History

Sunday, July 27, 2008 2:23 PM CDT

Better late then never……

Well at least I did not wait a year to update this time and I actually updated the photos as well!!

Ava Is doing tremendous, all scans remain clear and the Doctors at Memorial Sloan in NY are very pleased with where she is in her journey. It is still hard for me to believe that it has been now over 4 years since Ava had her Stem Cell transplant at Duke. We are truly blessed to be where we are and are thankful each day for the miracle. Ava is quickly blossoming into a young lady years ahead of her time. She is very motherly to her two little sissys, especially Emma who is now 16 months. She will make a great mother one day. Ava and Maya are the best of friends although they fight like cats sometime and other times they love like kittens. All the girls have been enjoying the summer with daily trips to the beach, pool and or just playing with friends. We moved to a new neighborhood in Wilmington where we have made many new friends and the girls have tons of playmates. This Fall Ava will be headed off to real school or at least as real as Kindergarten is, but a huge step indeed.

We are grateful for all of you that have continued to follow and pray for Ava. One day when she is old enough to understand the journey she has traveled I am sure she will thank all of you herself.
Thank you and God bless,
Mark

Saturday, August 11, 2007 7:45 AM CDT

Long time no see! How have you been?

I must begin this entry with an apology to all those that continue to support and pray for Ava for not posting to her site in over 1 year! Ava is doing great and just being a normal 4 year old girl!

Since I last posted we have been to NY for scans 4 times and have had good results with her scans after each visit. We are quickly approaching another scan date that will take place sometime in September. The doctors have been pleased with Ava’s progress and are more hopeful as she distances her self from her original diagnoses date over 3 years ago. Lisa and I realize we are far from being out of the woods, especially when we see so many families like us that face the reality of having to go back in to battle, the war has not been won yet! I often forget just how blessed we are to have Ava this far along, especially when she puts on her “I can not hear you Dad” ears. Perhaps the challenges of trying to reverse the effects of 3 years of absolute spoiling by us may have long-term side effects as well (I pity the man she marries). For now we keep rolling with the punches and trying to make everyday a holiday or at least a “Snow day” like we had in my youthful Midwest rearing.

Much has happened in our lives since last year as well, namely the arrival of our new baby girl “Emma Skye” this past March, bringing the count to 3. I am now surrounded by a house full of women!!! I know what all of you are thinking, just wait until the weddings! My school of thought on the matter is “I will Cross that Bridge when”, of course the girls can make their own decisions about dating and marriage once they turn 30!!!

I will try to do a better job of keeping all of you informed of Ava’s progress, perhaps I have not slowed down long enough to remember all those that have been supporting Ava over the past 3 years but we are very thankful for all the continued prayers.
God Bless,
Mark

P.S. I am working on posting new pictures as well so that you can see how Ava and her siblings have grown and blossomed!

Tuesday, June 13, 2006 8:32 PM CDT

All Scans Clear

I can not believe I forgot to put a cherry on top of the sundae, from our last trip to NY for scans. As you can see from the headline, all scans came back clear once again and we are free to roam for another 3 months. Speaking of free to roam, we also just returned from Ava’s Make-A-Wish Trip. He wish was to take a Disney cruise and see all of her old friends namely Mickey and Minnie. She had a blast on the trip and although she demanded being treated like one of the princesses most of the time. I can not say enough good things about the cruise and the special little things the Disney crew did to make things special for her. Maya had a good time as well but was a bit unsure of all the special attention and new places. Add the fact that she started walking one week before and your have a recipe for chasing busy feet.

Maya and Ava are such great friends; you can already see the amazing bond that is developing between them. Maya wants to be just like Ava, while Ava wants to be just like Mamma!!!

I have posted new pictures of both of the girls under the picture section and will work on updating the additional pictures links.

Thank you for all your thoughts and prayers.
Mark

Monday, April 24, 2006 8:05 PM CDT

Time for Scans

We are two days away from our next trip to NYC for Scans and Bone Marrows. We leave Wednesday morning from Myrtle Beach and the whole family is making trip. We decided to give it a go this time and see how well this comes together. The interesting part will come at bed time when Maya goes down 2 hours before Ava so I am sure it will not be without challenge.

Ava has been complaining of pains in her belly and privates for the past 4 weeks and actually went through two rounds of Antibiotics to combat a bad UTI. We hope that the pain is a result of the infection and that all will come back clear again and we can enjoy the next few months of summer.

To see Ava and Maya together you know that there will be a special bond as they grow older. They feed one another’s furry, if one screams they both scream and laugh, ect……… I can tell the two of them will be something special. Maya tries to do everything Ava does and takes the lumps that come with it like a champ. Soon Maya will be walking and giving Ava a run for the money. I planned to post some new pictures of both of the girls but have not been able to catch them together but hope to do so very soon.

God Bless,
Mark

Tuesday, March 14, 2006 4:19 AM CST

Spring is in the Air!

We have been spending a great amount of time outdoors over the past month given that spring is in the air. Ava has matured way beyond her years over the past year and she really takes charge of most situations. I guess that is the polite way of saying she does not always listen as well as she should. We understand most kidos that have been through her treatment have partial hearing loss but I think she may have selective hearing as well. We are just happy to enjoy the time together and breathe the fresh air together. Maya has gotten so big she is nearly walking and she will do anything to keep up with her big sis. Ava is teaching Maya all of her favorite tricks like how to scream at the grocery store, they are peas in a pod.

I wanted to mention the struggles of Cam who is losing the battle to this horrible disease(NB). Apparently things have taken a turn for the worst and there are no more arrows remaining in their quiver. Michelle (Cam’s mom) was one of the first parents we met at Duke prior to going through transplant and she has always remained steadfast and positive despite. Please offer a prayer for Cam and their peace during this darkest time. We realize that we are all blessed for the time we have with our treasures and hopefully we all recognize the gifts we have before us.

Mark

Sunday, February 5, 2006 9:21 PM CST

All Tests and Scans are Clear!!!!

Ava did a Super job on her last trip and all scans and the bone marrows have come back clear again. We thank God and everyone for all the prayers. Ava is now 2 years past her original diagnosed date and each and every day we celebrate the Miracle she has become. Maya would not smile from ear to ear the way she does when she sees her big Sis without God’s continued blessing. We do not have to go back for test for another 3-4 months which will be a huge relief. I will do my best to get a few better pictures of both of the girls and post them soon.

Please say extra prayers for our friend Cam who is also a NB warrior and all the others that walk the same path that they may find their way.

Mark

Wednesday, January 11, 2006 3:55 PM CST

Big Apple Here We Come!

Ava was due for scans and so both Lisa and the Princess have made the journey north to NYC. The planning of the trip was last minute given that MSK had an opening on the schedule this week and we were forced to move quickly. Thus Ava and Lisa had to travel without Maya (she is a Daddy’s Girl) and I. Please wish them luck as they have not made this trip alone to date. We continue to pray for clear scans and clean easy living!

God Bless and Happy New Year!
Mark

Thursday, December 1, 2005 10:12 PM CST

A Call to Arms!

Ava is doing wonderful, the picture above is of her flashing the new pearly whites. Yes she had the majority of her teeth capped due to the destruction her treatment caused forcing us to have major reconstruction performed on her teeth. The end result is priceless. Maya is doing great and she very well may catch Ava in size before her first birthday, WHAT A CHUNK! We all are adjusting to life without Linda and only time will tell how well we adapt.

This is my first update since my posting of Ava’s clear scans and a lot has taken place since October but I wanted to focus all attention on the fight for a cure that Lunch for Life has embarked on this holiday season.

OUR PLEA!
Today is no ordinary day. In fact, today, this hour, and this minute is more important than anything I do all year with the exception of caring for my family. Today is the beginning of Lunch for Life. Lunch for Life was started two years ago. It was started by desperate parents of children with neuroblastoma because of the dire lack of research funding dedicated to curing the disease. What do I mean? The federal government provides research funding through the National Institute of Health and finally the NCI. These funds then trickle through several agencies where it finally falls into the hands of researchers. Last year the Children's Oncology Group (the largest group dedicated to children's oncology research with over 200 member hospitals) received $1.5 million to be dedicated to research neuroblastoma or $2500 per child diagnosed annually. Breast cancer researchers received over $15 BILLION or $75,000 per diagnosed patient annually.

Lunch for Life was created to bridge this gap. Over just the first two years Lunch for Life has raised over $500 thousand dollars for research into the cure of neuroblastoma. Right now there are three neuroblastoma research programs being funded because of this effort and at the beginning of 2006 we will be adding four more. We are making a difference and we will save lives.

Unfortunately, the fact of the matter is that, children continue to die from neuroblastoma everyday. But we can make a difference. We can change this reality and we can hasten a cure but it depends on us - each and every one of us. We are the ones, you and I that these kids count on. The paltry research funding scraps that they receive from the federal government is not the answer. We are the ones that can make the difference but it depends on you. I ask that you help me, the families of lunch for life, and, most importantly, our children by skipping lunch and donating the money you would have spent on it to the Children's Neuroblastoma Cancer Foundation. Additionally, I urge you to tell your friends and family and ask them to donate their lunches and propagate the message to their friends and family as well. It depends on you and I. There are no expensive market programs, no commercials, and no loudspeakers. The message and our children's future depend on each and every one of us doing our part to ask the world to give up one day's lunch to cure cancer. That is all it takes but we need your help.

If just one of us told five friends to give up lunch today, and asked that the next day they asked five of their friends to do the same...and those five friends asked five of their friends to do the same on the next day and so on for the next ten days...Do you know how much money could be raised?

At just five dollars per lunch that would raise $9,765,625.00 in ten days.

It depends on each and every one of us. Be one of my five friends. Let’s put a stop to neuroblastoma.

As an added bonus we have added a twist to Lunch for Life this year in light of the holiday season. Each of the 200 children with neuroblastoma that are a part of Lunch for Life has a virtual holiday tree at the Lunch for Life website. When you donate in a child's name that child also receives an ornament to decorate their virtual holiday tree. Ornaments earn the children donated prizes and a chance to win an all inclusive dream vacation for he/she and their family to Walt Disney World.

Please go to http://www.LunchforLife.org right now and donate your lunch. The website has all of the information you need. Then, most importantly, contact your friends and ask them to do the same. If we do this together we could put neuroblastoma research ahead by over 6 years in the next ten days. Yes, in the next ten days we could potentially save over 1800 children's lives.

NOW, THAT IS PURPOSE!
________________________________________________________

Please visit the
Lunch for Life
site and donate a lunch for a day or More!? If you would like to donate in
Ava’s name please use her tree code
“14163”
or do so in her name at the
donation page . Follow the links
so we can see how many lights we can put on her Christmas tree and hopefully we can light up the life of all the kidos that follow
in the footsteps by funding a cure for the Monster.

Ava’s tree is located at

http://www.lunchforlife.org/giving_tree.aspx?cid=12

Thank you,

Mark

Sunday, October 16, 2005 9:23 PM CDT

Scans All Clear but Victory is Bittersweet!

We had results back over a week ago and I have been negligent about updating the site since we have been so busy. As you have read, all tests on Ava have come back no evidence of Cancer. Thus we can breathe easy for another 3 months until we do it all again. We were very happy to say the least and Dr Kushner was quite pleased as well. In fact the entire trip to NYC turned out to be much better than I had anticipated, despite Lisa not being able to make the trip. The flight home with Lowes, was the cherry on the banana split. I can not say enough about the people we met with the Company, what a pleasure and I offer them all a special thanks!

I say the results for Ava are bittersweet due to the outcome of Linda’s battle. Linda passed away this Wednesday and we put her to rest yesterday. Linda was everything to Ava and that makes this especially hard as we search for the answers to her questions about her Nana. Ava’s comment to Lisa and Poppy when she first saw them, upon their return from the hospital was “Is Nana an Angel now up in the sky? She is my Angel and your Angel too!” I must say that I was strong until she said those words in her sweet little voice. Perhaps this is part of the bigger plan that only time will reveal the answer, but for now it shows us that we should live each day as if it could be our last and cherish the ones we love no matter what!

Thank you for all your prayers and kind words for Ava and Nana Linda. I will keep you posted on Ava as usual.
Mark

Tuesday, October 4, 2005 10:33 PM CDT

NYC and Home at Last

Our trip to NYC was somewhat a challenge to say the least. Due to the condition of Lisa’s mother Ava and I made the trip with out Lisa. Now this may seem like a minor task unless you figure the longest Ava has ever been away from mamma was several hours when Maya was born. Ava and I scheduled a flight in direct flight from Raleigh since we had been staying near Chapel Hill where Linda is been treated. We felt it was best for Lisa to stay behind since her mother’s condition has turned for the worst. The three days in NY were fairly smooth and Ava handled things quite well although she cried for Mommy when she got her IV and had to drink the contrast for her CT scan. We should have the full report back later this week but the initial scans have come back good, both MIBG-Clear, CT Scan-Clear. Now we wait for the remaining results from the bone marrow aspirates and the Urine test, these are the more sensitive tests which we hope will produce the same results as the others.

Now we wait for the final results, which we should have later this week.

Please say a prayer for Nana Linda that she may find peace in her time of suffering. I will update later this week once we know more.

God Bless,
Mark

Monday, September 5, 2005 8:49 PM CDT

Like a roller coaster, so goes the battle with C

Well things have been quite for the last 30 days with Ava, she has been doing what normal kids do. Our decision to not pursue treatment after her clean scans was truly gratifying. She has been to the beach, the park, the pool, the Mall and anything else she wants to do since our last trip to NY. Now we are planning to make the journey to NY again for another set of scans and to have her bone marrow tested again. We are hopeful that the results will be clear and she can continue on her current path of normalcy. Tomorrow Ava starts her first day of school which is a huge event for us given we never knew if we would be making this jump. She is excited and ready to go; I only hope her teachers will be able to tame the terrible twos she has developed. I am sure she will be a joy to behold!!!

The other side of the coin is our fight with Linda, Ava’s Nana. The cancer continues to spread while we search for new treatments to change the path. Its hard to believe that a year ago Linda was taking Ava and Lisa to radiation after transplant and ultimately to her cleared status. Now the shoe is on the other foot as we scramble for something that can make a change. Please keep Linda in your prayers if possible and hopefully we can have some positive results with her as well.

God bless.
Mark

Friday, August 5, 2005 3:46 PM CDT

I promise to update more this weekend, but Ava is doing well and so is Lil Sis Maya. Thank you for the continued thoughts and prayers. I will add a picture of Maya to the more pics page as well. I promise!

God Bless,
Mark

Sunday, July 3, 2005 9:41 PM CDT

Wow! Has it been that long since I updated?

I have received several emails and calls from those of you that follow Ava’s progress and I apologize for the delay. I must say, I thought things would be a bit easier with the new one but that is part of being a parent, right? I could tell that my parents were feeling the Mark like attributes that Ava is already starting to develop (Mark being me)! All in all, Ava is adjusting quite well to her new sister although she has thrown several fits regarding the amount of attention Maya is getting. Otherwise Ava has been such a big help with Maya and she is not short on giving her kisses whenever she can get close enough to plant her lips.

The Results!

We finally got all the results last week after what seemed like forever and everything was clear! Yes I said all clear, which took us by surprise given the MIBG had an area of concern that we followed up with an MRI that turned out to be negative. Although we were elated we are still unsure what our next step will be and where we go from here. We had fully intended to be starting more chemo by now and then planning a regimen that includes the experimental antibody treatment at Sloan, but now we are in the clear at the moment but not letting our guard down given the relentless attributes of the Monster! In other words the war rages on until we can find the final silver bullet to destroy the threat. So, Ava, Lisa and I would like to thank all of you again that have offered so much support and so many prayers as Ava fights her battles. We can only hope that the good luck will continue and we can one day put down our guns and live free.

Please pray for all the other kidos that are fighting the
war just as Ava does, especially Cam, Sydney, Jared.

God Bless, and have a safe 4th!
Mark

Thursday, June 9, 2005 6:02 AM CDT

The Big Apple!

We arrived in NYC on Tuesday for testing which will be completed today!! We will not have full report until next week but should have some preliminary results by Monday. I will report later on the series of events from this trip as I have to get my Angels out of the beddy by, and I will need at least 1 hour to cover the past couple of days.

Pray for a miracle that the remaining cells in Ava's marrow have decided to exit!!!!

Bless,
Mark

Thursday, May 26, 2005 10:24 PM CDT

She is a keeper!

