Journal History

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Thursday, October 11, 2007 9:08 PM CDT

Hiya Champs!

On your birthday, I went to Kansas for the Great Plains Schools for the Deaf volleyball tournament. I thought of you on your birthday. I wondered what you would look like by time when you are eight. I wish I could wrap my arms around you and kiss on your head and say, "Happy Birthday, little buddy."

I envy angels up there in Heaven who celebrated with you on this day... but, I am absolutely positive that these bright-faced angels would make your birthday the best.

Remember, you are the light of my life and you make my life the whole.

I love you so much more than you could ever imagine.

To infinity and beyond!

Love, Samantha

P.S. Happy Birthday!

Tuesday, September 25, 2007 7:58 PM CDT

Hiya, little buddy!

I just want to stop by to tell you that I never let a day go by without thinking of you.

You are still missed greatly by your loving family and me.

Stay happy in Heaven.

A lots of love,
Your biggest sister, Samantha.

Monday, October 4, 2004 10:15 PM CDT

Hiya, little buddy!

I just want to stop by to tell you that I never let a day go by without thinking of you.

You are still missed greatly by your loving family and me.

Stay happy in Heaven.

A lots of love,
Your biggest sister, Samantha.

Sunday, September 5, 2004 11:46 PM CDT

Today is the day. The beginning of this journey. Two years ago today that that awful word leukemia was brought into our lives. And now, the next few months bring so many difficult milestones all crammed together. We know that time heals all wounds, but also understand that until we work through this year of "firsts", life will not get any easier. The happiness of having you here was bigger than that.

The following poem has been circulating amongst some of the other families that have lost children this year....

Ask my Mom how she is
my Mom, she tells alot of lies
she never did before.
From now until she dies,
she'll tell a whole lot more.
Ask my Mom how she is
and because she can't explain,
she will tell a little lie
because she can't describe the pain.
Ask my Mom how is she,
she'll say "I'm alright."
If that's the truth, then tell me,
why does she cry each night?
Ask my Mom how is she
she seems to cope so well.
She didn't have a choice you see
nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For God's sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how is she
she'll lie and say she's fine.
I am here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
hug her and hold her near.
On the day we meet again,
we'll smile and I'll be bold.
I'll say, "You're lucky to get in here, Mom
with all the lies you told!"

Author Unknown

Please continue to pray for our family as we adjust to our life without our buddy, Max.

TPSPBM

Sunday, May 9, 2004 9:42 PM CDT

Max,
I missed you today. It felt strange "celebrating" Mother's Day without you here. I'm thankful that we chose to forego the pomp and circumstance of the day and instead joined the many others that walked at the Race for the Cure. Almost 50,000 who in some way have been touched by the effects of cancer. I only almost cried once...the man walking in front of me had a sign on his back that said, "there is no cancer in heaven". I know that it's true and for that I am so grateful. Our time together helped me to truly realize the beauty and honor that goes with being a mom, and what a gift you kids are to me. I thank God each night for picking me to be your mom and I love you more than ever.

p.s. thanks for the song to let me know that you were with us in spirit!

Sunday, April 18, 2004 8:54 PM CDT

New photos.

Greetings to all.

A couple of quick notes from the Adams family. At this time about six years ago we were on the verge of leaving for the hospital as Bailey had decided it was time to make her arrival in this world. She wasn't born until just after midnight so tomorrow is her official birthday. Bailey has already had the opportunity to do some celebrating with both sides of the family. We look forward to another day of celebrating on Monday.

You may also have seen some entries referencing the donations made to Spare Key in Max's honor. For those of you who are interested in seeing the article on Max, the website is www.sparekey.org. Click on current newsletter and you can read about the memorials for Max. We are touched and honored to know more families will be helped because of the generosity of Max's extended family and friends. Again, we appreciate all who donated.

Thanks for checking in.

Love,
TPSPBM

Friday, April 9, 2004 5:04 PM CDT

What language shall I borrow
To thank thee, dearest friend,
For this thy dying sorrow,
Thy pity without end?
Oh, make me thine forever,
And,should I fainting be,
Lord, let me never, never
Outlive my love to thee.

Again we would ask Max as we had many times before...."Who could possibly love you more than we do?" and as always he would answer, "Jesus!"

Happy Easter to all,

We love you buddy and miss you terribly,
TPSPBM

Monday, March 22, 2004 11:26 PM CST

Greetings to all.

Although checking Max's website as well as some of the other Caringbridge sights is still a daily ritual, it gets much tougher to post updates. One of the main reason is obviously because we no longer have Max's medical updates to give but there is of course more than that. There is a personalized side of grief that our family continues to experience. All of you reading this site also experience that grief in your own way as well. There is a point where it's hard to share those thoughts and feelings in this forum. It's almost as if the special memories become even that much more special when it's just your own personal thoughts about Max, or stories you share with people one on one.

That's not to say we want to stop sharing the impact that Max has had on all of us, just that it's now so much tougher to do. We continue to be touched by cards, notes, emails or conversations where people have a story about Max or how his journey impacted or changed something in their lives. It enables us to smile and at least for a time make the sadness of his passing not hurt so much. We miss him terribly and even though our faith tells us Max is in a better place, I don't think we'd hesitate too long to have him back with us singing and dancing, playing with Butkus, watching Cartoon Network, playing Superhero and just being a normal four year old boy.

Thanks to all of you who are out there supporting us and trying to ease our sorrow. It's appreciated more than you'll ever know as we continue to try and understand and accept Max's journey to heaven.

Love,
TPSPBM

Wednesday, February 25, 2004 3:52 PM CST

Its my first time to write the entry...
We all have been doing really good, but we don't certainly get over it. My mom and I sometimes share our words about Max. I sleep with his favorite blanket and 1 of his teddy bear every night. One night I had thought about Max... I finally really remember how much he loves me and how he had a blast times with me. These memories never die like soul. You will died with those wonderful memories! I will, too. I sometimes ask Max to help to have faith in me. You guys go ahead ask him to help to put faiths in yourslef. I believe that Max had became my Guardian Angel. I accepted what he is and how much he loves his family. I think that was worth it that I am his sister. I feel really good about it.
There is no boy like Maxwell Edward Adams!
Written by Sammy

Sunday, February 1, 2004 10:06 PM CST

Greetings to all from snowy Minnesota.

We continue to try to move forward in our lives despite how difficult that is at times. It seems like a constant balancing act, so many thoughts about Max mixed with both of us trying to get back to our "routine". January 27th found us apart with me on the road and Trish at home. Like we've done so many times in the past, our phone call at the end of the day found us both realizing we had both had a difficult day, that it had been one month since Max died. Our discussion really centered around the feeling that both of us really just need to do what we feel is best for ourselves to help us through this grieving process.

There is part of us that wants to move on to help us get over the incredible sadness we feel with no more Max and part of us that doesn't want to move on to stay as close to the life we had with Max. We are so grateful for the support we receive from so many, and while probably very difficult, we're appreciative of those folks who can still talk to us about Max. It means a lot and I'm sure always will to have Max in conversation.

We are offered lots of advice, some encouraging us to move forward and others encouraging us to hold on to the life that was with Max. In the end it's all appreciated because people just don't want to see us suffer, but each member of our family will take their own path to finding peace with our journey. Sometimes we want to hold onto anything that allows us to feel the physical connection with Max like the smell of a piece of his clothing. At other times we try to move on in an attempt to ease the sadness. Trish and I can be on opposite ends of that spectrum at the same time. The hard part is, like it or not, so many parts of the rest of your life just continue to move on. I feel like my brain gets overloaded on a daily basis (I know, some of you ae out there saying, "Well, there's not a lot to work with.") which has caused a serious daily headache as I navigate through each day and add all the thoughts about Max on top of that. We continue to march on.

A couple of other quick notes.

First, Happy Birthday to Grandma Dee. Her birthday is Monday.

Second, our family asks that you offer a prayer for Christie Blackwood and her family. We have mentioned Christie on more than one occasion on Max's webpage. She shares the exact birthday with Samantha. Christie continues to show incredible strength and determination to beat her illness. Recently, though. she has been experiencing a little more difficulty on the road to recovery. We had the good fortune to experience firsthand the power of prayer and ask that army of prayer warriors out there to help Christie with her fight.

Thanks for continuing to check in. Love to all.

TPSPBM

Tuesday, January 20, 2004 9:32 PM CST

New photos.

"I can't imagine how you must feel" so many say as they offer comfort and support, and even if they don't believe it, we know that it is true. You see, we'd imagined it ourselves...when he was first diagnosed and we were told he could die, when he relapsed and had to undergo a transplant, when treatment was suspended and we were told he would not make it through the week...even that very night as we watched him labor to breathe we tried to imagine. And yet, it is so much more than we'd imagined.
We miss the physical being that was Max. Our senses cry out to see, hear, touch, and even smell him just once again.

We are grateful that his actual passing was a peaceful one. It was the best of a bad situation. When we returned from the hospital on the 26th of December, Max was pretty snowed under from his pain control. He was obviously struggling to deal with all that was occuring and at about ten-thirty that night we had Hospice come to our home and give him an anti-anxiety medication to allow him to relax. It was comforting to see him let go of the tension in his body and rest peacefully. Realizing that this was the end of the end, we encouraged Max to just let go, telling him just how much we loved him and how very proud we were of him. Mom and Max fell asleep together as they had so many nights before. At about three-thirty in the morning something woke Mom up, perhaps it was Max's soul letting me know that he was taking his last breathe and it was time to say goodbye. It was just that peaceful and beautiful. For all the difficulties that living brought him, dying was just the opposite.

We are getting stronger each day, but still have moments that are difficult. Our grief is our own, and we take it a day at a time. We know that in order to experience true happiness again, we must work through this pain...and the rainbow will come. We have appreciated all of you that have tucked us in, and have continued to keep us in your thoughts and prayers. In such an isolating time, it is nice to know that we are not alone in this, and that Max mattered to so many.

This excerpt is from a letter Adolfo Quezada wrote to his son, Roberto, 'Goodbye My Son,Hello.'

"Quite simply, I will no longer dwell on your death. Instead, I will remember your life, and what a great part of my life you will always be.

Our relationship, has changed. You no longer are of me; rather, I am of you. You are no longer someone whom I must hold onto; you are part of the palm that holds me.

You have gone beyond the reach of my senses only to return at the core of my being. Now we will be together forever and ever.

Goodbye my son, hello."

We love you Max....to infinity and beyond.....

TPSPBM

Tuesday, January 6, 2004 10:53 PM CST

I read once that the most important things in life are the hardest to say, because words diminish them. There just are no words to describe the past ten days....life without Max. Another parent described it as being caught between the worlds of two truths. We know that Max is with God and at peace, pain free and happy, but we also know just how difficult life is without him.

We have attempted to get back to life as best as we can. The kids are back in school and Paul has started back to work. Monday found me alone in the house, the first time in such a long time with nothing to do...no appointments to get to, doctors to see, meds to administer, Max to nuture. So much of my life has changed without my permission, like life so often does. Please continue to keep each member of our family in your prayers as we each face the challenges/realities of moving on.

This new year instead of making resolutions that you know you'll never keep try something simpler....

when you hug your kid, hold on a few seconds longer..even if it makes them squirm...

reach out to someone who is going through a difficult time,even if you don't really know them, it means more than you'll ever realize....

plan a family vacation, it doesn't need to be fancy or expensive, just one that you can remember and talk about for years to come....and take lots of pictures....

speaking of pictures....when was the last time you took a family portrait, one with all your kids, someday it could be priceless to you.....

give blood, give blood, give blood, give blood........

and give yourselves a hug from us...we love you, we appreciate you and we could never get through this without you,

TPSPBM

Sunday, January 4, 2004 2:13 PM CST

Hello to all.

As you can well imagine, this has been an extremely difficult week for us. It helped so much to have the support of family and friends at the visitation and the funeral. Thanks to all who came. Thanks also to those who were unable to attend but have reached out to us in different ways to show their support for our family.

This whole week has had the feel of an out of body experience. People say we have great memories to hold on to, and we do, but the reality that Max will create no more of those memories is very painful. Reminders of him are all over and for a few fleeting seconds they make us smile but the overwhelming sadness and void left from his death do not go away. The pain from that is hard to describe but it's always there. Try as we might it is difficult to focus on anything else or look to the future. We try to discuss going back to our "normal" life knowing full well that will never be possible.

We miss you so much Super Max.

TPSPBM

Sunday, December 28, 2003 4:35 PM CST

Thanks to all for your kind words yesterday. It helped make an unbearably tough day bearable.

Here's Max's info:

Visitation on Monday night from 5-8 with a prayer service at 7:30pm. The location is David Lee Funeral Home, 1220 E. Wayzata Blvd., in Wayzata. Phone number is 952-473-5577.

Mass of Christian Burial 10am Tuesday at Our Lady of Mount Carmel Catholic Church, 701 Fillmore St. NE, Mpls.

In lieu of flowers, our family asks that memorials be to sent to:
Spare Key
820 Southview Blvd.
Suite 102
South St. Paul, MN 55075
www.sparekey.org

LOVE to all,
TPSPBM

Saturday, December 27, 2003 6:22 AM CST

"Of all the sad words of tongue or pen,
The saddest are these,it might have been."

Maxwell Edward Adams
10/04/99 - 12/27/03

Friday, December 26, 2003 6:06 PM CST

NEW PHOTOS.


Today's update will be rather short and to the point. We are exhausted by the activities of this week, the long day yesterday and the news of today.

We took Max into clinic for a platelet transfusion earlier today. At that time we asked if we could find out Max's counts and follow it up with a meeting with the Oncologist on staff. We were fortunate to have the head of the Hospice Home Care there and so she met with us as well.

Christmas day was difficult one. Max took a dramatic turn for the worse and his pain level increased quite dramatically. We were concerned at his inability to swallow and the appearance of his swollen tummy. The counts confirmed our concerns...Max's white blood count had almost doubled again to 485,000 and an examination by the doctor showed that his liver and spleen had greatly enlarged and she believes that there may be additional chloromas developing in his neck and head areas. We are seeing the natural progression of the body as it's organs prepare to shut down while the cancer takes over. Without medication Max would be in an unspeakable amount of pain, but we have worked to sedate him in a way that will make him as comfortable as possible in the days ahead. We realize that the days of smiles and conversations have passed and we wait and pray for peace and comfort for Max. The staff said that they would not expect Max to make it more than a week, and would not be surprised if he did not make it through the weekend.

The realities of the day are becoming clear and the prospect of all that lies ahead, overwhelming. We are raw with emotion and numb at the same time. We would take comfort in a few kinds words should you have the inkling to jot some down, if not, please continue to pray not only for Max, but for the entire family.

Love to all,
TPSPBM

Wednesday, December 24, 2003 1:46 PM CST

We would like to wish all our family and friends the happiest of holidays and a blessed Christmas. We will be thinking of you all as we celebrate together around the Christmas tree.

Max's health has definitely taken a turn. He was unable to get comfortable and required pain medicine yesterday. We now have him on a continuous dose of pain control, which seems to be helping him relax and rest. The happy smiling boy of three days ago is still here, but unfortunately we are lucky to see but a glimpse of him each day. He spends most of his time resting on the couch and only gets up if Mom has been away from him for more than two minutes, in which case he will get up to come find me! We continue to pray that if this is God's plan, it be as peaceful as possible.

We have appreciated the visits, meals and gifts from friends and neighbors. Max unfortunatley is not as receptive to the company and at this time is not wanting to share any of our time together with others. We hope that you understand if your visits need to be cut short, it doesn't mean that we appreciate you or your efforts any less.

To try to express how difficult this time is would be impossible. We are facing the future with our heads up, eyes wide open and hands folded in prayer...we just wish we saw something different. No matter how bleak things appear, we continue to hold out hope that in God all things are possible. We will continue to pray for a miracle for Max and ask that you join us.

We will celebrate Christ's birthday with an even greater understanding of the gift his birth made possible.

In order to receive, you must believe,
TPSPBM

Sunday, December 21, 2003 1:45 PM CST

Greetings from the Adams household.

First, the medical report, and sadly, the news is not good. Max's clinic visit on Friday showed his white blood cell continuing to grow the blast cells. He has over 250,000 WBC with 98% of them being blast. This is definitely starting to have an affect on him. The last couple of nights Max has has fevers as high as 103.5. He has had trouble sleeping for any length of time and has been very achy. Because Max sleeps for shorter periods, he has a tendency to sleep a little longer in the morning. This is a mini blessing for Mom, allowing her to get some rest as Mom is the only one who can truly comfort Max when he's feeling bad.

All that being said, we continue to try to have Max's days be enjoyable. Cousin Jake had his birthday party on Saturday. We made the decision to have Max stay home because of his previously mentioned night-time fever and even called Don and Sheila to let them know. However, when Max saw Bailey getting ready, he perked up and insisted on going. Once there, he was active and had a great time. It brings much happiness to us to have those times now where Max can have so much fun. Max even held up as the day progressed and we held the Adams family Christmas party at Uncle Dave and Aunt Nancy's house. It's as if Max is determined to do as much as possible that would be considered normal for a four year old boy and any negative consequences from those activities can be dealt with at a later time.

We have had so many people help Max keep his spirits up by sending gifts, ornaments, etc. that allow him to feel as if every day is Christmas. It's great to see his sidewinder smile as he opens his packages and spends time playing with those gifts. We really appreciate all your generosity. The Christmas season continues as we welcome Trish's brother Brad today from Colorado. The rest of the family will show up on Monday and Tuesday. We continue to hope that Max can be well enough to enjoy the week ahead. Thanks to all of you for supporting us in so many different ways. We are very blessed.

Please continue to pray for a miracle for our miracle boy.

Love,
TPSPBM

Thursday, December 18, 2003 0:07 AM CST

One year ago today we were given the awful news that Max's cancer had returned. At that time he was very ill and had been in the hospital for close to 40 days. I remember being told that even though he was so ill they would allow us to bring him home knowing that that would probably be his last Christmas.

We rallied the troops and God's soldiers went to war against his cancer. We are asking you to dust off those knees and get down and pray that God provide us with yet another miracle and again make Max's cancer disappear. Tis the season, let's ask God to touch Max with another Christmas miracle.

Thank you for your prayers, thank you for believing that all things are possible with God in our lives.

Love to all,
TPSPBM

Tuesday, December 16, 2003 10:06 AM CST

I cannot believe that it has been almost a week since our last entry. We have been kept so busy with the normal hectic schedule of preholiday festivities and taking time to make special memories with Max.

On the medical front....because of a mixup in communication between the hospital and homecare Max did not get his transfusion at home Wednesday and so we ended up going into short stay clinic on Thursday for platelets and again on Friday for a blood transfusion. The good news is that both gave Max the energy needed to have a wonderful weekend. We were back in clinic yesterday and again Max was in need of a platelet transfusion. The blood counts yesterday let us know that his blast percentage was about the same, 86 percent and his white blood count has increased to 138,000. I really don't know what else to say about those numbers, we do not let them dictate our days, Max gets to do that!

We did have a wonderful weekend. Friday we were treated to a limo ride and tour of Christmas lights. The kids had such a terrific time just hanging out in the limo being bigshots that the lights were an added bonus. We made hot cocoa and popped popcorn to bring with and had such a wonderful time being together as a family. Saturday we celebrated Uncle Don's birthday by going to the ChooChoo bar in Loretto and seeing the Canadian Express train all decked out in Christmas lights. The kids enjoyed climbing up on the train and seeing Santa hanging out in the caboose. Sunday was Bailey's acting debut and what a big girl she's turned out to be, I may be biased but the world has not seen a better skin horse! Monday we enjoyed going to the Christmas party at Bailey's dance school and tonight the kids and I are off to see the Wizard of Oz at the Children's Theatre. Max has already told me that he is going to give the "bad" witch the thumbs down and boo!

Through all of this Max has been amazing. He continues to enjoy each moment and spends every waking moment living to the fullest. He continues to want to live each day and has yet to complain of pain. We do notice that he is sleeping in a bit longer in the morning, but on the flip side he is staying up until midnight playing each night. Perhaps this won't last forever, and perhaps he'll start to fade soon, but for today he is so alive that we shout out our thanks for the miracle of today. I continue to be so proud of our son, he is teaching me so much about living and facing your demons head on and head up.

Please continue to pray for daily miracles of pain free, mobile days for Max...pray that they continue on for years to come.
Please remember Josh and his family in your prayers, he was an amazing little boy much older than his years and beautiful to look at, we will miss him.
Please pray for another of our friends, Kyle. He and his family are walking this same wicked road, unfortunately his is a bit bumpier right now. We pray for comfort from pain and strength in the days ahead.

Love to all,
TPSPBM


p.s. We also ask for a couple of extra prayers for Grandma Dee. Nana took a nasty spill on some ice at her house in Yankton, breaking her wrist and cutting her forehead. Get well soon!!!

Wednesday, December 10, 2003 10:18 PM CST

One New photo.

Today we had our first visit with homecare. A nurse came out and went through paperwork and drew Max's blood. They were going to call us back with results and set up a transfusion at home if needed but we ended up not hearing back from anyone until after 5:30pm. Max's counts are continuing to grow at an alarming rate. His white blood count is now 87 percent blast cells and has increased in count from 64,000 to 121,000 in just two days. His platelet count has dropped to a point that he will need to be transfused and so, because they were unable to set it up for today, we will be going back to clinic in the morning. Max's hemoglobin is also low, but since his energy level is o.k. and they do not want to transfuse him twice in one day, we will wait till Friday to get red blood cells. There! That's the medical stuff.

Max is still holding up so well, you would never imagine that he has cancer raging through him. He wants to take advantage of every moment playing games, doing crafts or just goofing around with his pets and family members. He knows how sick he is but he knows that there is still alot of living to do. He does get down from time to time and will find silly things to get mad at, he goes to his room and waits for us to come and offer a quick hug and then he's fine again. We have noticed that he is smiling more in his sleep. Yesterday morning he was in bed with us and he woke me up, I was worried that he was crying but quickly realized that he was giggling away in his sleep. I got up and sent the other kids off to school. Later, when he woke up I was getting him breakfast and told him that he woke me up. "What could you have been dreaming about?",I asked. As I was turning to face him he looked at me and said, "You know what I was dreaming about mom?....Jesus!" No matter what, Max is not alone, he knows that and Jesus is reminding us of that too.

We cannot prepare for Max's death because we are still full of hope....hope that he is again touched by a miracle that will forever cure him of cancer. Please continue to pray for that miracle.

Love to all,
TPSPBM

p.s. Max likes to be in charge of the backround and makes the selections himself which is why they change so often!

Monday, December 8, 2003 1:56 PM CST

We have been a busy family these last few days. Sammy and Parker both started things off by winning their first basketball games of the season. Saturday morning we enjoyed breakfast with Santa. We were able to decorate cookies and put as many sprinkles on them as we wanted. Max and Bailey both had the opportunity to visit with Santa and give him their Christmas wish lists. Bailey had four things on her list but Max could only think of one thing, Santa told him that if he left a note by the tree with other ideas that he'd stop by and pick it up at our house! Later that night we joined up with family to watch the Hollidazzle parade. We enjoyed the view from the heated seats and had alot of fun watching Paul's brother Larry and his family in their lit up snowman costumes.

Sunday we said goodbye to Nana and Papa as they headed home to South Dakota. Bailey had practice for her acting class, we are all excited to see her as the Skin Horse in next week's production of the Velveteen Rabbit. Mom met up with the sister-in-laws and friends to go see Mama Mia and take her mind off things for awhile.

Today we made another trip into the clinic. Max continues to enjoy the trips and is really feeling at home there. He is always looking for a new craft or activity to do, it is his version of preschool! Although he looks a bit pale, he is holding up well. So far he has not complained of pain and is still eating and running around like normal. We wish his counts were reflective of this, but things continue to progress in a negative way. Even though we've increased Max's dose of chemo medication, today's results showed that in three days his white blood count had nearly tripled, from 24,000 to 64,000 and his blast(cancer)cells now account for 79 percent of his white blood count. His platelet count has dropped but he is not yet in need of transfusions. We are scheduled to have homecare come to our home Wednesday and will have them prepared to transfuse him at home if necessary. I am not sure if we will be making any more trips into the clinic or not and so it was a bit sad leaving today. It is just not the ending we'd prepared for.

We are grateful for every good day that Max has and today is a good day. We know that each day is a gift and even the little things are made special. The other day the sun was shining in the kitchen. Max came into my room and told me to hurry up and "c'mon!". When we got into the kitchen I couldn't figure out what was so important and he kept pointing to the floor. Finally he said, "It's a rainbow mom, don't you see it? I found it for you.", and there it was shining in the reflection of the sun on the floor, a little rainbow of color. I told him that I would always remember our rainbow and think of him each time I saw one and it would make me smile. Max is our miracle and he continues to show me the miracles in our every day. I hope that you each have that person in your life to awake you to the day and to see God's beauty in it.

Please continue to pray for Max. Pray for a Christmas Miracle, that he be cancer free.

Sincerly grateful,
Trish, Paul, Sam, Parker,Bailey, Max [a.k.a. TPSPBM]

Friday, December 5, 2003 8:17 PM CST

NEW PHOTOS.


Tonight as we sat around the kitchen table visiting, Sammy taught Nana and Papa the sign for "hope" and made us each take turns signing "I still hope" and we did.....we do!

Our clinic visit was a difficult one for any parent to have. We had the DNR(do not resuscitate)talk and discussed what the next few weeks may look like. It was important to us that we have a plan for pain control in place and that we all had a clear understanding of what we'd like Max's last days to look like. That said, we all agreed that if at any time Max began showing improvement we could reverse any decisions and implement new ones. We will begin meeting with homecare/hospice next week so that we can familiarize ourselves with each other. The nurses that have cared for Max can attest that he warms up to people slowly and can be stubborn when he's not feeling well. We hope that we can begin building a rapport with the nursing staff at homecare now.

