety medication that helps with nausea. It's sort of a "happy medicine". She got happy and played for the first time in a few days. We are using this more now. Anything to help put a break in her suffering.

Well, today was the big day. THE STEM CELL INFUSION (BONE MARROW TRANSPLANT) OCCURRED AT 12:39 TODAY!! I think Angie put a picture on. The infusion only took 7 minutes. Six months of hell for this important 7 minutes. Our nurse Sandy was awesome. It helps so much when you have a skilled, knowledgable, and caring nurse to do such an important part of saving your child's life. Ashleigh did well and did not have any negative reactions or side effects.

So now, we wait. The stem cells will hopefully engraph in the next 10 to 15 days. This means the body will recognize them and begin to produce more of the necessary cells to fight off infection and basically let the body live, producing healthy bone marrow.

The next two weeks will get very rough. Ashleigh is beginning to show signs of mucositis beginning. She was started on a constant dose of morphine today because of pain in her stomach, probably beginning mucositis. Her mouth does not have open sores yet. But, these should come in in the next day or two.

Some of Ashleigh's lab values are abnormal (Angie mentioned potassium). Amy has been all over this. She had her calculator out and was figuring how to adjust the TPN (IV feeding), taking into account liver and kidney function, etc. The doctor who is ordering the TPN stopped by and said he heard we had questions. Amy got out her notes and calculations. He looked at her and said "What do you do for a living?" When she told him she was a dietitian, he said "Oh! I thought you had quite a bit more knowledge than when people ask me questions because of what they read on the Internet". It was kind of funny. He was great and agreed with Amy's assessments. He even ordered a few other tests due to Amy's request. Amy said she never thought she would be interpretting her own child's labs, assessing what to do to get things back closer to normal.

So, we have sort of turned a corner today. Now we are focused on getting Ashleigh healed rather than killing cancer. We still have a long way to go. But, today was major. She will hopefully develop new, cancer free bone marrow.

More to come in the next few days. Thanks again everyone for your support. It means a lot.

Sunday, November 28, 2004 10:37 PM CST

Hi everybody,

For all you Monday morning readers - you may want to look at the Friday night entry to get up to speed.

Things have calmed down a little bit since the last entry. We made it through the chemo. Ashleigh's fever ended yesterday (Saturday) evening. That was a relief. The blood cultures are negative for infection so far. She is still vomiting 2-3 per day and generally not feeling well. Her lips are very swollen and pealing. They haven't cracked yet. We are trying to constantly keep them moist with Vaseline. Ashleigh's counts are steadily dropping. Her blood pressure is better and not a big cause of concern at the present time. She needed a blood transfussion yesterday. The biggest problem now is cramping and diarrhea. This makes her very uncomfortable.

We get occasional glimpses of positives. It's amazing how well she is handling this for how terrible she must feel. Ashleigh was able to have a visit from her brother yesterday. She will not be able to see him for the next 3-4 weeks. I think she was very happy to see him. Also, she drank a little apple juice today. This was a surprise. She is getting all her nutrition through her IV now.

The next few days should not get any easier. Ashleigh has a white film forming in her mouth and on her tongue. This is the precursor to mucositis. The mucositis will manifest in sores throughout her mouth, throat, and in her stomach. These will probably develop in the next few days. When these come in, Ashleigh will probably get continous morphine to fight the pain.

Tuesday is scheduled for the stem cell infusion (bone marrow transplant). More on this later.

Thank you for your positive thoughts, prayers, and support.

Friday, November 26, 2004 9:07 PM CST

Hi everybody,

Thanks to Aunt Angie for the entry. She put in all the newest information.

The past two days have been rough. The reaction Ashleigh had last night was very scary. She was basically non-responsive with her eyes open for about 3-4 minutes. I was holding her back up off the bed and trying to arouse her, tapping her face and talking to her. I really got worried when her breathing became abnormal and her lips turned a little blue for about 10 seconds. I thought she was going to have a seizure. I opened her mouth to make sure her tongue was intact. It was horrible. For a minute, I thought I was going to lose her. Slowly, she started coming out of it and she was a little confused. But, she eventually became oriented and just wanted to sleep. I sat next to her bed and watched every breath for about two hours.

Today, she was not feeling well for most of the day. She is extremely exhausted and puked three times so far today. She has been running a fever since this afternoon. We are told this is not uncommon and probably a side effect of the chemo. Another big concern is her blood pressure has been low. I just talked to Amy about an hour ago and no one quite knows why this is happening.

We have about 12 hours of chemo left. The baths will stop tomorrow morning. That will be a relief. It's terrible when we have to wake her up for a bath when she is finally resting and looks content sleeping.

We were thinking this week may not be too bad. A few unexpected things have happened and it's very tough. We just need to make it through the next 12 hours of chemo. This chemo so intense.

I'm exhausted and I need to get to bed. My night to stay at home. Hopefully, things go well tonight and we can move on to the next challenge. Ashleigh has only been in the hospital for 4 days - but it feels like several weeks.
already.

Take care all. Hopefully a few positives in the next entry.

Wednesday, November 24, 2004 9:07 PM CST

Hi Everybody,

Ashleigh was admitted to the hospital Monday for the last round of chemo and the bone marrow transplant. She had a great time at her little party in the playroom the night before the chemo started.

Things have been going very well so far. Ashleigh has been a major trooper. This stay has been very different. The chemo is very intense and we have to give Ashleigh a bath every four hours to prevent burning of her skin as the chemo meds come out of her pores. She has been doing well with the baths so far, even the 3 a.m. bath last night.

Another big change has been no bandage on her Broviac site. (The broviac is the tube that was implanted in her chest) So now, there's less support for her "spagetti noodles". This kind of freeked her out at first. She's getting used to it. Also, she can only wear big cotton teeshirts and no diapers. She was potty trained before she got sick. This hasn't seemed to phase her much - she just went back to going on the potty. No big deal.

Asheligh's counts are just beginning to drop. She is still able to get out of the room occasionally. She has been cruising around the unit on the tricycle. We have also been playing alot with Playdo, reading books, watching videos, and playing with other toys. Ashleigh was very excited to see snow out of her hospital window tonight. She said "Look Daddy! The snow is soooo pretty!!" She already started talking about when she gets home she wants to build a snowman in the front yard.

We are trying to enjoy the next few days before things get rough. There hasn't been any pukies yet. But, appetite took a dive yesterday. By next week/maybe this weekend we will likely start feedings by IV.

Ryan keeps smiling.

Take care all. Have a great Thanksgiving.

Thursday, November 18, 2004 11:58 PM CST

Hi everyone,

A lot has happened the past few days.

Wednesday Ashleigh had her catheter removed and she was very happy. We met with the bone marrow team and our oncologist. The meeting left us like we had been punched in the stomach. There was a lot of discussion about what we would do if Ashleigh's MIBG scan (a body scan that detects neuroblastoma cancer) came back positive or if the tests of the urine showed cancer present. Our oncologist said he thougt there was a "50-50" chance her tests would come back clear. If the tests were postive this would likely lower our progosis (based on new studies). Remember, we are working with a 40-50urvival rate right now. If the tests were postive we would possibly do more chemo (a different type) and postpone transplant. During the meeting, Ashleigh was being absolutely sweet. This made it even harder with the idea of losing her being put into your mind again.

Today we had the MIBG scan and a hearing test. Ashleigh was sedated for both. During the day, we were in contact with the bone marrow transplant team nurse as the results of the tests came in. The ct scan looked fine. The urine tests showed one slight elevation that did not indicate cancer was present and ravaging the body. This result could occur from dietary issues. And, the MIBG CAME BACK NEGATIVE!!!!!!!!!!!!! Can you believe it?! Basically, this indicated there was no detectable cancer present! Obviously, this is huge!

Now, we are not out of the woods yet. There may still be cancer cells lurking around. However, this means the chemo is working and we got this thing on the run.

The results of the tests for the RSV and other flu viruses also came back negative. This is a relief. If these tests were positve, we would probably have to postpone bone marrow stem cell transplant - giving the potential remaining cancer a chance to grow and spread.

So, we pretty happy right now. We are hoping to be admitted and start the pre-tranplant chemo this coming Monday. We know the next two months will be hell. But I'm glad we will going forward and going after this thing (our nasty disease) while we have it on the ropes.

Everyone have a good weekend and hug your kids.

Wednesday, November 17, 2004 7:18 AM CST

Hello everyone,

Well, we are in the middle of a rough week and again faced with new challenges.

Tuesday Ashleigh went to her regular clinic appointment and her numbers looked pretty good. After our routine stuff, she had a catheter placed for a 24 hour urine collection and two bone marrow aspirits as well as bone biopsies. They had to sedate her. That’s always very rough for Amy and me when they put her under. It brings tears to my eyes just writing about it.

Ashleigh woke up and as you would expect, she was not a happy camper. The catheter is very uncomfortable. The only time she has any comfort is when she is laying on the couch or in bed. No walking of course. Regardless, she made the best of it. She thought it was pretty neat that we all ate dinner in the living room with her around the coffee table.

The bone biopsies do not seem to be bothering her too much. I don’t know how they can’t be. Sticking a needle into your hips to remove bone marrow and a sample of bone tissue. Tough kid.

A new challenge has to do with Ryan. Monday afternoon I took him into the pediatrician because he has had a cold/cough for about 10 days. The pediatrician said his lungs sounded like he may have RSV. He was started on an antibiotic just in case there is something else going on. When I got him home he started throwing up. He threw up about 4-5 times in a two hour period and had diarrhea. At first, we thought we may have to take him in to the hospital. We were up with him most of the night trying to get in Pedialyte so he wouldn’t dehydrate. Through all of this he just kind of smiled and didn’t cry. Yesterday, he was feeling much better. It was weird. He presents with cold symptoms but seems to be breathing okay.

We told the oncology team about Ryan and they ordered testing to see if Ashleigh has any RSV in her system. If she does, this could postpone transplant. This would not be good. Amy and I both caught Ryan’s cold. Ashleigh, by some miracle isn’t showing symptoms yet. We get the test results back on Friday. Send positive thoughts.

Today, Ashleigh will go in and have the catheter removed. That will be a relief. The process will not be fun though. We will be in for a fight. The rest of the day will include meeting with the bone marrow transplant team, Ashleigh will get a contrast injection for her MIBG tomorrow, and have a CT scan. Another long day.

Enough for now. I have to try to get some work done before I head over to the hospital.

Sunday, November 14, 2004 10:38 PM CST

Hello everyone,

Hope you had a great weekend. We did.

Friday: The Bone Marrow Transplant Team had to cancel on us. We meet with them on Wednesday. Ashleigh's counts looked okay. Her white blood cell count was a little low. So, we needed to get a poke on Saturday. Ashleigh had to have an EKG and an echocardiogram. These are standard tests before transplant. She wasn't too thrilled to have the tests. But, we got through them. Kind of a long day.

We talked with the doctor about Ashleigh having a lot of pain during poopies. We changed around a few of her bowel meds and that seemed to do the trick.

Her weight is up to 12.6 kilos. She was 13.3 kilos when diagnosed. She has been into these Ritz mini peanut butter sandwiches. I think she has went through two boxes since Friday. Her eating is also improved in that she will eat whatever we are having for dinner. This only came back recently.