Oh my at 9lbs. and 21.5 inches she was a whooper, in fact the game and parks warden (Doc B), said that Maya Luna was close to record weight. All kidding aside both Mama and baby are doing well and adjusting to the new surroundings of home. Funny how different the home is now with two little ones compared to one little gremlin. While mom and the new baby gain strength, Ava has made sure that Maya feels welcome and knows who the big Sis of the house is. Lisa is adjusting slowly although I think it kills her that she is not able to pick Ava up due to the birth. Ava seems to understand that Mamma is half speed and she has done a good job of helping mamma albeit Dad has seen quite and increase of duties as of late. Tonight is my shift watching the new one so I am planning on only a few winks but when I look at the little bundle of joy nothing else matters.

We appreciate the prayers and kind words of encouragement over the past couple of weeks we have needed every one of them. Once Mama has healed the planning begins for the next phase of Ava’s treatment. We plan to fly to NYC on the 6th and conduct a full round of tests with bone marrows. We will make our decision at that time regarding what the next step will be. Our hope is for a miracle and everything will be clear but we are ready to face the enemy if he should arise. For now we will enjoy every moment of the time we have until NYC and hit the beach and the pool.

Please keep All children like Ava in your prayers and also Ava’s Nana who had her own scans this week to see where things stands.

Take care and God Bless, enjoy the long weekend.
Mark

Wednesday, May 18, 2005 6:13 AM CDT

A Child is Born!

Today is the big day, for everyone here. Baby Maya will be delivered hopefully without a glitch and we will have another bouncing beauty on our hands. There is excitement in the air to say the least…..especially for Ava as she ponders how things may change. This will be the first night in Ava’s life that she has not been with out Mommy for the night, so say a prayer for Nana as she attempts to tame the tiger at night-night time.

I have not written much lately as there has not been much to tell other than we have a wild two year old on our hands. She has already figured out how to manipulate and twist us to get what she wants. She may grow up to be a lawyer or a politician……..Not A Chance!!!

Once Maya is born we are collecting the cord blood for what we hope will never be necessary for Ava but it adds reassurance if there is a match. Duke is going to store the blood as they were the ones that performed the original transplant on Ava. So as you can see we have a great deal on our minds. The plan is to travel to NYC two weeks from today for testing so that we may determine what the next step will be for Ava. We still pray for a miracle that they will find no residual disease but we are prepared to move forward.

Wish us luck and say a prayer for Lisa, Ava and new baby Maya that she may be healthy and happy.
Mark

Tuesday, April 26, 2005 10:18 PM CDT

Losing sleep but have not lost hope!

We decided to pull back the reigns on further treatment until after we could do an additional set of scans and testing. This causes a bit of juggling given the coming of the second munchkin to the home. We are still hopeful that perhaps Ava’s marrow will be all clear this time but anticipate the need to jump back on the chemo wagon. This coupled with the antibody treatments will put the monster back in the closet and hopefully lock away the key. We do not have definitive dates as to when we will be headed back to NY, this will depend on baby Maya (a.k.a. Luna, if you ask Ava the name of her soon to be new baby sis).

We have received so many great emails from friends and family encouraging our decision and keeping our spirits up. We have also heard from many parents that have walked in similar footprints in the sand and we thank all of you for your help and support. For me the challenge lies not with the decision but the fact that we do not have a clear path to follow, especially when we are given several options and told there is not a right or wrong choice. But the fact is there is a right choice the will give Ava the greatest chance for survival without causing additional pain beyond what is necessary. The problem is we do not have the crystal ball necessary to see the future and once we make a decision, we can not go back. Thus we tend to live for the day and celebrate life hoping for a long celebration.

I will let everyone know when we have made a definitive decision but for now the plan is to travel to NY and see where Ava is with the NB and then we will decide.

Thank you again for all the prayers, please offer up as well to the many children we have come to know via our quest as they travel a similar path. One day soon I hope we can find the silver bullet!

Mark

Thursday, April 14, 2005 10:13 PM CDT

Lost in Translation

We finally have the results back from Ava’s additional testing and it appears that the first set of tests were correct regarding the bone marrow. Ava is still testing positive for 10/1,000,000 which is very small, but the cancer can be detected. We have several courses of action we are contemplating with no one decisive direction to follow. 1. We can sit and watch Ava while testing on a regular basis to see if her own body can clear the cancer coupled with the Accutane. 2. We can start the antibodies treatment at Sloan knowing Ava will develop Human Antimouse Antibodies or HAMA as we have come to know the term. The Antibody treatment is thought to attack Neuroblastoma Cells, thus having positive effects on overall survival, but once the patient develops HAMA there is not point in continuing the treatment. 3. The last option is the most aggressive, 1-2 Rounds of high dose chemo followed by as many Antibody treatments Ava can receive before developing HAMA, possibly 4-5 treatments from what Dr Kushner stated. The chemo would have the negative after effects we have come to know from Ava’s previous 8 rounds last year. Thus we are at a fork in the road and we are not sure what direction to take. I sit awake late at night thinking and wondering what the best road to follow is for Ava. Often I find my self dumbfounded by the fact that the nightmare continues, and Ava can not just be a normal little girl. Part of me does not want to put her through Hell again with more chemo and treatment but another part knows it may be the only way I ever get to walk her down the aisle on her wedding day. Hell right now I would settle for kindergarten graduation!

This has been one of the toughest months since Ava was diagnosed, prior to this phase of treatment we really did not have any option but to go hard and fast. Now the Doctors are giving us options which we have no idea which one is the best. I pray we choose the right path and soon the battle will be one.

Bless all of you for checking in on our little Ava.
Mark

Sunday, April 3, 2005 9:44 PM CDT

Still Waiting For Final Results?

Sorry for the tardy update, but we have been waiting on the final results for over a week now. Sometimes I think that is the worst part of the whole process, but unfortunately not all the results are in. We did speak with Dr Kushner, our doctor at Sloan on Thursday and his comments were somewhat puzzling. Apparently all the scans are coming back negative as they did in January, although we do not have the bone marrow results. Given Ava’s original prognosis he would recommend additional treatment using the antibodies we had originally tried to enroll Ava on. They have an antibody study at Sloan but Ava’s immune system is so strong now that she would most likely develop HAMA very quickly. So, we are going to speak with our Doctor here about getting some questions answered about participating on the study that we were originally rejected on. Sounds confusing and it is but we just do not have the answers we need just yet to make any definitive decisions. We should have the final results back from the special bone marrow test this Monday or Tuesday and from there I am not sure where we go. We know that we do not want to let our guard down now especially since we know that there are still traces of NB in Ava’s body.

Thank you everyone for all the prayers and special gifts for Ava. We are blessed to have such support behind us as we face our daily demons. Ava is such a spirit sometimes I think she is carrying us instead of the other way around. We have wonderful families and some great friends that have been such a huge saving grace. We have made some tremendous new friends as well and we will continue to pray for the special families that walk in the burning forest everyday.

Thank you and God Bless!
Mark, Lisa, Ava and M_____ (Can you guess? Only 6 weeks!)

Wednesday, March 23, 2005 6:36 AM CST

Day two of testing

Monday was a breeze as we only met with the Doctor and toured the facility. Ava was impressed with all the neat play items to keep her busy. We also managed to make the trek to FAO Schwarz Toy store later that day. That was the highlight of the day to be sure. Yesterday Ava had the first day of testing which involved an MRI and bone marrow aspirations. We should know the results from the MRI later today but will have nothing on the marrow until next week sometime. We have mixed emotions after meeting Dr Kushner on Monday and Dr Kramer yesterday. Seems everyone has a slightly different view of how they would treat and or how Ava should have been treated which can leave a person scratching their head at times. We are not going to make any assumptions until the entire test results are in and we know exactly what we are dealing with. Ava has her CT scan today and tomorrow is the MIBG scan. We have to figure out how to get her to drink a whole bunch of contrast today before her scan which I am sure will turn out to be a wrestling match. Mind you Ava has gained considerable strength over the past months and can be quite a challenge.

There are so many sick kidos at the hospital it brings back a wave of emotion to see the pain and suffering in their eyes and on their little faces. I am amazed at how far Ava has traveled yet it seems as if we have only taken our first step in a long journey.

God bless, please pray for all the sick kidos as well as Ava.
Mark

Monday, March 21, 2005 6:43 AM CST

NYC bound

We made it to NY without many glitches, albeit I do not think Ava was all that excited about flying, so it was a good thing we had a direct flight. We made it to the Ronald McDonald house only to find that there was no room at the end so we had to wait until a couple of families checked out. We finally got in after a 4 hour delay but settled into place. We met Cam’s mom Michelle as we left to go find some golden arches for Ava’s staple of Chicken nuggets, and we talked about the coming weeks activities. Her son Cam is doing well but starts his treatment this week and can use some extra prayers.

We had a tough night of trying to sleep in twin beds as Ava and Lisa were sharing one, but eventually we all rested well.

Today is the day we meet all the Doctors and learn more about Sloan-Kettering than I had hoped we would. Hopefully we are in the right place at the right time.
Thanks for all the prayers and positive wishes, I will update more this week as things progress. Pray they find nothing and that Ava’s body is beating this monster.

God Bless,
Mark

Tuesday, March 15, 2005 9:28 PM CST

Still shaking off the last blow

We are still shaking off the blow from the call last week regarding Ava’s bone marrow tests. I had truly believed that we would have good results and we could stay focused on the other tasks at hand. Unfortunately we now have other plans and it appears the battle will rage on. Dr Gold has been on the horn since last week trying to find out what the next step should be and where we need to go for possible treatment. In so doing we have discovered mixed feelings about what to do with the trace elements in Ava’s marrow. Several doctors have stated that they would not treat at this juncture and they would wait and see were things fall. While we tend to lean toward the more proactive stance thinking we should attack while the enemies’ numbers are weak. So we have contacted Sloan Kettering in NYC and plan to have the full series of tests done on Ava next week to determine what we are truly dealing with and or if she will need additional treatment. We will be in NYC from Sunday until Friday, and we will be staying at the Ronald McDonald house. This will be a true God send as the flights alone were enough to take all three of us to Hawaii and back given the short notice. From what we have been told by other parents about RMH is that it is very nice and there a tons of kid activities so Ava should have a good time despite the daily turmoil.

We appreciate all the kind words of encouragement this past week and hope all of you can offer a few special prayers up next week for Ava. She has been such a true candle in the darkness and we want to see her light continue to shine bright. I will do my best to post an update on Friday the 25th with her results if we have them and or first thing on Saturday. Please remember to offer prayers for all the other children who like Ava have to get up each day and fight for life!!

God Bless,
Mark, Lisa, AVA and lil sis

Wednesday, March 9, 2005 10:12 PM CST

OH GOD!

Please tell me this is another bad dream!!!

Bone marrow shows trace elements of Neuroblastoma…….Ava has relapsed!

Please say a special prayer, Please!
Mark

Sunday, February 20, 2005 3:11 PM CST

Update Please!

Funny how the regular events of life can pull you in all directions! We have been on the go since my last update and Ava has been running full steam ahead. The scans went well although we do not have the final results on Ava's bone marrow which is being evaluated in California. Hopefully we will have some results next week if not sooner, it normally takes 3 weeks. The two days of scans went well and although there were a couple of bumps along the way, but things went fairly smoothly. The nurse that started Ava's IV on the first day was AWESOME!!! In fact this was one of the first times in almost a year we got it on the first attempt. What a relief that was to all of us! I am going to post some new pictures later this week in our more pictures section for all those interested, just need to find the right selection that catches the little grimlin!

Linda is doing ok and seems to be handling her treatment fairly well although she has had some major discomfort with her throat were all of the radiation is being done. Linda can sure use your prayes and we appreciate all the kind words of encouragement for both Ava and Linda.

I would also like to offer prayers to two of the families that lost their battle with the monster. Kyle and Ryan where both on the Duke transplant floor when Ava was being treated and both passed away last month. We grew to know the families and followed ther victories and defeats. Our hearts and prayers go out to both.

Thank you for stopping by and offering your prayers for our cause.
God Bless,
Mark, Lisa, Ava and Baby sis______?

Sunday, February 20, 2005 3:11 PM CST

Tuesday, February 1, 2005 10:12 PM CST

A year has come and gone!

Hard to believe a year has come and gone since Ava started her fight. I sat in front of the computer looking at photos of Ava and started to write an update but was lost in the shower of thoughts and emotions. Seemed fitting the day was filled with rain showers and a new cold front moving in from the north. Now we are 1 month into treatment of Linda, Ava’s grandma, and I wonder what lies ahead. The diagnosis is similar to where Ava was a year ago and the waters just as murky. All we can do is climb back in the boat and set sail on this new journey to see where it takes us. On one hand, we have Ava hitting her prime for the first time in over a year while Linda straps on the Armor for the next war. We are feeding off Ava’s energy and using her as the torch to lead the way, hoping and praying she can lead Linda down the safe path. Mean while Ava has her own set of scans coming up next week and we pray for her continued expulsion of the monster as this is a critical set of scans and tests.

Thank you for all your thoughts and prayers I will update next week regarding Ava’s scans.

God Bless,
Mark, Lisa, Ava and baby Sis;)

Sunday, January 9, 2005 10:25 PM CST

Happy New Year?!?!?

Tough year, we were and are hoping for better results in 2005. It has been one year since our roller coast with Ava started. As I look back at the pictures from the day, her black eye appeared it brings a tear to know what she has had to endure. Last night I sat and stared at her while she slept asking the Lord to let her live a normal life going forward. Well as normal as one can live knowing you have to go to have blood work done on a regular basis and scans done every 2-3 months, but normal non the less. To look at her now you would think she is as normal as the kid next door, full of life and spirit and going through her terrible twos. We feel blessed to have the moments we do and cherish them all big and small. We are grateful to have come so far and now we ask for prayers and support to flow again.

I have not updated since the 28th due to the whirlwind of activity caused by the testing done on Ava’s Grandma Linda, who is Lisa’s mom. Unfortunately, it was like a bad dream echoing in our heads as all the tests came back positive for Lung Cancer. It appears to be very serious stage III or IV, so we are looking into other institutions to get the optimum treatment available. I could not help but think that we have fought with everything we have to make it to this point and now we are being kicked back in the dirt! Many thoughts go through my head that I will not mention but surely, this is not how life is suppose to unravel just when you think you have made huge strides to win the war. This has hit Lisa the hardest and her pregnancy has not made the emotional impact and hormonal changes easy to endure. Nevertheless, Lisa and I have taken the stance that we are going to help in any way shape or form, to help Linda Beat the New Monster. I must say Ava is so smart she knows that Nana is sick and will give Linda love to make her fell better. She is an inspiration to behold and we hope she can be the guiding light to carry us all on this journey. Seems like a big task for a 22 month old, but she has proven she can weather a storm.

So we are asking for all of you that have given so much for Ava over the past year to please offer prayer for Nana Linda as well as she heads into the unknown.

God Bless, thank you for your prayers and support.
Mark, Lisa, Ava, and lil Sis?

Thursday, December 30, 2004 3:23 PM CST

MRI Scans Clean Still Need Prayers

Ava’s scans last week looked good and all appeared to be clear!!! That means our next set of scans will not be until sometime in mid February. We were elated to say the least and breathed a big sigh of relief as we prepared for what was to be a glorious Christmas. Ava also had her eyes tested and they found that she would have to wear glasses to correct the vision problems she is having with her left eye, which was associated with one of the tumor locations. As you can imagine we are not sure how well Ava will adapt to wearing glasses as she tends to through a fit every time we try to put a hat on her head. Therefore, we have a challenge to say the least, but like wearing her mask when we left the transplant floor we hope we can make headway. Perhaps we could solicit the help of Jared from our 5200 days, Ava always had an eye for him and in fact, she seems to have taken quite a liking to boys in general. As you might imagine this is going to create quite a conflict because she will not be allowed to date until she is at least 30!)

Our Florida trip before Christmas was enjoyable but far to short. Seemed we could never find a hot spot so that Ava could take her first dip in the pool. Luckily, we found an indoor pool on the trip back home and Ava was able to practice her backstroke or was it a belly flop? Regardless, just being able to see her act like a normal kido was a blessing in itself. I can hardly believe it has been nearly a year since we started the fight.

We also found out what our newest addition will be last week. Lisa had an ultrasound and they seemed fairly confident that we are having a little …………..GIRL! We could not be happier and I know Ava is going to be the best big Sis and take care of the little one. The tough part will be the name since Maximus is out, I am sure we can come up with something that fits.