Max's counts today were disheartening. Even on his chemo medication his blast cells have increased to 64 percent and his white blood count has tripled. The cancer is growing rapidly and is beginning to take over his blood system. The bright spot is that his donor cells continue to be working properly and are cancer free. They are working hard to keep him healthy and feeling good. We pray that they get the kick in the pants they need and start playing a little battle with his leukemia.

Max amazes me everyday. He has taught me so much in the last weeks about what it means to live everyday of your life. He is still doing so well and to witness him in action is to have hope, he inspires you believe and to live for the day.

We are going downtown to have breakfast with Santa and later in the day will watch his Uncle Larry and Aunt Linda along with cousins Ryan and Danny a.k.a. the snowman family in the hollidazzle parade. We look forward to yet another beautiful day to be alive.

Appreciate the holiday season, all that it means and what it has made possible for us all,
TPSPBM

Monday, December 1, 2003 2:28 PM CST

Today finds things getting back to normal here at home. The kids are returning to school and activities while Max and Mom are back to clinic visits. Today's visit did not bring us any shocking news. Less than a month ago Max's platelet count was over 150,000 and today it was down to 38,000. We are expecting that by the end of this week, Max will begin needing transfusions again to maintain his platelet level. The other concerning news is that Max's blast(cancer cell) count is now 24 percent of his white blood cells and his spleen is enlarged a bit indicating that something may be growing there now too. We have filled the prescription for Max's new treatment and will begin using HYDROXYUREA this evening. Max will take one dose per day for two days and then have one day off. We know from talking to the doctors that this will not cure Max of his cancer, but we are hoping to prolong his life and give him the quality of life that he deserves. I do know that in the past Max has responded quickly to any chemo medications and with good results, it is my hope that he do so again.

It has been a treat to share Max with family and friends these last few days. I am so proud of him and it gives me joy to show others what an inspiration he is. We know that there could be many difficult days ahead, but for today, he is full of life...more alive than ever really....and enjoying all that the day brings. He is still needing to eat every 30 minutes and needs less sleep than the rest of us! We continue to hope and pray that he will again be blessed by a miracle and be cured of his cancer for good.

Max anxiously awaits the mail each day and has enjoyed his daily gifts. Thank you so much for taking the time out of your day to honor him and his life. His Tree of Hope is constant reminder that we are surrounded by the prayers and support of many.

Hugs to all,
TPSPBM

Saturday, November 29, 2003 3:21 PM CST

NEW PHOTOS.


Greetings.

We are home after a busy couple of days visiting relatives in Chicago. This last week has shown us in a very up close and personal way that one of the biggest things we have to be thankful for is our families. From Trish's family visiting our home to the trip to see some of our extended family, it really warmed our hearts to see Max having so much fun, with so much energy, playing so hard with so many different people and not having to worry about doctors, clinics and hospitals. We weren't sure if he would turn into Mr. shy boy in Chicago but he quickly joined with his cousins and siblings and went about the business of being a little boy. It was great to see.

We are off to Dave and Nancy's house to see Melissa and help celebrate her birthday while she is home from school. Although it's been said before, it's worth repeating. Thanks to all of you who continue to visit this website and support our family and Max through your words and prayers. It truly does help us get through the tough days and continues to show us the strength of the human spirit. For the army of people praying along with us for our Miracle Max, we thank you. We hope you have had the time to reflect on all that for which you are thankful. Our family blessings are many. Happy Thanksgiving.

LOVE,
TPSPBM


p.s. Max's next visit to the clinic is Monday, we'll update when we have new information.

Tuesday, November 25, 2003 10:16 PM CST

We are finishing our packing and readying ourselves for our trip to Chicago in the morning. We look forward to the trip and the kids are excited to get another chance to fly in an airplane again.

Max has continued to hold up like a trooper. He is eating better and has more energy than he's had in a long time. Sometimes it is hard to believe that this awful disease is stealing him of his time here with us. Well, when that happens you just go to the clinic and they snap you back to reality. Today we found out that Max's platelet count is continuing to drop...about 50,000 platelets per week, and today we were told that he has 8 percent blasts in his peripheral blood. The cancer has now entered his bloodstream and is therefore everywhere. We had hoped that it would stay away longer and that the doctor's would be wrong, unfortunately this is not the case.

I do know one thing. Today is a gift and for that I am thankful. We relish each day that we have and appreciate all that Max brings to it. We have enjoyed doing all we can to let him LIVE, we will worry about tomorrow when it comes. Thank you all for your support and your contributions to Max's tree of hope. We appreciate the community that has formed on this website and in our nightly prayers for Max's healing. We continue to pray that Max receive another Christmas miracle and be cured from his cancer forever.

As Thanksgiving approaches we are once again reminded of all the blessings in our lives. We thank you for your unfailing support and caring and wish you the best of days on Thursday.

Gobble, gobble,
TPSPBM

Saturday, November 22, 2003 11:18 PM CST

New Pics.

Greetings to all.

We have had a fairly action packed weekend as we head into Sunday. I arrived home from a day trip to Chicago to find Christmas lights had been hung and trees had been put up in various spots in the house. Thanks Papa and Uncle Brian for helping Max get them up. We feel blessed and want to thank everyone for their outpouring of support. Trish said she may have been the first person to buy a tree at Bachman's this year and Max's "Tree of Hope" already has many ornaments to decorate it. Our feeling is each of those ornaments represent many, many, many prayers and although the medical people have had their say of what they believe the future will bring, we have a very solid reminder that with faith, there is still hope.

Friday night was spent with Trish's family as well as Uncle Duane, Aunt Linda, Jason and Nikki. It was very nice to see everyone especially since it's not often that Brad and Brian are here at the same time. (We do however, miss seeing you Alane.) On Saturday, Max spent part of the day with all his cousins and their families at Chuck E. Cheese. He really had a lot of fun playing with everyone and all the kids were so nice in giving all their tickets to Max. In true Max fashion, like picking the smallest pumpkin at Halloween, he picked some candy, a sticker book and a small snow globe and that was enough for him. I think his favorite part was putting the tickets in the ticket counting machine.

Max continues to eat like he has a bottomless tummy. Although he is very particular about what he eats there is a continous path to the kitchen about every 20 minutes or so for what is next on the list. At times, all the activity makes Max tired but overall he's still a pretty energetic boy. We continue to appreciate each day and all those sharing them with us in so many ways.

Finally, we ask that you remember Noah and his family tonight. Noah is another courageous AML child who lost his battle and is now resting with God.

Love,
PTSPBM

Tuesday, November 18, 2003 10:10 PM CST

More Disney Photos.


We'd like to start off by saying thankyou to everyone who has reached out to us these last few days. Your kind thoughts and words ease the pain that we're going through as we struggle to accept the newest challenges facing Max.

Today we went in for labwork and the good news is that his counts are holding up well, no sign of blast(cancer)cells in his bloodstream yet. I was a bit worried because Max's energy level has dropped off quite a bit in the last few days, usually one of his early signs that bad things are cookin' inside. We also had a new hickman placed into his chest again, the two of us were glad to have it back, no more pokes! The upside is that our doctor who looks tough on the outside, is really a softie and so she gave Max his favorite thing....McDonald's money as a reward for getting pokes. We did have to promise no more crazy crawling under the bed stunts, not a hard thing to promise considering! We made it home in time for dinner( at McDonalds) and Max is resting comfortably. It is a bit scary just how routine these types of procedures have become for us. Now that his hickman is back in place we can begin some of the lose dose chemo. I will be talking to our doctor in the morning and will hopefully have a plan put in place. We also met with the homecare coordinator and will be expecting a visit from one of their nurses this week. We are planning to take care of Max at home as much as possible and their assistance will make it possible.

Please continue to pray for Max's healing from this dreadful disease.
Pray for comfort for the family as we deal with the realities of today, give us hope for tomorrow as we still believe!

We are grateful for our blessing named Max,
TPSPBM

Saturday, November 15, 2003 6:30 PM CST

NEW PHOTOS.


It was one of those beautiful fall days. The sun was shining bright in through the kitchen window as I stood at the sink. I could hear the sounds of the kids and the thought of them made me smile. About that time he came bounding into the kitchen, a rush of energy. "Hi Mom", he said in passing, stopping just long enough to plant a peck on my cheek. I noticed that he had finally outgrown me and that his curly locks were getting to that unruly stage again. But still...I smiled and I was happy.

And that's when I woke up. It struck me because it was the first time I'd ever dreamt of one of the kids in the future and I realized how much I longed for it to come true. It is my greatest hope.

Today we met with our doctor to discuss our plan for Max's future. We appreciate the collaboration of our doctors from both Children's and the University and the many experts that were consulted to determine what's next. We only wish that there was something encouraging to share.

We have found out some of the results from the intricate chromosome testing and it is not good news. Max had a bone marrow biopsy the middle of September that was completely clean, 100 percent donor. The biopsy conducted on Halloween day showed that he is now only 70 percent donor and that the 30 percent that is his old marrow has premature signs of leukemic cells. To make matters worse Max has developed a mass under his ear that was infected. It is a solid hard mass and they are quite certain it is another chloroma surfacing. "Mother's gut" has told me all along that something was there, so to say that it was a surprise would be a lie. There is an extreme amount of concern at how rapidly the cancer has come back and with the momentum it is building.

Because Max relapsed in just over four months post transplant he is not eligible for many treatment plans and our options are extremely limited. Things are just not looking good for us right now. We will be going back to clinic Tuesday and should have Max's hickman line put back in his chest next week as well. We hope to begin intravenous doses of chemo at that time. We are looking to slow down the progression of the cancer and buy ourselves some time. We will begin to work with home health care so that we are able to care for Max at home as much as possible. We will use this time to pray for a miracle, it can happen. We would need to get to the end of December before Max could begin some of the high dose chemos that could force him into remission and even then he would probably not be stable enough for a second transplant. Sad to say, our doctors are not convinced that we have that much time. They encouraged us to put our Christmas decorations up now and plan a mini holiday day to insure we will have the opportunity to do so as a family. We are also planning to make a trip to Chicago for Thanksgiving and so we will be partnering with the Children's hospital there to make sure it is a safe trip.

We want to do what's best for Max and give him the quality of life he deserves. We saw just how alive he can be in Florida and hope to continue living with love and happiness in the days ahead...even if our hearts are breaking. There is so much to say and no words that can express it....

Please pray for a miracle for Max, that his cancer melt away from his body and he be cured for good.

In God We Trust,
TPSPBM

Friday, November 14, 2003 9:33 PM CST

Hello from Minnesota!

We arrived home last evening, the end of a wonderful vacation. The last eight days have been just as promised, a wish come true. The days were filled with activities, fun,laughter and lots of ice cream and hotdogs!! We were sponsored by a nonprofit organization called Give Kids The World, they work with wish organizations to make children's wish trips to Florida come true.

We spent the week we were there taking in all that time allowed. We managed to see all four of the Disney theme parks, a day at SeaWorld and two full days at Universal. Everywhere we went we were treated to V.I.P. treatment...the best parking spots, no waiting in line, private meetings with the characters and many acts of random kindness by employees at the parks. There were many special moments in each day, I think we each have our own favorites, I know that we will treasure reliving them over again in the days and years ahead. The kids were at their best, the big kids especially. They were so good about catering to Bailey and Max, no whining and no constant begging for "stuff" I was so proud of them both.

We did manage to have a few highlights on the trip....

Max goofing around in the hotel room, crawled under the bed and managed to pull his hickman line out of his chest. He then climbed onto the bed where we noticed blood all over the bedspread. We called for help but managed to stop the bleeding before help came. We called our doctors who felt he was fine but the paramedics were a bit intimidated by the sickly looking kid whose face didn't work quite right and who was pale in color,so we took a quick ride in the ambulance to the emergency room where the Doctor felt much more confidant returning him to our care. It did not make our top 10 rides list!!

Max had an especially good time at Universal Island of Adventures. He was lucky enough to meet an extremely convincing Spiderman who was great with Max. We also rode the Spiderman ride which he loved and promptly wanted to ride again! It was one of the family favorites!!

Max also got to ride the Buzz Lightyear ride more than once and loved the Dinosaur ride at Animal Kingdom. Any ride he and Bailey were tall enough to go on, they did and seemed to enjoy them all.

We were proud of Bailey and her willingness to try all the rides, she especially like Space Mountain and made Dad go with her a second time to prove what a big girl she was.

The kids loved the Give Kids the World Village and had fun enjoying arcade games and free flowing icecream, to get an idea of what it's like check out their website at www.gktw.org.

There was a moment Wednesday night where I wished we did not have to come home and face the realities that await us. It gets harder each time to find the energy required to battle the demon named cancer. We appreciated the week to escape, rejuvinate and just enjoy each other free from all that cancer brings. Sadly, that all ends tomorrow. We meet with doctors Saturday and set a course of action for the days ahead. Pray for wisdom for us all as we make the important decisions that will effect Max's life. Thank you for your words of encouragement, we will try to update after we know more tomorrow.

Love to all,
TPSPBM

Wednesday, November 12, 2003 11:04 PM CST

NEW PICTURES CAME THROUGH...CHECK THE PHOTOS ICON (Papa)
Well, we tried three times to upload new pictures but for some reason they won't go. It's been a great week and we've had tons of fun. Once we're back home we'll provide more of the details.

Love,

TPSPBM

Wednesday, November 12, 2003 10:39 PM CST

They say pictures are worth a thousand words. Here's a few of ours. We'll update more once we're home but it's been great.

Love,
TPSPBM

Friday, November 7, 2003 10:52 PM CST

New Pictures.

Hello all from sunny and steamy Florida. It has been a hectic yet wonderful two days. Starting with the limo trip to the airport to leave cold cold Minnesota right up to typing this it's been an action filled two days. We have had a blast, Max especially. There have been many special moments already. It has been overwhelming to feel and experience the outpouring of support from so many different people and places. Our first stop at Give Kids the World really got us off on the right foot. After checking in, we got to the really important stuff, namely ice cream for everyone. We spent time on the merry-go-round, went on a carriage ride and played many games in the arcade. They also had a Christmas party with Santa Claus and fake snow but the kids quickly realized coming from MN. they didn't need to spend a lot of time with that when there was so much else to do.

Today was our first full day at one of the parks and we went to MGM Studios. It honestly was a little emotional to realize what great people are involved to make this such a special visit for Max and our family. We felt a little awkward going right up to the front of the lines and sitting in the front row at the shows but it really made it great for us. Max got to see Woody and Buzz almost right away. We were at the back of the park in the Pizza Planet with hardly any people there and in walk two of Max's favorites. He was lovin' it. Bailey and Max of course got out their autograph books which really was the start of a great day for the kids meeting characters. Bailey and Max both said their favorite thing was the Star Wars ride. We did see Little Mermaid, Beauty and the Beast and the Muppets as well.

As for the big kids, the day started with Tower of Terror and the rides ended with Aerosmith's Rock 'n Roll roller coaster, which was the first roller coaster ride for Parker. He went twice to give you an indication of how much he liked it. The day finished with us in downtown Orlando to watch the T-Wolves put a thumping on the Magic. Thank you John Jacobs for all your efforts to get us the tickets. The only disappointment was Max feeling kind of wiped out by halftime so we couldn't stay for the whole thing.

You can see from the pictures that Max's face still is experiencing some of the temporary paralysis but being the trooper he is, he held up amazingly well. There were times when he became very shy with all the attention he was receiving but overall he was so excited. There's more to tell but Dad needs sleep to prepare for another full day of shoulder rides. I mentioned at the start that we have received a lot of help and support since coming to Florida literally too many names to mention. We would like to thank all of you for that, it means a lot to us. Special thanks to Aunt Linda for her efforts to insure our week will be spent in beautiful surroundings.

Finally, please keep our friend Noah and his family in your prayers-he is very sick with his AML.
Love to all.

TPSPBM

Wednesday, November 5, 2003 11:36 PM CST

New Pictures!!

Paul and I are finishing all the last minute touches before we get a few hours sleep. The Limo will be here at 5:30 in the morning to drive us to the airport..I'm excited to see the kid's faces when the big long car pulls up. We are hoping that it is the beginning of a magical week!

We wanted to take time out to thank all of you who have reached out to us the last few days. You have helped us more than you can know. We feel a renewed energy and willingness to face the giant yet again, aiming for victory when we return! We will try to post pictures at least once during the trip and will check in now and again.

We had a bit of a scare this morning, Max was not feeling well and then the left side of his face where he's been battling the ear infection fell, drooped, stopped working. Thankfully, a doctor's visit and CT scan proved it to be a nasty sinus infection. The glands behind his ears and the sinuses are full of fluid making Max a miserable boy. We were able to change up his medicines and add additional ones to make him more comfortable throughout the plane flight and the week that follows. They believe that because of the infection Max developed Bell's Palsy, meaning that the seventh nerve in his face became overloaded and stopped working. He should start feeling better soon, but it may take the entire trip before his face stops drooping. To be honest, we were a bit worried that his cancer had found a new home and our trip would be delayed. We are grateful that it is at least something managable allowing us to leave on schedule.
Perspective is everything.

Please pray that Max has quick relief from his infection.
Pray that the cancer remain at bay while we are away.
Pray that Max be cured from cancer for good
Pray for a safe return for us all.

We continue to be inspired by you all,
TPSPBM

Monday, November 3, 2003 1:59 PM CST

It is amazing how so much can change so fast. The test results have come back and the mass they'd removed was indeed cancerous...it's back. The good news, if there is any, is that the bone marrow biopsy and spinal fluid test both came back negative, no signs of cancer cells in either. This buys us some important time of which we will take full advantage.

We spoke earlier to a gal from Make A Wish, an organization that grants wishes to critically ill children, our doctor had called them this morning and requested that they make Max's wish come true for him, yesterday! We all know by now that what our doctor wants, she gets, and so the Adams family will be leaving by plane for a sunny week at DisneyWorld this Thursday morning!! We have yet to find out the specifics of the trip, but do know that we will be gone through the following Thursday. It will be a wonderful chance to bond as a family, build some lasting memories and get away from the realities that await our return home.

Our plan is to sit down with the doctors when we return on Friday, weighing out all the options and trying to determine what, if anything will be our next step in battling Max's cancer. Because it is so soon after transplant, because of all the high dose chemo he has already endured and the burden it has placed on his organs, our options will be very limited, and whatever we do will most surely make him very sick(our doctor's words, not mine). Paul and I will use the time away to pray for guidance, that we make decisions on treatment based on what is best for Max and not ourselves. I had spoke to the chaplain at Children's when Max was in for surgery. He laid out a set of words such as smile, hope, faith, love, happiness...he asked me if one stood out to me, a word that I could hold on to to help us through these next few weeks. I picked the word TRUST. Trust in our doctors, trust in ourselves and mostly trust in God. I do not understand why this is all happening to Max and I do not know God's plan for him, but I do know that he has one and it must be glorious.

Please pray that our trip is a safe, fun filled trip.
Pray for strength for the family as we face yet another challenge.
Pray for Max, that he remain healthy throughout our trip, that he have the time of his life.
Pray that the answer to beating Max's cancer await our return, allowing Max to forever be cancer free.

The last few days have been very difficult for us, thank you for your kind words to help us through,
TPSPBM

Friday, October 31, 2003 6:07 PM CST

You'd think that by now our Max could catch a break, but not so.... this morning we went in for Max's procedures, not only did they do the exploratory on his testicle, they also did a spinal tap and bone marrow biopsy. If there is a concern that the cancer is back, we need to know where it is affecting him. Well, they started by making an incision in his groin area, near his left hip maybe a half an inch long, they pulled the testicle out and found a solid white "suspicious" mass adhered to it. Unfortunately, and after many discussions, they had to remove it. I knew that I would never let someone remove my breast without knowing for sure that it was necessary, I took the same care when it came to Max and his situation. Knowing this, they had two pathologists with them during surgery, and it was their concern that the mass was cancerous that gave cause for the removal. I think it's funny that Max called it his marble, because God willing, he will grow up with exactly that in place instead of the real thing.

They have sent the slides away for the chromosome testing and may not know the results until Monday or Tuesday of next week, but will hopefully hear something this weekend. The surgeon, our doctor and the pathologist all fear that his cancer has resurfaced, but we wait for definitive answers and pray.

We are grateful we were able to be home in time for Halloween festivities. Max is already feeling better and just came back in from his mini round of trick or treating to help Mom give out goodies to others. I think our friend is right when she said that Max needn't wear a costume for he is surely Superhero enough on his own.

Please, PLEASE, pray for Max's defeat of this awful disease. Pray that he be forever cured of cancer.

Love to all,
TPSPBM

Thursday, October 30, 2003 6:56 PM CST

Day 139

Calling all prayer warriors!! We once again find ourselves facing another challenge. Tuesday, Max began complaining about some pain in his "marble" or testicle. It took one look to see that it was enlarged and had reddend quite a bit, it was no longer a matching set and twice the size of the other one. After speaking to the clinic yesterday and feeling uneasy this morning I called to request that a doctor take a peek today,instead of the planned for Friday. After a physician visit, an ultrasound and a consult with a surgeon/urologist the news is a bit uncertain. What we do know is that there is definitely something there that appears to be a hard solid mass. The makeup of the mass is unknown and could be many different things, a blood clot, a fractured testicle, an enclosed infection, fungus or a tumor. The doctors say that it is uncommon for AML kids to relapse in that location and that when the ALL(the other common leukemia)kids relapse there it usually does not present itself as red and painful, which Max's is. The radiologist seemed to think that it looked like blunt force trauma and would get better on its own over time. The surgeon, and ultimate say, is concerned that it may be a tumor and thinks that we need to find out a.s.a.p. We will be bringing Max in for surgery in the morning. Hopefully, we will be back home that afternoon in time to enjoy the Halloween festivities as a family. Just in case, Max is planning to wear his Batman costume to the hospital!! To top it all off Max has developed a massive ear infection in his left ear that has been draining like crazy but doesn't seem to bother him much.

Please remember Max and his battle in your prayers tonight. Pray that this is but a minor bump in the road to complete recovery. Pray that Max continue to remain, cancer free.

We will update with results as soon as we know anything,
TPSPBM

Sunday, October 26, 2003 8:25 PM CST

New Photos.

Greetings,

The Adams family is wrapping up an activity filled weekend. It started out with a pizza party at Aunt Linda's house on Friday night. We got to see cousins Ryan, Danny, Jake, Zach and Mitchell along with Aunt Linda and Uncle Don. ( Uncle Larry is in L.A. and Aunt Sheila was volunteering at church) On Saturday we spent time raking leaves at our house and our neighbor Ralph's house. The kids had more fun jumping into pile than raking but we did get more leaves off the yards. That night we went to a fundraiser Halloween party at St. Bart's and again got to see some of Max's cousins, this time in their Halloween costumes. It was a lot of fun but kind of hectic with all the kids.

On Sunday, we attended a service for Rachel, a little girl who has cancer and was at Children's some of the same time Max has been there. She was his "little" girlfriend when we were there. It was a very nice prayer service. The Hansen family had invited all families who know of a child fighting cancer to come and light a candle. As we lit our candle, an update was read as to Max's current condition. It was very hard to listen as so many names were read, but it was also very moving. Thanks to the Hansen family for inviting us. We have had to say goodbye to too many children this year, it was refreshing to be able to celebrate the successes too.

As for Max, he's moving in the right direction although slowly. His stomach and digestive system also are showing signs of more normal function. We are grateful for the chance to rebuild Max's appetite and his ability to eat. After four months of not eating his stomach has shrunk to nothing and so it is taking time to stretch it back out to is regular size, until then it is just tiny portions at a time. He currently is drinking about 3/4ths of the quart of fluids the doctors would like to see but it seems like it gets a little easier for him everyday. He is eating more, although he probabaly eats only about 20 percent of the food he asks to be made for him.

The kids are looking forward to trick or treating this Friday and maybe Max (a.k.a. Batman)will eat some of his yummy candy. We hope you all have a great week. Thanks so much for continuing to check in. We feel your support.

P.S. Thanks to all of our friends at TGIFriday's, who picked the Hope for Max fund as their charity at the recent Twin Cities Bartender Championships. We are very grateful for the gesture.

Sunday, October 19, 2003 8:47 PM CDT

New Photos!!

We are home!! Max left the hospital early this afternoon after receiving a blood transfusion due to a low hemoglobin level. We are thankful that we were able to stay ahead of whatever it was that had Max so sick and in pain. It was difficult for Max to be secluded in the isolation room, especially when he remembered all the fun things there are to do at Children's. He kept mom busy running to and from the playroom to get games and puzzles to play with.

We took advantage of being there and had conversations with the dietician, psychologist and our doctors about taking some action to move forward with Max and his lack of eating. We did come to an aggreement that a G/J tube would be the best way to go. This is a feeding tube that is inserted through the abdomen and into his GI tract to allow us to feed him and better yet, to get his digestive system working again and to stretch his stomach out, forcing him to get hungry. Our plan was to wait and insert it in the next week or so, then this morning Max's oncologist took a leap of faith. She thinks that he will eat if we give him a reason to and so she has stopped his TPN for the next two days. As she says, "Just look at him, he's not going to starve to death, besides, I think he'll eat!" Please pray that she's right, it would be a huge relief to us all.

When Max's mouth became full of sores and his energy level dropped, it was hard to not immediately feel the fear that his cancer was back. While we hate that he was sick, we are grateful that it was not lifethreatening. Please continue to pray that he and all his buddies remain cancer free for years to come.

TPSPBM

Saturday, October 18, 2003 2:42 PM CDT

Still no official word on Max's latest setback. Unfortunately the blood cultures for viruses can take up to a week to come back and so we will wait to know for sure what was the total cause of his ailments. Some of the indicators for Shingles have subsided and nothing has presented itself in the way of a rash. We know that the cultures from his mouth sores did come back positive for herpes simplex, so it was most likely a mouth full of coldsores. The good news is that after having been on I.V. meds for two days he slept comfortably and awoke his old self this morning. We will be watching him closely the next few weeks and continue on maintainance meds for "awhile". We are just grateful that our Doctors were aggressive in treating Max, preventing it from blowing up into something lifethreatening.