We had a lot of fun this weekend. Ashleigh played hard and was very happy. She even started dancing again! Before she became sick, when her before-bed video would end, she would stand in front of the TV and dance for Amy and I as the credits rolled. It's so cute. A few days ago she said she wanted to dance by herself. It was awesome. Our kid is almost back.

This coming week will be rough. Lots of tests. Tuesday, Ashleigh will have a catheter placed for a 24 hour urine collection and a bone marrow aspirit. The aspirit is when they put a needle into her hip to get a sample of bone marrow. She will be sedated for both procedures. But when she wakes up she will not being doing well.

Then there's the MIBG scan, hearing test, and CAT scans the rest of the week. She will have to be sedated for some of the testing and we will have to force her to drink different contrasts. It's weird when it becomes routine for them to put your kid under. It's routine, but I still have a really rough time with it.

So, this will be a tough week. I'll try to update more to keep everyone up to speed. Also, doing the entries is kind of like therapy to me sometimes.

Take care everone and thanks for your support.

Tuesday, November 9, 2004 9:44 PM CST

Hi everybody,

Things continue to be great here. This past weekend Ashleigh had a lot of fun. Friday she went over to her buddy Caleb's house. They had a great time and Ashleigh keeps talking about it. One of the big challenges has been trying to keep Ashleigh connected socially with her buddies.

Saturday Grandma and Grandpa Kelly were here. We all went out for dinner for Daddy's birthday. Ashleigh likes going to restaurants and coached her little brother to "Not be scared".

Clinic went well today. Ashleigh needed a blood transfussion. Otherwise, her other counts looked great. We also met with the psychologist and she had her neuropsych eval. She did great.

Walking: Our girl continues to enjoy her new found mobility. Her limp is getting better and she is more stable on her feet. This weekend she told us she wants to try running again. She can run a little, sort of... It's very cute. Her and Dad had lots of races around the coffee table. We were even able to play a little monster chase.

Friday we meet with the bone marrow transplant team and Ashleigh will have a few tests. Next week she goes through alot of testing to get ready for transplant.
Transplant is coming up quick, less then two weeks.

Take care everyone

Thursday, November 4, 2004 10:18 PM CST

Hello everybody,

Things are going very well. Ashleigh is feeling great and our old kid is back. She is eating well and is up over 12 kilos (26.4 lbs). Hot dogs and cheetos are still in. Tuna seems to have dropped off the map after a good run.

Asleigh had clinic on Monday and Thursday this week. Her counts have looked pretty decent. She needed a platelet tranfussion Monday. White counts were up Monday and no Neupogen shots for a few days. Today white counts dropped and she had to get a "poke" tonight. She will probably get a shot every three days now. That's a lot better than a shot every night!

Since Ashleigh has been feeling good lately and continues her walking, she is beginning to get some of her independence back. That is so nice to see. Ashleigh was very independent before she got sick. The past few days she has been really excited to help Mom and Dad with cooking dinner, washing dishes, and even giving her brother a bath.

Some have you have asked about the issue of the construction behind our house and if we will need to stay someplace else for the two weeks before transplant. We will be able to stay here!

The major issue has been that the dirt moving had to stop by November 1st. The developer who is putting in the shopping center has been wonderful. They have been in contact with Amy weekly for the past two months. They moved a lot of things around in their construction plan in order to be done moving dirt by Novermber 1st. They were great. The church behind our house was a different story. Amy had talked with them and they told us they would not be doing any excavating or construction this Fall. When Ashleigh was in the hospital the last time - I came home one afternoon and found several payloaders and bulldozers 20 feet from my back yard. They were doing major excavating and filling in the land right behind our house! We freaked out.

To make a long story short: they were initially resistant to guarantee the project would be done by November 1st. However, I met with them and received some help from friends (thanks to Jeni Herrick, fiesty attorney). The project got finished by November 1st. So, we are happy and relieved Ashleigh will be able to stay at her own house before going into the hospital for two months.

This weekend should be fun. Ashleigh is going to see her buddy Caleb from daycare tomorrow night. Grandma and Grandpa Kelly will be her Saturday.

Amy and I want to thank the people Amy works with from the Metron homes. They have had these fund raisers for Ashleigh and their generosity is amazing. Thank you! Your support and kind words are appreciated.

Everyone have a great weekend and thanks for your support.

Sunday, October 31, 2004 9:49 PM CST

Hi everybody,

Happy Halloween.

The weekend was awesome (except for the football game that MSU should have won). Ashleigh felt great. Grandma Kate and Grandpa Bill were here. Ashleigh took her little brother and her cousin Alex trick-or-treating. She was really into it and insisted on walking most of the way around the neighborhood with her cute little limp. She also enjoyed helping Uncle Tim pass out candy at our house.

As you can see from the picture posted, Ashleigh was a pumpkin. Amy and her were in a store a few weeks ago and she picked out her costume. When Amy asked Ashleigh what Ryan should be for Halloween, she didn't hesitate in saying she wanted him to be a pumpkin just like her. She said she was a "big pumpkin" and Ryan was a "little pumpkin".

Clinic tomorrow. Mouth sores are looking a lot better. Ashleigh is eating great. She is now into hot dogs with lots of ketchup. Also, lots of Halloween candy in her diet nowadays. Planning on enjoying our time before stem cell transplant tenatively scheduled for Novermber 22nd.

New update in a few days. Take care all.

Wednesday, October 27, 2004 10:21 PM CDT

Horray! We're home!

This morning Ashleigh's ANC was 291 and her white counts were 540. Even though this is still pretty low overall, the doctor said they have started shooting up quick. Therefore, he let us come home.

As soon as we got home, our old kid came back. Ashleigh really needed to be home. She walked all around the house as soon as we got home. She was joking and wanted to play. She would eat more than just Nutrigrain bars. We ordered a pizza tonight and Ashleigh said, "Yummm! This is the best pizza I ever had!" Cheetos were back in as the night time snack.

Ashleigh still has two nasty mouth sores behind her front teeth. We're a little worried about these. We keep treating it with Biotene. Hopefully, they will heal soon and not become a major infection, landing us back in the hospital. They don't seem to bother her very much. Pizza and apple juice with no "ouwie".

Hopefully, things will remain stable with no re-emerging fever. She really needs to have Halloween.

Clinic again on Friday. Grandma Kate and Grandpa Bill here this weekend. Hopefully, if counts are up Friday we can carve another pumpkin. During the day on Saturday, Ashleigh will be in her MSU gear and Mom will continue to teach her to say "Go State" and boo when Michigan does anything positive.

Keep your fingers crossed for us - no unexpected problems and a fun weekend.

Take care everyone

Tuesday, October 26, 2004 12:51 AM CDT

*Here you go - a double entry*

Monday, October 25, 11:00 p.m.

Hi everyone,

We are still in the hospital. Ashleigh is showing very slight improvement each day. She has been getting morphine at night for her mouth sores. Her mouth is swollen from the sores. No real fever in the past 48 hours. The blood and urine cultures came back and luckily there were no infections. Her counts are moving up very slowly. After round 4 (same type of chemo as this last one) by this time, her counts were already way up. She is at day 14 and her white blood cells are still only at 50. Normal is 5,000 – 10,000. These low counts are keeping us here. Ashleigh has also already had transfusions of platelets and red blood cells. She will probably need more platelets tomorrow. Her body is having a much tougher time recovering as compared to the previous rounds.

Ashleigh is fairly miserable. She had a few smiles tonight and rode the bike down to the playroom with Mom today. She didn’t stay long, saying she was tired. She still complains of not feeling good. She is eating a little. Mostly Nutrigrain bars. Also, no poopies in five days. This doesn’t help. We have tried our regimen of bowel meds to no avail so far.

We are hopeful we will get good numbers (counts) tomorrow morning. She really needs to get home. I think her spirits are a little down.

Send us positive thoughts and wish us luck. Hopefully, the next update we will be home getting excited for Halloween.

Tuesday, October 26, 2:02 pm

Hey everybody, quick update:

Counts were slightly better but still low. White blood cells were 160. We need to have her ANC (an indicator of her ability to fight infection) up into "the hundreds" (quote from the doctor) before we can go home. Today her ANC was 64. This is up from 10 the day before and 1.4 the day before that. So, we are slowly creeping up.

Ashleigh is not really doing well emotionally. She was up with nightmares last night. She is showing that depression kind of thing like she showed once before.

However, this morning her spirits were slightly improved. She wanted to get out of bed and out of her room for the first time. She rode the bike around and down to the playroom. There was some work going on in the playroom, so we took paints and wooden cutouts of Halloween stuff back to the room. Ashleigh painted and had a good time.

So, hopefully we are turning a corner. It's very unlikely we will go home tomorrow. We are hoping for Thursday.

Hopefully, the next entry will be more happy and we will be at home.

Friday, October 22, 2004 9:49 PM CDT

Hi everybody,

Well, we're back in the hospital.

Last night Ashleigh was doing well, playing, and in good spirits. She started getting fatigued and before we knew, she had a low grade fever. She was up several times last night not feeling well.

This morning she was not feeling well at all and would not eat. She was running a temp of 99.3 when we left the house. About an hour later her temp was up to 102.3 and she was very lethargic. We were admitted with a fever.

This afternoon was not fun. You never get used to seeing your kid so miserable. Also, they had to draw blood through her broviac as sell as from a poke in the arm. We had to hold Ashleigh down and it was horrible. Poor kid. They will run a blood culture for 48 hours to assess if and where there is an infection. Also, she was started on IV antibiotics.

Ashleigh is very sick right now. Her tummy is hurting - probably mucousitis in her stomach. This is an irritation of the stomach lining. She also has a few sores in her mouth. Her temperature is bouncing around between 102 and 99. Her counts are zero. She has bottomed out. She won't eat and has already lost a little weight. We feel so bad for her. It kind of breaks your heart - what this kid has to go through.

We are looking at a 4-5 day hospitalization. Hopefully, there are no significant infections. Many times kids treated with this type of chemo will come in with fevers and they never really determine the cause. There is also some danger of an infection of her Broviac line or a systemic infection in the blood.

We just hope she starts feeling better soon. We desparately hope she will be out of the hospital before Halloween. She talks everyday about Halloween coming up soon. She can't wait to trick-or-treat with her brother.

Wish us luck. Next update in a few days.

Tuesday, October 19, 2004 11:00 PM CDT

Hi everybody,

Sorry so long since my last entry.

The weekend went really well. No puking. Close several times. Ashleigh is kind of learning how to hold it back. We can tell when she is really nauseous because she grinds her teeth. She had decent energy for most of the weekend and appetite is still hanging in there. YEAH

The past few days Ashleigh is becoming fatigued quicker. However, she is in good spirits. She told us today her tummy is hurting. We're a little worried. This was the same thing that happened after round 4 and we were in the hospital with a low grade fever and urinary tract infection a couple of days later. We are fighting the battle of the bowels. Our strategy of combining certain meds seems to be working and we are keeping things moving. Yesterday, Ashleigh said the poopies weren't sleeping... they wouldn't come out because they were busy eating. ?ha ha?

Today we had clinic. Ashleigh's counts were a little low but hanging in there. We anticipate her counts will drop in the next day or two. She weighed 11.5 kilos (25 lbs.). So, she's not losing weight and looks pretty good. The new food this week: Cheetos (an old friend before she was sick) are in the picture, bigtime. Tuna is still a main player.