All the good news we had was bitter sweet to say the least. Lisa’s mom went in for testing on Monday for some pain she was having in her neck. The Doctors did a series of scans and asked the family to come in for a patient counsel. It appears there are areas lighting up in the lungs and the lymph nodes. We are in shock to say the least and will hope to know more about what we are dealing with later this week or next. You all have been supportive of our fight with Ava and we are very appreciative. We are asking your prayers to continue for Ava and to include Linda in your thoughts as well. We did not plan on strapping on our fighting gear again but we are prepared to do what ever it takes to make things right.

God Bless and Happy New Year!!
Mark

Sunday, December 19, 2004 11:03 PM CST

Scans and testing week!!

Ava has scans tomorrow and other tests scheduled for Tuesday so we are praying all goes well. I will give a better update on Wednesday after we have the results and fill you all in on our whirlwind tour through Florida last week.

Thank you for the prayers and continued support, Ava is doing GREEAATT!!

Mark, Lisa, Ava and (we are thinking of good names for the???, any ideas?)

Wednesday, December 1, 2004 9:49 AM CST

No more line!!!

Surgery went well on Monday and the line was removed quick and painless. We are not sure Ava realizes the significance of the change yet but I am sure she will once we remove the final bandage today. We may fill the tub up to the top to let her practice her backstroke!!!! I will update more later this week but wanted everyone to know how well Ava is doing and that everything went well.

Thank you for all the prayers and support over the past 11 months, please remember Ava and all the other Warriors still battling in your prayers.

Have a wonderful Holiday Season and God bless,
Mark, Lisa, Ava and ______?

Thursday, November 18, 2004 11:38 PM CST

All Clear!!!!

Not much else needs to be said besides that…………but I will anyway. The bone scan and the MIBG both looked good and Dr Gold was happy with all the results. We can sit back and enjoy the sunshine and think about the next step which is Ava coming home tomorrow, hopefully and getting her central line removed. The tentative plan now is for discharge on Friday and we will complete her cycle of antibiotics over the next 7 days. That means Ava can take a bath like a regular kid with out worrying about how wet her dressing is getting and we can fill the tub up past ankle level. She can also SWIM for the first time in her 20 months; this of course will be the first phase of creating the next pro surfer girl to score a perfect 10 at Pipeline. The plan is to head to Disney right before Christmas and stay at a hotel with an indoor pool so that we can swim, swim, swim. I hope she will be as excited as I will be to get wet. Probably the most important part is that we will hopefully not have anymore infections that cause us to be hospitalized.

Thank you for all the thoughts and prayers for Ava and all the Kidos!
Mark

Tuesday, November 16, 2004 9:15 AM CST

Let the Scans Begin!

Today we start the scan process leading off with the Bone scan. Ava will have her injection at 11 am and then the scan will take place shortly after that. Later today we have the injection for her MIBG {meta-iodo-benzyl-guanidine (MIBG)} scan tomorrow and Thursday if necessary.

I also neglected to update the fact that we are currently in the Hospital at UNC for a bacteria infection in her blood. Ava ran a fever Friday early and we were admitted in to the Hospital at UNC on Friday night. This means we are going to be here for the remainder of the week or at least until her counts recover and the infection is under control.

Pray for clean scans today and tomorrow, I will update when we have the results.

Bless,
Mark, Lisa, Ava & ????

Thursday, November 11, 2004 10:25 PM CST

Testing phase I Complete

Yesterday we spent the day at UNC where Ava had here GFR test for her kidney function and a hearing test to measure her current levels. We were also scheduled for an eye exam to determine what might be the cause of Ava’s excessive lazy left eye, unfortunately we did not make the eye appointment as the scheduling was tight. The GFR test takes about 3 hours and involves a series of blood draws done at exact times. First Ava in injected with a radioactive material that the body works to remove from the system via the kidneys. So basically the test tells you how well the kidneys are able to remove waste or pollutants from the system. The results came back good but we still do not know if the numbers were lower than the pre and post transplant tests.

The hearing tests was done after we completed the GFR and I held Ava as they performed more testing to determine how much hearing loss she is suffering from. The hearing loss is caused by some to the compounds Ava was giving over the past 11 months of chemos and treatments. Many of the Neuroblastoma kiddos eventually have to wear some type of hearing device to overcome the loss. Ava got a bit tired during the test and we were only able to do her right ear with the full portion of the test, while we will have to go back to see the outcome of her left ear. As expected the results we did see showed significant weakening of her high pitch hearing, yet the lower levels are still acceptable enough to not intervene. They will continue to monitor her as our hope now is to develop her speak characteristics as quickly as possible. One thing for sure she has the word NO down pat.

Next week we start full scans on Tuesday with a bone scan and follow with the MIBG scan on Wed and Thurs if necessary. I will be traveling on Wednesday and Thursday so I may not update until Friday with the results. We need your prayers that all scans will come back clear and we can continue to enjoy the sweetness we call AVA Dew.

God Bless and thank you for all your thoughts and prayers.
Mark, Lisa and AVA

Thursday, November 4, 2004 11:21 PM CST

Long over due

I am sure you are all wondering what has been happening with Ava since last update!? Answer…trying to keep up with our little energizer bunny! We have been soaking up every minute of Ava’s sunshine and taking it all in. She has really started to develop her own personality and expand her vocabulary as her personality bubbles out. I think they call this the terrible twos but we are a few months early.

Last weekend we had the blessing of being part of a great event sponsored by the group at Camden Properties, they held their annual fall festival to benefit Ava’s Cancer fund. We spent the weekend downtown Charlotte being pampered and relaxing for once without the worry of fevers or testing. We actually felt like normal people spending some time away from home getting some needed R&R. Ava was so over stimulated that she had trouble sleeping every night and could hardly wait to get down to the restaurant for the breakfast buffet. For everything we are very grateful and can not begin to tell everyone how much we appreciate them. Thank You! All in all things have been going quite well and we are planning more events that will keep the smile from ear to ear on Ava’s face.

Next week we start the testing process again and will be on pins and needles once again as we wait for results.

Keep Ava in your prayers and please remember all the other kidos fighting everyday.

Mark. Lisa and Ava

Sunday, October 24, 2004 10:44 PM CDT

Great weekend!

We have been enjoying our time at home more than I can begin to tell all of you. Amazing how our life has changed yet because of it we appreciate the smallest things as if they were monumental moments in time. And they are because we now know that we do not get to hit the replay button at the end of the day and try to change the way we acted or reacted. All my free time and attention now goes to making Ava feel like she is the last person on earth and show here how truly special she is to me and so many people that have taken the time to open their arms and hearts.

Thank you everyone for everything you have done and all the prayers that have been offered in Ava’s name.

We Love You All!
Mark Lisa and Amazing Ava

Sunday, October 17, 2004 0:44 AM CDT

Finally we have results!

I must say that the three weeks leading up until Friday was nerve racking but as they say the wait was well worth it. The report from LA said the bone marrow was all clear. This was the final piece of the puzzle and completed the full round of all the tests performed over 3 weeks ago. We are elated to say the least and may be able to sleep easy for a few weeks until we go through the process again. Hopefully we will not have to wait as long for the entire test to come back next time. I do not think we will have a bone marrow samples taken every time we test so that may expedite the results as we move forward.

Our celebration was somewhat bittersweet as we were told one of the other families we follow found out their little girl’s NB has relapsed. Sydney Dungan is her name and her father was the founder of “Lunch for Life” which I have spoken about in several of my posts. I met Mark Dungan, Sydney’s dad at the CNCF conference in Chicago this past summer and we speak occasionally on the phone as well. We have followed Sydney’s victories since the first month we were diagnosed and read her Dad’s Diary everyday which gave us hope and encouragement. We watched as she responded very well to treatment and was declared NED before her transplant in much the same manner Ava has responded. She also received the Antibodies treatment that we had hoped Ava could participate on but were denied. My point is that Neuroblastoma is a MONSTER that is relentless and never sleeps and until we find a cure I will never sleep easy. Our plan is to dedicate as much free time as we can possibly donate to the cause and raise our Voice to Big Brother and anyone that will listen to our plea for help. We have a series of fund raisers in the process leading off with the first this weekend that is in Ava’s honor.

Music 4 Life is a slogan that was coined by our friends Chad and Kate when they put on the benefit for Ava in March at the House of Blues in Myrtle Beach. We are still in awe of the helping hand that strangers have offered to Ava and us as we travel this path. Music 4 Life at the Liberty Showcase will be held this weekend in Liberty, NC. The show is from 1-9 on Sunday the 17th of Oct. with 5 bands and other entertainment leading the day’s activities. The bands include the Catalinas, Midnight Run, Fiddlers Cove, The Sand Band and Southwest Express also appearing will be The Big Bopper and DJ “The Fireman”. A great time should be had by all and proceeds will benefit the Ava McPartland Cancer fund as well as the Children’s Neuroblastoma Cancer Foundation and Lunch for Life.

Please keep the prayers coming and please remember Sydney and all the other children suffering like Ava as well.

Thank you and God Bless,
Mark, Lisa and Ava

Monday, October 11, 2004 6:11 AM CDT

Nothing new to report!

This can be construed as either good or bad but the way Ava has been acting, I would say it is good. We actually had a Doctors visit last Thursday and everything looked very good. Ava’s counts have dropped a little so we will continue to monitor them. She has been taking her medicine like a champ and she does not even complain one bit when I say it is time for your pills. We finished the fist round of Cis-retinoic acid on Sunday and will have a 14 day break until we start the cycle again. For now we are waiting on the results from LA on bone marrow and from the additional immune system tests that were done last week. I will post once I have some good news to proclaim. Until then please keep the prayers coming and please remember all the other children suffering like Ava as well.

Thank you and God Bless,
Mark, Lisa and Ava

Saturday, October 2, 2004 10:42 PM CDT

Still Waiting

Sorry for the delay this week in reporting but we have not had anything new to report. We emailed Dr Gold on Friday to see if he had heard from the West coast and unfortunately no news. We hope to have some results by Wed if not sooner, so I will update at that time.

As for Ava, she has been on a tear!! Seems like her legs are getting stronger everyday and she can hit overdrive at times causing us to stay on our toes. Basically the routine is outside during the day with Bam Bam and a quick trip to the beach in the evening. Needless to say we can live with that, we pray this routine will continue to be the norm and the past nine months will only be a memory.

Thank you again for all the kind words in the guest book on the site, we appreciate them tremendously. Keep the prayers coming we need all we can get and hope that we can breathe some relief soon. Also remember all the other sick children as well in your prayers especially all our friends at UNC and Duke. Also please take the time to visit the “Lunch For Life” site and join the movement.

Thank you and God Bless,
Mark, Lisa and Ava

Sunday, September 26, 2004 9:50 PM CDT

Waiting for results?!

We finished scans and testing last Thursday and headed home for what we hope will be the beginning of many days at home. I must say that the process of going through all the scans can be more taxing than preparing for surgery or Chemo. We are so anxious to know the results we drive ourselves crazy waiting for the phone to ring with Dr. Gold telling us the news. Luckily Dr G does not make us wait long and pressing the lab rats for quick response, albeit we will not know the final results for the bone marrow aspirations until sometime later this week or the first of next. That being said the preliminary results from the scans and the bone marrow tests done at UNC were all good and showed no new evidence of disease. Lisa and I were crawling the walls waiting on the results, in fact I may have only slept a few hours each night leading up to Friday due to the nerves. Of course this may have also been due to the fact that Ava prefers to put her cold feet on me in the middle of the night, apparently I give off a good amount of heat.

So the news is GOOD thus far and for now we are looking forward to spending some time at home and watching Ava’s hair grow back. As I stated earlier we are still waiting on the final results from L.A. but we are hopeful all will remain good. From here we will continue to monitor Ava on a regular schedule with scans and testing every 8 weeks. The final portion of Ava’s treatment will be six months of Isotretinoin a.k.a. Retina A. She will cycle on 14 days and off 14 days for 6 cycles. Sounds simple enough but giving Ava oral meds is a challenge to say the least and coupled with the fact that this is vital stuff adds to the challenge. After that we will essentially go into the watch and wait mode unless a cure is found for the monster. Now more than ever we must turn to prayer to give Ava’s body the strength and power to destroy whatever NB cells might remain and keep any new cells from arising. I will not give out the numbers here but we have an uphill battle to win the fight. As we have been told we have won many battles and now we must push to win war, although the war will rage on for the next 40 years or more.

Thank you everyone for all the prayers and support you have given us to date, we appreciate them more than we can say.

God Bless,
Mark, Lisa and Amazing Ava!

Tuesday, September 21, 2004 10:36 PM CDT

Scan Week

Today was the second day of testing and scans to determine what Ava’s cancer has done. We finished up radiation last Wednesday as scheduled and had no problems over the weekend. Monday Ava had a series of CT scans, MRI scans as well as a Bone scan. All of the scans required her to be sedated for nearly 5 hours, which always drives us nuts with worry. Once Ava emerged from her slumber she seemed like her old self and ready to roll. We do not have the final word on the results as of yet but the preliminary look appears good. Today Ava had an Echo Cardiograph and was injected with the dye used in the MIBG scan we will receive in the morning. She will also have her bone marrow aspirated to complete the testing that will be performed this round. We should have a final tally by Friday with conclusive results by the end of next week.

Thank you again for all the kind words and posts on the site, we appreciate them tremendously. Keep the prayers flowing we need all we can get this week and hope that we can breathe some relief, also remember all the other sick children as well in your prayers.

God Bless and Thank you,
Mark, Lisa and Ava

Tuesday, September 14, 2004 11:57 PM CDT

Day 11 Radiation

One more day of treatment and then we sit on the sidelines until scans next week. We have been so busy that I have forgotten about all of those following Ava’s progress and for that I apologize. As for Ava she has handled the past week very well and does not seem to be feeling all that bad for what she is going through. By the time most of you read this Ava will have completed her last treatment which is tomorrow, we will have a short meeting with the Radiation Oncologist and then home to rest for 5 days. She has been such a joy to behold over this portion of the treatment, her personality is bubbling over at times. So we soak up her sunshine and forget about the rainy days and pray that they will continue. As I mentioned next week we have scans as well as bone marrow aspirations to determine Ava’s current status (PRAY FOR CLEAN SCANS)!!!

We had a disappointment last week when we discovered that Ava would not be eligible for any current phase III clinical trials due to a clerical error on our Doctors part. It seems that we should have been signed up on a secondary study that coincides with the protocol we have been following. This came as quite a shock and perhaps disappointment is somewhat of an understatement. Our plan was to leave the process in God’s hands to determine whether or not we participated but it seems that we will now not have that chance. So after we have scans next week and we have the results which should remain clear, then we begin the next phase of Ava’s journey to beat the monster and live a normal life. Each day will be one of challenge and every runny nose or ouchy will raise some concern that something great lurks but we will begin to live a normal life again. I am not sure what we will do with all the extra time we will have perhaps a second child will be in order. As for Ava what will she do with all her extra time, hopefully she will learn what it means to be a kid and play with other children even if they have not washed their hands.

To close things out I wanted to thank you all for visiting the Lunch For Life site to learn more about how you can help. I see that some of you even managed a day or two with out lunch to help the cause. If any of you have a rich old uncle that is looking for a good place to make a year end donation to a worthy charity I hope you will remember LFL and put a bug in the ear. There are so many ways that you can help that I hope you will find the time to send a note or email to someone that will eventually take notice, if anything I have saved the copies of the response I have sent to the President of this country and his opponent as a point of reference. I want to be able to say that I made a difference and that My Voice was heard!

Thank you and God bless,
Mark Lisa and Ava

Tuesday, September 7, 2004 10:32 PM CDT

Round 6 of Radiation day 59 post transplant

The treatment was quick today and Ava recovered from her sedation spunky as usual. We are half way done and looking forward to next Wed when we will be over this part of the protocol. Ava did not eat much today but this past weekend she did quite well so we were not totally alarmed. Sometimes I think the excitement of being at Grandpa and Grandma’s house overwhelms here. As long as she is happy and having fun we really do not mind when or where she eats. We also met with Doctor Gold today to sign the consent forms regarding the future treatment that Ava may participate in over the next 6 months. This is the clinical trial I had discussed in earlier postings or more appropriately the extension of the clinical trial we have been following. I will discuss more on the subject when it is relevant and we are over this hurdle.