The family has enjoyed this short stay at Children's, it has been nice to see friendly faces and catch up on everyone here. There is such a difference in being here when you know that it is just a short stay vs. the long stays of the past. Bailey loves the chance to be back and cried when she had to leave last night, after all, it was our second home for the last year!! We are hoping to be discharged tomorrow, Monday at the latest.

Please continue to pray for Max as he continues to face the challenges of recovery.

Big Hugs,
TPSPBM

Thursday, October 16, 2003 2:15 PM CDT

Just when you think things are getting back to normal......

Yesterday was supposed to be a fun day, my birthday and all, but Paul and I spent most of it worrying. Max, had not been himself, his face was getting swollen around his neck and by bedtime was complaining of pain in his left ear. He woke up this morning with mouthsores on his lips and gums. Well, to make a long story short, we are in the hospital again. We will be spending the next few days there waiting for results from blood tests. Max is in an isolation room since his symptoms are looking like a virus, possible shingles. We will update when we know more but are asking for your prayers for our, very unhappy to be back in the hospital, kid. Please pray that he recover quickly and painlessly from this latest setback.


Thank you to all the parents that are stepping in to help with our other children during this long weekend.

Love to all,
TPSPBM

Friday, October 10, 2003 8:22 PM CDT

Today was our second clinic visit to Children's hospital. It is interesting to me to watch Max's reaction to being back. He calls it his "other" hospital and loves to point out all the fun things about it such as the gift shop, big bird greeting you as you walk in, and the great selection of vending machines. He seems genuinely happy to make our visits and has many positive memories of our time there.

Max is continuing on. The length of time it takes to recover from transplant is such a test of faith. It is hard to not get frustrated at times, I find myself wondering if Max will ever eat normally again. If he were just a bit older and could understand better I think he would be a more willing participant. For now, I must just be patient,it WILL happen.

We are closely watching some of Max's kidney and liver function numbers. Because he is not drinking enough on his own, we are needing to give him additional fluids along with his TPN (food in a bag) at night to prevent these numbers from creeping up. He is "drinking" about a two liter jug of pop every night and we are hoping these fluids will keep his numbers in line. Unfortunately what goes in must come out and so, we are up every three hours each night making sure the bed stays dry. I don't think I could sleep through the night now even if I wanted to!

On the good side, Max's blood counts continue to look good. He is looking more and more like a normal little boy...Dad even took him to the barber and got his neck and sideburns buzzed!! We were able to start weaning him off his antirejection medication, CSA, and we are in our third week of reducing his dosages. It will take us until December to complete the weaning but starting next week will be able to eliminate one of his three doses. Progress!! We continue to pray that his body handles this process without any signs of rejection.

We also met with the pediatric eye specialist. After running a battery of tests, we were relieved to find out that Max's eyes are functioning well and show no signs of trauma from his radiation treatment. We will continue to monitor him every six months, keeping an eye out for any cataract formation. The doctor noticed Max's two different eye colors and asked how long they'd been that way. When we told him that he'd been that way since birth he said that that explained alot of what we've been seeing with Max's eye appearance. A slightly different pupil size and the difference in the ability to open each eye are often common in people who were born with two different color eyes, and while they would be cause for concern in others are accepted as normal in folks like him. You see, I just notice every little thing now but it was probably always there.

Please pray for Max's continued recovery and return of an appetite. Pray that he remain cancer free.

Lastly, we ask that you all include Noah and his family in your prayers tonight. They are praying for a miracle as Noah struggles to gain control over his cancer.

Love to all,
TPSPBM

Sunday, October 5, 2003 11:13 PM CDT

NEW PHOTOS!!!

Greetings to all. It's the end of a wonderful weekend for the Adams family. Max had a great time on his birthday yesterday. We spent part of it attending a party with other kids who are fighting cancer and their families. It was held at a pumpkin farm west of Minneapolis. It was an absolutely beautiful fall day and the kids had a lot of fun playing games, going on a hayride and picking out pumpkins. Max chose to send us on a long hunt for the smallest pumpkin. After several tries that didn't meet his criteria, he finally found one that he deemed small enough. It was also good for Mom to see some people who she's met on our journey and spend time catching up.

The rest of the day was spent opening gifts, eating cake and relaxing at home with Nana, Papa and Uncle Brian. Thanks for those that sent Max presents, you're all so generous. It was hard for me not to think back to our meeting with the doctors and Children's before Christmas last year when there was so much uncertainty about our little guy. To see Max with his ear to ear grin as he went through his golden birthday was a perfect present for his Dad and Mom.

On Sunday, Larry and Linda and the boys came over to visit so Max was able to continue celebrating. Max had a good time racing cars on his new Hot Wheels track. Dad tried to get Max to watch the Cubbies with him tonight but after the Twins flopped, Max didn't have a lot of interest. It was quite a night for a lifelong Cub fan. It was also quite a night to be a Cub fans' wife so you could make fun of your geeky husband as he finally saw the Cubs win. She'll never understand. Anyway, we continue to celebrate each milestone with our miracle boy and appreciate very much all of you who have cheered us and supported us during the highs and lows. Love to all.

TPSPBM

Tuesday, September 30, 2003 2:04 PM CDT

It's official!! We have been given our walking papers and can once again return to Children's hospitals for treatment! We will have our first clinic visit there next week and look forward to seeing the many friendly faces we've spent the last year getting to know. I must admit that I felt a bit overwhelmed towards the end of our visit at the University today. How do you say thank you to people who have given you back your child? We continue to thank God for Dr. Ramsey and her staff, what remarkable people they are.

Max's test results were just what we'd hoped they would be, he continues to remain fully engrafted and is building his cellularity to a normal range. They did discontinue most of his meds today and while I am happy that HE no longer needs them, I am sure that I felt more secure in his health giving them to him!! Only time will tell.

We want to thank our friend Joanna who gave me some great advice about the psychology of eating and children. We have been using it and Max's is beginning to show an interest in food again. We still have a long way to go but it's good to be making progress!!


In four short days Max will be turning four. It will be his golden birthday and rightly so. THANK YOU GOD!! I can remember many days talking to Max about all the things he could do if he just made it to four. He, just like so many children, wants to go to DisneyWorld for his Make a Wish dream. Unfortunately they don't grant travel wishes for kids under four and so we made a plan that Max would turn four and then our family could go and celebrate with Mickey Mouse. We hope to begin work on his wish soon.

Pray that Max continue to remain cancer free. That he continues to improve and work toward recovery. Mostly, just pray, that he make it to five.

Big hugs to all,
TPSPBM

Wednesday, September 24, 2003 1:30 PM CDT

I can remember a time when I would get so frustrated being kept waiting at a doctor's office, or have a quick appointment take a couple hours. Oh, those were the days!! Yesterday we arrived at the hospital at 6am for Max's biopsy, the actual procedure was not until 8am but you need to go through all the prep (which incidentally takes all of 30 minutes tops) first. We finished up in recovery only to find out that Max's hemoglobin had dropped and he needed a blood transfusion so we headed over to the clinic and finally ended up at home sometime after 3pm. The good news is that the preliminary results all came back positive, we look forward to the conclusive results the end of this week.

Our doctor had a scheduling conflict and so we had to reschedule our meeting for next Tuesday instead of this Friday. We will be reviewing all of Max's results an discuss the plan for him moving forward, kind of a wrap up if you will.

Our biggest concern right now is Max's eye that had the tumor and thus, the additional radiation. We are noticing some subtle changes in its appearance and are wanting to meet with a specialist to make sure that it is nothing serious. We do know that almost certainly, Max will have cataracts on one or both eyes. We also know that he may have some issues with how his bones grow around that part of the eye. You can see a bit of what I mean if you look at the big picture on our front page and then click on the view photos link at the bottom of the page, on that first picture of Max you can see the difference in how his eye looks, he's just not opening it up the way he used to. The good news is that from what we can tell he still has good vision in that eye, so at least he can see out of it.


Pray that Max remain cancer free.
Pray for our friends Christie and Rosie as they continue in there recovery from their transplants.
Pray for Noah as he struggles to gain control over his leukemia.

Love to all,
TPSPBM

Sunday, September 21, 2003 10:04 PM CDT

Day 100!!

I really don't have much to say, but because this is a milestone day in Max's recovery I feel a necessity to make record of it in our journal here.

We were able to celebrate our day be attending Mass together as a family for the first time in many months. It was touching for us to have Max welcomed back into the community by our Deacon and so many others in attendance.
Max was excited to hear his name said aloud in the prayers for the sick, if he only realized how many people have been praying for him.

A big thanks to the Ruhland family for sharing the day with us. Seeing our two Max's running around and just playing like kids was proof that we're on the road to recovery. It's nice to be venturing out into the "real" world again!

We forge ahead, ready to tackle the next hurdle that lie ahead.
TPSPBM

p.s. your prayers must be working again, Max is actually starting to drink a bit more and is back to the nibbling phase of eating!

Thursday, September 18, 2003 11:05 PM CDT

Day 97

I am enjoying a few moments to myself, Max has a I.V. med that will be finishing up in the next hour and so I use this time to enjoy the quiet of the house. It is amazing how the kids fill it up with life, just being themselves.

Max's clinic visit was a good one. We started off in radiology waiting for his chest xray. A man sitting there took an interest in Max and started visiting with us. He was a cancer survivor who was there for his final 5 year checkup. I told him that I thought he was there as a sign to us that that was our destiny....he said he thought I was right...it will happen.

We are seeing continued advancement in Max's counts and they continue to be pleased with his progress. We got to discuss the whole DAY 100 thing and what it really means. They explained it as an arbitrary line that they've drawn. Even though it will take Max's immune system a full year to get to a safe level and up to two years to get back to normal, 100 days post transplant is a bit like taking the first step to that recovery. It is usually at that time that they begin to create their own T-Cells that will now help him to fight off some of the viruses that could have been damaging in his state. It is also around this time that the risk of acute GVHD(graft vs. host disease) is reduced.

Tuesday, we will have the rest of Max's tests done. Because of how his counts are reacting and how he is doing, we are not expecting anything new in the results. After that we will meet with our doctor on Friday to wrap things up. They had told me that at that time we can eliminate quite a few of his meds, leaving him with one drug he would take on Mondays and Tuesdays (one dose each day) and his CSA, an antirejection drug he will be on until Day 180 when they will start to wean him off it. You can't imagine how liberating that feels to hear such news. My world will not revolve around the medicine doses and Max and I will avoid many daily battles.

The best news is that after next week, if things go as expected, we will be returning to the University only for milestone checkups. Max is stable enough that we are able to return to Children's hospital for treatment. Yipee!! We truly are moving toward recovery.

Pray that Max remain fully engrafted, building a strong new immune system.

Pray that he begins showing an interest and ability in eating.

Pray that this is it, that Max is cured for good from cancer.

Pray for our AML friend Rosie, who is undergoing her Bone Marrow Transplant tomorrow and for her father Dan, who is her donor.

Pray for Noah, another AMLer who is struggling to get his leukemia under control.

THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU

TPSPBM

Monday, September 15, 2003 4:37 PM CDT

Day 94

Sorry it's been so long between updates. Fortunately for us, it's mostly because there is just not that much to report. We did end up getting a blood transfusion on Thursday. The transfusions always do Max a world of good. For the next few days after one we get a glimpse of what Max will be like when he is able to produce enough of his own red blood cells and have an energy level equal to "regular" kids.

We are continuing on status quo. Max is still not eating or drinking much, which is very discouraging to us since he had been making good progress. He has the desire to eat and will put things in his mouth only to gag trying to swallow them. One doctor explained it to me by asking me if I'd ever had an instance in my life(college) where I drank just a bit too much of something (yukon jack) and now just the thought of it makes you queasy(yes). Well, Max's body reacts the same way to food and will take time to reaclimate to the idea of food being a good thing and not just something that makes you puke. He is also dealing with messed up tastes buds that gives most of what goes in his mouth a metallic taste. It's a marathon folks, that's all I've gotta say!!!

This coming Sunday will mark Max's Day 100, and so the next eight days will bring more tests. We have a chest xray and blood tests tomorrow. The following Tuesday, we will have another bone marrow biopsy to make sure that the donor is still fully engrafted and doing the work to produce Max's new immune system. The day itself will end up being just an ordinary day but an emotional one for us and a milestone in Max's recovery. Please say an extra prayer that all news coming our way will be promising and celebratory.

Thank you for staying with us as we journey on....
TPSPBM
Trish,Paul,Sam,Parker,Bailey and Max

Wednesday, September 10, 2003 5:27 PM CDT

A quick update today. We had our scheduled clinic visit yesterday. I was glad to go, I had been a bit concerned about Max these last few days. Although his energy level had stayed the same, he has stopped eating any real food and complained that his tummy hurt. There are no symptoms of GVHD and no fevers to report so I assumed he had caught some kind of bug and is having a hard time shaking it. The doctors told me I was the third mom that day with the same concerns. It was reassuring to see that all his counts have remained stable with the exception of his red blood cells. We will be going in for labs only to see if Max's hemoglobin has dropped so we can plan for a transfusion if necessary. We were told that it is common for kids to be a bit anemic at this stage as their blood types are completing their changeovers for good.

I was asked if I would be willing to meet with some of the board of directors for the Mpls. and St. Paul Childrens Hospitals at their quarterly meeting and share our family's story and experiences. It was a privilege to speak on behalf of all the families seeking care at Children. I was touched to see their responses and to know that our opinions are important. It really is a wonderful place to be miserable!!

Tomorrow is a big day for our AML buddy Christie as she undergoes her cord blood transplant. Please say a special prayer for her as she faces the challenges that the next few weeks bring. Go Christie!!

Please continue to pray for Max's improvement. Pray the he continues to remain 100% donor and cancer free. Pray that his appetite return and that he begins eating on his own.

The earth is full of heaven....
TPSPBM

Friday, September 5, 2003 7:24 AM CDT

September 5,2002

It was a day so much like today. Paul was out of town with work and I was busy trying to get the kids ready and off to school. Sam had volleyball practice that day after school and I had volunteered to pick up two other girls along with her and bring them home that afternoon. Max had been having persistent swollen glands that I thought were causing his lack of appetite and so, we were going to make yet one more trip in to see the doctors. I had been calling or taking him every couple of weeks and was contemplating cancelling that day's appointment. After all, the antibiotics from the last visit seemed to be helping, he was getting better. I decided to take him anyway, he was better but still not normal, and besides....I knew in my gut that something was wrong, I'd known it all along. This time when I talked to the doctor I reminded him that I had four kids, that I didn't bring my kids in for the sniffles. I told him that I had had a bad feeling when Sam was a baby. Nobody listened then either and I was right about her, could he please just trust me now. Well, 20 minutes and one simple blood draw later it was confirmed...LEUKEMIA....sometimes mothers really do know best. I still remember what we were wearing that day, I still remember the helplessness I felt. I remember the trip to Children's for what I thought were going to be more tests and being told,"you're not leaving today, you're going to be here for awhile". If I had only understood what that really meant........

Price of a soda in the University vending machine $1.00

Cost of a one month parking pass for patients $40.00

Cost of one year's treatment to rid my son of cancer over $800,000.00

Having our son still with us, alive, one year later...priceless.


Thank you for all you've done to help us through this last year. We truly could not have done it without you. Perhaps you're the neighbor that mowed our lawn, the friends that stocked our fridge with a homecooked meal. Maybe you were the parent that offered to help with the other kids. You could have been the person that sent a package or card to lift our spirits, maybe you sent a few. In times of need, you may have been that person that typed just the right words on this website to get us through another day. Perhaps it was your voice, joined in the prayers of many, that provided the hope and strength and grace to get us to today. It all mattered...alot. There are no words to express what it means to us, we know, because we've been searching for them this entire last year. So as always they're short, simple but hold a mother's heart worth of gratitude....THANK YOU.

Please continue to pray for Max as he continues to battle on,
TPSPBM

Tuesday, September 2, 2003 1:40 PM CDT

Day 80

We just got back from our clinic visit today. The additional fluids we've been giving Max seem to have done the trick. We were happy to see that the areas we were concerned about have come back to a more comfortable range. We will have to continue on giving him more fluids for the time being, it will provide him that extra flush his kidneys need to rid itself of his built up toxins.

Max's other counts are either staying very stable or rising in a positive direction. His ANC stays around 4000 and his platelet count was 83,000 today! Our doctor told me that only around half of the BMT patients have a platelet count of 50,000 at Day 100 so we are happy to see Max's where they are....go Max the Builder!! The best part of all this is that because of how he's doing, the doctors cancelled his Friday appointment and now wants to see us just once a week. We are hoping that this lasts for more than one week...keep saying whatever prayers you've been for Max...they're working.

Ryan,Nathanial,Christie,Drew,Ryan H.,Mason,Jake,Rosie,Noah,Priyanka,Sean,Stephanie and Max. A year ago at this time I would never have imagined knowing 13 children with AML, one being my own 2(now 3) year old son. But I have. In one year. Sadly, we've said goodbye to Nathanial, Ryan H., Priyanka and today, to Mason. Please continue to pray for their families as they deal with their loss. Pray for the rest of the children, who at various stages of treatment, deal with the reality of the disease daily. I hope the end of this next year finds us with 9 kids still holding the title of SURVIVOR.

And that's just the kids with AML.......


Your support is always appreciated, never forgotten and always uplifting,
TPSPBM

Friday, August 29, 2003 5:45 PM CDT

New Photos!!

Day 77

We continue to move ahead. In so many ways Max seems to be improving, his mobility and energy level have been so good and his blood counts are continuing to rise. We hang on to those things as a sign that he will make it through this latest journey. We are still going in twice a week to meet with the doctors and have begun working with a dietician to keep Max's nutritional levels where they need to be while we work towards weaning him off his TPN, food in a bag. We had noticed that a couple of Max's numbers, his BUN and ALT numbers have started to elevate. These numbers are related to kidney functions and so we are increasing the volume of fluid that he is receiving and encouraging him to drink more. His kidneys have had to work so hard to rid itself of all the toxic chemicals we put in his body so it's not surprising to see this happen. His are still fairly low in comparison to many others, but we cancer moms worry about everything. We would hate to end up on dialysis after all we've been through, so pray that the additional flush of fluids do the trick.

Katielynn, our babysitter has left for college today. We are grateful to have had her help these last three months and wish her the best. We have also been preparing for our kids to start school and have yet another stack of paperwork to fill out in the next four days. Life goes on.....

Thanks for continuing to check in,
TPSPBM

Wednesday, August 27, 2003 9:57 AM CDT

Day 75

We continue on...we're moving in the right direction but the road is sooo long. I was told that Max's immune system will take a full year to make it into the safe zone and up to two years to get back to a normal level. With the exception of pictures before the Twins game we are still being very protective of Max and where we go and what we do with him. Honestly, I'm more worried about the kids going back to school and what kind of bugs they'll bring home to share!

We have been so fortunate in our experience so far with Max's transplant. He is still doing so well for where he is at in the timeline. I need to learn to rejoice in the success of today that the rest will fall in place. I think because he is acting more like a kid than ever, it is easy to invision our lives getting back to "normal" again. Max continues to build his immune system counts, his ANC is actually over 3000 without the aid of any medication to boost it up. His white blood count and platelet counts have stayed ahead of where most are at his stage. Please pray that Max continue to remain stable as we work our way to Day 100 trying to avoid any development of GVHD.

Max is fun to look at now. He has begun growing his hair back. With the help of his medication his body is now covered with a light fuzzy layer of hair, his butt looks likes two little peaches and his back is giving us a preview of what middle age may bring. Until he weans off the medication we won't truly know what his haircolor will be, but it is still nice to see it growing back...even if he has just one big eyebrow!

I need to go, tragedy has stuck, our fish Alane seems to be floating and not moving. I feel another ceremony by the toilet coming.

Please pray that Max continue on the path to good health and a cancer free life.

Pray for Noah, an AMLer struggling to make it into remission.

Pray for Christie, our friend that is finishing up her workup week before starting her journey through transplant.

Pray for Priyanka's family, that God provide them the strength to get through this difficult day of services.

TPSPBM

Monday, August 25, 2003 7:49 PM CDT

NEW PHOTOS.

Day 73

Greetings to all. We go along on the course we've been on which for the most part continues to be very good. Although the doctor in the family is not doing the update, the medical news is much of the same. Max got a transfusion today as his counts were a little on the low side. That was cause for concern for Mom but the doctors didn't seem overly concerned. Max also continues to have a liver function count which is elevated but the elavation of the count is caused by the cyclosporin he takes. The normal range tops out at 50 and Max's count is 70 but the doctors say they won't start to worry until it hits 200. Keep in mind this is Dad with the update, if you want the official Adams medical report you need to wait for Mom.

Life at the Adams house continues to slowly ease back to normal. Max and Dad went to the Twins game on Saturday. It was picture day so we were allowed on the field before the game to take some pictures of the team. Mom actually is out of the house tonight judging bartender olympics @ the Coon Rapids Friday's. We hope she's having some fun, she certainly deserves it. It's been nice to continue our days spent at home and we're starting the process of getting the kids ready for school. The girls got some outfits for school while they were visiting Nana and Papa. When we asked Bailey to thank Grandpa her response was, "Why? He didn't go shopping". We'll say thanks to both of you. We gave away some of the clothes that no longer fit the kids and Trish has been a on a mission to rid the house of things we no longer have use for as Max and Bailey get bigger.

Sadly, this update reminds us that we are never too far from a family that is experiencing things far worse than anything we've been through. We found out early this morning that Priyanka, a beautiful little girl, lost her battle to AML and died. Priya had her transplant one week after Max and was in the room right next door to us at the U. Trish has gotten to know Priyanka and her mom, Leela, because their stays at both Children's and the U overlapped. We ask the next prayer you say for Max also includes a prayer for Leela, Priyanka and their family. We are profoundly saddened by the loss of such a precious little one.

Thanks for continuing to hang in there with us. We continue to use this sight for support on a daily basis, especially on the tough days. All our love.
TPSPBM

Thursday, August 21, 2003 7:26 PM CDT

NEW PHOTOS.


We have had a quiet couple of days here at home. Tuesday Nana drove up from S.D. and nabbed the kids. Paul was on the road, and so it left Max and I to ourselves. With no appointment to get to and no siblings to cart around, we settled back and enjoyed the day, just the two of us. It reminded me just how many days we'd spent together over the last year and how nice it was to be doing it here at home. Getting back into real life can be exhausting after this many months, it was nice to just be able to relax...if only for a day!

We've been back to clinic for labs the last two days in anticipation of a need for a blood transfusion. Max has remained unchanged and so better safe than sorry, we will be going back in again tomorrow. You'd think after three days of blood draws he'd need a transfusion just to replace what they're taking out of him! This is when it's not so great to have your primary be the head of the BMT peds group, she's out of town and everyone gets extremely conservative with us when they're covering for her!

Paul is home now and just in time to celebrate his birthday. The rest of the family will be here Friday and rumor has it the girls are making a cake so we will all celebrate together then. Max and I had fun preparing a mini celebration for today. I had thought about putting a big bow on Max's bald head, what a gift to still have him with us today. Happy birthday Honey!

Please pray that Max continues to remain cancer free. That his new marrow continue to produce returning his immune system to a normal level. Pray that his appetite continues to improve allowing us to wean him off his food in a bag.

Forever humbled by your support,
TPSPBM

Monday, August 18, 2003 5:40 PM CDT

DAY 66

Test requested:
Post BMT engraftment analysis from bone marrow

Specimen description:
Bone marrow

Interpretation: Genomic DNA was extracted from above specimen and amplified by PCR using a series of fluorescently labeled oligonucleotide primers specific for highly polymorphic genetic markers (VNTR).
Pre-transplant samples from both the bone marrow donor and recipient were previously analyzed for informative markers. The resulting products were then analyzed on a Model 373/Genescan system, (Applied Biosystems) from which the pre and post transplant specimens are compared.

RESULTS:

Post Bone Marrow
Donor: 100%

Recipient: 0%

Trish's translation: YIPEE!!!!

What else is there to say, thank you God.....

Love to all,
TPSPBM

Wednesday, August 13, 2003 9:54 PM CDT

New Photos

A quick update with preliminary results from Max's biopsy. Max's marrow shows that red and white blood cells along with platelets are producing well. His cellularity had improved from 15% to 50%, and his spinal fluid was clean, no malignent cells.

The best news came from one of the blood tests ran last week. They extracted DNA from a blood sample and compared it to samples from both the bone marrow donor and Max to see who was responsible for the all important ANC in Max's blood. To date: 100% donor!! We will find out in the next week if Max's marrow itself is still all donor, but I am feeling very confident that it will be good news.

The kid's and I watched a program on TV about a little boy looking for a bone marrow match in order to save his life. I was again reminded how blessed we were to have found a match for Max and be in the place we are today. The last line in the show was very fitting and so I'll sign off with it today,
"Today is a gift, that's why they call it the present!"
TPSPBM

Monday, August 11, 2003 8:58 PM CDT

Day 59

First off, Max is doing great...thank you to all that have shown concern due to the length of time between updates!!
We have been busy this week with clinic visits and company. Trish's family all came to town to celebrate her OLDER brother's 40th birthday..Happy Birthday Uncle Brian! We had a wonderful time, it was great to see them all.

A few random notes..

Max is continuing to eat small amounts and the frequency in which he eats is increasing. His stomach is able to tolerate milk again and so he has been drinking more substance too. Today when he got weighed, he had put on over 1.5 lbs this weekend. I am hoping that he is able to continue to improve his eating habits and allow us to wean him off his TPN feedings.

Max had a bevy of blood tests done last week to measure all his different levels. There were no causes for concern and we are able to continue on with the regime that is in place. I was a dork and did not read the letter they'd sent close enough or I'd have noticed that the blood tests were last week and the actual biopsy is tomorrow on Day 60. They will be taking both spinal fluid, marrow and a piece of Max's hip bone for analysis. We start the day at the clinic to have labs done, then head to the biopsy.