We also had a good time today when Ashleigh and mommy stopped in to see Daddy at work after clinic. We went and had lunch. Ashleigh had a good time.

The big news the past few days: Sunday, Ashleigh walked by herself for the first time since June. Amy and I are right there because she can get a little wobbly when she is tired. She was so excited and proud of herself, she walked all around the house Sunday. I must have done 30 laps around the house on Sunday morning. I think this has helped her spirits a lot.

We are beginning to schedule all of the testing before stem cell transplant. The test will basically be all the same tests we had when she was first diagnosed. These tests will tell us if, where, and how much cancer is left. It looks like stem cell transplant will probably occur around November 21 (a month away).

Thanks again for your support. Send positive thoughts as we enter the next few days. Counts will probably bottom out and we won't be surprised if we make a trip back into the hospital.

Bye

Friday, October 15, 2004 10:40 PM CDT

Hello Everybody,

We got home from the hospital tonight at 6:30. Ashleigh insisted on walking all the way out of the hospital and out to the car. She was very proud of herself. Ashleigh was very happy to be home and said she couldn’t wait to sleep in her bed tonight.

Overall, chemo went fairly well. Can you believe it? Round 6 is done. During chemo Ashleigh had one night that was a little rough. She didn’t sleep well and puked twice. Otherwise, she cruised through it, sleeping well without major nausea.

In the hospital, Ashleigh spent a lot of time riding a little trike around the unit. She would get moving kind of fast and mom or dad would be following with the IV pole holding three pumps and the chemo. She also spent time in the playroom and painting. She had lots of visitors including Clifford the Dog, her friend Molly and her mom, and Aunt Angie’s daily visits for lunch. (Aunt Angie is eating for two now).

Appetite hung in there. We are a little surprised. She got into grilled cheese sandwiches. The staff made an extra effort to make sure she had grilled cheese. Tuna continues to be a major player. She ate a bowl of tuna with Kitty tonight while watching a Casper the friendly ghost video.

We are getting ready for a rough week. Starting tonight or tomorrow, Ashleigh will probably start feeling bad with some vomiting. Also, this type of chemo comes along with constipation, mouth sores, and jaw pain. We are prepared for this battle. Well, as prepared as you can be. Also, her counts tend to drop quickly and we constantly have to worry about infection. Ryan has a cold and is teething. Amy and I will have raw hands from all the washing.

After we get through the next week, we will be doing lots of different types of tests and scans in preparation for the stem cell transplant which will probably occur in 4-5 weeks. Amy and I have a lot of reading to do as well as writing and organizing all the questions we have for the bone marrow team.

I hope you all have a great weekend. We will try our best. Probably update after clinic Tuesday.

Wednesday, October 13, 2004 8:00 AM CDT

Hello everybody,

The weekend went great. Ashleigh literally put miles on her bike. She won’t peddle it because she can’t go fast enough. Therefore, she puts her chest on the handle bars and basically runs. My daughter loves speed. Ha ha She also had fun seeing Grandma Kelly and “Binka” (Grandpa).

Ashleigh continues to improve on her walking. She still needs to hold your hand while she walks. She is getting the muscle back in her legs. It’s nice to see.

Yesterday (Tuesday) we started chemo – round 6 at 6:30 p.m. We almost didn’t get admitted. Ashleigh’s white cell count was a low. But, the other indicators were good. So, we were admitted.

Amy and I were really concerned if she was bumped again and chemo started later, it would interfere with Halloween. Ashleigh has been talking a lot about going trick or treating with her brother. She’s been watching Halloween videos and we even carved a pumpkin the other day. She helped and she was really into it. Since she will probably be in stem cell transplant through Thanksgiving and Christmas, we wanted her to have Halloween. Last year, she wasn’t that into it. Now, she’s already excited and it’s a couple of weeks away. She should be feeling okay on the 31st since the chemo was started yesterday.

Amy stayed with her last night and things went pretty well. No puking yet. Appetite will probably take a dive today. But, she has a little more reserve this time. She weighed 12 kilos (26.4 lbs) yesterday. By the way, her brother is pushing 19 lbs. already. Ashleigh weighed 12.3 when she started chemo in June and has not hit 12 since. So, that’s a good sign. New food this week: Triscuits with melted Colby Jack cheese on them. Tuna is still a main player though.

We plug along with the battle. Wish us luck and send positive thoughts. New update in a few days.

Saturday, October 9, 2004 10:16 AM CDT

Hi everybody,

Well... We didn't start chemo Friday. Ashleigh's platelets were too low. They needed to be 75,000. They were 45,000. White counts, ANC, and hemoglobin looked good though. So, we got bumped and hopefully will start this coming Tuesday. The same thing happened after round 3, which was the same type of chemo.

We really aren't that disappointed though. Now, we get to enjoy the weekend. The oncologist said he thought it would be good for us to have a break and enjoy the weekend.

Ashleigh has had a very good week. She has been eating well and things are moving (if you know what I mean). One night this week we went to a pupmkin patch/farm and picked out pumpkins. That was fun. Ashleigh has also been riding her bike alot. Her walking continues to improve.

Thursday Ashleigh was able to go vistit her buddies at daycare. She participated in Circle Time and made a halloween bat with finger paints. She also enjoyed visiting her brother in the nursery. Overall, things went well. She was a little out of her element at first because her pals have moved on to the pre-preschool room. When Ashleigh left, she and her buddies ruled the Toddler Room.

So, we will enjoy our weekend. Ashleigh is feeling good and the weather is supposed to be nice. Grandma and Grandpa Kelly will be here Saturday afternoon.

Amy and I want to again thank people for their support. The guest book entries really help us. We especially want to thank the gang from Aunt Angie's message board. You guys have been amazing in your support and the card and gift we received this week was awesome.

Everyone enjoy the nice Fall weekend. Update again early next week, probably Tuesday night.

Tuesday, October 5, 2004 10:27 PM CDT

Hello,

Good news - the results of the CT scan are in and the spot on the lung is gone!!!!!!

This is huge. Ashleigh will not need another surgery. Her lungs look great. We still are not entirely sure if the spot was cancer or something else. But, it's gone and we don't have to worry about it.

Clinic today: Ashleigh's counts looked pretty good. Her hemoglobin was a bit low and she needed a transfussion. Hopefully, counts will be good on Friday and we can start our last round chemo before stem cell transplant.

Ashleigh was showing off her walking today in clinic. She walked a big circle through the inpatient and outpatient clinics. The nursing staff and a few of the doctors looked pleasantly surprised. I asked Ashleigh if she was tired as she requested we walk to the inpatient side again. She responded, "No Daddy, I like walking".

Tuna is still a favorite. However, meatballs are coming on the scene strong. Yea, we have to nuke these meatballs and mix them with spagetti sauce.

So, we plug along. We will hopefully be able to make a trip to daycare to see her friends and check on her baby brother.

Thanks again for all your support and kind words. Hopefully, I will be able to keep sharing good news.

Sunday, October 3, 2004 2:53 PM CDT

Hi Everybody,

Well, we have had a great weekend.

At clinic Friday, Ashleigh’s counts were low and she needed a transfusion of platelets. This was no surprise and no big deal. She did great for her CAT scan. She didn’t even need to be sedated. She was very still and as soon as the scan was done she said “Okay, can I have some candy now?”

This weekend was a lot of fun. Grandma Kate and Grandpa Bill came to help clean the house and help us catch up on other tasks. Ashleigh had a lot of fun playing with them. Also, Grandma found a new Grumpy Bear Care Bear on e-bay. Apparently, the company doesn’t make Grumpy Bear anymore. This is Ashleigh’s favorite. She was very excited and took him to clinic to show people.

Saturday we played outside and Ashleigh was absolutely thrilled to be able to walk around the yard. Her walking continues to improve. She can walk short distances while just holding someone’s hand. The look on her face made me choke up a little. She was so happy. She said, “Daddy, I not walk in the grass in a long time”.

The past few days, Ashleigh has been an eating machine. The new food this week: Tuna. She has been eating packages of tuna. It’s kind of weird. She is also eating other things including those little Famous Amous chocolate chip cookies. However, she continuously has a little bowl on tuna going along with an orange juice box.

Ashleigh continues to enjoy feeling good. She still gets very fatigued quite easily and needs to take breaks and lay on the couch (usually with a bowl of tuna). She has her sparkle back and we plan to enjoy it this week.

Chemo is supposed to start this coming Friday. Can you believe it – this is round 6, the last round of regular chemo. However, I would be surprised if we start on time. Ashleigh’s counts have not stabilized. Therefore, chemo might be bumped a few days.

The biggest issue this week will be the results of the CAT scan. The scan was ordered to look for the spot in the lung that was discovered when she was first diagnosed in June. They are not sure what it is and it’s hard to tell if it’s cancer or not. We should find out the results on Tuesday in clinic. If the spot is still there, we may have to have another surgery to remove it. We would do the surgery very soon. This would push back chemo a couple of weeks.

So, Tuesday will be a big day. Wish us luck. I’ll try to update that night.

Wednesday, September 29, 2004 10:44 PM CDT

Today was a day filled with good news!

Ashleigh had her ortho appointment today. The doctor said her fractures have healed!!! She said there is mature bone present and good blood flow. The doctor also thinks the growth plate on the left femur will recover. We will know for sure in the near future. But, things look really good right now. She said she is very happy to see Ashleigh is doing so well and she does not need to see her until after the stem cell transplant. The fractures have left the bones healed at awkward angles. However, the doctor thinks the bones will model back to appropriate angles in about a year to a year and a half. So, we probably won't need surgery at this point.

So, this was obviously great news. Now, we just have to work with her on her walking. She is very unsteady. However, she continues to make progress daily and she is very proud of how well she is doing. She even told me today "Daddy, my leg is getting better".

The other good news: the "poopies woke up" and bowel function is back on. It was about 10 days. So, you can imagine - when things started moving, alot moved. Sorry, kind of gross. This was a big relief. We were really getting worried.

So, things are going well. We still do not know where counts are at this point. We will find out on Friday. Hopefully they will be good and we can get out this weekend. Also, if counts stabelize, we are going to try to get Ashleigh to daycare to see her buddies next week. She misses them a lot.

Take care all

Tuesday, September 28, 2004 11:16 PM CDT

Hi everybody,

Clinic went smooth today. Ashleigh's counts looked okay. They are still sort of unstable and it is hard to tell if she has bottomed out yet, or if her body is producing blood cells on its own, or if the counts are the results of the Neupogen shots. Her counts always act funny after this type of chemo.

Her weight loss has stopped. She is eating. We rediscovered the joys of the old peanut butter and jelly sandwich. It's our new food of the week.

Constipation is our new challenge now. It's been 9 days and we are getting worried. Ashleigh has not really experienced any major pain yet. It's weird and that worries us. Ashleigh says "My poopies are sleeping". We continue to hit her with increased bowel meds.

Since Ashleigh's counts were decent, we decided to take a trip to Toys R Us so she could spend some of her "medicine money". She gets a "big one" (quarter) for taking her medicines without fighting and a "little one" (penny) if she puts up a fight. She has this little purse where she keeps her money. She picked out Lady and Diesel ("Pinchy") trains for her train track. These are guys from the Thomas the Train videos. She gave the clerk about two bucks in change and Dad snuck in with the debit card. Ashleigh was very excited and played with them in the car all the way home.