Ava will have a full set of scans the week of the 20th to monitor the state of Ava’s previous cancer sites and to reassure that there is no new disease. This will be one of the most nerve racking times we face since we have come so far with the treatment, but I guess we will always have similar unease as we get scans done over the next 40 years or more. Hell I am not even sure I will live that long but my life will be complete and have had purpose, if I know that Ava has had a fruitful life until that time.

We greatly appreciate all the words of encouragement posted in our guest book, as I have said before they give us lift. Keep the prayers flowing for all the other sick children battling everyday like Ava.
Mark, Lisa and Ava

Last special note: Did you give up a “LUNCH FOR LIFE” Yet?

Saturday, September 4, 2004 11:37 PM CDT

5 Rounds down 7 to go
Ava handled treatment this week quite well, in fact minus the sleepiness and loss of appetite, I think she did and excellent job. Her appetite has us concerned but we are still on the TPN and the Doctors told us this was to be expected. We are home in Wilmington for the weekend and enjoying the comforts and the BEACH. Amazing how something so simple can give a child such a boost when she needs it, kind of like the excitement I use to get when we would pass by the roadside corn fields in Iowa. Not really but thought I would through that in there for all the Midwesterners that read the site. On the other had I must say that Ava gets one heck of a charge when we see the cows near Lisa’s parents, she can moo with the best of them. Bottom line is that the beach has become our oasis or escape and she loves it and if it makes Ava happy that is pretty much what we do anymore. May have some trouble down the road, as of now the tail seems to be wagging the dog.

Special prayer request for the family of Folden Lee who passed away last week. Folden was one of the other kidos on the 5200 floor when Ava was there. I have mentioned Folden in my other journal entries and hope and pray his parents can find peace. Lisa and I were extremely upset upon hearing the news; he had fought so hard to beat the Monster until he earned his wings. The reality of the world we are now a part of is nerve racking and emotionally draining at times. Perhaps one of the reasons I get so frustrated, is to hear about good research falling short due to lack of funding or commitment by big Pharma. This is one of the reasons we plan to do what ever is possible to bring more attention to the problem that surrounds many of the childhood diseases that are taking our children. Please visit the links to the “Lunch for Life” site that I have provided above and if you have the means to get involved in any way possible please do so. I plan to give up one lunch per week for the next 52 weeks and put that money toward Funding a Cure. I have also sent letters and emails to the top Government officials and the next future Pres. All of this can be done from the LFL site.

Thank you again for all the kind words and posts on the site, we appreciate them greatly. Keep the prayers flowing for all the other sick children as well as Ava.

Mark, Lisa and Ava

Monday, August 30, 2004 10:32 PM CDT

Round 1 radiation and Day 53 PT

Minus the heavy rain that Tropical Storm Gaston was dropping on us the day was almost uneventful. Of course we were running late which is always a good a thing when the rain is coming down in buckets, but Ava did not seem to mind. I actually stayed back at Lisa’s parents while Lisa took Ava to the treatment with her mom. Not always sure this is the best thing to do since I am more nervous sitting home than if I actually made the trip, not to mention I know how well Lisa drives in the rain. The procedure was delayed by an hour this morning but Ava did not seem to mind since Nanna was there. The whole treatment takes less than ten minutes but Anesthesia and recovery can add hours to the process. Luckily Ava recovers quickly and normally is ready to go as soon as she wakes up. I must say the kid is amazing, she bounces back quickly and does not seem to slow down. In fact she has already made Pappa Larry mutter the words “I need a vacation” once we leave due to the amount of energy she has, heck we have only been her for 2 days. This was only the first day of twelve sessions so we can expect her condition to worsen slightly as the treatments continue, but for now she is robust and ready.

We would like to thank all of you for posting such kind words of inspiration in our guest book, as I have said before it lifts our hearts to read your postings. There are so many people that have done so many great things for Ava and both of us that we can not thank you all enough. Some are family and friends and many are those that have only come to know Ava through the grapevine of faith. Ava has been blessed and we have been blessed equally as we have traveled this road. Please remember to include all the other warriors like Ava in your prayers as well, Cam, Jared, Janvi, Folden, Jordan, Kyle, Sydney, Leigha, Wyatt, Elijah and many more that need strength as well as their families that perhaps suffer the greatest during this fight.

Thank you and God Bless!
Mark, Lisa and Ava

Wednesday, August 25, 2004 11:23 PM CDT

The Plan

The planning sessions were short and dare I say sweet but the time spent under and in recovery was in fact minimal. We finally had the opportunity to spend some quality time with Dr. Gold to discuss where we are now and what lies ahead for Ava. He is always very optimistic and extremely supportive of our thoughts and concerns. I do not think we have met a finer Doctor when Bedside is concerned. We are still somewhat concerned regarding the radiation treatment that starts on Monday but we also no that the treatments are necessary to battle the beast. The side effects are many and we worry most about the radiation of the spine and possible growth differences in Ava’s future so we hope the effects will be minimal. I guess Ava will not be one of those tall supermodels since the effects will most surely decrease her overall height in the long run. Of course Dr Gold’s comment was that her genetic make would not allow her to be much taller than him (5’6) since both Mom and Dad were no bean stalks.
So the plan is to start the radiation treatments on Monday the 30th and they will follow a sequence of 5 days on 2 days off until we complete all 12 rounds. In other words we will be here on the weekdays and home on the weekends baring any difficulties.

During this time we will also be examining the Clinical Trial we hope to enroll Ava on for continued treatment. That is all for now regarding Ava’s treatment, as I have said before she is doing Great now and we hope the radiation will not knock her down in the dirt.

Please continue with the prayers for Ava and all the other warriors fighting everyday, there are so many sick kids out there that it would boggle your mind. If you would like more information regarding Ava’s disease and what can be done to help find a cure, I suggest a visit to the Lunch for Life site here www.lunchforlife.org I met Mark and his family at the CNCF conference in July his daughter also has Neuroblastoma and he is putting together a strong campaign to “Let us be heard”!

God Bless and Live Strong,
Mark

Monday, August 23, 2004 3:21 PM CDT

Radiation Planning

Today was the first day of planning for the radiation treatment at UNC. Ava was calm and went out like a light once they gave her the meds. She was only out for about and hour before she was bright eyed and ready to roll. The counts came back on her blood work and they decided to keep her here while they ordered blood to transfuse her today. We will back tomorrow for more of the same planning and begin the real treatment next Monday. The plan calls for 12 rounds to the primary tumor bed with no other areas being treated. We should know better come this Thursday on exactly how the treatment will go.

As for Ava she is a HAND FULL!! I can not imagine how much energy this kid would have under normal circumstances. My mom seems to think this is the coming around goes around part. Seems one of her sons had a similar attitude at times in his 2s.

I will try to update more later on but right now we are on cruise control until we get into treatment next week.

Keep the prayers coming for Ava and all the other Warriors fighting the good Fight.

God bless and thank you!
Mark, Lisa and Ava

Wednesday, August 18, 2004 11:04 PM CDT

Decision Day

Day 40 PT

Some of you that follow the progress Ava has made have asked me the meaning of the Day # at the top of the new entry. Basically for Ava Day 100 Post Transplant means she is allowed to go out in public although not heavily crowded but out with out a mask on provided her immune system checks out OK. So we count the days leading up to that point as this will release both Lisa and Ava to go about their daily business. Since Ava is not allowed to go to public places, that leaves only one parent that can perform normal everyday tasks such going to the grocery store or anything that might involve similar activity. As you may have guessed that puts a lid on most of the daily tasks most of you reading this sight take for granted. Simple freedoms most of us do not think about as we go about our busy lives. I am sure most of the parents that we have made friends with since we walked into this new world are nodding their heads. I would have never thought that being able to go to Walmart or the Mall would be considered a blessing but things have changed and now we all wait until we can enjoy those simple pleasures again. I think for me the day that I can take Ava out in the ocean with me on my surf board will be the day of rebirth for us. Not worrying about her dressing or central line and if it got wet or….do we need to change the caps…..does it look like there is air getting under the dressing……are you sure you washed your hands really good….are these fries hot because they have to be fresh and hot….. At risk of sounding crazy or neurotic I will stop but I think you have the idea.

We met with the Doctors at Duke today and have decided to stay with UNC for the radiation treatment. We took an open mind into the meeting and felt more at ease knowing we would be under Dr Gold’s care. We begin the planning phase next week with the CT/Simulation and then the following week we will begin treatment. The total rounds of treatment will consist of 12 radiation sessions done on the weekdays with the weekends off. So that will put us finishing sometime around the second week of September. During that time we will also find out where we stand with regard to the Clinical trial we are enrolling Ava on for treatment as well.

As for Ava, well she is doing great and her counts have remained strong with her platelets making a nice jump on their own to over 100 for the first time since pre-transplant, WBC was only 3.6 so I think we will continue on the cycle of GCSF every 3 days until she gains a more stable count. All the other counts were good according to the Docs. So there you have it, one battle won and several more to fight but we keep fighting.

Please pray for all of our friends and their families from 5200 that are fighting the war with Ava and if you find the time to visit their websites please leave then a note letting them know you are saying a prayer for them as well. I have listed a few of the sites below of those that have touched our lives.
http://www.caringbridge.org/tx/janvi/
http://www.caringbridge.org/fl/jman/
http://www.caringbridge.org/va/ryansmedley/
http://www.caringbridge.org/fl/kyle/
http://www.caringbridge.org/nc/folden/
http://www.caringbridge.org/ma/leigha/

God Bless and Live Strong!
Mark

Sunday, August 15, 2004 10:30 PM CDT

Day +37 PT

Rainy days are always good days.

Ava braved her first hurricane this week in much the same fashion she has handled the beast she battles daily. She showed no fear and at times I found her comforting Lisa from the heavy wind and rain. When all was said and done we had no damage to the home and minimal tree damage. The rain was the only worry I had and it seems like it has rained for 2 days straight which is ok by us because we spend most of our time indoors regardless. I did manage to go surfing yesterday after the storm passed for about an hour and I learned something very important. Seems 8 months of sleeping in hospitals and eating take out or what ever Ava will not eat, has altered my one time buffness. I guess the combination of cheese doodles, Pringles, popsicles, Ice cream, asst cookies, French fries, frostys, pizza, DQ, McD’s oh and did I mention ice cream….has really changed things. Of course choosing to paddle out for surf after nearly a year in one of the biggest days, only multiplied the effects of my new found tubbiness. Once I did make it out, I found myself doing more talking to the Lord than focusing on the waves thus I managed to score only a couple of rides. Not to worry though, I think I made a connection with the Big Guy and hopefully this to will be just a passing storm.

We met with both Duke and UNC this past week and everything was great. We plan to meet the radiation team at Duke this coming Wed to discuss their plan for possible treatment as well. We want to be sure we are doing what is best for Ava without overlooking something that may provide her a more quality life in the future. We also discussed the possible enrollment on the Clinical trial that coincides with the protocol we are currently tracking and hope to be randomized on the treatment. I will post more about this in the future, for now we are focused on the radiation treatment. Ava’s appetite is starting to pick up although we expect there to be a decrease once we start radiation. So for now we will enjoy the next week with out treatment and keep saying our prayers.

Thank you to all that have signed our guest book and continue to do so each time you visit, both Lisa and I read them daily and it provides great inspiration. Also we want to thank the generous folks at the Moose Lodge in Asheboro, NC area for holding the benefit in Ava’s honor. Please also remember all of our friends and families still fighting the war like Ava, and keep them in your prayers.

God Bless,
Mark

Wednesday, August 11, 2004 10:31 PM CDT

Day + 33 PT

Pizza Beach Bash…sort of like a Barbie on the beach

Short update today although there is much to tell as Ava has been more like her old self than ever. We have gone to the beach everyday after the working whistle blows and tried to savor every moment. Last night a quick call to Dominos on the way to the beach turned it into a little private bash of our own. In fact Ava munched on so much pizza I think Lisa was starting to wonder if there would be enough for her…”From now on we get Ava her own Cheese Pizza” she exclaimed. So the days have been filled with Lisa chasing Ava around the house while I try to catch up with work and the nights are spent chasing Ava around together. Whew this sick kid stuff is rough I can only imagine what things would be like with a healthy Ava. Of course we may not have spoiled her rotten by this time and we would have better control of her emotions but I doubt it.
We are meeting with the Docs at Duke and UNC tomorrow and should have a better idea of what our game plan will be over the next month. This will be the first time our primary Duke Doc has seen Ava in more than 2 weeks and the first time Dr Gold has seen her in over 45 days. I will post this weekend from home her in Wilmington provided we do not get blown away by a hurricane.

Keep all those that are fighting like Ava in your prayers especially our friends from 5200 Duke. Janvi http://www.caringbridge.org/tx/janvi/ and Jared http://www.caringbridge.org/fl/jman/ have had excellent news over the course of the past few weeks and it is good to know their prayers are being answered.

God Bless and keep the prayers flowing,
Mark, Lisa and Amazing Ava

Sunday, August 8, 2004 9:52 PM CDT

Day 30 PT

Soaking up the Sun!

We did not soak up any sun over the last few days due to Ava's sensitivity, but we did visit the beach both Saturday and Sunday. As a friend of mine has told me, the ocean has healing powers and I must admit that it always clears my soul. We spent most of Friday at UNC meeting with the Radiation Docs and we are more confused now than before we went for the consultation. The plan is to start the preliminary work up for treatment on Wednesday the 11th and start radiation the following week provided Ava’s counts remain stable. I must say that Lisa and I have our concerns regarding the treatment. We have several questions that remain and hope we can have them answered this week. Our visit home will be brief but refreshing to say the least. What ever treatment we decide on will involve any where from 10 – 14 sessions under general anesthesia. The procedures are done out patient but we will have to be there every morning at 7 am to be sedated and then treated which means we will be back in Durham for at least another two weeks for treatment. At least Ava will get to see Jared again and hopefully she will remain in good spirits throughout. I will keep you posted as the plan comes together but for now we will be back on the road again in a couple of days.

Thank you for all the prayers and kind post to Ava’s guest book, Lisa and I check the site everyday to see who has paid Ava a visit. We appreciate all the prayers offered up on Ava’s behalf, please remember all our friends from the Duke PBMT that are fighting everyday as well.

God Bless,
Mark

Thursday, August 5, 2004 9:51 PM CDT

Day + 27 Post Transplant

Going Home…Really?..Yeah, going home!

Those were my words of disbelief I asked today when the Doctor told us that we could go home to Wilmington for the weekend and or until we had to report to UNC for radiation treatment. We are meeting with Dr Morris the radiation ocologist tomorrow at UNC to discuss the procedures that they will be performing on Ava in the coming weeks. He has told us that we will not have to radiate the head area based on Ava’s scans before heading into transplant. This is great news due to the side effects that generally occur with radiation treatment. We may also see Dr Gold tomorrow as well so that we can discuss other treatments once we finish the current protocol. We still are not sure what clinical trials that we are eligible for but hope to find out more in the next few weeks.

Ava’s counts have remained steady and the Doctors were very pleased with the progress she has made since we left the hospital, one of the Docs gave her an 11 on a scale of 1-10. I do not have too much else to say tonight but should have more info tomorrow once we get the final treatment roadmap from UNC. I may not update tomorrow night though, as we will be heading straight to the beach once we get home for a quick wiggle of our toes in the sand topped with a trip to the DQ to keep our wiggly waist line!

God bless and keep the prayers flowing for all of our kido friends still fighting the war on 5200 and abroad.

Mark

Monday, August 2, 2004 10:45 PM CDT

Day + 24 Post Transplant

Happy devious!

Those are the best words I can come up with to describe Ava’s behavior over the past two days. She has emerged like a butterfly with some bite from her cocoon. She has a lot of her old smiling, grinning and laughing self back, oh and of course her Bite! At least that is what Lisa will tell you after she takes a nip at her shoulder and will grin afterward. I know what some of you are thinking, Mark must have taught her that!? But the truth is that she learned that gem on her own, heck I don’t even have to provoke her;)

Ava’s counts have been hovering around the bottom limits for some type of transfusion for some time and today she finally needed platelets. The good news is that in clinic they were able to remove one of the drugs that was attached to her central line since we left the hospital. The heparin ball has been a menace since we left but now it is gone a few days early. Now if we can only get her to take the other meds by mouth we can narrow the prep and administering time to 12 - 14 hours per day. I spoke with the Radiation Oncologist at UNC today regarding the next phase of our treatment and we are scheduled to meet with them on Friday to discuss. This has been another area of concern for both Lisa and I as it tends to be the cause of many of the long term side effects. I will keep you posted on what the Docs decide to do.