Just last week I was commenting on how much Max reminded me of a little old man. The way he looked, tired and stiff with no hair on his head. All I wanted was to see him looking and acting like a kid again. The last few days have brought the answer to that prayer. While he is nowhere close to keeping up with his siblings, he is at least trying. I wish I could make you appreciate just how happy it makes me to see him running around, laughing and playing, joining in on the fun instead of watching it from the outside looking in.

It is hard to believe that it has been 60 days since Max's transplant. I realize that we still have a long way to go to recovery, but am so grateful for each problem free day that has passed. As my husband puts it..each day that passes is one more in the rearview mirror, making it easier to stay focused on the road ahead.

Please say a prayer of thanks for Max's continued recovery. Pray that he remain cancer free. Pray that results show continued full engraftment. Pray that Max's organs remain healthy despite the meds and nutrition that wear on them.

I'm off to take out the garbage for pickup tomorrow. I must say, I am amazed at the amount of garbage having a sick kid generates everyday. We are going to need a container just for all his single use, used to be sterile but now must be disposed of medical supply garbage!

I will be better about continuing to update. I sometimes forget that you all like to hear about the good times too. Thank you for that, and thank you for continuing to keep us tucked in.

TPSPBM

Monday, August 4, 2003 12:10 AM CDT

Today finds us continuing to improve. Max is actually starting to nibble on food, the idea of eating no longer makes him sick and so bite by bite, we forge ahead. Who knows, by September he may be sitting down for meals!! He has also lost most of his chemo skin and so he looks better than he has in a while.

Tomorrow we head back into clinic for our post 50 day bone marrow biopsy. This test will again tell us how the new marrow is functioning and look to see if any of Max's old cells are showing up. We should have some results back later in the day, but the important results will take up to a week to come back. We will let you know them as they come in to us. Please pray that the results continue to show that Max is 100% donor and working to rebuild his immune system.

It's a marathon and not a race, and so we continue to slowly move ahead...thanks for joining us,
TPSPBM

Thursday, July 31, 2003 8:39 AM CDT

A NEW PHOTO


Day 48

Hello friends,

We continue in our holding pattern. This week we are only going into the clinic on Tuesday and Friday, these are the days that our primary doctor is in clinic seeing patients. If you looked at Max you would probably see a very frail, kinda sick looking kid. When our doctors look at him they see someone that looks "great and is doing fantastic". Max's energy continues to be variable, we are hoping it is just his body recovering from all that it's been through, pray that it is not a virus. It has been nice to be home, having the days off from the clinic are great, you actually have time in your day to get something done! I just look forward to the day when Max can be up running around playing like the other kids his age. We are down to just five daily meds, one is given through his I.V. three times a day, the others I consolidate down to just six oral doses a day. He has one other med he takes on just Monday and Tuesday and still gets his nutrition or food in a bag for twelve hours at night. I can remember a time when I'd be worried giving my sick child medicine two or three times a day!!

Two sidenotes today....
The first Paul spoke about at the golf tourney. Our friend John was one of the many who became a bone marrow donor after hearing about Max's troubles. He was identified as a potential match a few weeks ago and just found out that he is indeed a match for a 20 year old man. They took a new blood sample to retest and confirm, we pray that the results are good. We will never be able to thank the person/s responsible for Max's cord blood but we hope that John can know through our experience that he is the answer to a prayer and the second chance at life for another.

Secondly,
We have partnered in our journey with other families that have helped us through in our times of need, kept laughter alive when there was little humor in a day and celebrated Max's successes. We were lucky enough to meet Priyanka and mother Leela at Children's and had our transplants just a week apart. The difference in the outcomes of the transplants could not be more severe. In the last two weeks Max has been home slowly recovering and enjoying everyday life. Priyanka's liver, kidneys and lungs have all failed and is on machines to keep her alive. She is suffering from severe GVHD of the skin and has begun to lose the marrow that was transplanted in her. Please pray that the answers to Priyanka's need are met quickly, she is a sweet little eight year old girl that should get to be nine. People often ask how we can get through such an ordeal, I tell them that one only need open the door and look around to see how blessed you truly are and how much different it could be. We still have Max today and so for today we are grateful.

Love to all,
TPSPBM

Sunday, July 27, 2003 3:06 PM CDT

NEW PHOTOS


Hello to all.

Day 44 finds us doing more of the same, which is enjoying time at home. Max continues his path back to being a normal little boy albeit sometimes slowly. A step in that direction is that he did not visit the clinic at all this weekend. He is scheduled to go back tomorrow but two days of no clinic is his post transplant personal record.

Max has given Mom and Dad a little reason for concern as he seems more tired this weekend than he has been recently. Although he wants to do things and play outside he tires easily and has slept more this weekend than what we've been used to seeing, which caused us to call the hospital. Thankfully, although fatigue can be a sign of something going on, the result of our call was that Max would be seen on Monday as planned. The doctor wasn't really that concerned as long as other signs or symptoms haven't changed, which they haven't.

We are getting ready to go help cousin Ryan celebrate his 11th birthday which should be lots of fun for Max. Max always enjoys visits from Ryan and Danny so it'll be fun to be visiting their house.

We contiue to think of our fellow AMLers, especially Priyanka, as they continue their fight for remission from this tough illness. Stay strong and keep fighting Priya and family!!

Thursday, July 24, 2003 10:39 AM CDT

DAY 41

Today finds us feeling rested and full of energy. We were able to adjust our med schedule and now we get a full 5 and 1/2 hours of sleep in a row each night!! I feel for all you parents with newborns, I'd forgotten how exhausting it can be. (Look out Kay and Chuck!) We also have the day off from the clinic and so we took our time motivating this morning...Sam the teenager is actually still asleep, typical! Mornings like this are just so wonderful. We are doing all the normal things and for a moment or two it feels like old times. I think we take for granted the normalcy of everyday life and just how wonderful it is, one only need to look at Max enjoying the day to see what I mean.

We meet with the doctors tomorrow, I'm not expecting anything too out of the ordinary...just more of the same. Isn't that great?! We know from what we've seen that this can all change in an instant, please keep checking in on us and please, continue to pray for Max's healing and a life free from cancer.

THANKS TO ALL WHO JOURNEY WITH US,
TPSPBM

Monday, July 21, 2003 11:23 AM CDT

Max and I just returned from a clinic visit. We were scheduled for transfusions yesterday, but Max's counts were high enough that we didn't need any. They had us come in today for a quick blood draw thinking that we would probably be needing them today instead. The good news is that his counts went up on their own and so we know that his body is really starting to work to produce its own blood products. We go back in again tomorrow to meet with the doctors.

Max really is doing well, he is gradually regaining his strength and his transplant tan is starting to come off, revealing his white skin underneath. You can see he has two distinct skin tones on his face and his joint areas all have that dirty skin look to them. We continue to feed Max by TPN and he has yet to show any appetite for food. The idea of it isn't bad but once it is in front of him...yuck! I am reminded how short a period of time it has been and know that this is a long road to recovery, it will take time for the eating to come around again.

We continue to be grateful for each good day. I was reminded again today that when God answers your prayers, don't question what's going on, but rejoice and accept that miracle that is occuring.

We continue to pray for our friends that are in battle with AML.. Ryan, Drew, Sean, Stephanie, Noah, Jake,Christie,Rosie,Mason and Priyanka. We remember our AML friends that have passed on...Ryan H. and Nathanial.

We continue to need your support, thank you for hanging in there with us.
TPSPBM

Friday, July 18, 2003 9:51 PM CDT

NEW PHOTOS!


Day 35-working towards Day 100

Well we have officially progressed to the every other day at the clinic schedule. Max is holding on to his counts a bit better and has remained stable enough that we are able to skip the days between. In fact, we received a blood transfusion last week Friday, and have yet to need another one. We are still needing platelets about every 2-3 days. Our biggest concern today was that Max's hickman line, the one we'd just replaced, got tugged on and the stitch came loose allowing about a quarter of an inch of it to come out of his chest. Luckily a chest xray showed that it was still well enough in place that we will be able to just let it reheal where it is. Needless to say, we are now doing a much better job of keeping it pinned down to his shirt!

We are reminded how blessed we are to be out and at home recovering. They say laughter is the best medicine, but at times I think that HOME is. Max always seems to do so much better when surrounded by his dog, toys and all things familiar. He forgets that he is sick and gets on with living. I pray that he is able to continue on this road to recovery however slow it may be.

In your prayers tonight, please say a special one for our friend and neighbor at the University. Priyanka and Max had their BMTs just a week apart, it saddens us to hear that GVHD is savaging her organs and giving her a fight for her life. The unfairness of this journey.....

Love to all,
TPSPBM

Wednesday, July 16, 2003 5:12 PM CDT

Day 33
new pictures...

Things are beginning to fall into place....I hate to even say that, I'm daring something to happen. We have gotten a routine down for meds and are adjusting to being at clinic everyday.

Max is doing really well. He continues to build his counts and even off of the GCSF hormone has an ANC over 2000! I remember most of the Day 33s of the past, we would have been lucky to see any kind of number for an ANC let alone a number in the normal range. They continue to monitor his progress and look for any signs that GVHD, graft vs. host disease, has set in. They check liver functions, look for signs of a rash developing and watch for changes in his bodily fluids. I don't think I have ever talked so specifically about poop and throwup before in my life. I really am surprised that they don't have us bringing some in everyday to analyze! They have switched us over to an I.V. med for his anti-rejection medicine. Max was taking the med orally, but his body was not absorbing it the way it should have and we know how important it is for him to get the right dosage.

The other major challenge that we face is the nutritional piece of it all. Right now Max is getting all his nutrition through TPN, which we run through I.V. for 12 hours each night. He was supposed to be using a feeding tube too, but as you know he has a hard time keeping it down. The doctors have agreed to put him on megace, a medicine that has worked for us in the past and encouraged him to want to eat. I'm hoping to see him start nibbling on something in the next week. One round it was cheetos, one round pistachios, one time roast beef got him going....I wonder what that one thing will be this time that will start him up again. If not we will probably try another feeding tube again next week. For now, we are just happy that he has remained fever free and is doing so well.

Many of us moms with cancer kids talk about getting home and finding yourself wondering how you got everything done before. It is amazing how much time it takes to nurse Max, even at home your day is filled with taking care of him. It can be hard on the others, especially Bailey, who keeps score and wants to make sure that time, attention and devotion are equal amongst the kids. It is easier now that we have slowed down a bit and I can have her be my official helper. It's been great to have Sam back from vacation, she evens things out and helps entertain the kids and give me a break.

Please continue to pray for Max in the days ahead,that he remain fever and cancer free. We were told that GVHD could happen at anytime, pray that Max is able to avoid dealing with this, at times acute, sometimes fatal disease.

Love and hugs,
TPSPBM

Monday, July 14, 2003 10:08 PM CDT

NEW PHOTOS from the Children's Open on July 14th...sorry the first one is sideways!

Hello all.

When this journey with Max first started, the doctors told us there would be good days and bad days. This is unquestionably one of the best days we've had so far. On the home front, Max continues to progress from the transplant. He is still visiting the clinic daily and receiving blood and platelet transfusions when needed. His counts remain strong enough where he was able to stop his GCFS, his blood/growth hormone. While his counts going forward will probably drop, the doctors are confident and they continue to feel good about his progress.

The other big news from today was we helped host the GEN Financial Golf Tournament. When we say help host, that means we had great volunteers to do the vast majority of the work and we were able to enjoy a great day of golf with family and friends to raise money for Children's. The day started and ended with pouring rain but with friends in high places we were able to get all the golfers through.

We are thankful for all who participated but feel like we'd be remiss if we didn't mention just a few who played such a major part. First, thanks to Eric Moleski, Erica and Kevin at Gen Financial, my brothers Don and Larry, Shana from Children's- you were all AWESOME and we appreciate your efforts. We want to thank all the volunteers who contributed their time today, we couldn't have done it without you. We also wanted to say a special thanks to John and Liz Jacobs. They also have a little boy post transplant and it was great to see them out supporting us knowing how much they have going on in their lives.

The best thing about the day is it looks like we'll exceed our goal of raising $25,000 for Children's. I wish we could thank everyone on this site but please know that all who participated in any way have a special place in our hearts for helping to make the day such a success.

If Max's Dad (me) wasn't such a bonehead we would begin posting some of the pictures from the event. Unfortunately Dad has misplaced the cord that tranfers the pictures from the camera to the computer but that will give you a reason to come back and visit the site in the coming days. Once we find the cord we promise to post many of the pictures from today.

We feel very blessed from the outpouring of support all of you showed today. Thank you and love to all!!

TPSPBM

Thursday, July 10, 2003 11:30 PM CDT

Day 27

We're home!!!

What a day, I'm exhausted. I find that it never really hits me how sleep deprived I get until we arrive home, then the reality of it all sets in.

Ready for some great news?.....Max's bone marrow test came back, they pulled the actual DNA from the marrow cells to determine if Max or his donor was responsible for his new marrow production....ONE HUNDRED PERCENT DONOR!!! Thank you God.

We had some difficulties getting a new feeding tube in Max this morning. The first attempt coiled in his stomach and had to be pulled out, the second attempt did not fare much better and took alot of tugging and at least 15 minutes of pulling to secure. I was just about ready to tell them to forget it when it took. It is amazing that with everything we put these kids through, it can sometimes be the supposedly simpler procedures such as this and needle pokes that are the most difficult to watch.

I had to go pick up Max's meds from the pharmacy before we could leave to come home. The gal started going through all the bags looking for Max's name on them. I told her I was pretty sure it was a larger bag, so she began looking at some of the fuller bags on the shelf. I looked down on the floor and saw a large white shopping bag with a tag on it and told her a had a funny feeling that was our bag of meds. Sure enough, all for Max. Once we got home we had a nurse from home healthcare come to visit. She brought another 3 shopping bags full of pumps, meds and other supplies. We spent the next few hours going over his new routine at home, making sure I'd be comfortable looking after his care. He may be home, but he is a far far cry from home free.

I am so often wrapped up in his care or comforting him that I really don't have time or energy for emotions, I am just too busy dealing with the reality of the day. Today when we left for home it felt very anticlimatic. However when we got home and I carried him in the house the emotions started setting in. I unpacked the van with tears wetting my face, I was overcome by the fact that I don't know what I'll do or say to him if we have to face another relapse. Please pray that Max remain free of cancer. Pray that his body is able to adjust to the new donor without attacking it aggressively, allowing him to safely heal in the months ahead. Pray that he remain fever free, keeping him home where he so deserves to be.

Even though we are home, the first 100 days are crucial. We will be going to the clinic daily in the beginning and gradually taper off. Please continue to follow us as we continue to fight the battle,
TPSPBM

p.s. I was looking at the picture on our home page and then those on the photo page. Check out the difference and what a great tan that Max has now. Nothing like a little radiation to give you that healthy glow, Max has the best tan in the family!!

p.p.s. It is now 12:30 in the morning and Max just threw up his feeding tube again....and the fun wheel just a keeps on spinning!!

Wednesday, July 9, 2003 11:08 PM CDT

Day 26

What a day today has been. So much to absorb and take in, both good and bad.

The good news is, that the good news has everything to do with Max. We got the word from the docs that Max will be going home Thursday! I still can't believe that my Max is getting out this early. The other good news came from his bone marrow test last week. We were waiting to find out the cellularity of his marrow and what percentage of his cells are from his donor. While we are still waiting on the latter part, we did find out the Max's marrow had a cellularity of 15-20 percent. They told us that at least half the kids here test at about 5percent,so they are very pleased with Max's numbers. WE will be pleased with that number when we know it is the donor doing the work.

The last eleven months we have shared our battle with many special kids and their families. Some say misery loves company, others of us know that courage and bravery are inspired through others. We have been inspired to greatness by our friend Christie and her family who have taught us that a positive attitude can shorten even the longest day. We ask that you pray for her tonight as she faces the horrible news that her cancer is resisting the treatment necessary to get her to transplant. We also ask that you pray for Rosie, another of our gang that was just days from joining us here for transplant. She too, heard today that her cancer has not been forced into remission. My heart is heavy knowing the disappointment this news brings her family.

Things I know....
I know that more than likely we will be back in the hospital with a fever or other complication...so we know to enjoy every moment at home, it's a gift.

I know that even though Max is doing great today, he is far from recovered and could quickly go from this to very very sick in just a day.

I know from stats that even after ALL this, the survival rate for AML kids with relapse after transplant is just 29 percent,[plus/minus 7],5 years post transplant...I will appreciate each day and every week that passes will be a victory.

I know that cancer sucks, and that kids should never have to live with it and never die because of it.

I know for certain that we have made it this far because of all of you. Our faith has remained intact and on the days we may have faltered you have seen us through...I know I will forever by in your debt, thank you.

Love to all,
TPSPBM Trish,Paul,Sam,Parker,Bailey and mostly Max

p.s. Tonight Max threw up his tube and I needed to pull it out of his nose. He was so happy with himself because he has hated having it in. Well he still had two meds left to take for the night and he quickly remembered how much he hated taking them. After his last med he looked at me and said, "How bout we put the tube back in in the morning"! Why do all of life's lessons need to be learned the hard way?!

Tuesday, July 8, 2003 2:44 PM CDT

Day 25

A quick note on the hospital front. Today we had the thrill of putting a feeding tube down Max's throat and into his tummy. Mom is happy to have it in, it has already made giving medicines a breeze. The only problem is that Max hates it, I asked him to try it for two days and then decide what he really thinks, so far he's cooperating. We are still on track to be out of here by Friday if all things remain the same!

As most of you know from our website, a charity golf tournament is being held this coming Monday,July 14th in Max's name. We will be raising money for Minneapolis Children's Hospital to support all they do for the children and families who stay there. We are so thankful to all who are participating and have sponsored or donated to the event. We were excited to hear that it had filled and that there will be over 120 people golfing that day. I know that some of you tried to get in and weren't able to and some of you, like myself, are not the best golfers in the world. If you look at your calendar and see that night free, consider coming to the social hour, dinner and live auction. The cost is $45 and the deadline is this Thursday, July 10th. If interested call Erica Larson @ 952-513-1466 to make a reservation, or check out the link for more info at the top of this page. Fingers crossed, Max will be attending the dinner,come and say hi!

It's interesting, the people here at the University are great and the facility is very nice. Yet, over and over again you hear people that have come from Children's comment on how it's just not the same. I think what it would be like if the funding wasn't available for all the special programs they have there...it would be like being here. We've described the difference by saying the University hospital is a research hospital that treats children. Children's hospitals are hospitals for children that treat the entire family. We are so glad that we will be able in some way to "payback" and make things better for the next child diagnosed and the family whose lives will be forever changed because of it. I can not imagine what the last 11 months would have been like had we been in a different location.

Looking forward to going home...nervous but trusting ALL those in power....
TPSPBM

Monday, July 7, 2003 10:59 AM CDT

We just finished meeting with the doctors in rounds. Things are looking very encouraging for us at this point. When we were preparing to come here they had told us to expect to be inpatient anywhere from 40-80 days, and because of Max's history we anticipated at least 60 days. Well, today is our 32nd day of hospitalization and we are looking at a discharge in the next 3-5 days!! The biggest struggle we face at this time is the oral medicines that he needs to take in order to leave. Each day we are taking more meds off his I.V. and switching to oral. It is not uncommon for these kids to have upwards of 40 doses of different meds each day. We are facing some challenges in that Max does not like taking oral meds and that his stomach has ceased to function properly. The TPN (food in a bag) that he gets everyday goes into his I.V. and thus avoids his stomach, now that we are throwing all this stuff in it, it is just shooting it back up and refusing to work (it's the stubborn polish in him)! He has started taking a medicine that encourages his stomach to begin functioning and he does seem to be doing better with his meds. We have discussed putting in a feeding tube, this would make it easier to give meds and we could give him his nutrition through it as well. The next two days will determine whether or not it is necessary. I am so ready to do whatever it takes to get him home and put less stress on him.

Because he is doing so well, we are free to move about the hospital and are even planning a trip outside today. We may even get a pass to go home for a few hours tomorrow. He is still pretty weak and the trips need to be short, thank goodness for the movie closet..it's great motivation for him to get out.

Love to all,
TPSPBM

Saturday, July 5, 2003 10:33 AM CDT

NEW PHOTOS


We hope this finds you all rested after a fun, safe holiday weekend.

We had just finished watching our last Pokemon movie for the night (1:30 a.m.) on Thursday when Max's pump kept beeping, saying his line was occluded. It was then that our nurse felt his shirt a bit wet and saw that the top of his hickman had spliced open. This began a long night of oral meds, starting an I.V. line in his hand, having people in and out, as they decided whether or not they could repair the damages or place a new line. Max and Mom finally closed their eyes for the night at about 5:30 a.m.!
The next morning a new hickman line was placed in Max's chest. The good news is that they were able to rethread it, using the old line's path...the only visible difference is that his new line comes out above his right nipple instead of the middle of his chest.

Our other news to celebrate is that Max's ANC is over 700 today and his white blood count has been over 1000 for the last two days. Both are signs that we have hopefully crossed the barrier into the safer,but still not safe, zone. The doctors discontinued his I.V. antibiotics and we have begun giving Max more of his meds orally. Some of the meds are 4-5 times a day so you can imagine the fun we are having. We just keep our eye on the prize, all of the things we are doing now are in preparation for discharge! The sooner we get to that place, the sooner we get to go home!! Max is doing so well and the best news is he remains fever free.

Pray that Max's counts continue to rise, providing him with the best medicine, his own immune system, to heal.

Pray that he remain fever free in the days ahead.

Pray for his fellow AMLers who are all facing their own battles, Ryan,Christie, Priyanka, Rosie, Mason, Stephanie, Sean, Jake, Noah and Drew.

(((((BIG HUG)))))
TPSPBM

Thursday, July 3, 2003 3:33 PM CDT

A short quick update today. We were a bit disappointed to see that Max's ANC dipped under 500 today, looks like we're confined to the room a bit longer than we wanted. (There is no rule bending here!) The doctors are fairly confident that his counts will be taking off again in the next few days and so we wait...again! The good news is that Max's initial results from the bone marrow biopsy this morning look good. They were able to see healthy red cells, white blood cells and even one platelet precurser, meaning that he has begun to (on a very small scale) build his own platelets! We continue to pray that the results will show his donor cells doing the work, 100 percent donor.

Today is the one month anniversary of our friend Ryan's death, we continue to think of him daily and pray for his beautiful family. Because of him, we will never forget how lucky we are to be here, to have another chance at a longer life for Max, we continue to be grateful for this gift of life. We were also discouraged and saddend to hear that yet another AML kid has relapsed. Mason is a true fighter, he underwent his second bone marrow transplant in February and was seemingly doing well. It is not fair that even after all this, the odds are not in our favor. Please pray for him and his family in the rough days ahead.

The entire family will be together this weekend, we pray for freedom from cancer, freedom from pain and illness, freedom from the darn hospital soon!!

Love to all,
TPSPBM

Wednesday, July 2, 2003 11:53 AM CDT

Day 19

We met with the Doctor's today and again we are pleased with Max's progress. He should be weaned off his pain medicine in the next 24-48 hours and we will start peeling away his antibiotics in that time as well. We are hoping that Max will be just on maintainance meds by the weekend. Max's ANC is 500, if he can stay over 500 for the next two days he will be able to leave the room and actually go for a walk in the halls!! We will also have his bone marrow biopsy in the morning around 9a.m., the bad news is that most of the important information we need from the test will take a week to get back. We've been patient so far, we can wait another week for the results.

The best part of the last two days is that Max is back. The cancer kid is rarely around and for the most part I have my happy, smiling kid back again. What a difference a day can make!

Please pray for the best of results from the biopsy.
Pray that Max continue to remain fever free, especially as we remove the many antibiotics he is on.
Pray for a safe journey as Nana and Papa return with our much missed children, we look forward to having the family together this weekend.

We are continually lifted by your prayers of support, thank you for seeing us through this journey.
TPSPBM

Monday, June 30, 2003 12:18 AM CDT

Day 17

WE HAVE COUNTS!!! What a terrific way to start the day. Yesterday the doctors had told us that the median day for cord blood counts is Day 23, and so we were preparing for another week of waiting. Today, the doctors, nurses and myself gave Max a round of applause for his results! Paul and I could tell that Max was taking a turn for the better, his attitude has improved and his bottom has healed up, always a sign that there are white blood cells working! The next few days we will watch the progress and on Thursday, a bone marrow biopsy will be done to determine whether or not the new cells are being produced by his donor or from himself. Knowing Max and his bone marrow, we are fairly certain that it is his donor marrow doing the work. We know that there are many more days ahead to get Max where he needs to be, and many complications that will arise, but today is definitely a day to celebrate.

Please pray that Max continue to build healthy new marrow from his donor.
Pray that he be leukemia free, cured from cancer.
Say a prayer of thanks to the parents of the child whose cord blood is giving Max another chance at life, that they may be blessed and rewarded for their amazing grace.

Yipee......
TPSPBM

Sunday, June 29, 2003 9:49 AM CDT

We are still playing the sit and wait game. Max continues to have a white blood count of 300 with no change since Friday. We are awaiting the day they wake us up to let us know that his numbers have started their rise. Until that time we wait.

Max has spent the last two days sleeping the day away. This is good because it allows him to catch up on the rested sleep he needs to recover, and good for us because the pain meds make him cranky when he's awake! It seems the only time of day that he has been an alert, fun and happy kid is from 8p.m. to midnight!

Paul and I enjoyed a movie night together at the hospital last night, it's great to have him home. Today is going to be boys day for Max and Daddy while Mom takes off for home to enjoy one of the simple pleasures in life....a shower with water pressure! Please keep praying for Max and that the new cells he builds are 100% donor. Pray for us all to have the continued faith to be patient in the days ahead as we wait and wait and wait.