Walking: This has been the good news this week. Ashleigh has been walking on her own pushing her toy shopping cart for the past few days. Tonight, she walked on her own for the first time since early June!!!! Mom and Dad were right there holding her shirt so she would not fall. Her walk was not pretty - a little wobbly and unsteady. But, this is huge progress.

Tomorrow Ashleigh has an appointment with the ortho doctor. There may be good or bad news. It's possible the doctor may have some idea if her growth plate at the left femur fracture has recovered. If it has not, we need to start talking about when to do surgery.

So, the past few days things have been pretty good. No vomiting and the fatigue is much better. If the constipation issue was resolved, we would all be very happy.

Take care all

Sunday, September 26, 2004 1:33 PM CDT

Hi everybody,

Things have been okay the last few days I guess; or at least manageable. Ashleigh has been throwing up about once a day. She gets fatigued very easily. She tries so hard. She will play for a while and have fun. Then she needs to lay on the couch for a while to rest. Her body is getting tired.

She has been eating small amounts but continues to lose weight. Last night and today appetite started to pick though. She polished off 5 juice boxes yesterday and an entire peanut butter and jelly sandwich at lunch today. Hopefully, we’re turning the corner on this issue. The new food this week was chicken from the grill. This is all she would eat for the past few days. I was grilling chicken at 7:30 am this morning. She was eating biscuits but threw one up Friday and wouldn’t eat them again, thinking it would make her sick.

And the new issue is our old nemesis, constipation. It’s been about a week. We have started our regimen of bowel meds. The problem is she doesn’t like these meds and often throws them up, along with whatever food we were able to get into her. Hopefully things will improve in this area soon.

Even though stem cell transplant is coming up and it will be rough – I am glad we only have one more round of regular chemo left before the stem cell chemo. Ashleigh is really getting worn down physically. Mentally, she is getting worn down too. You can kind of see it in her eyes. It just seems like she knows she is in a fight for her life. She has also been having a few more bad dreams. She has also been telling us about weird things in her dreams a lot. It’s hard to explain. We can just tell things are a little different with her lately.

This week we will be in for a CAT scan to check out the spot on her lung and start talking about potential surgery to remove it. Her counts looked good Friday. They probably had not bottomed out yet.

I’ll update after clinic on Tuesday.

Tuesday, September 21, 2004 10:38 PM CDT

Well, we're home.

We were discharged today at 1 p.m. Since the last entry things have been a bit more rough. The puking and no eating/drinking has started. Ashleigh has lost a lot of weight. We are worried about her.

Ashleigh is very happy to be home. She is especially happy about being able to sleep in her own bed. She is feeling sick most of the time and puked three times today. She looked at me today and said "Daddy, I feel yucky". There are a few bright moments. But, this will probably be a rough week.

We will be giving Ashleigh IV fluids now at night at home for the next few days. She now has a "pet pole" in her room. The IV will run 10 hours. This will prevent her from becoming dehydrated with all the puking. Hopefully, it will help her generally feel better.

Mom has been preparing her dietetic concoctions of high calorie/high protein supplements to syringe in if Ashleigh can keep anything down. We realy hope to avoid putting a tube down her throat if we can.

So, the next few days will be rough. Ashleigh's body is getting more tired and having a more difficult time recovering from the intesity of the chemo.

We just keep fighting the battle and dream about next summer.

Take care all.

Monday, September 20, 2004 9:04 AM CDT

Hi everybody,

Ashleigh is progressing through round 5 of chemo. Overall, she is doing well. She is not eating very much and complaining her tummy is hurting. However, she is in good spirits and sleeping well.

The pediatric oncology unit was filled on Friday and we were put in one of the bone marrow transplant rooms. The room is huge and nice. Kids usually stay in transplant for long periods of time, so these rooms are bigger. One wall is all windows (see picture) with a great view of the city. Hopefully, we will get this room when we do the stem cell transplant.

Ashleigh’s counts have already dropped. That’s why she is wearing a mask in the picture. Her body (bone marrow) is getting “tired” and having more difficulty producing cells. This is typical and expected the farther you go in treatment.

We should go home tomorrow (Tuesday). This week will be rough. This type of chemo was really hard on Ashleigh last time (remember round 3). Lots of vomiting and weight loss. Hopefully, it will pass quicker before her weight gets too low.

Next week will be very big. We will do all of the testing protocol to assess how the cancer is responding to treatment. These tests will include an MIBG (this finds neuroblastoma cells in the entire body), a CAT scan, and she will need a catheter for a 24 hour urine collection. This won’t be fun. Waiting for the results will be hard.

We are starting to educate ourselves more about the next phases of treatment. This is emotionally exhausting. We will have some big decisions to make. Also, when you start to research and educate yourself, you get reminded of the 40-50% cure rate. Having to think about things like death, extending life through painful treatments, etc. is very hard to take sometimes… well all the time.

I’ll update in a few days. Hopefully, we will be home!

Thursday, September 16, 2004 10:29 PM CDT

Hi everybody,

We have had a very good week. Ashleigh has been doing well. She and mom have been busy running errands and catching up on the shopping. Ashleigh loves to "help" mom. We have been taking advantage of her counts being so good. After clinic Tuesday, Ashleigh and mom stopped in to see Daddy at work and they took me out to lunch. Ashleigh loves being out and loved watching all the people downtown.

Tuesday counts still looked pretty good. Platelets were a little low. Hopefully, they will come up so we can get chemo started Friday.

Ashleigh is becoming more mobile, not walking but crawling. We continue to practice walking and standing. It's just nice to see her move around the living room. Slowly, her legs are getting stronger. We still have a long way to go.

Our new issue is how to deal with the construction behind our house. A new big shopping center is going in and we are about 200 yards downwind of the construction. The big issue is the presence of a fungus in the air called aspergillis. When soil gets moved during construction, these fungus spores are pushed out into the air. This puts Ashleigh at risk for developing a nasty lung infection when she is going through transplant in November. We will probably have to move out of our house for two weeks prior to the stem cell transplant. When she comes home (6-8 weeks later), snow should be here and there will not be a high risk. In the meantime, we have to have special filters put on the furnace and air intakes on the house. This will be a major pain. But the risk is pretty heavy if she is exposed to aspergillis.

Chemo hopefully starts tomorrow (Friday). We will be in the hospital through Tuesday. We're a little worried about this round. Ashleigh did not do well after round 3, which is the same type of chemo as round 5. She vomited alot after we got home and lost a lot of weight. We almost had to put in a feeding tube.

Buttermilk biscuits have remained the food of the week. Also, pizza roles came on the scene. These are basically all she will eat. She did put on some weight this week.

So, wish us luck tomorrow. New update in a few days. Thanks again for all your support.

Monday, September 13, 2004 9:49 PM CDT

Hi everyone,

We had a great weekend. Ashleigh has been feeling good and playing hard. She had a lot of fun playing with Grandma Kate. Ashleigh helped mommy hang the Michigan State flag on Saturday. She watched the game and likes to say "Go Green". Mommy has also taught her to say "Boo Blue".

Sunday Amy took her to the hospital to have labs checked. Her counts look great. No shots for a few days. It's nice to have our kid back - so full of life.

The newest food are those Grands Homestyle bicuits. She has been eating them every meal and for her bedtime snack. We had to bake some last night at 8 o'clock. When I brought her one she said "Oh! Yummy, yummy, yummy!!". She smothers butter on them. This is a good food for her to be into. Lots of calories and high protein.

Today, Ashleigh helped to take Ryan to daycare for his first day. She said to him, "Don't be scared. Daycare is fun". It was very cute and kind of sad. Ashleigh loved daycare and misses it. She did okay though and had a visit with her friends.

We are still practicing standing and some walking. This is showing very slow but gradual progress. We are hopeful she will be able to walk a few steps on her own soon. We will probably get some physical therapy again soon to see how we can help move things along.

So, overall things are going quite well. We are going to enjoy our next few days before we start up with round 5 of chemo on Friday. Wednesday, Ashleigh will have to go in for a hearing test. This test is quite involved and she will have to be sedated. Wish us luck.

Take care everyone. Update in a few days.

Friday, September 10, 2004 3:44 PM CDT

We're home!

We were discharged early this afternoon. Wednesday, Ashliegh's fever went away. Her counts continued to rise and we received the okay to go home.

Results of the urinalysis indicated she was beginning to get a urinary tract infection with a bacteria they do not typically see. The doctor described it as a "nasty one". He said he was glad we brought her in when we did, before a full blown infection took place. We have a new antibiotic to add this week to knock this thing out all the way.

Ashleigh got her appetite back today. I walked into her room early this afternoon and she was eating Doritos. What a great sight to see! When we got home, she asked for waffles and yogurt. She said she wanted cheeseburgers from the grill and corn on the cob onight. Horray!

Ashleigh's counts are still a little low. We need to go into the hospital to get labs drawn on Sunday. We will probably lay low this weekend and try to enjoy time on the swing and at the sand table. We also have to get some weight on her before chemo round 5 starting next Friday.

It's nice to be home. Ashleigh is very happy to be home and see her little brother and her bed. She is napping there now with all her Care Bears.

Everyone have a good weekend!

Wednesday, September 8, 2004 12:46 PM CDT

Hi everybody,

Sorry it took so long to update. As you see from Angie's entry on the homepage, alot has been happening lately.

Ashleigh was not doing well this past weekend. She was up all night Saturday complaining of stomach pain. It was waking her up. This is a kid who slept all night with two fractures in her femur/hip area. Sunday she would not get out of bed, eat, drink, or play. We had to take her in through the emergency room because the oncology clinic was closed due to the holiday weekend. The ER was no fun. After 4-5 hours there, we were admitted.

Ashleigh has been showing very slight improvement each day. She is still running a fever. The fever went away yesterday morning but came back higher last night. Today it remains a low grade fever. She has been treated with Morphine for pain, received blood and platelet transfussions, and has been treated with extra antibiotics. The mucusitis has been confirmed. There is also concern she was developing a urinary tract infection. Constipation is here again. She is still not eating and has lost a lot of weight. There has been some vomiting. Last night, she finally slept decent.

So, things are quite rough. Her labs this morning showed her counts are beginning to creep up. Hopefully, they will continue to climb. If they come up high enough the body will hopefully be able to fight off the infections.

It's likely we will be in the hospital for at least a few more days. If she can lose the fever and her counts get out of the danger zone, we may be able to be discharged. Hopefully, we'll get out before the weekend. We're supposed to start round 5 of chemo next Friday the 17th.

So, send some postive thoughts our way and be thankful for your healthy kids.

Update in a few days.

Friday, September 3, 2004 2:06 PM CDT

Hi everyone,

Sorry so long since the last update.

The past week has gone as well as can be expected. Ashleigh only threw up once after chemo. A new record! Her appetite has been a problem and she has lost a little weight.