Another one of Ava’s warrior friends on the 5200 floor was discharged yesterday, her name is Janvi and to say she was a little Angel would not do justice. http://www.caringbridge.org/tx/janvi/

There are many more that we hope and pray will make the same happy departure soon and win their own battles. Keep the prayers flowing!

Mark

Saturday, July 31, 2004 11:04 PM CDT

Day +22 PT

Bon Appetit!!

Today was filled with ups and downs, meaning the day was Up when Ava got her way and Down when she did not. There were more ups than downs mind you but she is starting to show the terrible twos a bit early. I guess that is what we get for giving the girl everything she wants for the past 8 months. On a more serious side, Ava is getting much better on all fronts. Yesterday was the first day she has spoken in nearly a month and today was the first day she has swallowed food as well. So, we feel like her mouth is starting to recover and she will make generous leaps from here toward eating a normal diet. Ava had Lisa and I jumping in the kitchen tonight as she would point at an item in the cupboard, we would tear it open hoping that it would tickle her fancy to eat. Finally after destroying the kitchen, we were able to get some popcorn, Ben & Jerry’s cookie dough ice cream and biscuits in her. Nothing like getting all the major food groups or at least some of my favs, but more importantly she was able to swallow and stomach FOOD!

Funny how little things can get you excited when you wear these shoes.

Our clinic visit today was uneventful and everything looked very good on Ava’s labs so we did not have to stay long, her counts are stable. Hopefully if we can maintain the same over the next week, we might be able to go back to the beach for a short stint before starting radiation. I will keep you posted as the week progresses.
Please keep offering the prayers for the warriors battling the enemy on 5200 as well as all the Kidos fighting for their lives.

God Bless,
Mark

Friday, July 30, 2004 10:55 PM CDT

Day +21

Getting my legs back!

Ava is starting to get mobile again, the past 3 weeks at the hospital with very little walking has slowed her progress around the apartment. This may not necessarily be such a bad thing, as we have to lug several pumps around with her. The good thing is that we are not longer in the small room on the BMT floor and we can go outside if we want to as long as we wear our mask. She has been such a good girl when it comes to wearing her mask, she will even motion for the mask if she knows we are going out. Amazing how one little talk from Mamma can have such an impact, couple that with the fact that her friends Jared and Janvi were always encouraging Ava which made all the difference.

So now we are on auto pilot visiting the clinic everyday and monitoring her counts and chemistry. Lisa has taken the torch on the clinic visits as I have tried to settle back into a normal work flow after playing catch up. There has been a stream of good news coming from our friends on 5200 this week as well. Several of the special warriors continue to make great improvements and could be cleared for release. One in particular named Leigha has been fighting the beast that Ava has for over 18 months and finally was told this week that her scans have come back clear. This is a monumental event for those or us that live in this world and shows that hope and prayer can have great impact. Still there are several other kidos fighting for their lives and some have not fared as well, but the words of Mr. Churchill should resonate with all the parents.

"Never give in--never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.''
Winston Churchill 29 October 1941

God Bless,
Mark

Wednesday, July 28, 2004 10:31 PM CDT

Day 19 (PT)

Look everyone I am wearing my MASK!!!

2nd Full day Home (Apt.)

I had planned to update last evening after Ava went to bed but she did not cooperate. The first full day was not with out hurdles but we cleared them all. We spent most of our day working up the new meds up for Ava and making our first out patient clinic visit. The clinic took much longer than we had planned but everything came back fine. The Doc said she looked good and did not appear to be worried about her minor discomfort at this stage. She is still not eating but we hope she will show an interest soon. Ava has motioned for me to make some of her favorite things in the kitchen only to turn her nose up when we present the finished product. She has also started to swallow again, which should clear the way for what we hope will be a healthy diet of lots of chubby building good stuff. If there is one thing I have learned over the course of the last 7 months it is how to put on some LBs so I have that covered. We are hoping for a more restful evening than the last as we did not have to give Ava her GCSF since her counts had reached a whooping 14.2 WBC. This is probably the reason for all of the discomfort she was having last night. Many times the kidos that receive the G get extreme bone pain as the cells rapidly develop in the Marrow and spill out into the peripheral blood. The best thing for the pain from what they tell us is Tylenol but since she was not swallowing, well it was somewhat useless. So we road it out until the pain subsided and both Ava and Mamma ran out of tears and finally fell asleep.

Today was a much better day and Ava was started to act like her old self again. She was ready to go to the clinic and did not make a sound when Lisa put the mask on her for the trip. Amazing how she now realizes that the mask is her friend and that it is vital to her recovery. Lisa had a long talk with Ava yesterday regarding the mask and she seemed to grasp the importance very well. Now the mask also means we can go out side and look for Dogs anytime day or night. Did I mention Ava loves Dogs? Tomorrow will be more of the same and we expect things to continue to improve.

I must stop here and try to catch 6 hours of good sleep, but before I do I want to say how wonderful the team of the 5200 Duke PBMT was during our time of dispair. I must say that when things got rough they where there to give us more support than we could ask for. Our primary’s were with out a doubt the best of the best and I want to thank them for making a difference and treating Ava and Mamma (Lisa) special. They even let me stay late when things got rough.

One last note I would like to mention with regard to the families still battling there own wars on 5200. Please offer up special prayers for all the kidos fighting with all there might. Pray for miracles and healing for all of them and give their parents the strength to never give up.

God Bless,
Mark

Monday, July 26, 2004 10:59 PM CDT

Day +17 (PT)

(WBC 10.4) Going Home!!!

Yesterday was a busy day of prepping for our departure today from the Hospital. Yes you read that right…we were released today!! Ava’s counts hit a high of 11.6 WBC yesterday when they gave us the final thumbs up for release. The release orders came swift this afternoon and caught us or should I say me off guard. When we left the hospital we looked like a pack of mules pulling our cargo down the mountain trail. Except for Ava, who was in her bubble as she will not wear a mask? I will update more tomorrow as things are getting late but we are home for now at our Durham address trying to make the adjustment of living outside the box.

God bless and keep all the prayers flowing as there is much work to be done for Ava and all the other kids on 5200!
Mark

Saturday, July 24, 2004 6:27 PM CDT

Day 15 (PT)

(WBC 6.6)

I am on my flight home from the Neuroblastoma conference in Chicago but the reports from the hospital are very good. Ava’s counts have climbed to well over 6 WBC and she is starting to show positive recovery of her mucositis. The plan is to wean her off some of the IV meds and give them to her orally. This presents a great challenge for us as Ava has not been very good about allowing us to give her meds in this method. The reason for giving them by mouth is to cut down on the amount of time that Ava will need to be hooked up to the IV pump once we are released. As it stands now she will have a heparin ball attached to one of her lines that will remain there giving constant dose over the course of each day. That leaves us one additional line to administer the TPN and the list of other meds she will need until we are in the clear from transplant. Ava has developed a keen sense of know just how and when to raspberry (exhale) when we give her medicine. It the doses were small and tasted great I think we could manage easily, but the suspension of the medicine is usually not agreeable. So the stage has been set.

Keep the prayers flowing for all the children fighting for a cure.
Mark

Friday, July 23, 2004 5:56 PM CDT

Day + 14 (PT)

(WBC 4.4) Still Going!!

Just a quick update today as I am traveling to the Neuroblastoma Conference in Chicago. Ava had a very good day yesterday and seems to be making very good improvement. The Docs are using the D word for Monday (Discharge)! Hard to believe that just last week Ava seemed to be barely hanging on but now she has begun to resemble her old self again. Lisa spent a couple of hours with the discharge nurse discussing the protocols once we are released back into the general population. The daily med list is long but manageable for a short period. Ava will remain on TPN until well after radiation treatment due to her lack of appetite prior to our visit at Duke. We would expect that she will start to eat again once her mouth and throat see some relief and she is able to swallow. Currently she still does not open her mouth and refuses to swallow anything. The routine when released will entail daily blood draws and clinic visits to asses Ava’s progress and recovery from the transplant. From what we hear the process can be somewhat agonizing as you wait to see the Docs each day at clinic. There are no appointments so the day could go quickly or you may have to sit for hours. This would not seem like a daunting task for a normal 16 month old but the fact that we are going to have to keep a mask on Ava during that time will present a challenge. In fact this may turn out to be our greatest challenge to date since Ava does not like anything near her face…..now way!

I hope to gain some insight on NB over the next two days that will give us some direction regarding continuing treatment. Some families would stop after finishing the protocol we are on but we intend to remain proactive. The fact that the disease has such a high reoccurrence does not reassure us that Ava will be truly Cancer free. In fact I do not know if we will ever stop worrying about her and what long-term affects may result from the treatment. We take each day as the Lord provides it but we search for the cure that will provide longevity.
Thank you, for all the prayers that have been offered up for Ava and all the other kids warriors fighting the war for the lives. Oh and say a couple of extras for poor old Bam Bam that misses his mom, dad and Ava so much!)

Mark

Thursday, July 22, 2004 8:41 AM CDT

Day +13 (PT)

(WBC 2.4) Enough SAID!!!

If we were in Vegas I would be doubling down now as we seem to be on a bit of a roll. We can hardly believe how well Ava is doing at this point; of course we would like to think that she is ahead of the game. We have not seen the doctors as of yet but we do know that her ANCs (Absolute Neutrophil Count) have climbed to 1750 which is still a bit under where the want them to be, but making progress. One thing they are looking for before we can be discharged is 3 consecutive days with ANCs above 500. So we have one more day to show the Docs that Ava is ready to smell the fresh air again. This will also mean that Lisa can finally see the outdoors as well since she has been on the floor now for over 3 weeks straight. Funny how the little things can get you excited such as sleeping in a normal bed or feeling the sunshine on your face. I think most of us take for granted just how truly blessed we are and how simple life is until we are met with adversity. I use to complain about the smallest details and or delays that took my day off the normal course, now I try to appreciate the beauty of every moment and take time to smell the coffee. (I drink a lot of Coffee: )

Tomorrow I am flying to Chicago for the Neuroblastoma Conference. The conference will be held at the Hyatt down town and the topics to be discussed will be regarding new treatments and studies involving the monster we fight.
Follow link for Conference information.http://www.cncf-childcancer.org/nbconference2004.aspx

My hope is to gain some insight and knowledge of where we go next and what we can do to increase the positive results of Ava’s fight. As I have mentioned before we have done well to this point and God has blessed us with keeping the Cancer at bay, but we are dealing with a very persistent beast that has Jason like qualities (Friday the 13th movies). We are looking for the final chapter and pray there will be no sequel.

Our Durham mailing address is below for those of you that have asked for a place to send items:
200-103 Alexan Drive
Durham, NC 27707

Thank you again for all the kind words and support from everyone, also checkout the photo of the transplant in the photo section. That is one for the scrap book to be sure. Oh and we want to say thank you to Paula one of UNCs finest that came to visit Ava yesterday, glad to know that they have not forgotten about us across town. I am not sure who they have on the floor to keep the residents in line since we have not made any visits lately.

God Bless and keep the prayers coming for all of the warriors!
Mark

Thursday, July 21, 2004 7:09 PM CDT

Day +12 Post Transplant

(WBC 1.3) Double down

I must say what a difference a couple of days can make! When I returned from my trip to Minnesota I could hardly believe what I found. My flight returned well after midnight and I assumed I would be able to slip into the hospital room unnoticed. Much to my disbelief one little girl was sitting up in bed waiting my arrival. Ava looked and apparently felt great, given what she had been through over the course of the last several days. In fact we played with her toys and read books until nearly 2 AM, seems Ava’s day and night clock are a bit off for now but who cares when she is feeling fine. Her mouth is still clinched tight and she looks like a chipmunk at times when she holds the fluid in her cheeks. She is still not swallowing but we hope that as her counts continue to rebound so will her mucosal membranes. For now we will take the belly laugh that she makes closed lipped and appreciate the sparkle that has returned to her eyes.

I will post more tomorrow after we have more from the Docs. Hopefully the upward trend will continue and we can start to plan a release date.

God Bless,
Mark

Wednesday, July 21, 2004 0:28 AM CDT

Day +11 Post Transplant

WBC .6) Moving on UP!

Today marks Ava’s third consecutive day of positive cell growth. The Doctors seem to be very happy if not surprised with her progress. We always knew she had a strong fighting will and she has proved it time and again despite her challenges. We anticipate she will continue with her upward trend and maintain positive recovery. According to Lisa we have not seen much improvement in her mucositis but we are hopeful that the increased mouth care we are committed to, will aid rapid improvement as well. The next few weeks will be quite busy as she makes the transition and her body regains its strength. We are focused on getting over this hurdle first, but we know that beyond, there is much treatment yet to be done. As I have mentioned before we will have to remain in the Durham area for at least 30 days once we are released from the hospital, as there will be daily clinic visits to monitor Ava’s improvements. Probably one of the greatest challenges will be to getting Ava to wear her mask while out in general population. By that I mean traveling from the parking lot of the Clinic to the waiting area. For now we will work with her daily to convince her that the road to freedom involves wearing a mask. The world beyond the doors of room 16 yield new friends to be made, not to mention all the fun activities she will be able to take part in outside her room. Ava seems to have her eye on older boys of the band of warriors on the 5200 floor named Jared. He has caught her attention and seems to be able to get a closed mouth smile out of her on some of her worst days or at least a wave.

I hope to post this tonight when I return to the Hospital from my two days of travel. Tomorrow I will have a better perspective of Ava’s progress once I have had a full day to assess and love on her.

Keep the prayers flowing for all the kids fighting everyday just like our Ava.

God Bless,
Mark

Monday, July 19, 2004 10:31 PM CDT

Day +10 PT

WBC .3) Grow Baby, Grow!

I am only able to give a second hand report as I am still on the road in beautiful Mankato, Minn. The separation from Sweat Pea is killing me but the good news is that Ava’s counts increased again today to (WBC .3) which shows positive signs that perhaps the worst is behind us. The Doc even commented that he would not be surprised if we had (WBC .6), I am betting she will be closer to (WBC .8). We will have to wait and see, but even so she will be headed toward recovery and perhaps some relief of the mucositis. The quicker she recovers from the effects the faster we can at least check out of the hospital. This does not mean that we will be coming home but at least we can escape the 8x12.

I will try to update tomorrow but I have a rather hectic day of meetings and travel, so it will probably be Thursday. Oh and Lisa wanted me to say thank you to the Angels that have been so kind to send Ava gifts and support, we appreciate them more than we can say.

God bless and keep the prayers coming for all the warriors on Duke 5200 and our friends at UNC 5CH.

Mark

Monday, July 19, 2004 2:45 AM CDT

Day +9 (Post Transplant)

(WBC .1) Keep Growing Cells Grow!

We had a bit of a restless night as it seems that Ava is trying to produce some new cells in her dormant bone marrow. She had a tendency to scream out while sleeping due to what might be some bone pain that occurs when the cells begin to engraft. We had a White Blood Count (WBC) of .1 when I checked the labs at 4 AM this morning. One of the nurses kidded me that I was a bit ahead of the game regarding Ava starting to produce; I quickly mentioned that we have some cell growth present and that I believe Ava is feeling the effects of engraftment. I am not going to say that this is any kind of record or even start the celebration at this point, but it appears that we may be making our way to the edge of the forest. The Doctors are quick to minimize the excitement letting us know that Ava could easily be back at (WBC >.1) tomorrow, so do not pop any corks.

Ava is still overall in pretty bad shape despite what looks to be an upturn in her condition. Her mouth and face show the effects of not having enough platelets to repair the damage that the chemo and pain meds have caused. The good thing is that as she makes improvements in her cell growth so will the condition of her mucositis. Once she shows positive signs of change and she can bare the pain they will slowly ratchet down the level of pain management as well. This in turn will give Lisa the break she needs to step off the transplant floor and sample the outdoor air. She has been more or less tied to the room for the last 8 days as Ava’s condition worsened. This does not make for a very happy mamma, but she is more comfortable being there for Ava than worrying what is happening when she leaves. I must say that Lisa has shown incredible courage and strength through this last course. The burden she carries is great and she has remained solid for Ava giving her undivided attention and focus. I feel like this has been a great part of Ava’s positive response over the past two weeks and know it will pay even greater dividends as we work towards beating the monster.

I am traveling again today but will be getting the full update from the team and pass along what I know.
Thank you for all the prayers and support, please remember all the other warriors on the 5200 BMT unit.

God Bless,
Mark

Saturday, July 17, 2004 10:04 PM CDT

Still no cells but we are hopeful!!!