TPSPBM

Friday, June 27, 2003 10:59 AM CDT

It's been two weeks since Max's transplant, I can't believe we've been in the hospital over 21 days already. The good news is that Max has stabilized and continues to remain fever free and his rash is hardly noticable anymore. They will be discontinuing his hydrocortisone today and I pray that he remain stable. His kidney and liver functions continue to look good and we are tremendously thankful for that. Our major battles at this time are some itching that makes him crazy and a bit of a tender mouth, however seeing the mouthsores and trauma some of the kids go through, Max has been lucky in that department...so far!

The cord blood typically begins to engraft and build new marrow anytime from day 14-21 but can take up to 28 days without concern. We are optimistic that something happen in the next week but experienced enough to know not to hold our breath. Until then we hope to continue the holding pattern we're in with a bit of improvement each day. We enjoy being one of the low maintainance rooms on the floor...for now!

Nana and Papa brought the girls up to the hospital yesterday morning before taking off for South Dakota. It lifted Mom's spirits to spend some time together with the girls, we even got to take in a bit of the Turtle Derby and snarf hotdogs and chips outside on the veranda. I look forward to my husbands return this evening, I know how hard it was for him to leave and am glad he has a much more stable Max to come home to.

I sometimes think the people here expect me to be more upset and devastated by the sight of Max's trials. Nana made a comment yesterday about how much Max's appearance and attitude reminded her of him in December when he was so sick. It reminds me of that too, and it reminds me everyday that he can and has made it through this and will do so yet again. I have gone back to many of the guestbook entries from that time and once again gather strength and faith to muster through. My friend Nancy left an entry once that said..We give great honor to those who endure under suffering. Job is an example of a man who endured patiently. From his experience we see how the Lord's plan finally ended in good for he is full of tenderness and mercy....we do not yet understand God's plan for Max but we continue to wait patiently and do what we can daily to honor his suffering.

PRAY,
TPSPBM
Two new photos.

Wednesday, June 25, 2003 3:10 PM CDT

Day 11

We are grateful for this day. Last night the nurse and I both thought something was wrong with our thermometer when Max started registering temps in the normal range. It is afternoon and Max has made it through the day fever free!!
He is still a pretty pink color and has a rash that covers most of his body, but it is nothing like what he was dealing with the days before. Yesterday, because of how his rash was progressing with his fevers, they decided to give him hydrocortisone through his I.V. It seems to be working well,with the full effects taking place in the next 24 hours.

You can just look at Max and see the difference. He is breathing normally and his face has a relaxed look on it for the first time in days. I am only now realizing how hard he was working to get through the day when I see how comfortable he is presently sleeping. He is using this day to catch up on the rest he has been unable to have and has slept the entire day. The main source of discomfort now is his bottom...shock to you all I know....and has needed some pain relief for it.

Paul is traveling this week, and the girls are leaving in the morning to go to Nana and Papa's house for the week. I am glad they will be off having fun, they won't feel left out and I can focus on Max's care. Thanks Mom and Dad for helping out yet again! I really miss being a family, all together under one roof and look forward to it in the future.

Keep praying,
TPSPBM

Tuesday, June 24, 2003 11:36 AM CDT

new pictures

Day 10

Today is here and it's more of the same. Max is continuing to battle his fevers, is dealing with a rash that seems to be progressing, has a sore bottom and still has a persistent dry cough. Some of the levels that affect kidney functions are elevated and they continue to monitor and adjust meds to bring the levels down. That said, he is managing as best as can be expected. We are hoping in the next week to see his new marrow engraft and watch his new white cells provide him the relief that we can't.

These are always the toughest days for us. I don't even know how to describe what it's like. My cousin Wayne's son went through a BMT and he reminded me yesterday that you just need to focus on the hour in front of you.....it's only an hour,we can get through that...and soon enough the sun has set, you've made it through another day. We have faith that Max will make it through the days ahead, he has shown us his true strength in the past. We only wish that the journey wasn't such a painful one, it can be heartbreaking as a parent. We focus on the recovered Max we've seen before and look forward to seeing again soon.

We know this in only day 10...we have days and days ahead..your support and prayers continue to be the life preserver that keeps us afloat for one more day...

TPSPBM

Monday, June 23, 2003 9:21 AM CDT

Day 9

The game continues.....Max is still dealing with the nasty fever that has been holding him down. He is finding pockets of time to still try to have fun but really, is only getting out of bed to get weighed or to have us hold and rock him for a bit. We met with the ENT doctor here today, who looked at Max's CT scan and examined him. He says all his tissue appears healthy but because of how full his nasal area is, may still want to aspirate and draw some fluid out to culture. They want to find out exactly what we are dealing and treat accordingly. There is a possibility that it could be a fungal infection and if so, we would need to add different meds and treat aggressively. Because his tissue looks so healthy we are optimistic.

The other change we are seeing is a rash that has begun to spread over his legs, chest and abdomen. We are watching to see if it could be the first signs of Graft Vs. Host disease, or GVHD. We will wait to see how it progresses and look to see if his blood counts are reflecting the engraftment.

Pray that Max's fevers subside in the days ahead.
Pray that Max's new marrow engrafts and begins reproducing healthy new cells.
Pray for complete healing from cancer.
Pray that one day, all children can enjoy the childhood they so richly deserve.

Peace and Honor to all those suffering,
TPSPBM

Saturday, June 21, 2003 2:12 PM CDT

Day +8

Today has been a better day for us than the last two had. Max has spent the last two days struggling to keep his fever under control. He has been taking Tylenol every four hours and has been given Vioxx(used for arthritis and fever control)every day, even so,we've been lucky to get his temp down to 100 degrees. He was continuing to get the fever shakes and his fevers have been ranging in the 103-105 degree range before being medicated again. Any nurse at Children's will tell you that the one thing Max just won't tolerate is taking Tylenol, so you can imagine the fun the nurses here are having trying to get him to take it so often! He has also been continuing to cough up alot of flem and seems to feel some relief when it's up and out. We did finally have a CT scan last night, hoping to find the cause of the fevers. It did show that his sinuses are full and could very well be the reason he has had so much flem and fevers. They have added a antibiotic for it and we've started ablecet (an antifungal med) too. Max is now up to 3 antibiotics, one antifungal, one antiviral, two preventative graft vs. host meds, one growth factor, one med for ph control and TPN food in a bag. Many of these meds are administered 3-4 times daily so Max is a busy boy...the scary part is, with our history this doesn't even sound like alot of meds for him!!

Today Max still is fighting off his fever, but it has managed to stay down a bit and his mood is much better. When his fever is as high as it was, it takes every bit of his energy just to breathe and fight the fever. Today he has been able to laugh and talk and watch movies with mom. I am hoping that the change of meds is making a difference and he will be feeling better soon. We know that this next week will be long one, we have destroyed Max's ability to produce more healthy blood cells and the new marrow has not yet begun to reproduce, until then we will give him transfusions to get by and pray that no other infections or ailments strike.

I'm thankful for all the visitors and phone calls that have made this week go by faster. We look forward to our family returning from vacation, I know it will be good medicine for Max. One of our friends, Dave, came to visit with his son yesterday and when he left gave Max a small white rock with the word HOPE on it. Dave is a cancer survivor and had completed the Relay for Life in Farmington this year. The rock is given to cancer survivors to pass on to another now struggling with cancer. It comes with an invitation to walk with that person in the Survivors Lap next year. Well, Max loves his rock. He has decided to keep it with his other favorite rock, a green one, in our fish tank and scoop it out next year before he walks. He held it in his little hand for a long time yesterday, who knows, maybe that was what made the difference and not the medicine! The thought of Max making the lap next year, brings tears to my eyes, but the good tears....the ones filled with HOPE.

Love to all,
TPSPBM

Thursday, June 19, 2003 7:36 PM CDT

One in every 330 children will have developed cancer by the age of 20........between 25-35 percent will die.....

Day 6

Today has been the battle of the fever. Max started things off last night when he spiked a fever, we treated him with Tylenol and then had a portable chest xray taken. They added an antibiotic to his cocktail of meds and drew blood cultures to see if anything would grow so we would know what was happening.

This morning Max was feeling much better, we had fun playing around with some remote control cars that our neighbors here, Priyanka and Leela brought from home. The good news is that they can't complain if we make noise slamming them against the wall!! We have yet to see any mouth sores and Max's hair is hanging on despite thinning out a bit, but this afternoon Max's fever came back fast and he had his first experience with the "shake and bake". He began to get chills as his fever rose and he had the shakes for a bit, he is on Tylenol and Benadryl now and is resting peacefully. Please pray that we get this fever under control and that Max is able to make it through the next few days fever free.

Love to all,
TPSPBM

Wednesday, June 18, 2003 11:38 AM CDT

Day 5

We are beginning to see some of the effects they'd told us would be coming. Max has a dry cough that he often follows with a cough up of flem. He is also complaining more about his bottom hurting, and his hair has begun to thin out. We trimmed it really short with a scissors and then tried to use their clippers to shear it short but it was ripping more than cutting so we stopped. We later found out that the girl down the hall had been using it to give her Barbies haircuts, which explained the dull blades! Thank God Max is a boy, because no girl would be caught dead with his current hairstyle. The good news is that it should all be gone in the next few days and we'll have his cute bald head to look at again!

We needed to have both platelets and blood transfusions today, his first transfusion with a new blood type! He has spent most of the morning drugged up on Benadryl but did get to show off his new hulk shirt and hands to the doctor today.

We can see that the next few days may be difficult ones for Max and ask that you say a prayer for the added strength to deal with all they bring. Pray that his new cord blood responds quickly and begins to produce healthy marrow.

Yesterday brought more frustrating news as we learned that Christy from our AML gang had relapsed and is now preparing to join us here at the University for a BMT. We pray that a match can be located for her quickly and that she can get her cancer in remission long enough to meet us here.

Thanks to Jenny and Nikki for the visits and a big thank you to Joanna who stepped in to look after the house and all the animals for us this week.

Wishing you all good health,
TPSPBM

Monday, June 16, 2003 9:55 AM CDT

Day +3

We are at day three and Max is still hanging in there. We are beginning to see some of the early signs of the effects of the radiation, chemo and anti-rejection meds. He has a bit of a dry cough and there have been a few times when he's needed to cough up some flem from his gut. They have told us that usually the bottom falls out around Day +7/8, that is when the mouth sores, mucus build up and all that goes with it hit hard. We know that the range of severity vary greatly and so we hold our breath, praying for only minimal difficulties.

The hospital will be a much lonelier place this week. Nana left for home today and we thank her again for all she does for the family to keep us afloat. Paul and the kids, along with all the Aunts, Uncles and cousins left for the annual Adams family vacation in Wisconsin. We will miss everyone tons. I know how hard it was for Paul to leave, but we realize how important this week is to the other kids. I am praying for many sunny days for them to optimize their fun, if anybody has earned a good time, it's them!! Hugs to the rest of the Chicago family, Max and I look forward to joining you next year for fishing and great conversation.

Pray for Max that the days ahead remain as pain free as possible.
Pray that the new life beginning in him is stronger than any cancer.
Pray for a safe trip for the rest of the family.

Keep walking with us,
TPSPBM

Saturday, June 14, 2003 10:10 AM CDT

He did it!! We are happy to report that the transplant is complete and Max has stabilized. He is up and at it again today, looking and acting like the same kid from yesterday morning.

The transplant itself happened yesterday(Friday the 13th!) we had our family join us for a prayer service and then celebrated a bit before watching them hang the bag of cord blood. The celebration was capped off by a special visit from Spiderman himself. He came in full costume to wish Max good luck on his journey to wellness. A special thanks to the Holt family for making it happen, it meant alot to Max and to us. The transplant itself took but a half hour, they connected it directly to his line and so the infusion was really quick. Shortly after the completion you could really notice the smell from the preservatives used in the cord blood. Liz, baby Ryan's mom had warned me that it would smell a bit like cream of corn, but to me it was more of a sour tomato paste...either way it was a bit overwhelming, I'm glad Paul stayed the night, I don't think I could have been around it that long! About the time we could smell it, Max could feel it and began experiencing some bad stomach cramps. He actually climbed out of bed on his own and had to stand up holding the bed to try to relieve them. They were quick to give him a med for it that not only settled his tummy but knocked him out. The only other immediate side effect was his blood pressure, it shot up after the transplant and stayed up for a few hours before gradually working itself down. The good news is that he was able to do it on his own without the help of any medicines.

We appreciate our family joining us on this day. I didn't realize how much emotion I would feel...remember the day your child was born and how you felt...remember all the hopes and dreams that went with it? His Aunt Sheila gave us a magnet that hangs in his room that said, "Nothing is worth more than this day", and other than the day he was born she's right. This was the most important day in Max's life.

We topped off the evening by watching Bailey make her dancing debut on stage. It got to be a very long evening and a special thanks to those who went for hanging in there through all 3 1/2 hours of it! Bailey was such a treat to watch, definitely a star in the making.

Erma Bombeck wrote an article once about a Mom with three sons, who, at her funeral gave them each a letter to read on their own. Each letter started the same...you were my first son, my middle son, my baby, etc....and I always loved you best. The letter then when on to tell them just why she always loved them best, and she meant it. Each letter ended with the same, "please don't tell your other brothers, I wouldn't want them to be upset". I think when you have a kid with cancer it is like them getting their letter ahead of all the other kids and the other kids get to read it. We try to do what we can to show all our children that we've got a letter for them too and it is just as important and powerful. We continue to be proud of all our children and love them up the same.

Thank you as always for joining us in our journey to Max's cure. Please continue to pray in the days ahead that he remain infection free. Pray that his body accept the transplant and begin creating new healthy marrow from his donor.

God bless you all,
TPSPBM

ps there are new pictures

Friday, June 13, 2003 1:16 PM CDT

Today is the day, Day 0, or BMT day!! We will update later once things have completed but wanted to leave a small message requesting special prayers for Max as he receives his new cord blood transplant today. The actual event starts at 2p.m. with a blessing ceremony and small celebration to celebrate his new birthday. He is excited and feelling well, what kid wouldn't want two birthdays!!

We've changed the look of our page again. We chose the butterflies for two reasons. One of our entries talked about a cancer survivor describing the prayers of support as butterflies....these butterflies are symbolic of your prayers flying off the page and into Max's body. The second reason is that the butterfly is the symbol of hope for BMT patients. It is symbolic of the patient, in the cocoon stage throughout their battle and treatment and then through transplant changed into the beautiful butterfly flying free. We know that today is the day that Max will be cured of cancer. We are thankful to have made it this far and continue to ask for your prayers of healing.
Love to all,
TPSPBM

Wednesday, June 11, 2003 7:59 AM CDT

Day -2
Things are in the "so far so good stage". Max is still in good spirits and seems to be dealing with the hospitalization fairly well. He keeps us busy doing puzzles, playing games and watching movies. It can end up feeling like a VERY long day for the grownups and so I am grateful for Nana who is here spending the week and taking shifts with Max. This is the last week of school for the big kids and Bailey makes her dancing debut. Between end of school events, dress rehersals and Max, there is always at least two places we need to be. We are glad that Max is doing so well right now, making it easier to leave for a few hours.

The only real changes in the last couple days is that his counts are dropping. He will be receiving his first blood transfusion today. With only two days till transplant, it will be one of his last as a B- bloodtype. Starting Friday, Max will have a new blood type, since his donor cord is O-! The other change is nutritional. They started him on TPN and lipids,complete nutrition in a bag. We like to call it "milk and Mountain Dew" because it looks like a bag of pop and bottle of milk hanging on his pole. This is early for us to be starting this kind of treatment, but we can see that his appetite is diminishing and know that he needs to be as fit as possible going into transplant. In the past it has made him feel a nauseous, but so far seems to be having little effect.

We keep praying that the effects will be as minimal as possible for Max, and that this bring the cure we desire.

Love to all,
TPSPBM

Monday, June 9, 2003 3:03 PM CDT

Day -4
Today finds us experiencing another good day. Last night Max's fever got to 101.8 so they drew cultures and started him on antibiotics, for those of you who have been following along, this should not sound like anything new to us! We had a chest xray at 11p.m. so we didn't fall asleep until after midnight. The good news is that the fever has been under control since then and is back to normal again.

Today we started his TBI, total body radiation. We go once in the morning and again in the afternoon. They have Max sit on a cot and watch his Power Ranger movie while they shoot him up. The entire process takes about 15 minutes each time. He is required to sit very still so they tape his legs and arms to the cot so he doesn't move while it's going on. He is so good throughout the entire process...I think it's all the cute girls that work there!! Deacon Mike came to visit us today and reminded Max that almost all superheros get their start with the help of some type of radiation or radioactive exchange. So we think Max is in his superhero transformation stage....look out bad guys!!!

We are thankful for another day of fun. Except for the loss of appetite Max is doing well. We know that the two weeks after transplant will be the toughest, but are grateful for each day with no complications.

Thanks to all who check in,
TPSPBM

Saturday, June 7, 2003 5:33 PM CDT

Well we are now at Day -6, two days into chemo and so far so good. We will take every good day that we can get. We are working on adjusting to the new rules and regulations that a new hospital brings. The kids have already decided that this place is a bit boring and are not nearly as anxious to visit. I can see why they say that people that come from Children's Hospital are a bit spoiled, they really do take care of the entire family there. That said, we are feeling very grateful to be here, these people know what they are doing and we feel confident in their hands.

Max will have one more day of chemo and then go straight into his TBI, total body radiation, on Monday. We know that the chemo will catch up to him Monday or Tuesday and the side effects will start to show. Please pray that they be minimal and that he be able to remain as comfortable as possible.

We want to thank Auntie Linda for spending the day with Max so Trish and Paul could attend our friend's funeral. We continue to send our prayers to the Holt family as they deal with the loss of their son Ryan.

Thank you for hanging in there with us, at times it feels like much more time has past than actually has. We know that you have busy lives and appreciate you taking time out to check in with us.
Love to all,
TPSPBM

Pray for Max to be cured of his cancer.
Pray that his BMT is a success, with as few long term effects as possibe.
Pray for our family, that we stay strong and intact in the months ahead.

Thursday, June 5, 2003 7:19 PM CDT

I am quickly typing this update from home as we prepare to head back to the University. We went in this morning and met with the doctors, residents, nurses, etc. We also had our last round of isolated radiation. After radiation we were allowed to leave the hospital until tonight. We have yet to "move" in. They had a discharge from one of their bigger rooms today and so we are giving them time to clean it up before we settle in. It was that or take one of their smaller rooms....we think with a family our size, it's worth the wait! We will start chemo in the morning and have it everyday for three days. That said, once we go back in tonight, Max will not be able to leave his room until his ANC is 500 or more, for three days in a row. Today was Day -8 and they won't even start checking his counts until Day 7...that means at least two weeks locked in. This will be interesting for us since he is used to being able to at least go to the movie closet or playroom.

In the days ahead I will have access to a computer in our room and will be updating on a more frequent basis. This is our biggest challenge to date, and truly the most life threatening for Max. Please remember to keep him in your prayers and continue to check in and offer support through this site.

We are overcome with a confidence that is carrying us into this eyes wide open but ready, feeling positive that this is the cure for Max.

Love to all,
TPSPBM

Tuesday, June 3, 2003 10:10 PM CDT

Today is a sad day for us, we lost a friend. This one really is hard for us because the little boy is a three year old with AML. Ryan Holt was diagnosed just two months after us and has been going through this journey with us. He had been scheduled to come with us to the University for a transplant but could not get his leukemia in remission. We went home to prepare for transplant, he went home to live out his life. Please say an extra prayer for Ryan and for his family, that they may find the strength from God to face the days ahead. We told his parents when we left that Max was going to beat this thing for the both of them and we are more determined than ever.

Max has his last day of freedom and then it's in the hospital Thursday. He is handling his radiation like the pro that he has become. The packing up the kids, drive and park, walk to the hospital, get him on the table time takes 45 minutes. The radiation itself, less than a minute. Isn't that how it always goes?!

We are comforted in knowing that God knows what we're going through. He understands watching your child suffer, he does it everyday. Just as a parent comforts his child, God folds us in his arms and gives us the strength for one more day.

Love,
TPSPBM

Saturday, May 31, 2003 5:34 PM CDT

Well, the results are in, and for the most part look really good. The only areas of concern are related to the results from the MRI. We did still see a small bit of something in the location of Max's prior tumor in the eye. We are all in agreement that it could be scar tissue, but it would be difficult to be certain and there could be that one leukemic cell still hiding out there. Because of this we will be doing an electic beam radiation directly to that portion of the eye. The good part of doing it this way, is that we can avoid radiating any other part of his head. It will be a low dose of radiation once a day for four days. Max will be at high risk for cataracts anyway, but now is almost certain to get one in that eye. The good news is that it is easily treatable and correctable.

We were very happy to hear that the rest of the results show that as of now all of his major organs look normal. Because Max has undergone such high doses of chemo in the past with very little break inbetween, they had expected to see some signs of weakening or damage to them. With his counts rising and his body in good shape, we feel he is in a good position to begin transplant.

Max is already building a reputation here. We have had alot of wonderful support from the staff at Children's. Their good word has the staff here at the University taking extra special care of us so Thank You!! Then Max underwent a head and orbital MRI on Thursday. Mom had to twist the staffs arms to let him try to do it without sedation. They had said that almost every kid under 5 needs to be put to sleep while they test them. Mom and Max decided that he would just practice being an astronaut in a rocket ship going to a planet to help Buzz Lightyear. The test went off without a hitch and Max got two extra treats because they were so impressed by him. Then Friday we had radiation simulation and again it took some convincing to let him try it without sedation. He let them mold a mask of plastic webbing over his face,bolt it to the table and then wait for it to harden without fussing once! The whole experience required him to sit very still and so we played a little game of "freeze" that worked great. As the saying goes..."When the world hands you lemons, make lemonade"...and life is alot more fun if you make a game of it. Needless to say I was the proudest mom on the floor that day, they took lots of polaroids of Max so he could always remember what a big boy he was. They said he can keep his mask when he is finished, so we are thinking of turning it into a Spiderman mask by having Auntie Sheila help us out painting it!

Even though this is the toughest stretch of road yet for us, we are feeling more confident than ever. Pray for Max, he understands that he needs to go back to the hospital but I know all he wants to do is be just like the other kids.

When we are moving around the University hospital system, we are moved at just how many people out there are struggling with some type of illness or disease. It is a constant reminder not to take your good health for granted. We pray that this finds you all in that good health.

Thanks to all,
TPSPBM

Wednesday, May 28, 2003 7:54 PM CDT

Welcome to our week of workup. Today was our second day of testing and meetings with Doctors. We arrive at the clinic every morning at 8 a.m. and get our schedule for that day. We then spend the rest of the day going back and forth from building to building trying not to get confused or lost! It seems to be getting easier with every appointment and because we were able to complete some of the testing at Children's Hospital prior to coming here, Thursday will be the last day of testing. On Friday we will be sitting down with the Doctor that will be following Max's progress throughout his BMT, Dr. Ramsay. We feel lucky to have her, she has been at the University for over 28 years and currently runs the pediatric bone marrow transplant program...she has been there, done that and seen it all. We will be discussing the results of all this weeks tests, any areas of potential worry and what the road map for treatment will look like. Our main concern is what is the right plan for radiation. At this point the radiology oncologist, rumored to be the best for pediatrics in the country, is still not certain if full body radiation will be enough for Max or if he will need additional isolated radiation to his eye, or eye and brain. Because that is the area that the relapse occured, they feel that this additional radiation may be needed. As the radiologist said...we don't wan't to fix him for now, we want to cure him for good. The MRI test that Max will undergo Thursday will hopefully provide some of the clues to making the right decision. Because Max's cancer first showed itself as a tumor in his chest and then relapsed as a tumor in his eye, we feel that the total body radiation is a necessity for him. We are hoping that no other radiation is needed, but know that at this time they are leaning toward radiating his eye.

That said, we will more than likely be doing outpatient radiation Monday-Wednesday for his eye, be admitted Thursday, begin chemotherapy on Friday(3 days) and then follow that with total body radiation or TBI (5 days). When that is all said and done we will finally have reached Bone Marrow Transplant day. That will be considered Day Zero. We are expected to be in the hospital anywhere from 40-80 days and are anticipating at least two months.


Please continue to pray for Max and all those in charge of his care. Pray that the next few months will bring an end to his cancer for good. We will need your support more than ever and ask that you continue to hang along and support through prayers and messages.

Love and BIG HUGS,
TPSPBM

Saturday, May 24, 2003 10:05 AM CDT

NEW PHOTOS 5.25.03

We hope this finds you all enjoying the beginning of this long weekend. We started things off Thursday by having Max's pictures taken , he had so much fun and now we have a permanent reminder of this treatments crazy hairdo! Uncle Brian came in from Wisconsin that afternoon and took Trish and Sammy to see the Blue Man group, we had such a terrific time...thanks to Uncle Don and Aunt Sheila for watching Bailey and Max so we could go. Friday, we were going to have what we thought was a quick trip into the clinic and then a play date with friends. Well, everything looked good, except Max's hemoglobin and so we needed a blood transfusion. In clinic at 11 a.m., out by 4:30p.m.!! They say you know that your a cancer mom when you can't understand why people complain when they had to wait at their doctor's only 45 minutes!

Paul came home and Nana and Papa made the trip up from South Dakota, so we look forward to spending time with them this weekend. We also have our nephew, Mitchell's baptism this Sunday and will celebrate with Paul's family. We know this will be our last weekend on the "outside" for quite a while and feel fortunate to be surrounded by family.

In talking to one of the other parents yesterday, we realized that two of the other families that were going over to the University for BMT with us are still struggling to get their child healthy enough to go. We realize how fortunate we are to made it this far and ask that you continue to pray for Max's well being.

Love to all,
TPSPBM

Wednesday, May 21, 2003 7:27 PM CDT

Today we had another visit to the hospital. We started the morning in short stay where they gave Max platelets, then did a bone marrow and a spinal tap that included three chemo meds. The chemo was given more as a preventative then anything, we can't afford for Max to relapse so close to transplant. We then met with our oncologist and visited with a few of the other families we've gotten to know. We found out this afternoon that the results of todays tests were all good, the official green light!! We can't help but feel nervous about the days ahead, but are even more grateful that Max's cure is right there waiting for us.