We had a big scare Wednesday night. Ashleigh was standing at her kitchen set playing - for the first time in three months! It was great to see. She made lots of dinners for her, Caleb, Natalia, and Isabella. She also fielded a lot of their pretend phone calls while cooking. Dad was sitting right behind her, making sure she did not fall. She was standing/playing for about 15 minutes and bent down to get a pan from a bottom drawer. She started screaming and holding her leg down by her ankle. It was bad. We thought we had another fracture.

Thursday Amy took her to the new ortopod doctor and they did x-rays of her ankle along with both legs. The doctor said there were no new fractures. She speculated Ashleigh may have put a strain on her range of motion on that ankle and with her muscles and joints being so weak, she experienced pain. We hope that's all it is.

At the ortho appointment, the doctor confirmed their is a fracture through the growth plate above the left knee. She said the fracture is healing and it is too early to tell if the growth plate will recover, allowing the leg to grow normally. We should know within a few months. If the growth plate does not recover, we will need surgery as soon as possible.

Today at clinic, Asheigh's numbers looked ok but they are starting to head down. At this point, we are winning the battle of the bowels. We need the medications, but we are keeping things moving.

Overall, Ashleigh is doing as well as can be expected. She loves to be able to stand and play. She gets very wobbly after about 10 minutes and we have to take a rest. She has been talking a little bit this week about being "sad" her leg is not better yet. That breaks our hearts. Although she has rediscovered crawling and is able to get around a little. Mom and Dad keep a constant eye on her.

This weekend her counts will probably drop and she will be tired. The three day jaw pain will probably come in soon. Hopefully, we will get her out of the house a little. No weird new or revisited tastes yet. Although, orange yogurt is starting to pick up steam. I'll keep you posted.

New update after the weekend. Take care and hug your kids.

Monday, August 30, 2004 10:47 PM CDT

Hi everyone,

We're home. We were discharged tonight at 6:30. Overall, things went o.k. The first night of chemo (Friday) was a rough night. Asheigh was up most of the night and was hallucinating. She was very scared (orange man in the window) and angry because she could not get the bugs and worms out of her bed. That happened to be one of Amy's nights. It was really bad.

We decided to not do the extra anti-nausea meds the next two nights. We'd rather deal with vomiting than insanity. Ashleigh did well. No vomiting and she slept decent. She needed a blood transfusion yesterday and appetite has fluctuated.

Ashleigh was very happy to be home and spend time with her little brother as well as being able to sleep in her bed. Tomorrow we will have to get ready for potential puking and the battle of the bowels. She tends to get really constipated after this chemo. So, this week may be a little rough.

New complicating issue: The x-rays came back and showed another healing fracture through the growth plate in the left leg. So, she has had fractures in both legs now. This fracture is down by the knee and explains why her tibia is at a weird angle. We haven't talked with the new orthopod yet about this issue. Our research has found this could be a serious issue in regard to her leg growing and deformity. So, this is not good. I have kind of resigned myself to the fact that she will have pretty serious orthopedic problems throughout childhood, assuming she can beat the cancer.

Getting cancer at 3 is bad enough. Now, if you beat it - you will have to be 'gimpy' and probably not be able to do a lot of the fun things kids get to do while growing up - like running. She really loved to run and play "Monsters" (chase) in the backyard. She keeps talking about "playing monsters" when her leg gets better. An unfair situation just got more unfair.

Thank you to everyone for your kind words and support. Reading the guest book really helps us. Clinic again on Friday. I will try to update before then.

Friday, August 27, 2004 9:58 PM CDT

Hi everyone,

Today round 4 of chemo started. I left the hospital at 8:00. Amy is there tonight and I will stay tomorrow.

So far, things are o.k. Although, Ashleigh had a bad reaction to a nausea medication. She became very agitated and scared, yelling she could not see. We couldn't calm her down and we had to give her Ativan. She calmed down and fell asleep after the Ativan. I hope it's not a rough night. We have to figure out a new approach with the doctor tomorrow to control nausea. The medications we use do a good job with the nausea. But, they cause Ashleigh to freak out. It's not good.

Today we also met with a new orthopedic doctor. There have been some problems with the current ortho doc. Poor communication through his office, concerns about how thorough he is being, and his lack of concern over Ashleigh's left leg which is bending into a weird angle at the knee. So, we decided to get a second opinion.

The new ortho doc was awesome. She is more oriented toward rehab and works out of Mary Free Bed. She wants Ashleigh out of the brace and wants to see weekly x-rays. She said the fractures are showing "advanced healing". However, we still need to be careful to prevent re-fracturing. We really like her and she is concerned about the left leg and determined to find an answer and make a plan for rehab. Another interesting tidbit: She looked at the May 7th x-rays (a month before the cancer was diagnosed). She found a fracture that the radiologist missed. Basically, Ashleigh fractured her leg twice!!

So, we are working our way through round 4. Hopefully, Ashleigh will sleep and not vomit too much.

Wish us luck. We should discharge Monday evening. New entry then

Tuesday, August 24, 2004 9:06 PM CDT

Hi everybody,

Lots has happened since the last entry Friday.

We had an awesome weekend. Saturday we went to a Whitecaps game. Ashleigh had a great time as you can see from the pictures. She was especially excited since she has met a few of the Whitecaps players. They occasionally come to DeVos and visit the kids. We had lawn seats and it was a perfect evening. Towards the end of the night, Ashleigh layed down on the blanket and said she didn't want to go home. She wanted to sleep at the ball park.

Sunday we met up with Aunt Angie, Uncle Steve, and Alex and went to the zoo. Ashleigh had a great time and she burned two rolls of film in Grandma Kate's camera taking her own pictures of the animals.

Today was clinic. Ashleigh's counts looked good. Chemo should start Friday if her counts stay good. Her CT scan came back and the doctor described it as "It looked beautiful" with no signs of new tumors. He told us we should be "commended" for how we have taken care of Ashleigh. He said he has never seen a kid with Neuroblastoma whose counts stayed so low for so long without being hospitalized for fevers and infections and "look so good". He was also impressed with how she is gaining weight.

All of the credit should go to Amy. She takes such good care of Ashleigh, knows when/how to get tough with her on issues such as eating and taking medications, and constantly weighs out every decision about Ashleigh's care with an imformed opinion. She also questions the doctors and nurses about decisions and procedures, adding valuable input. If it wasn't for Amy, I know Ashleigh would not be doing this well.

We also had a consult with physical therapy. The therapist is very good and her and Amy came up with plans for her therapy and concerns about her left (non-broken) leg. This leg has sort of curved into a very weird angle, making it difficult for Ashleigh to walk. Also, the broken leg is much shorter than the left leg due to the way it is healing. Amy and the physical therapist are both going to pin down the ortho doc on what needs to be done.

So, we keep plugging along. Ashleigh was up to 11.9 kilos today and continues to eat toast with cream chese and "brown snowballs" (doughnut holes). Waffles are now out. We also practive standing and walking every night. She is slowly (very slowly) improving each night. We still have a long way to go.

Things are pretty good today. We know there will be more rough spots very soon, but you learn to enjoy the easier times.

Take care, update in a few days.

Friday, August 20, 2004 10:24 PM CDT

Hi everybody,

A lot has happened this week. Mostly good.

Thursday Ashleigh had an appointment with the orthopedic doctor. He saw more healing in the leg. He said the new bone tissue was soft but looked good. This is great news. He had part of the brace removed and loosened up the legs. Also, he said Ashleigh could start to bear weight and even take a few steps! He ordered physical therapy to start soon and he will see him again in 3 weeks.

Thursday night Ashleigh stood for the first time in over 2 months. She was very afraid at first. But when the fear subsided she was very proud of herself. She even stood for a short period of time without holding on to anything.

The past two nights she has also taken a few steps. She walks by holding herself up (one hand on the coffee table, one on the couch. Her legs are very weak and we kind of have to tell her how to walk. She was able to walk the length of the coffee table/couch 5 times tonight until her legs were so fatigued she couldn't stand.

So, this is great news! It will take a long while for her to be able to walk again. But, I think just being able to stand and walk a little gets her very excited, knowing she will walk again.

Other great news: The results of testing of Ashleigh's stem cells came back from LA. They said, no cancer cells present (none in 1 million cells). This is great. We will be putting clean cells back into her during the stem cell replacement this winter.

Today at clinic: Ashleigh did her CT scan without sedation. Glad to get that out of the way. The results will come next week. Everyone is interested in what has happened with that spot in the lung (remember?). She is still gaining a little weight.

Ashleigh's counts were not that great. White cells were 1920. They need to be 5000 . Also, she needed a red blood cell transfussion and platlets. It was a long day. Her ability to fight infection is barely out of the danger zone. She has reacted so weird to this chemo - not a typical recovery. Bad news: since her counts were not great, chemo will be delayed. It was supposed to start this coming Tuesday. Now, possibly Friday instead. That's kind of a bummer.

We hope to have a fun weekend, maybe take in a White Caps game and play outside.

Bye until next time

Wednesday, August 18, 2004 7:04 AM CDT

Hello everyone,

This update - good news and bad news.

Good news: The waffle diet is working! Ashleigh weighed 11.4 kilos today at clinic. That's up almost 2.5 pounds in a week. That's a lot for a kid who now weighs 25 lbs. She looks much better.

Bad news For some reason her counts took a dive. Her white counts were 26. This is down from 2ooo on Friday. Her other counts were also down and she needed a transfussion. Her ability to fight infection is zero. This turn of events is unusual and no one has an exlanation. She was also running a low grade fever. We are worried her counts may have bottomed over the weekend and she could have come into contact with something. We are also worried that her counts will not get rise in time for the next round of chemo to start Tuesday.

However, Ashleigh continues to be in a good mood and she is eating well.

Thursday she will see the ortho doctor to check on the leg. Friday is clinic again and she will have to have an new CT scan.

Sunday, August 15, 2004 12:47 AM CDT

Hello everybody,

Things have been getting much better since the last entry on Tuesday night. Ashleigh’s vomiting started to subside. However, she lost a little more weight. Thursday, no throwing up and she ate a little. We took advantage of her feeling a little better and went to visit Uncle Tim and feed the ducks at his apartment complex. Ashleigh had an awesome time feeding the “duckies” bread. Sometimes you forget how much a kid enjoys simple things like going to a park and throwing bread to the ducks.

When she went to clinic Friday she had basically maintained her weight. So, we didn’t have to go with an NG tube yet. Her numbers looked pretty good. White blood cells were down a little but her ability to fight off infection was out of the danger zone. She still didn’t have a great appetite but she was feeling better.

Saturday: Since Ashleigh’s counts were out of the danger zone and she was feeling pretty good, we were able to go to the carnival at her daycare. The staff at Daydreams and Doodles did an awesome job! The carnival was a benefit for Ashleigh. There were t-shirts with her picture, lots of games for the kids, food, face painting, etc. There was a great turnout and excellent weather. Ashleigh had a great time! I think she was a little overwhelmed at first. But after she got used to things, she had so much fun seeing and playing with her buddies. She got a butterfly painted on her hand like her friend Natalia. After she got the butterfly, she said, “Ok, Daddy. You’re turn.” As I sat down to get the butterfly painted on my hand, Ashleigh said “No, on your face”. So, I walked around with this huge green butterfly on my face. She thought it was funny.