This week has been a challenge for Ava as she has battled a fever all of last weekend and eventually she broke to find her feeling the full effects of the mucositis. I had left on business on Tuesday and when I returned home from my trip on Thursday evening I found a completely different girl than the one I had left two days earlier. The pain had increased and so had the required pain management to cope. There is a fine line the doctors look for to make Ava comfortable with out giving her too much of the Fentanyl. Each day I was gone they increased the continuous dosage by 2 times per day. The first night I returned we increased the dosage again and finally last night we increased to nearly the maximum allowed. The nurses and the Docs all tell us this is normal and that we are getting close to making it over the hump.

Ava has been awake during the day but not really alert as she is very doped up. Her mouth has been bleeding pretty badly from the sores and she will only open her mouth when she gets so much saliva in the cheeks that she has to let it out. She looks like a chipmunk holding a bunch of nuts, which would seem funny if she was not in so much pain and discomfort. We are hopeful we will see some cells on the radar soon and hope to be able to give a positive report tomorrow.

Pray for those cells to Grow, Grow and Grow some more!!!

Monday, July 12, 2004 9:39 PM CDT

GROW CELLS!

Ava still has not broken her fever and we are now starting our fourth different Antibiotic. They pulled one of the other drugs down that had the worst side effects and hope that they can drop to just two drugs for coverage. As of today we still have negative cultures. They are thinking of giving her a new fungal protection as well to cover anything that may be growing in that class as well. We have not seen the worst of Ava’s mouth sores as they seem to be getting worse rather than better. The mouth care is a challenge and we perform the deed despite her turmoil. I will be traveling as of tomorrow so the updates will not be as timely. I will do my best to keep everyone posted while I am gone.

Pray for all the battling like Ava that they may have a speedy recovery.

God bless,
Mark

Sunday, July 11, 2004 2:19 PM CDT

Day 2

GROW CELLS GROW!!!

Times are getting Tough!

Ava really started to feel the pain of her mucositis today as the tenderness has increased considerably. Like a small ship in rough seas, we realize we are going to have to batten down the hatches to ride this storm out. The mouth care procedure brings tears to Ava, Lisa and I. I can only imagine how it must feel to have the kind of pain she is feeling when we force our way in to her mouth to clean the debris and saliva. We use a combination of three liquids to clean the mouth and kill bacteria with a toothete soaked in one of the three. A toothete is a sponge attached to a plastic straw that is designed to clean the mouth. As I mentioned yesterday regarding the Antibiotics, we started our third last night after Ava’s fever spiked to 39C which I believe is somewhere over 102 F. It goes without saying that we were not happy about having to start another drug, but the doctor thought is was necessary to provide a full spectrum of coverage.

Ava spent most of the day sleeping or lying around with her mouth clinched closed. The Doctors said she looked good considering what she has been through and as her cells begin to grow she will eventually make quick improvements.

Pray for new Cells to Grow Cells Grow!!!!!
Mark

Saturday, July 10, 2004 11:24 PM CDT

Day +1

Today Ava started to show signs of the coming side effects of her previous chemo. I like to use the Analogy of a hurricane coming and these are the preceding bands of wind coming to shore. We know a big storm is on the horizon but the eye is still a few days from making land fall. She was not as coherent and did not tolerate anything in the mouth. She showed no visible signs of mouth sores as of yet but we could sense that she was developing some overall discomfort. Around 3 pm we decided it would be best to put her on some form of pain management since she was feeling miserable. She also started to run a fever which triggered the doctors to start her on Antibiotics. Mandy our nurse did blood cultures and started to monitor her temp through out the day. When Ava did not show signs of breaking the fever the doctors added an additional antibiotic to the line and mentioned they may add a third if the fevers persisted. This did not sit well with Lisa and I as we know of the many side affects resulting from abundant use of different forms of Antibiotics. We hate to question the proactive responses they make regarding the fever and how to treat it, but our concern is not only for the immediate health bit Ava’s lifetime well being.

Mouth Care Mania

We also became very diligent about performing the mouth care on Ava today. To say that she did not care for it would be an understatement. It takes both Lisa and I every bit of strength to hold her head still while telling her that we are only trying to help her get better. Each time we performed the procedure she was nauseas and spit up a great deal of mucus. She seemed to feel better once she cleared her mouth and throat and would quickly lie back down for more rest.

Keep the prayers coming and as always thank you for the kind words posted to Ava’s journal.

God bless,
Ava, Lisa and Mark

Friday, July 9, 2004 10:49 PM CDT

Today was Ava’s New Birth-day!

Last night was fairly restless for Ava from what Lisa has told me. Perhaps she was excited about the big day today and the eventual birth of her new bone marrow.

THE TRANSPLANT!

The transplant took place at 10:30 am and went very well from what we could gather. She had a slight elevation in blood pressure and increased heart rate but otherwise it was fairly uneventful. There was a slight smell of garlic or a potent tomato sauce smell in the room once the transplant was done. I kidded with Ava all day telling her that she needed a breath mint as her body expelled the DMSO the stem cells had been preserved with. The doctors were pleased with her transplant as well and said that she is right on track with what they had expected. Ava was in good spirits for most of the day after a long nap, but I could tell that she was starting to feel the effects of the low blood counts. We have only begun to ride the roller coaster that we have just boarded as her condition will get much worse before we see the light at the end of the tunnel.

Now more than ever we need the prayers to guide Ava along this bumpy path and give her strength. There is a great distance to be traveled and we hope for rapid growth of her new cells. It may take as long as 2 weeks before we see relief from her mucositis but once the cells engraft she will recover quickly.

Thank you again for all the prayers, I will update tomorrow once we see how the night goes.

God Bless,
Mark, Lisa and Ava

Thursday, July 8, 2004 10:41 PM CDT

Day –1 Tomorrow is the Big Day!

The past few days have been uneventful, although Ava finished her chemo round on Tuesday not a lot has changed of her condition. Her counts have been steadily dropping and she received blood yesterday once her hemoglobin dropped below acceptable level. Her other counts are dropping as well and we expect her to be neutropenic tomorrow since she was on the fence today with her WBC and ANCs. Although they tell us this is normal it is tough standing by watching her condition decline as the chemo takes affect. We started a regimen of mouth care involving a set of different liquids that are supposed to minimize the affects of the mucositis and I must say that Ava does not care much for the taste, nor does she appreciate my forcing it on her. This will be an important part of the daily routine this weekend and next week as we wait for the stem cells to take hold and grow. The mouth care has been a challenge but Ava’s spirit has remained very high. The Grandparents have been spoiling her and giving Lisa a break from the space we are calling home for the next few weeks. It has been nice to get some home cooked meals brought to us her as well as eating the hospital food is not the best and eating out is $$$.

Tomorrow is the big day and one of the other dads on the floor said that it will be Ava’s new birthday. We hope that this will be a step toward beating this and Ava eventually starting a new normal life.

Thank you again for all the kind words posted in the journal, Lisa and I read them everyday and smile and cry together. We use them as our inspiration to keep up the good fight and remain hopeful. Many of you have sent us emails and gifts that have made a huge impact as well in bringing a brief glimpse of joy. Keep them coming we appreciate them more than you know. One day when Ava is older she will read them as well and realize what a special person she is and how she touched so many lives early on. Perhaps they will inspire her to greatness one day and she can take care of her old man and young lovely mother!

God Bless,
Mark, Lisa and “Amazing Ava”

Sunday, July 4, 2004 10:29 PM CDT

Day - 5

We are now on our third day of induction chemo and Ava has handled it well to this point. She has stopped eating food which tends to be the norm for kids receiving high dose toxic levels of chemo. This course is composed of three drugs Melphalan, Carboplatin and Etoposide all administered at very high doses over 96 hours continuously. The Melphalan is only run over a 30 minute period and tends to create the most havoc on the body from short term side effects although the other two have similar effects. The goal is simple by definition, wipe out all the remaining cancer cells hiding in Ava’s body and take her bone marrow down to nil, then transplant the harvested stem cells they gathered from Ava back and March. The stem cells will travel through the blood stream until making their way to the now barren bone marrow and eventually engraft and start to grow. Sounds simple, but there is a great deal of testing and monitoring leading that will take place. Looking at Ava sleeping peacefully now it is hard to imagine that over the next 7-14 days her condition will reach a state worse than we have seen to date. As the drugs take affect and the counts plunge to reach their low point (nadir) there will be signs of many of the side effects we have experienced in mild fashion during the previous 7 rounds of chemo. The worst being mucositis that will come as her counts bottom out. Mucositis is the swelling, irritation, and ulceration of the mucosal cells that line the digestive tract. Mucositis can occur anywhere along the digestive tract from the mouth to the anus. It can be a very troublesome and painful side effect of chemotherapy. The first sign will be Mouth sores and possible sores around the diaper area. The doctors tell us to expect this and they we will probably have to manage the pain that follows as well with some form of medication. There will not be recovery from the side effects until Ava’s body starts to produce her cells on her own. During this period we are also expecting Ava to get many, many transfusions to maintain her body and safe levels.

The future reports many be somewhat graphic but I feel it is important to understand the strength our little girl has. Ava is not the first nor will she be the last to fight this battle, but the hope is to one day find a cure. Until then the war rages on and the young soldiers fight for lives.

God bless and thank you for all the prayers and thoughts!

Saturday, July 1, 2004 8:03 AM CDT

Ava and Company settled into the environment of the BMT floor last evening and have started the initial hydration process before starting the chemo. The chemo will run for the next 96 hours straight and then there will be 3 days of rest leading into the eventual transplant. Ava’s spirit is high and she is quickly gathering the attention of the nurses on the floor with her toothy smile. We are hoping for and uneventful a process as possible over the next 7 days and she gets her chemo and waits for the stem cell transplant. This is the easy part as the doctors and other family members will say, the real fight begins after the transplant. At that time all of Ava’s counts will have crashed and she will be fighting to sprout new marrow growth on her own. We hope she can graft and move through the low count fight quickly. I will keep you posted as the process progresses and post a room and address later in the weekend.

Thank you for all the prayers and great wishes; we need extra prayers now that we are rolling at Duke.

God Bless,
Mark, Lisa and Ava

Saturday, June 26, 2004 2:00 PM CDT

We have taken quite a detour since our last update! We are now at UNC after Ava’s blood cultures at Duke grew Gram Positive Cocci which is typically associated with staph or strep germs (bacteria). These are very common and can be found on the skin of any of us regardless of how clean we assume we are. What this meant is that upon arriving home on Thursday evening we received a call from Dr Driscoll that Ava’s cultures had turned positive and we must return to the hospital. The fact that we had just put Ava to bed 30 minutes prior came as quite a disappointment not to mention that both Lisa and I were nearly asleep on our feet. We initially were going to go to Duke but decided to make the trek to UNC as we would prefer to have Dr von Allmen perform her surgery if Ava’s line had to be replaced. You can imagine the Joy that Ava expressed when we woke her to put here back into her car seat for the 3 hour drive back to the hospital. We arrived at the hospital at 3AM and were admitted to the 6th floor as there were no rooms available on 5. After Doctor and nurse assessments we were finally off to sleep at 5 AM!!! Talk about a long day!

The second set of cultures came back positive as well on Friday and Duke requested that Ava have her central line removed and be treated with more antibiotics until a new line could be replaced. The procedure took no time at all but the removal meant that she would have to have an IV placed in a peripheral area. The site for the IV happened to be on her little foot which would not be a bad thing unless you have a little gremlin wanting to get up and go. This also means that all of Ava’s subsequent labs will have to be drawn from a new site on her arm or hand. This is one of Ava’s least favorite things and Mom and I do not care much for the procedure as well. She cried terribly but we were lucky enough to get a nurse that hit the vein both days on one shot and it was over before it started. Now we wait and see how the other cultures come out and see when they can fit us in for surgery for the new line. This will delay the transplant by a few days at least to perhaps a week. Ava is feeling fine and Nanna C, Nanna M and Pappa M have been here to help tame the tiger. We are hoping to get home for at least a couple of days before we have to report back to Duke. I will try to give an update as the plan begins to take shape.
Many of those following our progress have emailed or called to ask how you can help or if there is anything we need and Ava wants to post a wish list of thing she will need for the transplant. I will post her list over the weekend as well if you would like to contribute to her cause.

Thank you for all the prayers and great wishes; we will need a big dose of extra prayers once we get rolling at Duke.

God Bless,
Mark, Lisa and Ava

Wednesday, June 23, 2004 9:43 PM CDT

Not much to report as I am exhausted from the days events of rising at 5 a.m. to get to the clinic by 8:30. The day was filled with introductions to more of the Duke team and lab work was done as well as a couple of minor tests. We spent a significant amount of time with Dr Driscoll covering all the elements involved with the transplant. He is kind of like an old Clint Eastwood movie, giving you the good, the bad and the ugly! We are definitely ready to win the girl “Ava” and ride off into the sunset after killing all the bad guys (Cancer)!

For those of you from the great Midwest that follow our progress, I must say that Grandma and Grandpa made it her safely with no problems on the flight, although my mom had enough airplane peanuts stowed in her purse to feed a family of squirrels for a winter. Ok, this is my humorous update for the week, but do not expect the trend to continue, I plan to get very technical with the next update and give you the full run down on what lies ahead. There will be a test!

God bless and keep the prayers coming for Ava and all kids fighting for their lives!

Mark

Tuesday, June 22, 2004 9:05 PM CDT

Tomorrow we begin the next step in Ava’s journey; we will meet with the staff and Doctors at Duke to review the coming stem cell transplant. We have a tentative admit date of the 30th, I say tentative as Duke is not sure they will have a bed available for us come next Wednesday. That would put us on hold until there is space available. Obviously Ava must pass her remaining exams before we continue but it appears as if she is in good shape. As I wrote last week there will be a few additional tests done to evaluate her condition and give her the thumbs up. As long as they do not involve starting an IV in her little body I think she will be ok. I will give an update tomorrow or Thursday once we know more about our admit date.

Funny as Lisa and talk about the last 6 months how much has changed, even more amazing is the manner at which Ava has persevered and stayed strong. Now after 7 rounds of Chemo, multiple surgeries, scans, x-rays, shots and multiple doses of different medicines Ava does not care to take, we stand at the threshold of yet a new challenge. This will be by far the most difficult aspect of the treatment to date as Ava will be in isolation for a month or more and we will be living near the hospital for at least 2 months. The mental challenges have been great over the past several months and I think the burden of carrying the load is starting to wear us thin. Thankfully we have some additional reinforcements on the horizon that can lend support and fresh smiling faces for Ava to poke and squeeze as my parents are making the trip down tomorrow to provide fulltime support. We are looking forward to getting caught up on things around here, since there will be a new set of legs to chase after the little gremlin. If we do not get admitted on the 30th that would be OK by me as we could take in the 4th of July fireworks and fun At The Beach.

We will update soon.

Thank you for all the prayers and encouragement!
God bless,

Mark, Lisa and Amazing Ava:)

Thursday, June 17, 2004 10:26 PM CDT

We are home! They released Ava yesterday afternoon after her blood work came back favorable. I think this stay wore all of us out more than the previous visits as Ava never really felt bad. That means that she needed to be entertained all waking hours and even some of the sleeping hours. We will take this over her feeling bad of course. One thing I have realized is that I am not a young man anymore that can bounce back from a short night of sleep. Ava passed all of her additional tests they performed during our stay and we are now moving forward with the transplant procedure.

The plan is to report to Duke on Wednesday the 23 and 24 for our briefing on the transplant. We will meet with Dr Driscol to discuss everything Ava will encounter over the course of the procedure as well as the rules or our involvement. They will also be doing some other tests on Ava to see how she has weathered the last 5+ months of Chemo. Looking back I can hardly believe how far we have come since that day in January. So the big day draws near and we count the remaining days of our freedom to roam. We plan to get an apartment for at least 2 months as we will be making daily clinic visits after we are released from the transplant floor. Our hope is for a quick and rapid recovery so that we can be home where Ava is happiest. For now we will enjoy the moment and soak up as much happy time as possible. I will update in a couple of days unless things change.

Once again thank you for all the support.