We have a busy 5 days ahead of us filled with "everyday" life stuff. We will still need to come into the clinic for blood draws on Friday, Max may need a blood transfusion depending on his counts. We are going to enjoy all that we can, while we can, knowing that Tuesday is the start of a long and hard journey. We continue to be comforted by the fact that you are there with us.

Peace,
TPSPBM

Saturday, May 17, 2003 5:56 PM CDT

Yesterday Max returned to the clinic for blood draws. While Max's counts are coming back, they are not as high as we'd like them to be. His ANC is still under 500, and so we are limited in the activities and places we can go. That said, with the weather as nice as it has been, just being able to be home and enjoy the outdoors is more than enough for us.

We did receive a phone call from the University and have scheduled the start of Max's BMT (bone marrow transplant) for the day after Memorial Day, or Tuesday, May 27th. The first week will be filled with tests, tests and more tests, meeting with doctors and information overload. We continue to pray that the results give us the green light to proceed to transplant.

Please pray that Max's cancer remain in remission. We pray that he continue to build the strength he'll need to fight the battle that is ahead of him.

Love and Big Hugs,
TPSPBM

p.s. There is a link to the golf tourney info...just click on the photo album link in the intro section of our page.

Wednesday, May 14, 2003 8:17 PM CDT

Good day all.
We are happy to report that once again Max has blown out of Children's hospital to spend a few days at home. Although he does not have high counts and we plan on being very cautious with his activities and visitors, it is a treat for us as well as Max to spend time at home so we'll try to enjoy every minute of it. Going forward, Max needs to visit the clinic on Friday for some blood work and then next Wednesday he is scheduled to have a bone marrow and spinal procedure done. The results of these tests will pretty much determine when Max will be ready to proceed to the next step, the cord blood transplant at the U hospital. Our best guess estimate is ten days to two weeks to have that procedure on the calendar. For now, Max is spending his time with Bailey and Sam outside in the backyard and playing "store" and having tea parties with Bailey.

As we have said many times on this page before, you really become connected to the other kids and families that fight similar battles to the one Max is fighting. One of the other little boys on the floor, Ryan Holt, was sent home as well. Unfortunately, he was sent home because the chemotherapy is not working on his AML and his family was told there are no more treatments to offer Ryan. We are deeply touched by the strength shown by Ryan's parents as they try to cope with this devastating news. You really come to appreciate every momemt when you see the people who have entered your life try to deal with such difficult cicumstances. We ask all those prayers warriors out there to say some extra prayers for Ryan and his family as they deal with the ever changing world of a child with AML. We are thinking of the Holts' and praying for a miracle.

One other item we've been meaning to mention is a fundraiser golf tournament in Max's honor to raise money for Children's Hospital. A good friend of Don's, Eric Moleski, sponsors a tournament every year and this year his company picked Children's because of Max. Many of you probably have received some info regarding this event in the mail and we hope to have a link in the near future (Uncle Zoomer, paging Uncle Zoomer) on this sight to provide the pertinent details. The date is Monday, July 14th. Our hope is to give something back to Children's for the families that will inevitably follow us who have extended stays in the hospital like us. We hope all of you block out that date on your calendar for what is sure to be a great event.

Finally, even though Max remain steadfast in his belief that the Mighty Ducks will win (just like he wanted the Avs), we sign off by saying, GO WILD!!!!!!!!!!!!!!

Monday, May 12, 2003 1:34 PM CDT

What a great weekend! Max is doing so well that we were able to go home on pass for a few hours Saturday and today. He is having a terrific time being able to come home and play outside with his sister,Bailey and dog Butkus. We also had a very nice day on Sunday. We enjoyed a nice luncheon for all the moms and their families, they even had gifts for the moms and cotton candy and snow cones for the kids. This was all made possible by the generosity of former families. We also had a fun visit from Trish's cousins, Dr.Mike and Lori all the way from N.D., they always lift our spirits and make the day more fun.

We are off to enjoy the beautiful day while we can. The kids are yelling at me to "C'mon Mom" and so I'll cut this short. Thanks to Auntie Linda for running Bailey around the last two days, you are the best.

Our doctor is meeting with the good folks at the University today, we are hoping to have a tentative plan in place as to what the next week or so will look like. Here's to busting out of Childrens in the next few days and not starting at the University until the beginning of the next.

Love to all, especially Nana and all our surrogate moms in Chicago, we could never do this without your help and support.
TPSPBM

Thursday, May 8, 2003 2:42 PM CDT

NEW PHOTOS

We are definitely in a holding pattern. Max's has yet to start building any white blood cells and has hovered at 100 with no ANC for the last two weeks. We are hoping that he will start rebounding soon so that we can move on to the next step of our treatment. We did get the call from the transplant center and our donor specimen has been secured and they are ready to go. That is, as soon as Max is ready, they are ready. We are hoping that when his counts do come back they rebound too quickly for the University to be ready, allowing us to enjoy a few days home, hospital free!!

This round has been so good for Max. He has been able to remain pain free and mobile. He is continuing to stay healthy, which will be a blessing with what he has in store. It has been nice too, in the sense that he is much more comfortable here. Because he knows everyone on the floor and is really not "sick", he doesn't NEED Mom as much. This has been great for Mom, who has been able to have some time with the other kids and her husband. Three dates in two weeks, more than the last 6 months combined!! Thanks to a collective effort from Uncle Brian and Uncle Larry, we even managed to watch the WILD win game 6 last night!

We ask that you keep us in your prayers knowing that in the days ahead we will be putting Max's life on the line to save it. Pray that we continue to keep our faith and hope alive in the possibilities it brings.
TPSPBM

Monday, May 5, 2003 3:11 PM CDT

Encouraging news today.....Max had a repeat CT scan today and things are looking pretty good. They are still seeing a bit of shadowing on the scan but believe it is scar tissue left from the biopsy before. We know for sure that what is there is not growing and that is terrific news!

I had been a bit nervous that things were going too well this round (you can never make a cancer mom happy!)and so I am glad to hear the news from the CT scan, now I can relax and appreciate how fortunate we've been this round. Today is Day 21 in the past this has been an extremely difficult time for us. This round we are enjoying a happy boy, who with the exception of blood and platelet transfusions, is very low maintainance. He is still eating and drinking on his own, moving about and hanging on to a full head of hair!
We look forward to his counts rising sometime the end of this week. If he responds quickly, we may even get to spend a few days at home before heading to the University.

You think there is nothing worse than having to put your child through more treatment, more chemo, more hospitalization. You then realize that it would be even worse to not have that as an option. We are grateful today that Max has a cord blood match, that he has responded to treatment, and that we have the opportunity to cure him with a transplant. Your prayers have been working, thank you!!

With love to all,
TPSPBM

Friday, May 2, 2003 4:09 PM CDT

We are officially in a holding pattern. Max has been doing so well this round compared to our previous visits. He spends a good portion of each day unhooked from his pumps, and is still eating and drinking fairly well. We are not expecting to see his counts returning for at least a week and so we are enjoying being low maintainance for once! It took until day 18 for his hair to fall out the first time...we have reached that point now and so we anticipate that happening sometime soon. It would be terrific if that was our major excitement for the week!

The last two days have been tough ones on the floor, a father lost his son today and our friends the Holts are facing difficult decisions concerning their son, another AML patient. You are reminded too often about the ugliness of cancer and the pain it brings families. The decisions they make today are the ones we all fear. We pray for Ryan as he battles on. That said, we are reminded how fortunate we are to still be fighting, and feel blessed to have the support of such a great staff. We continue to believe that this is the path God has laid out for Max, whose life is in his hands. Our comfort comes from knowing that his love for Max is greater than even that of our own.

Please pray that the effects of the chemo are still working on what remains of Max's tumor, allowing us to proceed to the next step of treatment.

BIG hugs,
TPSPBM

Wednesday, April 30, 2003 12:06 AM CDT

Well, there is good news and not so bad news for us to report. Max's test results are back and the good news is that Max's infection and fever seem to be under control. He has been fever free for the past 24 hours and is more like himself again. He has had fun playing with Uncle Brian and Bailey on the PacMan machine and coloring with Mom in the playroom.

The not so bad news is that the CT scan showed a significant reduction in Max's tumor(but we already could see that),however there is still a small portion of the tumor that remains. Because it has not been that long of a period of time since his body has "bottomed out", we will be repeating the scan next week and hope to see even more reduction. We were told that if a small amount of shadowing remains, we may need to do isolated radiation to that portion of the eye. It is important that we rid him of this tumor. This is the one outward sign of his relapse and it needs to be gone to consider him in remission. Since we know that the bonemarrow transplant will only take place if he is in remission, you can understand why we had hoped that all signs of the tumor would be gone. But, we know it is working and we keep praying that the news will be all good next week.

Mom is going to sneek away for a few hours today to spend time with the other kids at home. Max is excited to have Nana coming up to hangout with him for the day, and we are all glad to have her back with us for the week.


We appreciate you checkin in,
TPSPBM

Sunday, April 27, 2003 5:10 PM CDT

Our good luck ran out....Max is running a fever. Early this morning Max spiked a fever, blood cultures showed positive for a bacterial infection and we are now on antibiotics to fight if off. This said, many of the medicines paired with the infection cause Max nausea problems and so we have started throwing up as well. He is still in pretty good spirits, just not the energetic kid he was yesterday. We are hoping that the antibiotics will rid him of his fever and infection and will allow him to return to a more comfortable state.

Paul and Trish enjoyed a grownup night out. We want to thank our best babysitter ever, Joanna, for bravely watching all three kids at the hospital while we got dressed to the nines. We attended the fundraiser for the Kid's Cancer Fund and were touched by the number of people who were there and care about what happens to our children. We look forward to next year, when we can dress Max up in a tux and celebrate with him by our side.

Monday brings us to our CT scan and spinal tap with chemo. These will be important tests and we ask that you pray for great results. We want to keep Max in the best physical condition possible before beginning transplant and hope the results are favorable enough to make it so.

Pray for Max's infection and fever to end.
Pray for results to show that Max is in remission.

Thanks again for your support in our journey,
TPSPBM

p.s. please note we have a new email address-tpmadams@comcast.net

Saturday, April 26, 2003 11:07 AM CDT

Yesterday was a busy day for the Adams family. Paul and Trish headed over to the University to meet with one of the doctors on the BMT team and tour the facility. We are encouraged to know that they have found a potential cord blood match for Max. They are in the process of retyping it to confirm that it is a suitable match, and we hope to hear definitively in the near future. The biggest question now is if Max is ready to proceed. We will know more after the CT scan this Monday and the bone marrow test next week. Depending on the results they may request additional chemotherapy or localized radiation to the eye. We are hoping that results will be good and Max need only to recover from this round to be ready. Because Max relapsed so quickly, we realize how aggressive his cancer is, and are all in agreement that he needs this transplant and that we can't afford to wait too long between then and now.

Max is continuing to do well. He has experienced very little of the trauma from past rounds and is still "Max" and not that cancer kid that normally takes over about now. Other than one tiny mouth sore and a little paleness, you would never know that he has no counts. He is amazing!

It is difficult thinking about the next few months as well as the long term effects of his treatment. But, one only needs to know Max to realize that any setbacks he experiences will be minor to the greatness that is him.

We plan to enjoy these next few weeks here at Children's in the comfort of "home" before heading off to the unknown. We continue to pray that Max remain infection and fever free.

Big hugs to all,
TPSPBM

Saturday, April 26, 2003 11:07 AM CDT

Yesterday was a busy day for the Adams family. Paul and Trish headed over to the University to meet with one of the doctors on the BMT team and tour the facility. We are encouraged to know that they have found a potential cord blood match for Max. They are in the process of retyping it to confirm that it is a suitable match, and we hope to hear definitively in the near future. The biggest question now is if Max is ready to proceed. We will know more after the CT scan this Monday and the bone marrow test next week. Depending on the results they may request additional chemotherapy or localized radiation to the eye. We are hoping that results will be good and Max need only to recover from this round to be ready. Because Max relapsed so quickly, we realize how aggressive his cancer is, and are all in agreement that he needs this transplant and that we can't afford to wait too long between then and now.

Max is continuing to do well. He has experienced very little of the trauma from past rounds and is still "Max" and not that cancer kid that normally takes over about now. Other than one tiny mouth sore and a little paleness, you would never know that he has no counts. He is amazing!

It is difficult thinking about the next few months as well as the long term effects of his treatment. But, one only needs to know Max to realize that any setbacks he experiences will be minor to the greatness that is him.

We plan to enjoy these next few weeks here at Children's in the comfort of "home" before heading off to the unknown. We continue to pray that Max remain infection and fever free.

Big hugs to all,
TPSPBM

Thursday, April 24, 2003 8:59 AM CDT

****NEW PICTURES***

Day 10 and Max is still functioning at a normal level, a bit more tired than before, but still eating and moving about!! Our counts have finally hit bottom, now we sit and wait, hoping the next two weeks remain infection and fever free. Max is much wiser this time around and knows to enjoy every minute he can, while he can. He has kept Mom busy with activities. Bailey often requests a "girl" volunteer to play with, and for the first time Max asked if he could have a "boy" volunteer so he could play too. Even though he only lasted 1/2 hour, it was great for Mom to get the break.

We were happy to have Aunt Alane stop by for a visit yesterday. She came from Colorado enduring a flight full of Minnesota Wild fans, lucky for her Max likes the Avalanche so the teasing stopped here! It was nice for me to have some grownup conversation and see her again.

We plan to enjoy today, Friday morning we will be heading over to the Bone Marrow Transplant Clinic at the University, to meet with a member of their team and tour the facilities. We know it is a big step, but the right step for Max and so we are excitied to have the plans in motion. We are hoping that news of an acceptable match will be coming our way soon and hope to hear some preliminary news at the meeting.

The good news is that Max's eye looks terrific, it is nice that one need only look to see that the chemo is working. We will have a CT scan next Monday and a bone marrow biopsy on the 28th of this month. Both of those tests will determine if Max has reached remission, or if more chemo will be necessary. We know that we will not be going home from here, but will head straight to the University when remission has been reached and Max's counts are back to an acceptable level.

Enjoying the day and each other,
TPSPBM

p.s. big thank you to the Hall family for looking after our house and dog this week, you guys are the best.

Monday, April 21, 2003 1:47 PM CDT

Thank you for your prayers, we remained fever free and Max was allowed to bust out of here for the day on Easter. Paul took the big kids to church and then they stopped by the hospital to pick up Trish and Max and head off to Uncle Dave and Aunt Nancy's for our annual Easter gathering. It felt wonderful to join in the festivities and Max had such a great time playing with the other kid's. He was so happy to get a chance to leave for the day, he even put on his best shirt and tie for the occasion. After we left, we were able to go home for a few hours. Max said he knew our dog was missing him, so he was glad he could go home to give him a hug. They both fell asleep together on the couch, I think he was right, Butkus did miss him!!

Today finds us still feeling pretty good. We know we are just a day or two away from bottoming out, so we are enjoying feeling good while we can. Our friend Arlene sent a package with a disposable camera, Bailey and Max are having a grand time taking pictures of everyone and everything on the 8th floor. I think it will be fun to see the floor through their eyes, although I'm worried that their fingers may be in the way!!

We are so grateful to you all for everything you've done and continue to do to help us through. Please continue to pray for Max to achieve remission this round. Pray for that perfect match that will allow him to be healed from cancer. Pray for us to open our hearts to the life lessons we are meant to learn through this ordeal.

With love and gratitude,
TPSPBM

Saturday, April 19, 2003 9:16 AM CDT

It's Saturday morning and we are on our last day of chemo. We seem to be doing better these last two days, Max is feeling better, no fever, lots of energy and has started eating again! We will be enjoying these next 3-5 days, knowing that the full effects of the chemo won't hit him until then. We had a great day yesterday, Dad came up in the morning and he and Max spent the day playing. Later Mom and the rest of the kids came and Uncle Don and Aunt Sheila brought their boys along with dinner for the gang. Their is no doubt that kids are each others best medicine. They allow Max to "escape" from it all and just be a kid for a bit. We got a hockey net and sticks from one of our fellow hockey buddies on the floor and the boys had a great time playing with it..and not one fight broke out in the process!!

Yesterday, Bailey was thrilled to see the birthday cards and treats start coming in. Thank you for helping her see that she matters to everyone just the same as Max. It's comforting to see her so excited and happy.

We may get a short pass on Easter, so that Max and I can join our family to celebrate, if .....and so our prayer requests are very simple today..
Pray for no fever in the next 24 hours and that his counts remain steady for one more day,

We see and feel his presence through you,
TPSPBM

Wednesday, April 16, 2003 4:01 PM CDT

Day two...three days into chemo and the effects have already started taking a toll on Max. If he was a healthy kid at home, I would think that he had a touch of the flu bug. He has a low grade fever that has been hovering around 100 degrees for the past day, his "tummy hurts" and he is feeling tired and achy. That said, it is still mild in comparison to past experiences.

We are keeping busy watching movies and playing games, often times making up our own versions of some of the more grown up games. With the new rules in place, Mom rarely wins...they seem to benefit the 4 and under crowd. Bailey is already back in the swing of things and keeps the volunteers busy playing, a poor teen had to spend two hours playing Barbies with her yesterday!!

A big thank you to Uncle Brian, who has been holding down the fort while Paul was in California, we appreciate your help. Paul will be home now through the beginning of next week and so we will be able to share this special holiday time together.

Continue to pray for Max as he journeys on,
TPSPBM
p.s. for those of you who have been asking what you can do for us...Saturday is Bailey's 5th birthday and once again Max is getting all the attention. If you have a stamp and can send a card or note, we'd enjoy having her feel the same love and support that Max gets from you all. It's hard to be the brother or sister that sacrifices daily.

Tuesday, April 15, 2003 1:42 PM CDT

Well here we are right back where we started. We have settled back into our original room on the 8th floor of Children's hospital. We arrived early yesterday morning and started off with a test of Max's kidney functions, then up to clinic for blood draws and finally to the 8th floor. Because the results of the test were normal, we began the first of 6 days of chemo. Max will be getting a new chemo drug this time, since his cancer has never seen it before we are hoping that it will be less resistent to it. It is blue in color and may even turn the whites of Max's eyes a bit blue!!

While we wish we didn't have to be here, it was comforting to have a place like this to come back to. It was upsetting hearing the news of Max's relapse, but I was amazed at how much better I felt by yesterday afternoon. I just know it feels better to be doing something to rid Max of this tumor. I am not sure how many days it will take for the tumor to "dissolve" from the chemo, but I anxiously await the visible signs that the treatment is working.

We will try to update daily now that treatment has begun and prayer needs become more specific.

Pray that Max rid himself of the tumor in his eye and regain remission.

Pray that a match will be found for a successful bone marrow transplant.

Pray for the entire family, that we have our eyes and hearts open to the lessons we are meant to learn on this journey.

Love to all,
TPSPBM

Wednesday, April 9, 2003 7:23 PM CDT

The verdict is finally in. After reviewing the chromosome test the pathologist was able to determine that Max's cancer is indeed back. When Max was diagnosed tests were run to determine which chromosomes had been effected and to view what changes had taken place. This last test was able to isolate those specific chromosomes and probe them to see if the new tissue sample was showing similar results. Unfortunately for us, the results were the same.

More often than not when a relapse occurs you'll see it first in the blood, bone marrow or spinal fluid. When Max was initially diagnosed he had a tumor in his lung. This could just be a reflection of his particular cancer that it shows up first as a tumor.

Needless to say our summer plans have changed dramatically. We will go back into the hospital this Monday to begin a round of chemo therapy that will hopefully throw Max back into remission. Because his bone marrow and spinal fluid are good, we will be using CT scans and MRI's to determine when that is. They told us to expect that round to last at least 30 days. When that is finished Max will head straight to the University hospital where he will undergo a bone marrow transplant to hopefully cure him for good.

In December, when Max's outlook was grim, we turned our battle over to God. I know he is looking out for Max and will see him through this next patch of road. I think it is interesting that Max was the kid that was randomized into a fourth round. If it hadn't been for that his hickman would probably been removed and it could have taken longer for them to realize that he had relapsed. This is our path, we don't like it but we accept it. Truthfully, I am mostly concerned about the other kids. They deserve to have a great summer after this year of sacrifices and I don't know how we'll manage it all. I am upset about the relapse but I am not afraid, I know Max can do it.

Please pray for that this next round of chemo is successful. Pray that Max has minimal effects from it.

Pray that out there some where is that perfect match for Max's bone marrow, one that will allow Max to rid his cancer for good.

Pray for strength for the family as we begin yet another journey.

Your love carries us through,
TPSPBM

Monday, April 7, 2003 9:39 PM CDT

Today finds us at home, still waiting. The test results have yet to give us the definitive answers that we are looking for. Our doctor told us that there is one other test that they can run that will give a more certain answer, and so we will wait until Wednesday to hear. The pathologist said that if he had to make a decision today, would say it is cancer, but we have been down that road before and so we wait for proof not speculation. The good news is that we have another day to pray and hope and gather strength.

One of the mothers I met on the floor called today to tell me that her son had passed away. I was reminded that no matter what, we are blessed because Max is still here with us today. We pray for Alfred and his family in this difficult time.

Thank you for joining us on our journey,
TPSPBM

Saturday, April 5, 2003 8:53 PM CST

We're home again! Max seems to be feeling fine after undergoing his tests yesterday. He mentioned that his back hurt, probably from the bone marrow test, but hasn't complained about his eye.

We are once again confronted with the news that the pathologist is fairly certain he sees leukemic cells in Max's tissue sample. Since we have been down this road before, they are waiting until there are definitive answers from the chromosome testing to make an actual diagnosis. Max's bone marrow and spinal tap both came back fine, they think that these are AML cells that hid out and survived throughout his treatment only to come back now that his body has recovered. Givin the choice between the hospital or home, we decided to spend the weekend home together. We will meet with our oncologist Monday afternoon to go over the results and the best course of treatment.

We are calling out to you all again, your prayers have carried us this far. Please remember Max tonight.

Faith Hope Prayer
TPSPBM

Friday, April 4, 2003 10:46 PM CST

Greetings to all.

Once again Max has chosen the more challenging route in his treatment. He was supposed to have started his interleukin (IL2) treatment this morning, but due to a little swelling around his right eye, the doctors wanted to check that first. Max proceeded to go through his day getting all his normal tests done and the results we got back show no sign of cancer or at least he remains in remission. Unfortunately, Max's eye started to get more attention as the day went on. What the doctors wanted to do was get a biopsy of the mass that has begun to form. What they are checking for made us feel a small case of deja vu.

The three possibilities around the eye would be a small tumor, an infection or just some damaged tissue. Max was under about ninety minutes while they tried to biopsy the tissue. Because it was such a hard mass, they actually had to do two biopsies before they had enough usable tissue. While we wait until tommorrow for the results, the doctor who did the biopsy said the mass was consistent with a tumor as there wasn't a lot of blood or noticeable infection. For the many of you that have been with us every step of the way, does it sound like what we were being told right before Christmas? We remain steadfast in our belief that Max is going to get through this and believe us when we tell you that Max is one of the toughest kids ever. His eye patch is on the opposite eye of the black eye he had, which is his green eye.

What this does mean for us is Max's hoped for four or five day stay is rapidly looking like it will be an extended stay again. If the results of the biopsy turn out to be cancerous, then Max would go back to chemotherapy treatment. If the biopsy shows infection, then Max would be treated with antibiotics which delays the IL2. If it was damaged tissue, they would decide what to do from a couple different options. The other sign that this could be a setback is that the eye is one of the more common spots for a tumor to reappear.

Again, we feel like we've been in a worse spot and got through it to see better days ahead so that is very much our approach now. Plus, we will not have definitive results until tommorrow. We ask again for your support and prayers for our little trooper as he continues his fight to beat this. Thanks for checking in.

All our love,
TPSPBM

Monday, March 31, 2003 1:07 PM CST

This entry finds us enjoying that everyday life we take for granted. Knowing that we will be back in the hospital this Friday, we are trying to have fun while we can. The kids had spring break last week, so we took advantage of the time off and drove to Nana and Papa's house in South Dakota. It was our first trip in seven months and that in itself made it a big deal. The kid's had a great time hanging out and spending time with two of their most favorite people. We had a chance to visit with many of the people in Yankton that have supported us in our journey. We feel so grateful for all the encouragement they sent our way.

Max is scheduled to go into the clinic first thing Friday morning. We will also be having an EKG and chest xray done before we head up to the 8th floor. While we are not looking forward to being hospitalized again, it will be nice to see the friendly faces of the staff once more. If all goes well we should be home by the following Monday, Tuesday at the latest.

Pray that this round of treatment goes well and that Max continues to remain in remission.

Love to all,
TPSPBM

Monday, March 24, 2003 8:53 PM CST

Greetings to all.

Sorry about the inconsistent updates but we've been having trouble logging on to the caring bridge page through our home computer. Max's clinic visit on Friday went well. He has good counts (ANC +2400) which means Dr. O'Leary says he is able to go places more freely and without having to wear a mask. We took advantage of this by attending church with the whole family which has not happened in quite some time. Like all of you, many people in our parish have kept Max in their prayers so it was nice for us be able to attend so people could see his progress in person.

We have scheduled Max's next (and hopefully LAST) round of treatment for April 4th. This will be good for a couple of reasons. First, Paul will be home for the majority of Max's treatment before he travels to San Francisco for Friday's Franchise Owners conference. This treatment will be a lower dose of chemo so it should not be as tough on Max to handle. Max is expected to be into the hospital for five days.

Second, Max has been battling some flu like symptoms that are related to his last spinal tap. The additional time until his next treatment will give us a chance to get his appetite back as he has experienced some weight loss recently. We're hopeful the extra days will make Max feel better and start eating again so he has regained some strength for the treatment ahead.