It’s Sunday around noon now. Ashleigh’s appetite is back and the new thing is waffles. For breakfast, she polished off two and half waffles and two juice boxes. She will only eat waffles with lots of butter and syrup. She has about 5 waffles in her already today and said she is going to eat more to make her tummy big. Mom and Dad are thrilled. Dad needs to run to the store to get more waffles!

Again, Amy and I want to thank everyone for all people have done and are doing. The carnival was great. It must have taken a lot of work to organize. We really appreciate it. People’s generosity and willingness to help continues to blow us away. We haven’t been able to thank everyone personally, yet. Many people have done things or contributed money and we don’t even know about it. Please know that your support and generosity is greatly appreciated and helping to make an impossible situation manageable. Your support helps us to focus our energy and worries on Ashleigh and her treatment. Therefore, your help directly helps Ashleigh in her battle with this nasty disease.

Tuesday, August 10, 2004 9:39 PM CDT

Hello everyone,

Things have been pretty rough over the past few days. The nausea has been terrible. Ashleigh is throwing up 2-3 times per day. We have been giving her anti-nausea meds and they only help a little. Appetite has been very poor. She has also been lethargic and generally not feeling well.

Today was clinic. Ashleigh’s counts looked really good. That was surprising. However, the oncologist said he expects counts will drop in the next day or two.

The major concern at this time is her weight. She lost about 3 lbs. in the last week. That’s about 15f her body weight. She weighs about 22 lbs. now. We have started discussions with the doctor about what we will do. Friday, if her weight has not improved, we will have to intervene. The choices are an NG tube or TPN. The NG tube would be a tube that would go up her nose and into her stomach. She would be fed through the tube. If we went this route, the tube would probably be in until December-January. The second option is TPN, or feeding through an IV. Both have their pros and cons. Luckily, Amy knows more about this subject than all the doctors. She sort of specializes in tube feeders in her job. Amy is weighing out the pros and cons. Angie is talking to people on line whom had to make this decision. We’re not sure what we are going to do.

It would be great if Ashleigh could just gain weight or maintain. She wanted to eat today/tonight. However, everything she ate, she threw up. Basically, she got zero nutrition today. Hopefully, tomorrow is a better day.

Ashleigh’s spirits have been o.k., given how she has been feeling. Sometimes we see glimpses of our girl. It’s so sad when we think about how she used to be – so full of life and such a fun loving kid. This has been a hard week for mom and dad. The week isn’t half over yet. Wish us luck and send positive thoughts our way.

More in a few days…

*Hey, check out the link to Ashleigh's photo album at the bottom of the home page. Angie put on some recent photos.

Saturday, August 7, 2004 9:01 PM CDT

Hi everyone,

We were discharged from the hospital this morning after completing round 3 of chemo. Overall, the chemo went pretty well.

Tuesday night (the first night) Ashleigh had a rather harsh reaction to one of the nausea meds. She got extremely agitated and hallucinated. She thought there was a dog in the room. Her blood pressure and heart rate went way up and they gave her a hefty dose of Ativan to calm her down.

The next few nights we had the dose lowered and infused the medication in over a longer period of time. That seemed to do the trick and there were no more harsh reactions.

The doctors and nurses were amazed she did not vomit during the chemo. We almost made it. But an hour before discharge this morning, she threw up twice. At home, no puking yet.

One thing that was a little weird is that her white blood counts dropped dramatically by Friday. They usually do not drop so suddenly. As a result, she will probably be in the danger zone for infections and fevers for a longer period of time. Amy and I expect we will have Ashleigh in soon for a fever. We have been told it's incredible she hasn't had to go in yet. The oncologist told us last week that 90f kids are in with fever or infections before the third round of chemo.

So, now we're home. Ashleigh was happy to sleep in her own bed and to her her little brother. She also had some quality time on her swing tonight. She would not eat hardly anything today. However, just before bed she ate a few potato chips. Hopefully, this means appetite will be back soon. We are back on shots and more meds at home now. She is getting slightly better at taking her meds. We watch her constantly to make sure she doesn't twist her leg or try to stand up. We try to use the brace. But, it's so restricting for her and we're still not convinced of the benefits.

Since round 3 of chemo is different than round 1 and 2, we are not quite sure of what side effects to expect and how to deal with them.

Ashleigh's spirits seem pretty good today. She had a lot of fun playing with Grandpa Dinger, building a castle out of paper cups, tooth picks, and lots of scotch tape.

We won't be leaving the house much, with Ashleigh's counts so low. Hopefully, she won't be low for a long time.

Clinic on Tuesday. More info then.

Monday, August 2, 2004 6:44 AM CDT

Hello Everyone,

I could probably write 10 pages for an update today. What a great weekend!

Friday: Clinic went well. Ashleigh's counts looked really good and the sites from the bone marrow harvest and biopsy looked good. Also, preliminary tests are showing Ashleighs's bone marrow as clear of cancer. Let's hope the rest of the tests show the same.

Amy suggested we take a quick trip to Alpena to see everyone at the golf outing and take Ashleigh to the cottage. Of course, we were a little nervous since we decided to go without asking the doctors. We drove up Saturday morning and we were in Alpena for 24 hours.

The golf outing was amazing!!!! Angie described it best on the home page. We were and are still overwelmed. The compassion and support of everyone continues to blow our mind. Everyone has been so generous. Amy and I truly appreciate all the hard work and generosity from everyone. We can't thank you all enough. We can't wait to see the pictures.

It sounds like people had a good time too. The weather was great and the beer was cold. It was also great to see old friends we haven't seen in a while and meet our new friends. We wish we could have spent more time talking with all of you. Sorry. Ashleigh is still talking about the banner with her picture. She was also thrilled and surprised to see the poster board with all the pictures. When I took her into the clubhouse to go to the bathroom, she saw a flyer with her picture on the bulletin board. She pointed and said, "Dad look! Me!".

After we stopped at the golf outing, we went back to Grandma Kate's for a short nap. Then we went out to the cottage ('The Wreck'). Ashleigh has been talking about going out to the cottage to fly her kite since winter. She flew her kite and had a great time. We wanted to return to the golf outing. But, it was already late and both Ashleigh and Ryan were exhausted.

Sunday: Ashleigh has also been talking recently about going on a boat. We got up early and Grandpa Dinger and Esther took us for a pontoon ride on Grand Lake. Ashleigh had a great time, sitting on the pontoon eating Doritos, holding out her arms pretending to fly, and telling Grandpa Dinger to "Go faster". It was awesome.

So, the weekend was incredible. I'm so glad we were able to take advantage of period when Ashleigh was feeling/doing well to get up to Alpena. Seeing the support of our family and friends is overwelming. We love you all.

Back to the fight... Tuesday we start round 3 of chemo. This chemo is different than 1 and 2 - new chemo meds. We will be in the hospital for 4-5 days. We are a little nervous, not knowing which side effects we will be dealing with and not knowing how to prevent/treat them the best. Also, it's back in the body brace for the next 4 weeks. Wish us luck and send postive thoughts.

More news in a few days.

Friday, July 30, 2004 7:19 AM CDT

Hi everyone,

A lot has happened since the last entry.

When we went to clinic on Tuesday, Ashleigh's numbers looked very good. The bone marrow transplant team said they wanted to do the stem cell harvest on Wednesday (the next day) because we had a great window of opportunity.

Wednesday we arrived at the clinic at 7:30 a.m. We left at 6:30 p.m. - a very long day. The stem cell hravest was pretty rough. Ashleigh had a catheter in her femoral artery and they took bone marrow and a bone sample from her hip. Also, she had two transfussions (blood and platlets) while we were there.

Good news: They were able to get enough stem cells, so we could go home. Now we have to wait a few days to see if the sample is clear of cancer cells. If it is not, we have to do another harvest after more chemo.

We are very concerned about the site where they took the bone marrow and sample. It continued to bleed 8 hours after the procedure. The doctors and nurses could not figure out why. We went home with a pressure dressing on both areas (hip and thigh). Friday (today) the dressings will come off and we will be able to see if everyting is ok or not.

Mom and Dad were whipped when we got home Wednesday. Ashleigh was exhausted but basically pretty happy to be home. She was laying on the couch at 8:00 with purple eyes (no sleep) eating Doritos and fighting to keep herself awake. Amazingly, she slept all night and did not wake up with pain.

Thursday: Amy took her to the orthopedic appointment. The x-rays showed some healing in the bone. Great news! The doctor emphasized she needs to be in the body cast to help the healing and protect her. She will be back to him in four weeks. The ortho doc said he hopes she will be able to start doing some weight bearing on the leg and possible start trying to walk in 4 weeks after he sees her and if more healing has taken place. Also, he said he believes Ashleigh will walk again. This is much better than how he told us she will "probably walk again" two weeks ago.

Today (Friday): Back to clinic. We will remove the dressings and she will probably need another transfussion.

Next round of chemo starts Tuesday. Hope to have some fun this weekend.

Everyone please have a great time at the golf outing this weekend. I can't tell you how much we appreciate all the hard work and money people have contributed. I wish one of us could be there to thank you all in person. It sounds like it has turned into quite an event!

More news early next week.

Tuesday, July 27, 2004 6:39 AM CDT

Hello Everyone,

The entry from Monday was so depressing. We had a great day yesterday and I wanted to share it with everyone.

I (Jeff) went to work yesterday and had a knot in the pit of my stomach, wondering how things were at home. I was able to call home around lunch time. When I got on the phone with Ashleigh she said "Daddy, I eating chips. My teeth don't hurt no more!" What awesome news!

Ashleigh asked about going to the cottage the other day. She loves going out to Amy's family cottage in Alpena. Unfortunately, with the cancer and potential fevers, we really should not be that far away from Grand Rapids.

We have always had the dream of having a small cottage an hour from Grand Rapids to spend weekends when we can't get up to Alpena. Our plan was once one of the kids gets out of daycare, we would take that daycare payment and buy a cottage.

Last night we decided the family needed to get out of the house. I printed off a couple of postings of small beat up cottages for sale an hour north of here. We loaded up the car - Me, Amy, Ashleigh, Ryan and "the help" (Aunt Peggy). We headed up north and looked at some of the cottages and drove around a few small lakes.

Ashleigh had a great time. She sat in her car seat with a big bag of potato chips in her lap. She rolled down the window, looking out enjoying the ride. She was amazed that there were "other people's cottages" different from 'The Wreck' in Alpena. We sat by the lake for a while and Ashleigh didn't want to go home. She wanted to look at more cottages.

It was nice to get away and not think/talk or be hit in the face with cancer for a few hours. Also, having little fantasies of Ashleigh and Ryan swimming and fishing off the dock at a cottage we may have some day made it a great trip. It kind of helped to re-orient me towards seeing Ashleigh as surviving this.

Last night was the first night Ashleigh slept all night in a week.

Wish us luck today (Tuesday) at clinic.

Monday, July 26, 2004 6:14 AM CDT

Hi Everyone,

Sorry I have not updated in a while. I always try to update on Tuesday and Friday nights after clinic days. The days just slipped away.

Friday: Ashleigh did very well at clinic. Her counts have bottomed out and she has no ability to fight infection. She needed a tranfusion and we were there for about 6-7 hours. Long day...

The weekend was pretty rough. Ashleigh did not feel good good. She has mouth sores and what appears to be a lot of jaw pain. Also, a lot of fatigue. She didn't eat anything Saturday. Sunday all she would eat was yogurt. She was hungry though, devouring 5-6 cups of yogurt that day!