God bless all the children that are sick!
Mark

Tuesday, June 15, 2004 6:37 PM CDT

CT scan was done yesterday in the AM and has come back normal or clear of new cancer. The scan had been rescheduled from last weeks failed attempt on Friday. The test only takes ten minutes so she only had to be sedated for a short time and recovered very quickly. Yesterday afternoon it was all we could do to contain the wild beast, she is not happy being cooped up in this room to say the least but this is the drill when her counts are low. Nanna C came in the AM to provide support and Ava loved the fresh face. Lisa and I were elated to get the results from the test and breathed a heavy sigh of relief once we heard the news. We do not like to go a whole weekend wondering what the unknown might be, perhaps we worry too much. The doctors also decided not to pull her central line due to the bacteria infection, since the infection is slightly different than the one we had 4 months ago. This was very good news as well since Dr von Allmen is on vacation in Hawaii and would only be able to perform the surgery if we traveled to him. I am not sure we could book tickets on short notice for Maui…ha.ha!

Since we are stuck here until Ava has some count recovery, they have been performing a series of pre-transplant tests as well. EKG, Hearing test and a short visit to the dentist to get tortured, were all done today. The first two were the least traumatic but at the dentist Ava did not like having her mouth pried open with a reverse vice grip for some reason. The dental review was normal and the bleeding of the gums she is having is a result of her low platelet counts. She will not put anything in her mouth as a result of the sores and so we are watching this as well. Now we sit and wait until she has recovery and we can get home for a short break before heading to Duke for the big game.

Lisa and I want to thank all of you again for all the words of wisdom and positive support. Please include all the families her and everywhere that have children that suffer from the pain and challenges of dealing with disease at such an early stage of their life. Hopefully my next update will be from home!

Saturday, June 12, 2004 9:18 PM CDT

We are still here at the hospital, seems Ava has a bacteria infection and her blood cultures have grown out Gram-Negative rods. This is not the results we were looking for on the blood work as this is sure to keep us here for at least an additional 10 days as they treat her with heavy antibiotics. Her fever is down now but she has been somewhat sluggish. In fact we have not taken her off the bed since Thursday. Unfortunately since she is neutorpenic she has contact precautions and she is not allowed out of the room with out a mask on or in “the bubble” of her stroller we have outfitted with a cover. She has not really wanted to leave the room so this has not been an issue. Ava did get platelets today as well as she had dropped to 12,000 (normal is 150,000 – 400,000). We still do not have the final word on what type of bacteria it is but obviously in her current conditions it is taken very serious. I will post more tomorrow once we get the word from Docs.

We did not get the CT scans done yesterday as things did not go as planned. Radiology did not have a slot for Ava so they had to work us in for the scan, which meant we did not actually get called down for the scan until 3 PM. This did not make Ava a happy camper as she was tugging at Mamma all day wanting to feed but she was not allowed to have anything by mouth for 4 hours. This would not be a huge deal if we knew from the get go that she had to stop eating at 11 AM but the fact that the scan kept getting pushed back made for an unhappy and hungry child. So we have nothing to report on the items I discussed yesterday regarding her MIBG scan and now we will wait until Monday when they can schedule her for general anesthesia.

Thursday, June 10, 2004 10:01 PM CDT

Check-in

The day did not pan out as we had originally planned. We reported to clinic early this AM for Ava to get her labs done prior to the scan. The fever she was fighting all night hit over a 101 in the early hours. We knew we were headed for a stay at the hospital if the reading was correct. By the time we got to clinic the fever had dropped to 99 but Dr Gold ordered antibiotics as a precaution. Blood cultures were drawn with labs and we should find out in the next 24 to 48 hours if Ava has an infection of some sort. If not they will release us once her counts start to recover and she is no longer neutropenic.

“Neutropenia is an abnormally small number of neutrophil cells (type of white blood cells that help fight infection) that occurs as a result of certain cancer treatments”

We had the scans and all seemed ok although there was some new uptake in the area around the neck and clavicle. Thus we are having additional CT scans done sometime tomorrow morning to rule out the possibility of new NB cells. I will update the site again tomorrow afternoon once we have the results back from the scans and the blood work.

We pray all are negative!

Thursday, June 10, 2004 3:02 AM CDT

“The Dance”

As I sit here in the early morning hour digesting the past days events, I realize the strange dance we do after a round of treatment. We work as much activity into Ava’s day as we possibly can knowing or expecting to be admitted within 7 days of or last visit. Ava always seems to be doing great until she hits the bottom of her counts and then the clock starts ticking. We are monitoring her this morning as she has now started to run a low grade fever. We are fine as long as she stays below 101 deg. We have touched the 100.5 mark and now have settled down at 99 for now.

Yesterday was a bit more difficult than we had planned for and if Ava could speak I am sure she would say the same. We arrived at clinic on time for her blood work and for the nurses to put in a new IV so that they could administer the MIBG solution. They start a new IV instead of using Ava’s central line in order to get a clean scan, since some of the solution may otherwise stick to the line of her Hickman-Broviac® double-lumen catheter. Now this may seem like a simple procedure to some that have been given an IV before, but for an infant with small veins the challenge is much greater. The process took three nurses and Mom and I holding Ava down to finally get a functioning line. When the smoke cleared 30 some odd minutes had passed and Ava had 3 Band-Aids on the sites that they could not thread the needle into. I must say I was not sure I would hold up and Lisa passed more than a few tears with Ava. Not sure what the nurses were thinking during all of the turmoil but I am sure that the look on my face did not ease their tension. There is no greater pain than to see your child suffering!! I now truly understand the meaning of being a parent and the overwhelming emotion that comes with the package. Top all the events at the hospital off with Ava taking a tumble in the hotel room and knocking her head on the table. The bump formed so quickly that we took her right back to the hospital where Dr Gold happened to still be on duty. By the time we got there Ava was her happy self again and brimming to get out of the stroller and walk. The Doc said she looked fine but to monitor her through the night. So now I sit her checking her temp every 30 to 40 minutes prepared for the fever but hoping for nothing over the mark. I realize no one ever said being a Mom or Dad is a piece of cake but this is something that I think no one can prepare for. I must be sure to give my parents a big hug and kiss when I see them again as I sure I put every fiber of their emotional pallet to work as my young life took form on the canvas.

The plan, if Ava can ward off the fever is to have her scan done at 10 am this morning, although I am not sure they will perform the procedure if she has a fever. They will be putting her to sleep for the scans and I am not fully aware of SOP is in this case. I will keep you informed tomorrow and pray that the scans are clean if we go ahead and that I am not updating the site from a room on 5 Children’s.

God Bless and Much Love,
Mark

Tuesday, June 8, 2004 9:45 PM CDT

The plan is starting to take shape for Ava’s transplant. We are now 4 days off her last round of chemo and her counts are slowly starting to drop. We are headed to UNC in the morning for Ava’s injection for her MIBG scan. We will get the initial radioactive injection tomorrow afternoon and the scans will be early Thursday under general anesthesia. Although this is standard protocol and the results will not change our current plan…we are hoping for no new uptake with NED. This would be a blessing heading into the eventual transplant. This will be all we do this week provided Ava can remain strong and we do not have to report for a fever or infection. We know her counts are dropping when she refuses to eat or breast feed as she normally does. The TPN we have been giving her every night has been a blessing and she has gained a little more weight but we would really like to see her eat a normal diet.

We spoke with Dr Driscol at Duke today and the plan is to report somewhere around the 22nd depending on her count recovery. They will do a few more tests and educate us for the transplant procedure. That means that we will probably be checking into the hospital around the 28th for the start of the process. The tension here at the homestead is high as you might imagine, but we know this is a vital step to getting Ava back for the long haul.

Ava has remained a positive flow of energy despite what she has had to endure. Lisa and I have tried to do new things every chance we get to bring a constant smile to her face. Thus the trip to the zoo and the aquarium, we also try to take her to the beach everyday to dig dig dig! That is what she mutters while we are sitting in the sand. Nothing says life is good like a day at the beach!

God bless with great love,
Mark

Monday, June 7, 2004 6:14 PM CDT

New update coming today I promise! The weekend was great a visit to the zoo and the beach. Ava is feeling good thus far.

More later,
Mark

Friday, June 4, 2004 7:43 AM CDT

Today is going home day for Ava and she has handled this final round of chemo well. We still have roughly 12 hours of this dose left but hopefully she will not feel nauseas today. Her counts have started to drop slightly as the drugs start to take affect, but we are hopeful for no FNC!!! The plan is to go to Grandma C’s house tonight to recover from this stay, not to mention see poor old BamBam. Ava really loves Bam I know she misses him, we can not wait until after transplant and she is free and clear to have her old pal back home. Of course it will take 6 months of therapy, exercise and dieting to get him back into shape. He seems to have gained a few Lbs since his stay in the country and there are few other habits he picked up as well, but I think we can nip those in the tail once we get him back to the big city of Wilmington. Hopefully we can break him of the need to chew tobacco and lick him uncontrollably. We also hope to visit the NC zoo tomorrow so that Ava can broaden her mind and see some of the animals we are always telling her about. That should make for some great Kodak moments!!

A lot of planning has been done this week and we are pressing forward toward the transplant at Duke. There will be a series of test performed on Ava over the next few weeks to determine where we are now compared to when we started this fight. This will also give us a benchmark to measure her progress once we complete the transplant and hopefully, God willing, head towards NED. I must say that Lisa and I are starting to feel the pressure now as the days pass, not because we expect Ava to not do well but because we know she will have a great deal of discomfort during the process. She has been a trooper to date and bounced back strong and vibrant after every treatment, but this is the unknown for Lisa and I so we do not really know what to expect. We have read the stories on other kid’s sites that tell of the struggles they have had and we are looking for ways to mitigate the effects. Hopefully the effects will be minor and short lived during the process and she can bully her way through. We will definitely miss seeing the good Doctor as we move to a new venue. We will also miss the friendly faces of all those we have come to know and appreciate here on 5 Children’s. We will miss them but hopefully we will not have to see them again other than for visits.

There is much to be done as Ava’s journey continues and the search for alternative follow on treatments will soon be in full swing. I will update more with that respect in the future but for now we are focused on the next battle in winning this war.

Much Love and God Bless,
Mark, Lisa & Ava

Wednesday, June 2, 2004 10:10 PM CDT

First full day of chemo done and working on the next 48 hours, this round will last a solid 72 hours straight and tends to have the worst effect on her count depletion and recovery. She has handled the first day with no problems and we hope to have more of the same over the next remaining. We arrived early for her treatment but there were no room at the Inn and the hospital had to do some shifting around to accommodate our arrival. What that meant was instead of starting treatment early we were delayed by nearly 8 hours of waiting for the drugs to be sent up from pharmacy. Obviously this is not a perfect system but we eventually got things rolling at 7 PM yesterday. We have nothing new to report from our UNC docs although all have concurred that Ava is doing exceptionally well given what she is going through. Sometimes I wonder if they are telling us that to keep the positive momentum and hope level at above the rim altitude but I manage to shake it off and focus on the positive facts we have in hand, not to mention the fact that Ava has been feeling great. I must say that it is weekends like this past one that make Lisa and I wish Grandmas and Grandpas did not live so far away! But I guess that was a choice that Lisa and I made to live where the sun is always bright and the beach is always open. Besides why would you want to live near the cool waters of the Atlantic with white sand beaches, when you could live in the deep woods or frozen tundra (Winter time). This is one of life’s little mysteries.

Ava had a wonderful 4 days at home and we tried to squeeze as much out of every day that we could. That means trips to the beach, the aquarium, the mall and of course Ava’s favorite Home Depot! She really digs the fixer upper stuff and I have a feeling she will be a tremendous help in the yard one day. Did I mention the 4 trips to DQ as well, Ava loves the Oreo blizzard and so does her chubby Daddy.

I will update tomorrow to let you all (ya’ll) know more about our conversation with Duke and the approaching transplant. The date is approaching rapidly and we starting to feel the pressure and anxiety. Thank you everyone for the kind words and prayers for Ava, we truly believe that Ava is being touched.

Much Love,
Mark

Friday, May 28, 2004 11:02 PM CDT

We have been home for a day and finally had the time to sit back and reflect on this past weeks events. On Sunday as we drove to our hotel for the night preceding the surgery the weather was frightful. In fact one of the two ladies in the back seat was helping me so much with the driving that I had to pull over and offer her the wheel. The rain was coming down in buckets and I must admit that I drive a bit faster than most when the weather is bad, but not when it might endanger my Sweet Peas. It was if the Lord was letting me know that there was no need to hurry and that everything was going to be ok this week.
Well now I sit here nearly 5 days later reflecting on how we were blessed this week with positive uplifting news.

Ava’s surgery went with out a glitch and Dr von Allmen feels comfortable that he got the entire tumor. Secondly, all the tests came back negative for cancer cells in the bone marrow aspirations. We are now forming a game plan for the next battle that is scheduled for this Tuesday the 1 st when Ava will get her 7 th round of chemo at UNC before we go to Duke for the transplant. If I have calculated correctly and Ava recovers as she has over the past rounds, then we should be at Duke around the 24-25 of June.

For now we will sit back and enjoy these few days at home before head back to UNC. Thank you everyone for all the kind words, support, gifts and cards you have sent to Ava and Lisa and I. I want to personally thank all when I get a free moment to do so. It means so much to Lisa and I to have the support.

God Bless,
Mark

Thursday, May 27, 2004 9:57 AM CDT

Going home!!!
Ava is doing TREMENDOUS:)

More later, thank you for all the prayers everything was GRRRREAT!
Mark

Monday, May 24, 2004 10:11 PM CDT

Today was a great day in our fight to beat the monster! Ava handled the surgery very well and in fact came through with colors. Dr von Allmen said that she did very well with the tumor and adrenal removal. The surgery was very straight forward with no complications and or excessive bleeding. He feels comfortable with the fact that he feels he was able to get all the mass. Coupled with the fact that Dr Gold had no troubles getting optimum samples from both hips for her bone marrow tests, overall it was a tremendous set of procedures and a great day. I even forgot how tired I was despite the fact that Sweet Pea had us up at 4 AM this morning with her laughing coos and chants of Mamma and Dada. Who needs a rooster when you have Ava? Now if I can only figure out how to set her for say around 6 AM, we will be in business.

We will have the full report on the bone marrow tomorrow and hope to find no remaining Cancer there are well. Dr Gold did do a preliminary look over the samples and found them to be very clear at first glance. Which is extremely encouraging, this has even greater importance than the tumor removal, so it was a joy to get two rounds of good news in one day. Obvious it makes everything a bit more bearable but to keep things in perspective we know that this is another step in beating this thing. We also know that there is much work still to be done and many prayers that need to be said. Once Ava recovers over the next couple of days we will head home for a bit of RR until we check back in on Monday the 31 for another round of chemo. Obviously we do not want to look to far ahead on the schedule and concentrate on the next game, but if all goes as it has with the previous rounds of chemo that should put us at Duke for her transplant by the 24th of June. We will have another series of scans done leading into that event and we are hoping for NED (No Evidence of Disease). We will enjoy this victory for now and start to prepare for the big game soon.

God Bless and thank you for the prayers!!

Thursday, May 20, 2004 9:26 PM CDT

Just finishing our third day at home with the little gremlin, we are not sure what they put in the dose of platelets she got on Monday but she is unstoppable. Needless to say Lisa and I are ecstatic to say the least. Ava has been feeling fine this week I guess she was just happy that she was not locked in the hospital room. So we have been to the beach every evening to scrunch our toes in the sand, oh and wet our feet in the cool water as well. I am pretty sure she is going to be a surfer once she beats the monster. I can hardly contain her as she dashes toward the water. I can see that I will need to save some money for a new board well at least a new boogie board.

We are still in the holding pattern on the surgery for this Monday as we are not sure that her counts will be up to par. I plan to do labs on Sunday and take the samples up to the hospital early so we can see where we stand. We are hoping for good numbers and then we will travel up later that evening to get a room for the night. At the least we will have 3 more beach days ahead and I will try to update some pictures on the site as well. Thank you to all of you that have written such inspiring words in our guest book, we appreciate all the support and as always thank you for the prayers.

Surfs up!

Tuesday, May 17, 2004 1:02 PM CDT

Back at our favorite Southern B&B waiting for the results from Ava’s MRI scans this morning. The plan was to do the scans and get some blood products to tank Ava up for tomorrow’s surgery.

The results of the scans where good and Dr. Gold said that it appeared the adrenal tumor had reduced in size even more. Now the bad news is that her counts are not good enough to do the surgery so they are giving us more platelets and sending us home for the week hoping that she will start to recover on her own. So hold on to the prayers until next week when we head back on Monday. I promise I will write later tomorrow when we get home.