It's been very nice to be home to enjoy some great Minnesota weather. All the kids helped Dad set up the trampoline on Saturday and we spent a good portion of the weekend outdoors enjoying various activities. Max really seems to be enjoying his time outside although it does make him tired. Still, it's great medicine for Max to be at home and inch by inch getting back to the business of being a three year old boy. Our whole family continues to enjoy that road back to a life of normalcy. We remain optimistic that this round does the trick although we're very aware that 50% of AML kids will relapse. Keep hanging in there with us on the final phases of his treament. We appreciate your support.

Love,
TPSPBM

Tuesday, March 18, 2003 4:51 PM CST

The results are in....1.9% blasts and the biopsy looked good!! The doctor's consider anything under 5% remission, so needless to say we are thrilled. Just to give you a bit of perspective, Max had over 60% blasts in his blood when he was diagnosed. They will be sending a piece of his actual bone for DNA testing and those results should be back in the next few weeks.

I am going to steal this next part from our buddy Drew's site, because I think his mom, Kay describes it so well. "Imagine bone marrow as a group of people. Blasts are the infants. Healthy blasts(like the ones you and I have)grow up and become productive adults. Leukemic blasts never grow up and eventually crowd out the adults so that the more important jobs that your blood does don't get done.(immunity, carrying oxygen, etc.)" The DNA testing will be able to tell us if the blasts in Max's blood are leukemic or not. They did this procedure on Max in December when they had concerns of relapse and the results then were very favorable so our doctor feels that this test will be as well.

In talking to Max's doctor today, I was telling her that it feels as though we have just finished running the marathon of our life. Just as we are crossing the finish line we see that it's really just a pit stop and that the endline has been moved back again. That said, it only figures that the kid that spent soooo much time in the hospital would be the one that would get randomized into the fourth arm of the study that all the AML kids are part of. This means that Max will be going back into the hospital for at least 5 days. He will have a 4 day rest then receive 10 days of low-dose chemo continously through his hickman by means of a small pump. The chemo that he will be getting is a white blood cell growth hormone that we make in our bodies. That chemo kills AML cells and helps other cells in the body to destroy AML cells. We are not excited about the idea of putting Max through more treatment considering what he has been through. In December, when Max was so sick, God stepped in and we feel that he is doing that now. Perhaps,for Max this is that last something that he needs to remain cancer free.

We will be back in the clinic on Friday and will update then. We do know that we won't be starting chemo until the end of next week as Max needs to be off of his steroid medication for a time period before we can start treatment. Please pray that this is the right decision. There is always risks with any type of chemo and we ask for your prayers of support to get us through. Thank you for hanging in there with us on our journey.

We put the party hats away for now, but dance a little jig to celebrate today's news.

TPSPBM

Saturday, March 15, 2003 6:02 PM CST

This week has found us feeling the effects of the chemo a bit more than last week. Max has been dealing with fatigue and nausea off an on the past few days. He likes to see how many days in a row he can make Mom wash all the bedding! Needless to say, it has become such old hat for him that he continues on with his normal routine, stopping for a quick power nap or to throw up and then back to whatever he was doing before the interuption. He really is enjoying getting back into the real world and has had a great time outdoors the past few days.

The other kids are really enjoying the normalcy of us being home, you can see the difference in them. Mom is trying to figure out how she got everything done before this all started, it has been a bit overwhelming getting back into the swing of things. Paul is traveling most of this month and we are hoping to make a trip to Nana and Papa's house. They need their Nana fix!

Monday is our big day, it will determine what the rest of our treatment plan will look like. We are hoping that it will include the good news that Max remains in remission. If so, we may even set a date to have his hickman tube removed from his chest. He has a bit of Irish blood in him and so we are hoping that the luck of the Irish will be on our side come Monday. We are asking for all those that read this to say an extra prayer for Max on Sunday night. We have witnessed the power of your prayers and thank you for caring enough to continue.

TPSPBM

Monday, March 10, 2003 8:44 PM CST

One more down. We entered short stay early this morning for Max's 2nd of 3 spinal taps. The entire procedure is very short. We start with a quick examination and set of vitals. Then the nurses draw blood for a CBC workup to check all of Max's counts. While we are waiting for that we watch a movie and order breakfast since he is not allowed to eat or drink before the spinal tap. They give him a dose of Zofran to help with his nausea....no more puking by the giftshop...and then we're ready to start. They give him propofol, a white liquid, to put him to sleep. One of the kids calls it "milk of amnesia" because you can't remember anything that's happened when you wake up from it. Another of the kid's calls it "white lightning" because it takes but a couple seconds to put you out. They put a small needle into Max's spinal column and the spinal fluid drips out. After they've collected two vials of it, they inject him with a combination of three chemo drugs and we're done. Today Max woke up after a few minutes and wanted to eat right away, he was in a good mood and so we went up to the 8th floor to visit with some of the gang.

In so many ways it has felt like an eternity that we've been dealing with Max's illness. I think anytime you have someone you love so sick it must feel that way. But, being back in the "real" world reminds you that for most people this last six months was just a flash in the pan that has passed very quickly. In the couple of weeks that we've been home I have found life swallowing us up and have enjoyed getting back to the ratrace of running a family. However, there are many more times when I stop to appreciate what we have.

Next week will be a big day for our family. Max will have his last spinal tap in addition to a bone marrow biopsy. We will know then if there are any signs of a relapse. Please continue to pray for Max to remain in remission, cancer free.

Thanks to all,
TPSPBM

Monday, March 3, 2003 2:55 PM CST

One down, two more to go! Sometimes it's hard to believe that we are so close to the end, it feels like we've been at this forever.

We were warned to be on time this morning, 7:30 a.m., they said they like to get started right away. Well, not everyone checked the weather report when they woke up and we waited until 8:45 for the intensivist to arrive as he was stuck in traffic. Needless to say once we started the whole thing went really fast. It was nice to get to watch them in action and actually see what happens. They did draw some of Max's spinal fluid to test for any sign of relapse before injecting him with a combination of three chemo drugs. It reminded me of catching sap that drips from a maple tree except that the fluid itself is clear like water. The oncologists will only call if they see signs of relapse, so far so good. Please continue to pray for Max to remain in remission.

We were able to go home shortly after Max woke up. We made it to the gift shop in the hospital before the nausea set in. Max was wearing his mask and bundled up in his coat when he threw up,it was not a pretty sight! I was never a fan of milk and eggs at the same time, that sentiment is now solidified. As of now he is back to his normal self, definitely minor compared to what we've been through.

We celebrate another day closer to completion and thank you for your prayers and support.
TPSPBM

Thursday, February 27, 2003 2:58 PM CST

Great news today! Max's counts look good enough to start the last phase of his treatment. We will be going into the shortstay area of the hospital on Monday morning at 7:30a.m. where Max will get the first of three chemo shots directly into his spine. From what we hear this procedure should only take an hour or so and then we will be able to go home for another week. We are so grateful that despite Max's cold, his counts were able to recover quickly. It was very encouraging to see his platelet count rebounding and his ANC count was at the very edge of the normal range.

We also got to stop up and see so many of the familiar, friendly faces on the 8th floor. We missed all of our primary nurses again, but did get to see many of our other favorites!!

We will try to have new pictures for you all in the next day, Max's eye has healed up quite a bit and his bald spot has filled in too!

Thank you all so much for your continued prayers,
TPSPBM

Tuesday, February 25, 2003 8:20 AM CST

Today finds us all on the road to recovery. Both Bailey and Max are feeling much better. Just a bit of a cough and a little stuffy nose left over from their colds. I've heard others say that it can take a few weeks to feel completely better. We actually got out a bit in the last few days. We went to watch Bailey at her acting class, their group gave a little performance, and she was great, smiling the entire time!! We even had a play date at cousin Jake and Zach's house.

We have the next few days off to just enjoy, then Thursday we go back into clinic to see what Max's counts are and if we are ready to begin the last phase of outpatient treatment.

Keep praying for a full recovery,
TPSPBM

Saturday, February 22, 2003 5:07 PM CST

Just a quick update today. Not much to report, we are continuing on with our everyday living as we wait for Max's counts to return. We are ambitiously looking to begin this last phase of outpatient treatment next week, but realize it may take up to three more weeks before Max is ready. Our biggest concern right now is the cold that has been passed around the family. Max has been suffering with a runny nose and cough, today he has a low grade fever. I am mostly worried that his fever will go up, in which case we need to call the clinic and could end up back in the hospital for a few days. The cold is also diminishing his appetite and it's important that he keep eating to regain his strength. We don't want the cold to hold back Max's counts in any way. Please pray that this common cold will be just that, and that in a few days time Max will be good as new!

You carry us through,
TPSPBM

Thursday, February 20, 2003 7:05 PM CST

We had our clinic visit this afternoon. Max's counts are progressing nicely, except for his platelet count. He will need to have a count of at least 50,000 to begin the next phase of his treatment and today was only at 19,000. I think he used a bunch up just trying to heal that shiner of his!! His white blood count and ANC look good and so we are free to move about the "real" world with just a bit of caution.

Bailey has been suffering from a cold, unfortunately this is one of the few times she is freely sharing with her brother, and so, Max too has caught the cold. The sad part of it all is that we were able to remove most of his meds today and needed to replace them with a variety of cold remedies!

It has been such a treat having Max at home. I get a kick out of sharing in his enthusiasm for the most everyday things. He just can't wait to feed the dog and cat, pick out his clothes for the day, even brushing his teeth is a celebration for him. I guess when you spend so much time feeling like you're dying, livin' in and of itself is alot of fun! The only time he seems to show a bit of the leftovers from treatment is when he wakes up from a nap. He almost always wakes up crying and needs Mom to comfort him for a bit before he's ok again. I think he is having dreams of a giant size tylenol syringe coming to get him!! (our nurses will know what we're talking about!) I look forward to it happening less and less as time goes on with the days in the hospital becoming the positive memories we plant for him.

We ask that you keep praying for Max to remain in remission, that he be cured from cancer.

It's in his hands now,
TPSPBM

Monday, February 17, 2003 11:56 PM CST

Today was our first day back to the hospital for a clinic visit. They drew Max's blood at the clinic and his numbers looked pretty good. His ANC number is over 550 and so we are thinking that by Thursday he will be over 1000. I was happy to hear that his potassium level was in the normal range and his white blood count was good as well. The only number that was low was his platelet count. Max's platelet level was only 14,000 and will need to be at 50,000 before we can begin his spinal treatments. We did have a transfusion and that made for a long day, but we are glad he is doing so well.

We enjoyed our weekend at home together. We spent most of it just hanging out and getting reaquainted with all the old toys and movies. Bailey is feeling a bit sick and so mom has been playing nursemaid to her. I think it's important to her that we make a big deal out of her not feeling well too! We are a bit anxious as Sammy leaves on a school trip in the morning for Washington D.C., of all places. Between the terrorist threats and the weather we are saying prayers that all goes well. I know she was happy to have the days at home with Max before she left.

Max did have a run in with one of our chairs on Sunday evening. Luckily for us his platelet level wasn't any lower or we'd of probably had an emergency trip to the hospital. The results were a big ol' black eye that makes him look even tougher than he already is. We will have a picture for you all to see.

We will be back to the clinic on Thursday to have blood tests again. Hopefully, we will have good results that bring us closer to the end.

Thanks again for checkin in,
TPSPBM

Look for new photo!

Friday, February 14, 2003 5:42 PM CST

It's Valentine's Day.....can you feel the love? We can!!! This will have to go down as one of the best Valentine's Day ever, our Doctor told us this morning that Max could go home, TODAY! Paul went to pick up Parker and Sammy from school and then together as a family we walked out of the hospital, intact. We were greeted at home by a big "Welcome Home" banner on the garage and "We love you Max" across our front windows. What a terrific feeling seeing those words and knowing they were true, we are home finally.

There are so many people to thank, you hardly know where to start. To the staff at Childrens, the doctors, C.S.A.s, childlife staff, and all the nurses, especially our primary nurses...Thank you! If you ever have to take a 6 month vacation to a place you never want to go, these are the people to pack in your suitcase. You helped to make the unbearable, bearable and we will always be grateful for your presence in our lives during this time when we really needed it.

Max will go back in to the clinic to check his blood counts on Monday. He will need to wait until his ANC [absolute neutrophil count] is over 1000 without the help of GCSF before he begins his spinal injections. We are expecting it will take at least 2-4 weeks to get to that point. Max will need to go in once a week for three weeks to receive the injections, then we will do a bone marrow biopsy and determine the rest of his treatment plan. Max's ANC today was 90, normally you need to have an ANC of 200, just to leave the room without a mask. The only other place that is safe enough for him at this point is home, but we will need to be very protective of him until his counts are higher. So, while we would love to have visitors, we will have to stick to phone calls and emails for now.

I have such mixed emotions today. I am thrilled to get to be home but feel as though I've taken a big breath and am going to need to hold it until we've had the bone marrow biopsy and know that Max is still in remission. We feel very fortunate to have had so many family and friends join us on our journey. The road is not nearly as frightening nor as long when others carry you along the way. Even though we've weathered the storm, we are not to shore yet. Please say a prayer for Max tonight, that this is the truly the beginning of the end. We will continue to need your support in the days ahead, so keep praying and checking in on this site for what we hope is continual good news.

The words are simple but they mean so much, "Thank you" and God Bless,
TPSPBM

Wednesday, February 12, 2003 2:58 PM CST

Another day of encouraging news. We were able to pull a few more meds from Max's schedule, he is now on just his basic coverage and still fever/infection free! Max's ANC is 25 today, which is a good sign. Once he reaches that point it is almost always a sure bet that his numbers will start recovering quickly. We are now focusing on his diet and making sure that he is eating enough and enough of the right things to keep his nutrition levels where they need to be. The end is near, we can almost taste it....I am almost leary to mention it, I'd hate to jinx it at this late stage of the game. Please continue to pray for Max's count recovery and remission from his cancer.

I met my Mom, Bailey and sister-in-laws Linda and Sheila for lunch, a nice break from the hospital food. On the way home I tuned in to the St. Jude's radiothon. It brought a tear to my eye to listen to the children tell there stories. Sometimes it still amazes me that Max is one of those kids, I think of all the times I've heard the stories or seen the advertisements on T.V. never realizing we'd be living it someday. Remember what a gift it is to be able to tuck your kids into their own beds at night, to watch them run around playing and even fighting with their brothers and sisters...I really miss it and can't wait to have that piece of our lives back. Hug your kids tight tonight for us and tell them how glad you are to have them healthy and in your life.

Grace and Peace,
TPSPBM

Monday, February 10, 2003 10:02 AM CST

Today finds us continuing the holding pattern that we've been in the past few days. Max's counts are still low, but he has had a double digit ANC for two days in a row. He is still in need of transfusions and will be getting red blood cells today and platelets tomorrow. It would be great if he was able to start producing enough of his own to sustain himself. The good news is, that because he has been doing so well, we have pulled him off of half his antibiotics and he is remaining fever free! Hopefully, we will continue to peel away at his meds so that when his immune system is where it needs to be, we can be out of here! Max is continuing to eat. Last night Mom was sent to McDonald's at 8:30 p.m. to get a cheeseburger, the lengths you will go to just to get your kid to keep eating.

We had lots of company yesterday from both sides of the family. I can see the effect it has on Max's spirit, it really makes him want to get better, get back into the real world. We will forever be grateful for the gift of family we've received.

Max is asking for food and so I'll sign off for today, with fingers crossed that tomorrow will be the day we start back.

Love to all,
TPSPBM

Saturday, February 8, 2003 1:35 PM CST

Things are starting to look up a bit. Max requested baby carrots and dip and actually ate a few. Later in the day, Dad brought out some pistachios to munch on and Max started chowin away. I think we have found the jumpstarter to eating for this round.....pistachios!!!

We started using a spearmint oil to scent the room and tucked a cottonball with it into his pillowcase at night. We went the whole evening and thus far today with no puking! This is a good thing since earlier in the evening he had thrown up his Tylenol all over Jody, one of his most favorite nurses, causing her to spend the rest of her shift in surgical scrubs. I'd be less than honest if I didn't admit that I was glad it was her and not me!

Today we are in great spirits, moving around quite a bit and painting dinosaur models that we put together. His counts are still low but we really are encouraged that he is feeling better and hoping that his immune system will start rebounding soon.

Looking forward to being home SOON,
Love and hugs,
TPSPBM

Thursday, February 6, 2003 3:26 PM CST

Today finds us with (barely) a double digit ANC!! Max spent most of yesterday sleeping, he received some blood later in the day but did not see the rewards of it until today. It is amazing the difference in appearance and energy level a little blood makes. This round alone Max has had blood transfused on 6 different occasions, platelets on 4. The normal range for platelets is somewhere around 150,000 we have had days when Max's number is as low as 7,000. It will be a personal goal of mine to get back to donating blood on a regular basis. I am so thankful to the people who make the effort as it is a much bigger deal than you realize.

Other wise things continue to continue on. Max is still throwing up and has no appetite. We have started him on his nutrition in a bag, otherwise known as TPN and are still searching for that one item that will jumpstart his appetite again. We are grateful that this is the worst of it, and pray that it only gets better from here. Max's bottom actually looks like it's getting better and the doctors are not feeling anything unusual in his neck. It would be great if we could be out of here in the next two weeks, I want to stop calling this place home and refering to home as a "break". Please pray for Max's continued recovery minus complications.

As always thanks for your support,
TPSPBM

Tuesday, February 4, 2003 5:26 PM CST

Today finds us in much better spirits. It seems the changes in meds have made a difference..we've only thrownup once this morning! Max still isn't eating but we are hoping that by tomorrow he is feeling up to it. We are concerned that his potassium level has dropped to a dangerous level and so they've tripled the amount he is getting and are keeping a close eye on him, hopefully by morning he will be back to normal. It was nice to see him want to get dressed today and take a few walks around the floor. Keep your fingers crossed that his counts will start to rebound in this next week ahead. His own body's immune system is the best medicine available to him and so we pray he builds that ANC faster this round!

We added a new picture today so that you can see Max's crazy new hair. He hasn't lost any yet this round and so he has about 70 days worth of growth on his head. It looked black when it started to come in but is getting lighter as it grows, it also goes many different directions and so Mom may get her curly haired kid back yet!

It has been a treat to see some new names of old friends added to our guestbook. Each of you help to make the battle easier.

Love,
TPSPBM

Monday, February 3, 2003 3:17 PM CST

It's a throwup festival!! We started a medicine called ampho,(for short)on Friday night, neadless to say by Saturday morning Max had started to feel crappy. The last two days have continuously gotten worse and today he has gone through 6 shirts, 3 blankets and a whole lot of washcloths! The doctors have made a decision to change up his meds and will be taking him off the ampho and trying something different that does not have as harsh of side effects. As you can imagine, Max hasn't eaten much the last two days, but he has been craving Pepsi like it's going out of style. I think it settles his stomach and gives him back a bit of the potassium he is losing. We had a visit from the massage therapist today and once again she was able to provide Max some of his first real relaxation for the day. It even put him to sleep and allowed me a brief break to hop on the computer. We are waiting for the aromatherapist to stop by with some peppermint therapy to help with the nausea, I really wish someone had told me about this when I was pregnant! The good news is that Max's fevers are somewhat under control, he hasn't needed any medicine for it since yesterday. Please pray that he continues to find relief from fevers.

With Paul out of town, many people are helping me out with the kids these next few days. Thank you all for your help, what would we do without you? The kids are excited to have Grandma coming back to hold down the fort this next week, we are especially grateful to her and Papa for their sacrifices.

Pray for Max's cancer to remain in remission.
Pray for comfort from his treatment and return of his counts.
Pray for safe travels for Paul as he is driving throughout Wisconsin this week of snowy weather.

Big hugs,
TPSPBM

Friday, January 31, 2003 at 09:54 PM (CST)

Here we go again. We knew it was going too well to be us!! Max started fevers yesterday and got to 104.3 degrees in the night. He has spent much of today fluctuating up and down on the fever scale. Because of our history with infections they did not waste anytime in changing up his antibiotics and sending us for a CT scan. We did do a full body scan and the only thing that showed up was some fluid in his bottom. So, you all know what you will probably be reading about here in the coming days...looks like Max is headed toward bottom troubles again. He has already started having a bit of discomfort at times, but so far no real pain to speak of. We keep hoping that his counts will come back in the next two weeks, thus avoiding alot of the troubles from the past. The good news is that he is still in decent spirits and eating, two positive signs for recovery. Max even got his first massage today from integrative medicine, he was a bit leary but, when she left told me "that felt really good"! We hope that by providing a few of those services we will keep him on the positive road to recovery.

Thanks to all those who have continued to provide us with food and favors, we truly appreciate it...it's hard to believe we have already been in the hospital 21 days this round. Thank you to Jeff and Karen Adams for the big box of goodies that they sent to the nurses on our floor. They deserve it and so much more for taking care of/putting up with us for so long
Peace to all, keep praying
TPSPBM

Tuesday, January 28, 2003 at 11:01 PM (CST)

Greetings to all.

Max continues to show what a tough little kid he is. Although his counts continue to drop, he has been amazing in not allowing anything to affect his attitude. When we reflect on the last round, we gladly put up with the Max of round 3. This go round finds Max eating, walking, listening to music, dancing with his sister, talking a mile a minute, watching movies and taking a much greater role in his care. It really has been a joy for us to watch. If we ever tire of the ten daily trips to the movie closet and the five to the vending machines all we need to do is think of how Max was and we're very grateful he remains so active. We are reaching the point in this round where we'll hit the bottom and we hope that Max's body continues to stay strong as long as possible. So far, so good.

As for the latest on counts, Max had an ANC of 5 today. His bottom remains free of infection and looking better than it has in a long time. The scar on Max's neck continues to look better as all the stitches disappear. He still has hair on his head but it's starting to look like it did before it fell out the last time.

On the family front, we owe a huge thank you to Uncle Brian for all his efforts at the hospital and home this past week. We truly could not have done it without you.
Thanks also to Uncle Larry and Ryan for hanging with Max while Mom was working and Dad was at dance class with Bailey. Uncle Larry's stock rose even higher with Max when he told Max that Spiderman was coming to town in March and that he had gotten tickets to the show. Even Max knows he wants to be unhooked by then so he could go. Talk about incentive.
Thanks also to Don, Sheila and the boys for coming to visit. This is where we normally would say look at the new pictures but the camera was left at the hospital. We'll promise to have the pictures updated tomorrow. Look for a new picture of the newly formed M & M gang, Max and Mitchell.
Finally, the other difference lately has been our AML gang has not been around the hospital. We continue to think about all of them often and are glad Christie and Drew continue to spend time at home. For people in the Twin Cities, Christie's piece on KARE-11 airs this Sunday night. We are especially thinking of Ryan as he has had some ups and downs on his recovery road. We ask for prayers that Max remains upbeat and infection and cancer free. We also ask prayers for Ryan as he battles through the effects of his treatment.
As always, we are grateful for your love, prayers and support.
Love,
TPSPBM

Thursday, January 23, 2003 at 06:51 PM (CST)

I am writing with not much to report. It actually feels pretty good to not have a day full of fevers and throwing up to talk about. Max's meds are at a minimum right now and we will be finishing up with chemo tonight. We have had a much better go around these last two days with the chemo, Max seems to be tolerating it much better. I really do hope that we are able to minimize the damage this time and avoid the nasty infections that plagued us through the other rounds.
Our friend Christie left the floor yesterday having finished round three...she began treatment a week behind Max so that should let you know what a slowpoke he is! We are sad to see her go, but thrilled that she is finished with the tough stuff. We are now the only remaining family here of the original group of five. We ask that a special prayer go out for baby Ryan, the smallest of our gourp, as he undergoes a bone marrow transplant at the University today.

Your prayers are our most powerful medicine, please keep us on your lists.
Big hugs to all,
TPSPBM

Tuesday, January 21, 2003 at 03:43 PM (CST)

Eleven days in the hospital and so far so good. Max is still in great spirits, the nurses and I all agree that this is the best he has looked since October. It has been good for the soul to see him this way, laughing, moving about and most excitingly, eating! It is hard to believe that a few short weeks ago he was the kid that had had a fever for 50 days, not eaten for 45 days and had spent the good part of 40 days in bed not moving. What a lesson we've learned about keeping the faith in times of despair, Max is living proof!

Wednesday brings us to another day of chemo....God willing two more days and we will be DONE! Max's counts have already begun their decline, we anticipate after the next couple days that they will bottom out again. We really pray that we can avoid the fevers and infections of the first two rounds. (A repeat of the last round could make us legendary around here.)

Nana is enjoying a week in Palm Springs with Grandpa. It is well deserved as she has been a true lifesaver for us. In the meantime, Uncle Brian has come into town and has been helping out with the kid juggling and dog watching. Hopefully they won't tire him out before the week's end. We really appreciate the help and the kids get a kick out of having a fun grownup around.

Thank you for your support. We ask that you continue to see the battle to the end through prayer and positive thought.

As always...much gratitude comes your way,
TPSPBM

Saturday, January 18, 2003 at 01:45 PM (CST)

We are officially on day three of God willing, Max's last round of chemo ever!! We will have two more doses of chemo on day 7&8 and then wait as Max's counts bottom out and he recovers. We are still expecting it to take till about day 21 to bottom out, so we know we are in for another long haul. The bad news is that because Max did spike a fever each night with chemo, he is not being allowed to go home days 2-6 like most people do. This was a bit hard to take, as the days home seem so few and very very far between. We just keep our eye on the prize and know we need to do whatever it takes to get Max well. This round of chemo seems a bit harder on Max from the onset, it really wipes him out...a energy zapper, and it has caused more nausea than the other drugs. We pray that this will be the worst of it, and that his recovery will be smoother than that of the other rounds.

pray for Max's continued remission

Love to all,
TPSPBM

Wednesday, January 15, 2003 at 10:22 AM (CST)

Today finds us finally being given the green light to start round three of chemo. The doctors are in agreement that Max's scar is healing nicely and that he should be at low risk of reaccuring infection, even though we start chemo today it will be ten days before his counts drop to a dangerous level. This round is a bit different in that we are in for two days and then go home for five and return for the remainder of chemo treatment. We are really looking forward to being home for those few days to help us mentally gear up for another long haul. The doctors have said best case, we will be here for three to four weeks, worst case, we will repeat ourselves from last round. Max himself is in great spirits and has been up and around quite a bit. We all enjoy seeing him this way, the memories of him unable to get out of bed for so many days lingers in our minds and we our lifted by his spirit today.