Sleeping was also rough this weekend. The mouth pain woke her up a lot. She did not get a lot of sleep Also, this damn body brace. She does not tolerate it well when she doesn't feel good. Also, it's so restricting. She really can't do much or even play outside of coloring/drawing. As a result, we had the brace off a lot this weekend. We're not supposed to have her out of it for extended periods of time. But, the kid also needs to sleep and have some kind of life. Her leg is not bothering her. She moves it - often without supporting it by holding it. This is much improved from a couple of weeks ago. We are starting to question if using the brace is really worth her not sleeping, not being able to play, and not having any happy moments.

Mom and dad are trying to cope with being a little 'fried' by all this. Seeing your child uncomfortable and suffering so often for such an extended period of time begins to wear on you. She is a shell of the kid she once was. We are not even a quarter of the way through this yet. And, we have major things to go through in the future.

This week will be big. The tentative plan is that if Ashleigh's numbers begin to look better Tuesday at clinic, we will increase her Neupegeon shots to boost her white blood cell counts. Then, we will go to clinic on Thursday. If the numbers are were they need to be, we will attempt the stem cell harvest on Friday. This will be big and not very fun.

This week we also see the orthopedic surgeon and we will have major discussions with the oncology team about adding another medication by nightly injection. They are concerned about blood clotting in Ashleigh's leg if she continues in the brace after the stem cell harvest. They are concerned clots may appear since she is (supposed to be) immobile while wearing the brace.

Lots happening. Thanks for your thoughts and support. Wish/pray we finally get some breaks! More info Tuesday night.

Tuesday, July 20, 2004 9:31 PM CDT

Hello everyone,

The past few days have been ok. Last Sunday was rough - one vomit and continuing to battle the bowel shutdown. Also, trying to sleep in the brace has been rough at times. Amy and I switch off sleeping on an air mattress on her floor. She wakes up periodically throughout the night and needs to be moved on to her back or side. This also requires strategic shifting of pillows to support her and her legs.

The bowel situation has improved. Things are moving thanks to help of the medications. This is a huge relief and keeping us out of the hospital.

Today Ashleigh went to clinic. She did awesome and joked with the staff. Her counts are still decent but I'm sure they will take a plunge within the next day or two.

Ashleigh gets a little sad at times due to her immobility and not being able to play like she did before the body brace. Last night we took the brace off and let her have some time in her swing. She loved it and it really raised her spirits. Tonight, we went out for ice cream. Pink ice cream is no longer the favorite. Now, orange is the choice.

We received news that her stem cell harvest will probably occur at the end of next week. This will be quite a project. We are still educating ourselves on it. She will be in intensive care and have a catheter placed in her femural (thigh) artery. They will try to harvest for 4 hours. If it's successful, we're done. If not, we have to stay and they will try again in 24 hours.

I guess things don't get any easier. We are waiting for a break.

Overall, things are going fairly well given the circumstances. We have our rough moments. But, it is amazing how well this kid has adjusted.

When things are overwelming, I just try to fantasize about next summer when hopefully she'll be running in the water at the cottage. Seems like a long way off when you see her now. Things have to get better - and like I said, we are still waiting for a break or some good luck.

More info in a few days

Saturday, July 17, 2004 9:47 PM CDT

Hello everyone,

We were released from the hospital Friday evening, finishing our second round of chemo. For the most part, the chemo went quite well. We were able to fight off the vomiting, Ashleigh really slept well (thank you Benadryl), and she was in good spirits. She even spent some time in the playroom doing arts and crafts. She is very proud of the wooden cut out of a squirrel she painted pink and blue. This unique piece of art is on display in our living room near Ashleigh's spot on the couch.

We ran into one problem during the chemo. They hung the last 24 hour chemo bag. After it was hanging for about 2 hours, Amy noticed it was clear. This chemo is usually red. We told the nurse and the chemo was stopped. There was an error and the bag was not prepared with the proper med combination. The chemo was delayed 3 hours to get everything straightened out. We ended up getting a new bag and she got all her chemo. We were told they have a medication error in 3 out of every 1000 bags. Why did it happen to us?! Again, it seems like we can't get a break.

We met with the orthopedic surgeon on Thursday. He said Ashleigh has one and probably two fractures of her femur near the hip joint. He said he was very concerned the bone could become more severely injured - another fracture or be pulled apart at the fractures. Due to the cancer treatment, we really do not want to go in and repair (operate) if the bone if gets worse. Therefore, he said she needs to be in a body cast for 6-8 weeks. Obviously, this was devastating news. We talked a long time with him about other options. We said we might be able to have a body brace made rather than a cast. This would allow access to her thighs for the shots at night, allow access for the bone marrow harvest (through the artery in the thigh) next month, and allow us to take it off to clean her and make sure there are no pressure sores developing.

The brace was made quickly and Ashleigh wore it home Friday. This thing is a trip! It starts at her chest goes all the way to the ankle on one side and to the knee on the the other side. Her legs are at about a 40 degree angle with her torso and her legs are spread a bit. The right leg is spread way out.

We thought there is no way this kid can live in this thing. When we first put her in, it was horrible. Ashleigh, mom, and dad were crying. Amazingly, she has kind of got used to it after wearing it one day. We took it off to clean her up this evening. When Amy was putting it back on Ashleigh put her good leg in by herself with out us even asking her.

It's uncomfortable to sleep in - she can't role over. But she slept pretty well last night and had a good nap today. We just have to go in occasionally and turn her on her side and strategically prop up pillows so she will be more comfortable.

Recovery from chemo - Ashleigh is doing fairly well. She was tired today but had an appetite. She did not vomit today. However, the battle of bowels is on. We are giving her meds to help. But, nothing in the past 48 hours. We're worried. I hope we don't have to be hospitalized for constipation again. The constipation has been the biggest and most painful problem of all of this.

So, we plug along. Ashleigh is still beautiful and continues to bring us joy. Ryan is doing well. He's a very happy and easy baby. Big too - 95th percentile for weight and 85th for height. Were did he get that from?

Again, thanks for all your thoughts, gestures, and encouraging messages in the guest book.

Will update in a few days.

Sunday, July 11, 2004 10:05 PM CDT

Hi everyone,

Good day at clinic Friday and great weekend!

Friday: Clinic went very well. Ashleigh didn't fuss or cry as they drew blood and did the other procedures when we check in. She even joked with some of the staff. Her counts were very good and we were able to quit giving nightly shots for the next few days. Ashleigh was happy to remind us several times "No pokes tonight, Mommy".

Friday we also stopped into daycare and Ashleigh brought cupcakes for all her buddies. She wore a hat in and eventually took it off. Some of the kids kind of looked at her and Natalia asked her, "Ashleigh, were's your ponytail?" The novelty wore off in about a minute and then everything went back to normal.

Ashleigh's birthday is 7/12 (Monday). We celebrated with a small family party Saturday. Of course, her best buddy Caleb was there. Ashleigh had a great time, got lots of presents, and had plenty of quality time with all the grandparents. It was good for a lot of the family to see her in good spirits since they have all witnessed the bad days.

So, the past 4-5 days have been great. Ashleigh has been in good spirits, eating well, and bowels working well.

We start the second round of chemo this Tuesday. I'm glad we enjoyed our good days. We learned alot during the first round and I hope we are able to prevent or diminish some of the problems we dealt with last time. Things will still be rough but I think we are getting better equipped to deal with them.

This week will also be important because we should learn more about what we can do to address the broken leg/hip. Also, we will get educated and make plans for the bone marrow cell harvest which takes place after the second round of chemo.

So, wish us luck. Thanks for all the support. More info to come in a few days.

Thursday, July 8, 2004 9:45 PM CDT

Tonight I am very pleased to write a positive and happy entry. Ashleigh has probably had the best two days since all this began a month ago!

Her spirits have been high. Her molar pain has subsided and she is eating great. She is joking alot and very happy - like the kid we know and love. She is also taking advantage of how lenient we have become in regards to what and when she eats. At 8 o'clock last night she was settled in watching her video and having milk before bedtime. All of a sudden, she decided she wanted to eat dounut holes and drink a juice box. Mom and Dad scrambled to get our little skinny girl her request. She thought she was pretty cool with her little feast.

Another funny story: Amy went to check on her after putting her down for a nap. When she peeked in, Ashleigh wasn't in her bed. Amy freaked and said "Ashleigh! Ashleigh!". She was over in the corner between her dresser and the wall, sitting there playing. Amy didn't see her and Ashleigh started laughing due to Amy's reaction. She proudly told Mom she crawled over to her Barbie house and back into the corner to play. How does a kid with a broken hip do this?

So, things are going very well. Ashleigh has been painting lots of pictures and has a new doctor's kit. She is a pro at checking her 'baby's blood pressure, temperature, and cleaning the doll's Broviac lines. She is "Dr. Ashleigh".

Ashleigh's hair is almost gone. It doesn't seem to bother her much. She is still a gorgeous kid. She's starting to get into wearing hats.

Tonight, Amy started reading some of the entries in the guest book. I printed them off for her since it's too hard for her to get on the web site. She was so touched by all your kind words and support. She was balling, had to put them down, and had to pick them up again and start reading. Thank you for your support. And, for all of you who know Amy - you know she would kill me if she knew I wrote this!

Tomorrow, we have our clinic appointment. Also, we are going to spend some time at her daycare in the morning. Ashleigh picked out cupcakes to take for her buddies to celebrate her upcoming birthday. The weekend we will have a small birthday party. Next week chemo starts Tuesday.

Update in a few days. Have a great weekend and hug your kids.

Tuesday, July 6, 2004 8:36 PM CDT

Hello everyone,

Ashleigh was hospitalized for most of the weekend. We came home early Sunday afternoon.

During the time in the hospital Ashleigh's bowels started working on their own finally. She now has diarrhea. We will take that over consitpation anytime. Ashleigh also recieved blood and platelet transfusions because her numbers were low. The hospital time was fairly rough. Ashleigh did not sleep very well.

Sunday and Monday were pretty rough days. Ashleigh was tired and (as luck would have it) her 3 year molars are coming in and causing a lot of pain. She was so hungry to eat and would cry when chewing things. She did not sleep well. This poor kid can not get a break.

One thing that was pretty scary was her depression. Yesterday, she basically shut down. She would not talk, eat, or drink. This sort of freaked me out. It was like she was giving up. Amy was able to engage her a little bit Monday morning.

Monday evening - We have one of those little trailer/car things you put kids in and attach to your bike. It was a birthday gift to Ashleigh from Grandpa Dinger and Esther. We took Ashleigh outside to show her and she said she wanted to take a ride. Amy took her for a spin and her spirits lifted. It was great to see!

Tuesday: Today we had a clinic appointment. Things went smooth initially. Ashleigh's blood counts are improving. Her white blood counts are still a little low. However, her ability to fight infections is out of the danger zone. However, she had a block in her Broviac line. This could be a major issue, leading to another surgery to replace the line. The staff worked on the line over the next few hours and were able to get the block out. We were there for over 6 hours but at least the block is out.

Ashleigh had a better day today. She is less depressed. She even called me a "Pollock" tonight. First time in almost a week. That felt good.