Best regards,
Mark

Monday, May 17, 2004 4:47 PM CDT

Back at our favorite Southern B&B waiting for the results from Ava’s MRI scans this morning. The plan was to do the scans and get some blood products to tank Ava up for tomorrow’s surgery.

The results of the scans where good and Dr. Gold said that it appeared the adrenal tumor had shank even more now. Now the bad news is that her counts are not good enough to do the surgery so they are giving us more platelets and sending us home for the week to hope that she will start to recover on her own. So hold on the prayers until next week when we come back on Monday. I promise I will write later tomorrow when we get home.

Love,
Mark

Monday, May 10, 2004 9:05 PM CDT

Nothing like a weekend of doing nothing to get you batteries back to near full power, couple this with rediscovering all the old toys in your toy box and life could not be any sweeter. Ava had more energy and zest than ever since starting the TPN. She took less nap time and it seemed we had brought home the energizer bunny for a tester. Most of you are thinking well that is great, glad Ava is doing so well, and we are grateful. But Mom and Dad had a touch of something this weekend that made things tough to stay up with our little bunny. As always, we worked in shifts and did not falter a step. Good thing it was the weekend as nothing else was done! Yikes talk about some TALL grass! Ava loves the way the thick grass feels on her bare feet anyway so all said this was a good thing, well sort of.

We did do labs today and like every party there comes and time to go home but in our case it means a trip to UNC to get a transfusion since her counts are bottoming out. We hope this will help to preempt the need for an additional visit and hold us off until next Sunday when we check in to prepare for surgery on the 18th. Lisa and I wanted to let everyone know how much we appreciate the kind thoughts prayers and calls of support that continue to flow our direction. We would also like all of you to say prayers for another family member of ours that is dealing with a similar situation.

Off to bed the Bunny wakes early!

Thank you and God Bless,
Mark, Lisa and Ava (Our Bunny)
! Oh I almost forgot Bam Bam!

Thursday, May 6, 2004 5:53 AM CDT

Today is homecoming day and we should be able to check out of our plush suite at the Chapel Hill Hotel (UNC Hospital) around noon. Ava has had a tough time with this treatment compared to the other 5 rounds of treatment. She was sick more times yesterday than she has been since the battle began. The Doctors say that is normal for many of their kids and they were surprised that she had not been very nauseas the last time she received this same cocktail of chemo. The Cisplatin tends to be a very tough drug to tolerate for most of the kids and coupled with the Etoposide I think most get pretty sick. We are hopeful the effects from the chemo will not be as harsh as we would like to stay home from the hospital for a short while.

Ava’s weight had dropped below our original diagnoses level and therefore Dr Gold felt it was time to start giving her TPN (Total Parenteral Nutrition) at home through her central line. This will help to build up her strength leading into the eventual surgery in 2 weeks to remove the remaining tumor. Lisa and I would like to see it put some of that wonderful chubbiness back on Ava’s skinny body. Let me go, I have to start packing the mule with all of our stuff we bring up to the room so I best sign off until later.

Thank you again for the prayers
Mark

Monday, May 3, 2004 10:19 PM CDT

Back for round 5 of Chemo at UNC. Ava has handled the first two days well and we are hoping for the same over the next two days. We will be meeting with Ava’s surgeon this week as well to discuss the removal of her adrenal gland and any remaining tumor in the abdominal region. Things are moving very quickly now and we are not sure if that is such a good thing. We are somewhat comfortable with the current routine we have followed over the last several months. Now we are looking at a path we have yet to follow and frankly the tension and anxiety continues to escalate. The good thing is that Ava does not even have a clue that she is getting ready wage the toughest battle of her life in a short amount of time. Once the surgery is done and recovery begins we will head back here for another round of Chemo and prepare for the eventual stem cell transplant at Duke. This is when the prayers will need to be said in groups of three or more as the procedure is a somewhat pivotal marker in the program. We will pray for the surgeon to have a keen eye and graceful hands to remove all remaining NB. We will also find out how Ava’s bone marrow has reacted to the treatment as they will be aspirating the bone marrow in both hips to see what NB remains. So as you can see there are several key steps quickly approaching and we will make through. God bless and thank you for all the thoughts and prayer, hopefully we will be home by Thursday evening.
Mark

Thursday, April 29, 2004 9:29 PM CDT

Ava continues to make improvements and the counts from the labs this morning were very good. That means no shot for the evening, that always gets both Lisa and I excited! The plan now is to be at UNC early Sunday morning to start the hydration process and eventually start the Chemo early the morning as well. We have to call to make sure they have a room for us at the Inn but hope to get things rolling so that we can get home for the following weekend. I never really knew just how great it is to just come home!!! So Ava has been testing all of her leg strength and of course mom’s stamina as well…….When she is fully mobile, lookout!!!

We are now starting to see a bit of light at the end of the treatment tunnel as we have now passed the half way mark and move closer to the final intense treatment of the transplant. This scares the bajebeezz out of both Lisa and I as this is the great unknown and we are not sure what to expect. We will also be meeting with the surgeons on this coming visit to discuss Ava’s up coming surgery to remove her adrenal gland and any remaining tumor in the area. The hope is that the treatments will have made such a significant impact that there will not be a need for excess work to be done in this area. In other words we are headed to some of the most crucial parts of Ava’s treatment. Sometimes I can hardly believe that we have been on this roller coaster for over 4 months already. Lisa and I have adjusted well or at least as well as can be expected. People ask us all the time how we are holding up and actually I am not sure how we are, but we just are! We have found many blessing since our lives changed in January and discovered a whole new world of love and compassion. Something like this make you really stop and wonder about life and all the things we have in life to be thankful for, and to stop and smell the roses as often as possible.
God bless and start smelling,
Mark

Tuesday, April 27, 2004 11:11 PM CDT

Thought Ava could make it over the hump but she ran a low grade fever all day on Saturday and finally broke the 101 degree mark just after midnight. Thus we were Chapel Hill bound for what we hoped would be a short visit. I am not sure if Ava was only dehydrated or just loves to sleep in a single bed with mamma but as soon as we got to the room she was out and the fever started to drop. By noon Sunday she no longer had any sign of fever and was getting a little of her spunk back. So to make a long story short, we checked out today and were home by 5 pm. Ava slept the whole way home and I think Mrs. McPartland even caught a few winks although she will tell you that she can not sleep in the car while I am driving. Please, I have been driving since she was in diapers!!!

So that was our weekend and although it did not turn out as we had planned, Ava managed to make this the shortest repeat visit so far when running a fever. As usual Dr. Gold gave us the double thumbs up on her current condition and was thrilled at how good she looks. The plan is to head back to UNC on Monday May 3rd for chemo round number 5 so I will keep you posted on the climbing counts.

God bless,
Mark

Thursday, April 22, 2004 8:58 PM CDT

Ava held out as long as she could and has been doing just fine until today so we decided she should do a lab visit at UNC as apposed to home health. Lisa traveled to Grandma and Grandpa Crouch’s last evening so they could go to clinic first thing this morning. As expected her counts have hit rock bottom and she needed blood and platelets transfusion. After a full day at clinic waiting to be hydrated and taken care of it was off to G&G’s again for the night. I traveled up after a full day at the office just in time to give her shot of GCSF. Talk about a rough welcoming! Actually the L-MX cream made the shot hardly noticeable for Ava and she was quickly back in dreamland. The plan is to stay close to the hospital as to eliminate the need to drive 3 hours if she is running a fever. Dr. Gold did mention that he hopes he will not see Ava again but just incase they will leave a light on for us! Now the objective is to keep her happy and comfortable to see how well she can fight off a possible FNC visit before the weeks end. We are hopeful and Ava is strong so keep your fingers crossed. If you do not hear from me, then we have had a full weekend with our Angel and her new walking legs!!

God Bless and thank you for all the kind thoughts and prayers,

Mark

Monday, April 19, 2004 10:10 PM CDT

Well we made it through the weekend without a glitch and made it to the beach both days and even went this evening after knocking off work. I must reaffirm that this kid is going to be a beach girl……She loves the beach! To truly appreciate her sense of excitement you would have to see the look on her face when she sees the seagulls or the waves to understand her passion. Her smile and excitement would make even the Scrooge smile. Ava handled the treatment very well and Dr Blatt reconfirmed how well she was doing and did not make any long term projections but did say that the treatment appears to be going very well. Ava is strong, her age is a factor and of course she has two wonderful parents keeping the spirits high!! Those are Dr. Blatt’s words not mine! So now that we have made it over the hump of nausea from the treatment, we are waiting for the nadir in her counts to set in and pray that we do not have to make an unscheduled visit to the hospital for FNC.

Ava has finally overcome all fear of walking and will bolt across the room without hesitation now, which is tough to handle when she is dragging an IV pump behind her. It is so exciting to see her making the progress she has, it makes me feel like I am watching Go Big Red win the big one, hell 10 times better than that!! I will sign off for now and give you all and update later in the week.

God Bless,
Mark

Friday, April 16, 2004 6:53 AM CDT

Final day of this treatment and we should be leaving today around 3 this afternoon. Ava has handled this round very well and tolerated everything better than we had anticipated. Now the clock ticks to see how she will respond to the falling counts and whether we will have to make another unplanned FNC visit. One thing I can say about Ava it takes a lot to keep her down, she is wearing Lisa and I out like a nursery full of little ones. I think I know what my mom meant when she said that one day I would understand what it is like to have a child with “ants in the pants” that kept them on their toes can do to ones stamina and sanity. I guess one of my folk’s kids was a bit of a problem child and warranted extra special attention at times….. And they say Chemo is suppose to make the kids feel lousy and tired, goodness I can only imagine Ava at full speed she would be a force recon with. Trying to maneuver around the hospital with several solutions hanging from an IV pole and two pumps attached can give a mom or dad a workout.

So the long and short of things is that we will be home for the weekend again and hopefully catching some time ATB. Take care everyone, and thank you for all the prayers.
M

Thursday, April 15, 2004 1:43 PM CDT

Hello again everyone we are back at UNC getting another round of treatment and hoping for the same result as the last cocktail. The would be round number 4 for all of you that are keeping score and the cocktail they are giving her today is similar to rounds 1&2. We have not been able to stay out of the hospital on the other two similar doses but we are still hopeful. This mix lasts for 72 hours straight and consists of 3 different agents given at different sequences although one runs the entire time she is being treated while the other two are administered separately. So we are currently 2/3 of the way through this round and should be released around 3 pm tomorrow afternoon. This should give us 3-4 good days at home with out worries of fever since her counts should still be good. The weather is supposed to be great this weekend so we should get some beach time as well. Dr Blatt ordered a transfusion so hopefully that will hold us off and save us a trip mid week for the same.

We spoke with Dr. Gold about the MIBG scan and he said that Normal means Normal…..meaning that her scan looks like my scan would look if I had one done. In other words there are no new signs of uptake by new cancer cells and it appears that all of the treatment is having a very positive affect. He did say that we do not change treatment or alter the path in any way shape or form in fact this is the time to keep the “A” squad in and let them continue to put points on the board. Pound the beast into submission and then finish him off with a final ending blow! So we press on and keep the pressure where it needs to be.

Thank you everyone for the thoughts and prayers, we appreciate all the support!
God Bless and Much Love!
Mark

We also change the photos often so check them out for a good laugh or Ahh!

Sunday, April 11, 2004 12:21 AM CDT

Happy Easter everyone!!

Sorry for the delay on reporting but we have been busy entertaining the new boss of the household (Ava). She has taken on a new personality that can be very demanding at times and can have some serious backlash if she does not get her way. Normally I would make some smart (cute) remark her but better refrain for fear that Lisa may read my update and I would be in the DH (Dog House). We have truly enjoyed this time away from the hospital and were actually relieved when Dr Gold told us that we would not start Chemo #4 on Monday due to her low counts. That means the Easter bunny will be in full swing and we can enjoy another day at the Beach! I always like to throw that beach part in for all those friends and family that are land locked:)

The scans were great; in fact Dr. Gold said that the MIBG looked normal and that he was very pleased and surprised with her progress. I passed the phone to Lisa when he called so that he could tell her as well and we were both giggly when we finished the call. Then I had to ask Lisa what Normal meant and we both came to the conclusion that we were not sure. Not wanting to sound like complete dummies in calling Dr. Gold back, we decided to wait until the coming week to ask him in person what he meant and get a better overall perspective on treatment thus far. So the plan is to have labs done on Monday by home health and see where we stand for the next round. I am sure we will be going up the first part of the week for sure. I will give you the good Doctors feedback at that time.
Have a very Happy Easter!
Mark, Lisa and Ava

Thursday, April 8, 2004 9:52 PM CDT

We traveled to UNC today for Ava’s injection and to have her labs done. Everything was going just fine until they informed us that they would not be using her broviac for the injection, instead they would have to start a fresh IV in her tiny hand. Talk about ruining a party, nothing hurts more than to hear your own child scream and cry because she is being held down and poked not once but twice as they could not find a vein at first. Finally we moved to the main children’s hospital for the injection prior to her scan tomorrow and another substance which I administered to her orally. Boy, one thing for sure Ava is one tough cookie when it comes to fighting off nurses and doctors! I am sure if you talk with Ava’s
Grandpa McPartland he can tell you some stories about Ava’s Daddy! I guess it is in her blood, but this is a good thing and will carry her through the turbulent waters ahead as well. Tomorrow is the scan and unless her counts start to jump miraculously, then we will not be starting Round 4 of chemo on Monday as previously planned. Everything looks good except the platelets which are still lagging. This does not seem to worry Dr Gold, so we will wait for the rebound. The weather is supposed to be wonderful at the beach this weekend so we will enjoy every minute and take some new pictures to send everyone.

I will update the site on Saturday with the results from her MIBG scan if we have the results.

Happy Easter everyone and thank you for all the prayers!
Mark & Lisa

Wednesday, April 7, 2004 9:10 PM CDT

Life at the Beach!

I hate to sound like a scratched record, but we had another exceptional day again today, not to mention the Lord blessed us with slight offshore breezes and 68 deg. So what do you do when the weather is near perfection here in Wilmington¡KGo to the Beach! Ava is going to be a water girl for sure, in fact she gets almost as excited as Bam Bam (our Boxer) when she sees the ocean. What is so amazing is to watch the expressions on her face as she reaches for a sea shell or waddles after a couple of sea gulls standing near the waters edge. Of course a trip to the beach would not be complete with out stopping at the park for more play before topping it all off with a trip to DQ. Basically the new rule at our house is that if it brings laughter and joy to Ava, then we just do it!

Ok now let¡¦s talk about the serious stuff. We have a plan for this week finally and tomorrow we will be headed to UNC for the Isotope injection for her eventually MIBG scan on Friday. We are scheduled for the scan early in the AM, so hopefully Ava will not be too unruly as she will not be able to eat. The scans will give us a much better idea of how the treatment is progressing and how the NB is responding. We are hoping for a sizeable reduction in the amount of cancer cells, just as we did after the latest MRI scans done last month. I will do my best to post the results on Friday evening or Saturday morning. We are headed back for our 4th round of Chemo on Monday provided her counts are still climbing. That round will entail another 4 day stay at the UNC Biltmoreƒº

Take care, and thank you everyone for all the prayers and support.
Mark

Sunday, April 4, 2004 9:47 PM CDT

Today was one of those days when everything went smoothly despite forgetting to set the clocks forward. Ava had a great day and seemed almost oblivious to everything but Lisa and I. Funny how our new barometer is set to Ava’s Doppler radar, we now measure everyday with her. I guess that is how things go and even if it is raining outside and cold, if Ava is having a good day then by George so are we! She is such a happy spirit that no matter how you are feeling she can bring a smile to your face. I am sure the people we see at the fuel station when filling up the van must feel like I am one very Crazy guy and I do not mean like Steve Martin. I can have the best time entertaining her making funny faces through the window trying to make her laugh, that I have no idea what is going on around me. Couple of times I forgot to turn the pump on and I was standing there for 5 minutes before I realized it.

Now for the week we are headed toward another round of Chemo on Monday the 12th as long as her counts come back up in time. The plan for this week is to keep her fever free and eating well so that she will be strong heading into next week. We also have MIBG scans set for this week so I will be able to update all of you with the current status of her NB cells. That is all for now, I will do my best to be timelier in updating the site. We have been to busy enjoying every minute of everyday on Ava time;)

Thank you everyone for the Prayers!
Mark

Saturday, March 13, 2004 8:55 PM CST

This is the beginning of our attempt to create a new place for all of our family and freinds to get the most current updates on Ava's journey.

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