Hopefully, the next few days will be manageable. Dad goes back to work tomorrow, leaving a lot of work for Mom during the day. Luckily we have good family support to help care for Ryan.

Clinic again on Friday. Chemo starts again next Tuesday.

Saturday, July 3, 2004 11:04 AM CDT

It’s Saturday morning at 5:10 a.m. I’m sitting here in the hospital listening to Ashleigh breathe. She is on a heavy duty pain med that makes her breathe differently. It’s kind of scary to hear – but, at least she’s comfortable.

I will apologize for this entry now. If you are having a great weekend and in a good mood, consider reading this later. We received some rough news today. Nothing to do with her cancer treatment prognosis or death – so don’t get worried about that. Just another problem or complication.

Friday was our outpatient clinic appointment. Thursday night Ashleigh was up from 1 a.m. on with major pain due to constipation. The clinic let us come in early. Ashleigh’s white cell counts are still low (to be expected) and her ability to fight off infection is zero. The doctor believes one of her chemo drugs basically temporarily paralyzed a nerve involved in bowel function. Therefore, she can’t push out stool.

So, we had to get her relief somehow. He decided on a suppository. This doesn’t seem like a big deal. However, with her ability to fight infection so low – even use of a suppository can lead to infection. The doctor said the timing of using this intervention was “the worst”, given her blood counts. Therefore, she will be admitted for a day or two to get antibiotics by IV in order to fight off any possible infections. The suppository worked. After things ‘moved out’ so to speak, Ashleigh felt a lot better and said, “My tummy doesn’t hurt anymore. I can eat”.

Now the rough news. They did an X-ray to get an idea of how much stool she was holding. They saw something on the X-ray no one suspected. Remember the issue of not walking? We found out why. Preliminary findings indicate Ashleigh has fracture of her femur (thigh bone) up high just below the ‘ball’ on the end of the point that goes into the hip joint. I know, you’re saying “What, how?”. The doctor also found some concentrated involvement of cancer cells in that area. He suspects the cancer basically weakened the bone or destroyed bone tissue at that area, making it susceptible to easy fracture.

What does this mean for treatment. Treatment of the cancer will likely remain the same. Here is what gets complicated: They can’t do invasive orthopedic intervention (surgery, screws, etc.) to fix the bone while she is undergoing chemo because of the risk of infection. You can’t put off chemo because the cancer will progress.

We don’t know what we’re going to do. We do know we will be seeing an orthopedic surgeon who specializes in cancer cases when he gets back from vacation in mid July. In the meantime, Ashleigh will undergo more testing like an MRI, etc. Also, we have to manage pain. The problem is that the medications available to us to manage pain are limited due to the chemo treatment. The meds that are left are primarily narcotics with the main side effect of constipation. You see how this gets complicated with a vicious circle arising?

This kid just can not get a break. Amy and I were basically devastated by this news. We had been pushing her to stand and walk, based on the recommendations and treatment designed by physical therapy. We were basically forcing her to walk with a broken leg!

However, we now have our answer about the inability to walk and hip/leg pain. The next few weeks will tell what we can do about the broken leg. Will we ever get any positive news again? How can we keep her spirits up so she can fight this when she is miserable with pain? How the hell do you live with a untreated broken leg for several months while dealing with the rigors of chemotherapy?

Sorry such a grim update. I’m trying to find positives to report. There just has not been many lately.

More news in a few days. Thank you all again for everything you are doing to help - your kind support, thoughts, and prayers.

Tuesday, June 29, 2004 8:31 PM CDT

Hi everyone,

First of all... Amy and I would like to say thanks again to everyone for their help, support, and kind words. Also, Ashleigh wants to thank everyone for all the gifts. Every time the doorbell rings she thinks it's another "present for me?". She has been rotating favorite stuffed animals from "boingy chicken" to "my Caleb bear" to "elaphant" and to various others. Also, she loves the cards. Every time she opens a new card she holds it up and says "Oh! Look Mommy!"

Today we had our first outpatient visit to clinic. Ashleigh's white blood cell count was 50. Normal is 5000-10,000. When she left the hospital after chemo her count was 8080. This dramatic decrease is expected. The doctor said she will probably be in this "danger period" for the next 3-4 days. Basically, her body can not fight off infection. She is at high risk for infections and fevers now. As luck would have it, I developed a head cold two days ago. Basically, I wear a mask anytime I'm around Ashleigh. We will be watching her close.

Today the doctor stopped a few medications and added codeine. He said he wants to be more aggresive in treating her bone pain. He is afraid her leg and hip muscles will decompensate further unless we can get her started on her physical therapy exercises again.

Yesterday, the doctor prescribed a strong laxative to releive constipation. It worked great and she was a whole different kid after her first BM in four days. The whole house cheered for her and she was very proud.

Things are still rough but we are getting through them. Ashleigh has rough times but we are seeing more of the kid we know and love. Her sense of humor has come back and we are seeing more smiles.

Clinic again Friday. More info to come.

Sunday, June 27, 2004 9:27 PM CDT

Hi everyone,

The weekend went ok I guess. It was still rough. Ashleigh has been eating fairly well. However, she is severely constipated. This is one of the side effects of the chemo. We've been giving milk of mag and it hasn't touched it. Amy will call the clinic tomorrow because it's been over 3 days since a BM and she is getting really uncomfortable.

We continue to have struggles trying to get all of Ashleigh's medications in her. She threw up a few times this weekend. Giving the injections is rough. She still complains of a lot of pain and cannot walk. This kid is going through so much.

Most times, Ashleigh does not want to do anything but lay on the couch. She just doesn't feel good and is very tired. We were concerned she was getting quite depressed. So, this weekend we basically forced her to be outside with us to play or go for walks in the stroller. She protests initially. However, she ends up really enjoying these times. These can be things as little as walking around the yard looking at birds.

We feel like the depression is lifting a bit. Her sense of humor came back today. She can be pretty funny. She likes to call her Dad "Daddy Pollock". Her smile still lights up our life. We cherish every smile nowadays.

This week: We go to clinic Tuesday and Friday to get blood draws and transfussions if needed. Her white and red cell counts should be going down now. She has been itching her hair and it will probably start falling out soon.

Sorry this sounds so grim. It's just rough. We try to take one day at a time and fantasize about next summer when hopefully she will be in remission and she will have her life back.

Enough for now. Update in a few days. Again, thanks for all your prayers and thoughts.

Thursday, June 24, 2004 9:07 PM CDT

We arrived back home from the hospital at about 8:30 pm tonight. It's nice to be home. Ashleigh was happy to see her brother Ryan. The grandmothers continue to take good care of him.

Chemo went ok, I guess. Monday night Ashleigh complained her tummy hurt and she did not sleep well. She also had a lot of bone pain. Tuesday was bad. She woke up out of a dead sleep and vomitted twice. Last night was the best night we had at the hospital. Ashleigh slept ten hours and no sickness.

The chemo meds change over the 72 hours. We think we may have the one figured out that caused the vomitting. Next time we will give more anti-nausea meds to try to prevent what happened Tuesday.

A major issue remains with Ashleigh not being able to walk. We met with the surgeon today as well with physical therapy tues and weds. We're having a tough time figuring it out. We saw slight improvement tonight. Ashleigh stood on her own for a while. This will probably just take time for her to get her strength back in her leg and hip.

The next few days will be tense. Ashleigh's anti-nausea meds wear off at midnight and hopefully she won't get sick. We also have a lot of meds to give her starting tomorrow as well as injections.

Sorry if all this sounds so grim, or maybe it's too graphic. I guess I just feel compelled to tell things truthfully.

We are still early in the treatment. Once we get our routines down, things should get easier. It's just kind of overwelming right now.

Tomorrow the goal of the day is to get Ashleigh out in her swing to enjoy herself, have her Friday night pizza and pop, and try to help her get some rest.

Tuesday, June 22, 2004 2:12 PM CDT

Ashleigh had a lot of fun over the weekend. She played with her buddy Caleb and spent time with family. Sunday she was having a lot of leg and hip pain and would not even try to walk.

Ashleigh started chemo yesterday. We got results from the MIBG scan yesterday. This scan looks over the entire body to find cancer cells. We received good news and bad news. Good news: there is no remaining tumor, the spot on her lund is not cancer (they are not sure what it is) Bad news: she has pockets of cancer cells in her bone collecting in both upper arms and thighs. This explains why she is not walking and having bone pain.

Chemo: This is no picnic. Ashleigh was up most of the night last night. They has various checks to her broviac lines every two hours at night, vital signs taken every 4 hours, and alarms going off on her IV machine throughout the night. She still continues to have a lot of bone pain and last night she said her tummy hurt and she felt like she had to throw up. Appetite is down too. We've been trying to bribe her to eat with Cheetos and Sprite with limited success.

Enough for now, I'm going back to the hospital.

Again, thanks for your kind words, prayers, and gestures.

Jeff

Friday, June 18, 2004 9:32 PM CDT

Amy and I want to thank everyone for their kind words, support, and all the cards and gifts sent to Ashleigh. We would also like to thank everyone for their offers of help. As we begin the long road of treatment and hopefully beating this thing, we are not quite sure how or in what ways we will need your help. As we get farther into fighting this we may call on some of you for favors.

Yesterday Ashleigh underwent a MIBG scan. This will tell us where and how much neuroblastoma (cancerous cells) are still in her body. She also underwent a 24 hr urine collection through a catheter to check if her remaining kidney is working properly. We have not received results of the tests yet.

Today she was quite happy to have the catheter removed. Although she still cannot walk and this dampens her spirits at times. She also got a short hair cut to prepare for chemo. She will lose her hair more gradual if it is shorter. She also met a new friend named Molly at the hospital today. Molly was diagnosed with the same type of cancer and is currently undergoing her fifth cycle of chemo.

This weekend we hope to relax, catch some quality time in Ashleigh's swing, and rest up for the beginning of chemo on Monday.

I'll update you more next week to let you know how things are going.

Sunday, June 13, 2004 8:37 AM CDT

The future: We have tentative treatment plans I want to make everyone
aware of. We may need some help.

Ashleigh will go through 7-8 months of intensive chemo. Chemo will likely
start June 21/22. Most of her chemo will be inpatient, requiring hospital
admission. We do not have all the calender dates specified yet. However,
her chemo will basically require a 3-5 day hospital stay. There are 6
cycles of chemo. After a cycle, Ashleigh will go home and the next cycle will start 21 days later. Within that 21 days, she will have to come into the outpatient clinic twice per week for blood draws and to have her levels of various types of cells checked. The big problem is during this 21 day period it is inevitable she will be readmitted to the hospital for low blood levels, fevers, and possible infections. Her body will not fight off things like it used to due to low white and red blood cells. She will also be sick a lot during this time and will lose her hair. I'm not even mentioning the care Amy and I will do at home including daily shots of medication and flushing her Broviac lines.

The second phase of treatment (after chemo) will be the bone marrow
replacement. This involves a 1-2 month inpatient hospital stay. During
that time, we will only be able to interact with her while wearing masks
and she can not leave her room. The last phase is radiation.

In all, treatment will last approximately a year. The big risks are that the cancer will not respond to treatment or that she could die from
infection.

We have a long road ahead. All this with trying to care for a baby, stay out of financial ruin, and not losing our minds.

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