We have talked many times about our original AML group, and have asked for you to pray for the group on occasion. Today finds us with an especially heavy heart and we ask that you say a special prayer today. Nathanial, the little boy who had just finished his treatment for a bone marrow transplant, was admitted here on Friday for a relapse and unfortunatley passed away this morning. We are in mourning for the entire family, wonderful people who loved their son so much and would have done anything for more time. We know what strong faith they have and hope that in time God provides the answers to why this had to happen. I hold Max especially close today, appreciating this good time that we have. Please pray for the other families in our group too, it is a difficult thing for us to endure a loss to the group.

Thanks for walking the journey with us, please pray for a smooth round three for Max, and ask God to keep him in remission.

Love and hugs,
TPSPBM

Sunday, January 12, 2003 at 03:07 PM (CST)

Greetings.

Not a lot of news to report on the Max front. He continues to recover from his surgery and all is going well. His counts have stayed strong and he wants to get out of his room and his appetite has been good. We really want today's message to be about Max's new cousin, Mitchell(we think). Sheila gave birth yesterday and even though all of us didn't get a chance to see him, we were able to get some pictures which we'll share with all. Baby and Mom are both doing well and recovering. Sheila said she's pretty certain on the name and new baby Adams will have one by the end of today. Wow, the Adams family sure is making good use of all the doctors on Chicago(see we can't get away) Avenue.

We hope Mitchell will be able to be seen down in the regular materity room starting Monday. As for Max, he'll be seen by Dr. O'Leary on Monday to determine exactly when he starts round three. We have many blessings to be thankful for, especially today for our new cousin/nephew.

Love,
TPSPBM

Friday, January 10, 2003 at 07:38 PM (CST)

Great news to report!! Max is still in remission.

We entered the clinic this morning for blood draws and antibiotics and then shuffled down to short stay for a blood transfusion, all to prepare for surgery. Max's counts looked really good, he still had an ANC over 3700...I can remember a day not that long ago when I thought it would never get past 20! Max then entered surgery with the bone marrow biopsy and spinal tap first, followed by the neck. The red swelled mass on his neck turned out to be pus mixed with inflamed tissue that was removed. The other lump on his jaw turned out to be an infectious mass as well and was removed without damaging the nerve. The scar while hard to look at, is not nearly as bad as I had feared in to be. We really were lucky to have great people working on him. His nerve, while undamaged is a little ticked off and has quit working for the time being but we are hoping to see it spring back to life in the next week or so.

We then traveled back up to the 8th floor, where we will be for the next 5 days. The first three will be post-op days, Max will get antibiotics as part of his recovery. The last two days will be chemo days. The results of the tests today showed that Max's marrow is still healthy, nice and cellular with less than 5%blast cells, and his spinal fluid is clean! Because everything looks good we will be undergoing the standard round three protocol, which means Max will be in for two days of chemo, home for 5 and back in until he recovers. We cannot tell you how blessed we feel, a few weeks ago we could never have imagined being in this position. What can we say, he is Miracle Max!! Thank you, thank you, thank you for each prayer that went out, God heard them all and we are so grateful.

We ask that you pray for quick healing with minimal pain.
Pray that Max's cancer remain in remission.
Meanwhile,Happy Birthday wishes to cousin, Wayne.
Pray for our sister-in-law Sheila, Paul's brother Don and the newest member of the Adams' family that will be born in the morning right across the street from us. Babies always bring joy and hope for the future...the timing is perfect, we are very excited! We will try to get pictures on this website for the Adams family to see.

Big hugs to all,
TPSPBM

Thursday, January 09, 2003 at 04:05 PM (CST)

A quick update for you all. It looks like we have a persuasive doctor, which means that we will be at the clinic first thing in the morning for blood draws, bone marrow biopsy, spinal tap, blood and platelet transfusions if necessary and in surgery by 1p.m. It caught us a bit by surprise, we were thinking the earliest she would be able to get us in would be the end of the weekend. So....we will spend the night celebrating Sammy's birthday, we now have a teenager in the house, and will pack just enough to get us through the next few days. We are having a difficult time getting pumped up to go back in....we could really use a break, but I'm sure Max's cancer is thinking the same thing. Until we see for sure what's coming out of Max's neck, we are not even sure what the exact plan is for treatment this round. I will update sometime after surgery when we know more. Please pray for the surgeons operating on Max and ask that God be present with Max during that time. We ask you to continue to pray that Max remains in remission, that he is able to heal quickly and without infection. Pray for the continued strength needed to endure this next round of treatment.
Love and hugs,
TPSPBM

Tuesday, January 07, 2003 at 09:17 PM (CST)

We are still coming to you live from Quebec Ave. We have now been home for a week and we are really enjoying it. We did have a visit to the clinic this morning and Max's counts are still looking good despite the fact that we have stopped the GCSF hormone. We did attempt to draw more pus from Max's neck and unfortunately we were only able to draw blood this time. The team at the hospital is now coming up with a gameplan for the next round. We will be going back in on Friday for blood draws just to monitor Max's counts and nutrition levels. We are tentatively planning on doing surgery on Max's neck. Since the mass on Max's jaw is not clearing up fast enough we will need to remove it and the fluid on the side of his neck before we start the next round of chemo or we will end up with a nasty old infection again. Unfortunately this operation will require an incision to be made from his ear to the bottom of his jaw and then cut across the base of his jaw to just pass the mass. The location of the mass is near a major nerve that controls many of your facial expressions and so they will need to peel back that portion to follow the nerve so that they are sure not to damage it. Recovery time from the operation will require at least three days in the hospital and then we are hoping to move straight into the phase three of chemo. The main question up for grabs is when this will all take place, the ENT's office said their first opening was the 17th, my oncologist would like to do it this Friday, and so I assume we will compromise and do it sometime next week. I am always uncomfortable with cutting my kid open so I am in no hurry to do it, but would like to get started on round three. I feel like we have just spent an enormous amount of time in the hospital and every day away makes it that much harder to want to go back. We will update again in the next day or so when we know more for sure. Thanks for checkin up on us.....
LOVE TO ALL
TPSPBM

Thursday, January 02, 2003 at 09:33 PM (CST)

More terrific news to report!! Today we went back to the hospital to begin what we thought was a long day of procedures. After a blood draw to check Max's blood counts we went to the clinic to meet with Dr. O'Leary, our primary oncologist. When she took a look at Max's neck, she saw the surprise we brought with us, a red swollen neck with a pocket of pus! Now, I know that would not be cause for celebration in most homes, but in our case it was the answer to our prayers. Because we have seen no indication of infection, the doctors have been convinced that the swelling on Max's neck was a chloroma, or cancerous tumor....but the proof is in the pus, looks like it was infection all along. We've also talked to you about the leukemic indicator that they were still seeing in Max's blood studies. When Max was diagnosed that indicator number was over 1100, when they checked it again today it was 116. Our doctor said they would not worry until the number was at least 250. Max's ANC number is now over 5000, with the help of GCSF a growth hormone to stimulate his blood cell reproduction, and his other counts are improving daily. So, the good news is that we canceled the procedures that were to be performed today as they were no longer needed. The really good news is that we no longer need to rush to treatment and get to stay home until at least Tuesday....yipee!! We even talked about continuing Max on the regular scheduled protocol for round three, amazing as it seems, we may be right back where we started.

We have talked to many people about the last few weeks. Many people, including a few doctors think that they must have made a mistake. I know how good our doctors are at what the do and so I am convinced that it was no mistake but rather prayers in action. Miracles happen everyday, we just don't take the time to see them, but sometimes they shout out loud so that all can see and keep our hope alive. We cannot begin to thank you for rallying around our precious Max in his time of need, we know it made the difference.

Please pray that Max regains his strength.
Pray that his appetite returns and he begins eating more.
Pray that he continues to fight his cancer off, and remain in remission.
Pray for the other AML kids, Nathanial who is finishing up his bonemarrow treatment, Ryan who heads to the university on Monday to begin his transplant treatment, Drew who is heading home after round three that he remain in remission, and Christie who is back on the 8th floor today for the completion of round three.

Really and truly may God bless each of you and hug your hearts for us,
TPSPBM

Tuesday, December 31, 2002 at 08:16 PM (CST)

Happy New Year!!

We find ourselves in a very awkward position as '02 ends and that is where will Max sleep now that he is HOME!!! Much to our suprise, Max was discharged from the hospital ending his 65 day run at Children's Hospital/Hotel. We couldn't be happier for the break, brief as it may be. Dr. Sencer was doing rounds this morning and Max's ANC count was 1602, the second day in a row over 1000. Back on 12/28, Max had an ANC count of 48, so he really has shown great improvement. Because of this, and so Max's parents don't go off the deep end, Dr. Sencer felt Max was well enough to spend a couple nights at home.

We learned it isn't easy to take two plus months worth of stuff out of the hospital in a timely fashion. Luckily, Max was napping and we needed to wait for the pharmacy to send his meds up before we could be discharged. Max will get a visit tommorow from a home care nurse to help us administer the meds that go through an IV. Max is scheduled back at the clinic on Thursday morning at 8:30. He will receive platelets, have a bone marrow biopsy and possibly need surgery on his neck again. We may start round three as early as this weekend, but we are hoping to wait to start up again on Monday. When Max's bone marrow was drawn last time a portion of it was sent off to the lab for chromosome testing. They look at each individual chromosome for any changes to its normal appearance. This is the test that helps them to diagnose which cancer is present, and in our case, to see if the cancer is still active. Unfortunately for us, we are still seeing the leukemic marker on Max's chromosomes. Because of this, we will need to remove Max from the standard protocol and begin a third more aggressive phase and proceed directly to a bone marrow transplant. They are running a search now for a nonrelated match and we are hoping to hear back this week. So while we were very thankful for results from last week, the reality is Max is far from out of the woods and the next phases will demand a lot from his body.

The good news is seeing how Max is responding. He actually has eaten solid food in the last two days, the first time in five weeks that has happened. His TPN(IV food) has added some weight to his frame and like Dr. O'Leary said, he's not exactly starving. We are thankful to see the recovery as he builds his strength. Max also may have seen the last days of being a blonde haired boy. The hair that is growing back most definitely is coming in black like his dad's hair. It's unlikely this hair will stay but the doctors were right when they said it would come back darker. The curl factor remains to be seen at the current length.

Our New Year's Eve will be spent at home sweet home, a place we haven't been together overnight as a family for a long time. However you spend yours, have fun and be safe. We want to thank you again for your support and hope we ALL have a healthy, happy new year.

Finally, we want to thank Trish's brother Brad. You may have noticed a little change in how the website looks. Brad added a link that includes pictures we've taken of Max and others since Max was diagnosed. We think it's really cool to have Max's story also told through pictures. If you have a chance, take a look and thanks a lot Uncle Zoomer!!

Love,
TPSPBM

Saturday, December 28, 2002 at 02:25 PM (CST)

Greetings.

We know, as we have been, many of you have been waiting anxiously for Max's test results. To put it simply, Max has been lifted up by the power of your prayers. The initial feeling from the doctors who did the biopsy on Max's neck was that it looked more like infection than cancer. The doctor said if he was a betting man he would bet no tumor. That has been confirmed as two pathologists have looked at the slides and saw no signs of cancer. Max's spinal tap also came back clean. As for the bone marrow, the initial result was still 4% blast cells which is still technically remission. Upon further review(sports term, which tells you Paul's the one doing the update so if you want a more technical, medical review talk to Trish)where all the cells are looked at, the result was that Max was clean. This could not have been better news!! But wait!!

Max today had counts!!! His white blood cell count was 2400. It has not been over 1200 this round. His ANC count was 48!! Max's previous high this round was 21. We are convinced two things have brought on this miraculous change. First, the army of people who have thinking and praying for Max. Thank you, thank you, thank you, a thousand thank yous. Second, we are convinced the hours Max spent at home boosted his spirits and gave him a renewed will to fight all the crap he has to fight. We believe that will and spirit is shining through today like it was on Christmas(see pictures). Maybe Max will grow up to become a tough little hockey player. He already has his first little scar, the five stitcher on his neck from his biopsy.

We often have said there are good and bad days as part of this and just like we didn't want to be very down from last week's news we are tempering our enthusiasm today as we know Max still is in the midst of his journey with a long road to go. Nonetheless, we are humbled in this week of miracles that our family has received a miracle of its own and we can't tell you how much all of you mean to us. Your prayers, kind acts, kind words, cards, etc. give us strength that we pass onto Max to continue the fight and fight he has.
Love to all.
TPSPBM

Saturday, December 28, 2002 at 10:52 AM (CST)

We wanted to drop a quick note to let all of you know that we are still waiting for definitive results. I am realizing that everyone waited until the day after Christmas to do procedures and so we are one of many that need to be processed. We have heard some encouraging preliminary news and ask God to make it so. We will let you all know as soon as we hear for sure. They are looking at Max's cells individually so they can better identify the type of blast cells he has and that also takes time. We believe in the power of prayer and feel it in our optimism today, please continue to ask God for Max's healing as he is in alot of pain and discomfort today.

Check back later today,until then....
TPSPBM

Thursday, December 26, 2002 at 01:27 PM (CST)

Just a quick note to let you all know that Max is undergoing his tests as I type. We ask that you pray for favorable results with the continued ray of hope that we seek. We will let you all know the results of these tests hopefully sometime tomorrow as we are not sure when they will all come back. We want to thank you all for keeping us in your prayers during this especially busy time.

We were able to bring Max home for 6 hours yesterday. I was overcome driving him home and found myself trying to remember the last time something filled me with such joy that it moved me to tears. He was all smiles and had such a grand time playing in his room, seeing his dog and hanging out opening presents. You can only imagine how hard it was to bring him back to the hospital. He really wanted to stay home and it broke our hearts a bit to have to come back. He has spent much of the time since sleeping, but it was great to see him so alive for a bit.

We hope and pray, please join us.
TPSPBM

Sunday, December 22, 2002 at 02:57 PM (CST)

We have attempted to sit down and update our journal many times in the last few days, but seem to come up short with the words to express ourselves. We have been so comforted and inspired by your demonstrations of support. It has been difficult to read your messages without breaking down in tears each time, but they have been a true blessing in our time of need. Many of you have talked about the fact that this week of Christmas is a miracle week, and that with God's grace anything is possible. I believe we've been given this week to pray for that exact thing, a miracle! We acknowledge that our doctors are good at what they do, but we know they run tests for a reason...because they could be wrong. We continue to hope and believe, and ask for the strength to understand and accept God's will no matter what the outcome of the tests on the 26th.

There have been so many demonstrations of support in this last week that we do not know where to begin to thank you all. We do so appreciate Troy and Randy coming to decorate our room for Christmas. Nothing beats the warm glow of the lights to cozy up a room!!
Our nephews Danny and Ryan continue to provide Max with some of the biggest smiles and laughs, Danny's class even collected a box of art supplies to donate to the playroom for the kid's on our floor.
We feel as though we've been tucked in by a group of terrific people we met through the SpareKey program. Patsy, Jane and Kim dropped off gifts for our family for Christmas. They are incredible people who touch so many families in a time of great need. This last week has been hard on our other children, even though they do not fully understand what is going on, they do know that things are not going as we had hoped. We are thankful for their attempt to help us make Christmas happy and special. I am especially grateful to Kim for the phone conversations that have helped us through this last week.
We were able to celebrate Christmas with Paul's brothers and their families last night. Trish's parents came to the hospital and stayed with Max, while the rest of the family headed to Ham Lake. We cannot imagine being blessed with a more amazing family. They have lifted us up daily and support us in so many ways. We always remember that Max is their grandson, nephew and cousin, and that they too must be suffering greatly with us.
We have been touched by the support from the other AML families, we truly are in this together and are grateful for their continued support as we battle on.

We are looking forward to Christmas Day and taking Max home. Please pray that it goes off without a hitch and that he is able to truly enjoy himself. We ask that you continue to pray for God's healing.

We feel the love that you send and it fills us with peace.
TPSPBM

ps. Look for a new picture of the kids in the Photo Album.

Wednesday, December 18, 2002 at 05:39 PM (CST)

As we have talked about many times before, you have good days and bad days. Today we found out that there is something even worse. It saddens us to write to you, as we have very little positive news to pass on.

Max's results from his tests on Tuesday answered some of the questions we've had and explained why he hasn't shown improvement. The aspiration on his neck contained only blood and no cells and so that provided no news. We will now need to go in and surgically remove a piece of the mass to determine what it is, infection or more than likely tumor. However, the bone marrow biopsy did provide information. Max's first bone marrow showed him in remission with less than 1% blast cells. This bone marrow showed an increase to 4%. This is still technically considered remission, but both the pathologist and our oncology doctor saw the blast cells and say that they appear to be the same as the cancer cells he came in with. The biggest concern, and why we are so frightened is that his cancer is coming back so early, his body and healthy cells have not even recovered from this last round, and he still has an ANC of zero.

We are now in a place where the outlook is bleak at best. We have talked about some of the alternative drugs we made need to try, however Max's body is in no shape to sustain such treatment. Ultimately, if he should recover and could stay strong enough to force back into remission with these drugs, we will need to go the the University of Minnesota for a bone marrow transplant. We were given a generous 20% survival rate, however they would support us if at any time we would choose to suspend treatment. We are asking that you say a prayer of support for all of us involved in the difficult decisions that lie ahead. Our ultimate goal is to honor Max and the life that is his. We pray for the strength to be able to acknowledge what that is.

As you can imagine this is an extremely difficult time for us. We ask that you respect our struggle and give us the time to absorb this news. While we are not yet ready to talk about all the details via the phone, we could really use a hug via this website and so if you read this and haven't left a note, now would be the time.

Because of Max's status, they are going to allow us to take him home on Christmas. The reality that this may be the last for him will make it difficult and extra special all rolled up in one.

Like I have said before, we continue to hope and ask that you do too. We thank you for your love and support,
TPSPBM

Monday, December 16, 2002 at 12:49 PM (CST)

Thanks for checking in....we find ourselves continuing the holding pattern. We are seeing a bit of progress in Max's counts, his white blood count is up and he has had an ANC (so low the doctors wouldn't count it) now for the last couple of days. We are visiting with such a slew of doctors and therapists, that, coupled with the number of visits the nurses need to make due to his meds, it is really starting to wear on Max. He has come up with a few choice defense mechanisms to fight back, the arm over the eyes, loud moaning and/or crying, turning his head away and pretending he is invisible, and when all else fails..the hide under the blanket and refuse to come out move!! After 50 days in the hospital I think I'd have had enough as well. We have found that the mornings are the most uncomfortable for Max, he seems to be in more pain as his body is waking up. The early evenings are the best, our smiling boy returns to us and he is even willing to get out of the room for 15 minutes at a time. And so, we continue on and hope that tomorrow is the day we make our way around that ever so hard to reach corner. I do know that the one thing we owe our children is hope, and so I continue to have great faith in Max and hope for his complete recovery.

Yesterday was a nice day for us. Paul, myself and the remaining kids went to Larry and Linda's house and enjoyed some nonmedical conversation and time together away from the hospital. Max spent the day with Nana, and so he had a terrific time too. We feel so blessed to have the family that we do. It is impossible to imagine going through this without the support that we've received from you all.

Tuesday we will do another bone marrow on Max to see if anything is happening in his marrow. This is pretty standard, and we will repeat every two weeks until we see his counts back to normal. Please say an extra prayer that his body continues to remain in remission.

We continue to feel blessed by your presence in our lives.
Love,
TPSPBM

Friday, December 13, 2002 at 03:48 PM (CST)

Today finds us still waiting. It is such a discouraging feeling when the nurses come in with the results of our blood draws only to discover that Max still has no ANC and has less white blood cells then yesterday! I keep thinking about the excitement that we will all feel when his body does begin to build back the cells he so desperately needs. The doctors are feeling a bit encouraged and feel fairly confident that we could turn the corner sometime the beginning of next week. We certainly hope that they are on to something!! Max himself is sick of being sick. He fights just about everything we do to him. I think the frustration and stubborness is a good sign, I remember last round, the same thing happened right before he started to come back. His lymph nodes have begun to swell again and we are watching to see if his neck becomes red, a sign of infection. We do believe that we will need to biopsy the nodes at some point to determine what is happening, but for now we wait and watch. [I sure do use the word wait alot]

We want to say happy birthday to Warren, Uncle Don and tomorrow Great Grandpa Grosz. We hope you all eat too much cake and have fun on your special day.

A special thanks to all of you that have brought us food and other goodies, we truly appreciate all you do. Aunt Nancy, the musical rodent was a hit, we even put him on the Wishing Well Show for all the kids in the hospital to see.
Thank you for the prayers that have gotten us through another day,
Love to all,
TPSPBM

Lastly, many of you have inquired about making donations to our cause. While I feel a bit strange talking about it, I am touched by your concern for our family, and the ability to provide Max with the best treatment. This is only for the people who have expressed an interest. Paul's brother, Larry Adams has taken the responsibility of setting up a benefit fund and will oversee the account. If you are interested you can mail donations to the US Bank [Pillsbury Branch] at:
HOPE FOR MAX
C/O LARRY ADAMS
220 S. 6TH ST., Suite 300
Minneapolis, MN 55402
If you have any questions or concerns feel free to contact Larry. His phone# [612]376.4523 or email at ladams@larsonallen.com

Wednesday, December 11, 2002 at 01:19 PM (CST)

Wednesday finds us with a much happier kid. Yesterday we thought we would do Max a favor and up his pain medication. Unfortunately, it helped so much he fell asleep and didn't move all day and so, we reduced it allowing him to be more comfortable but still able to function. This morning found us with a happy kid, who was even happier when Santa came to visit. Luckily for Max he had his TOYSRUS big toy book handy and could show Santa a few of the things he would like to see under the tree this Christmas. We talked to Santa and he promised that he would find Max no matter where he was on Christmas and bring him a treat for being such a brave boy this year.

We did see a tinsee-weensie-tiny-itty-bitty reaction in Max's counts today. We are hoping that it continues instead of stagnating yet again. We have begun trying alternatives to the drugs and therapy. We are shaking the lucky silver egg from Danny, sprinkling the "Jesus Juice" holy water from Dennis and Mary Margaret, dusting Max with "bone marrow glitter" [glitter from the playroom] that Drew said worked for him, and Mom has started wearing "Miracle" a perfume from Kay that if anything makes her smell better! Desperate times call for desperate measures!!! Yet, at the end of the night, it is in the quite moments of prayer that the greatest comfort and sense of hope comes. Our Deacon Mike spoke of this time of Advent as a time of waiting and great anticipation. Our experience here reminds me of that same journey. In both cases it will be our faith that will be rewarded.

Please pray that Max's body builds the cells he needs...
Thanks for checking in,
TPSPBM

Monday, December 09, 2002 at 03:47 PM (CST)

Today brings us another day in the true test of patience. We continue to see no progress in Max's counts. We had another CT scan today. The wall of Max's rectum is inflamed and thickening, causing a very small, sore opening for him to poop.....someday Max will be very embarrassed to know I was talking about this......making it extremely painful for him. The lymph nodes continue to look the same and the left tonsil is quite swollen. The doctors are pretty certain that something will need to be done with that area before we start round three, we just don't know what it will be at this time. We have increased the amount of GCSF that he is receiving. GCSF is given to the kids to help them bring their counts back, I am hopeful that this is just what we need. They did say that we would probably wait until day 56 to do another bone marrow biopsy as we are still in the acceptable range of time for counts to return. We have been so looking forward to being home for Christmas, it has been and is still our goal. However, Day 56 would fall on Christmas Eve, which would mean that we would end up spending the holidays here. I have held on to the image of Max waking up in his own bed on Christmas morning and the family spending the day together at home. It is really hard to want for anything else this year, when all I truly need is my family intact. Please pray for us and help my Christmas wish come true.

Love and Big Hugs to all,
TPSPBM

Saturday, December 07, 2002 at 03:01 PM (CST)

Hello all.

Day 40 finds us enduring more of the same. Max continues to fight his fevers, lack of appetite, swollen lymph nodes, and sore bottom. Today finds all these maladies at levels a little better than what they've been at their worst but at times that is of little comfort to Max. It has been 26 days since the chemo drugs were finished for this round and we continue to play the waiting game for counts to come back. On the plus side, Max's white blood cell count is as high as it's been for this round but still very low when compared to normal. Max's ANC count has been as high as 16 but today came back at 0. As a point of reference, Max needs an ANC count of 200 to leave the hospital. Keep in mind that when this count does finally come back, chances are good they'll come back fast. In round one Max went from a similar count as now to 160 then 340 in two days. C'MON COUNTS!!!
Dr. Belani visited yesterday and spoke to us about how truly amazing our immune systems are in fighting germs and bacteria. With the condition of Max's immune system right now, it's tough to keep everything out of his body. Dr. Belani said we could give Max medication to protect him from 1000 different germs and the meds will successfully protect him from 999 leaving one to make his recovery more difficult. Dr.Belani also said sometimes a bacterial infection will jump start the counts where viral ones will hinder counts from coming back. Today they are running tests on Max to determine what type of infection Max has.
On the positive side we had some visitors yesterday, that lifted Max's spirits. Aunt Linda, Ryan and Danny stopped by and were able to put a smile on Max's face. Thanks Larry, Linda and boys for doing so much to help us out! Mom and Dad were also visited by Jane and "Ace", friends from Friday's. It's nice to stay in touch. Max also received a care package from the Minnesota Wild yesterday. The box included a mini hockey stick, autographed Darby Hendrickson puck, team yearbook, calender, poster and picture. Max enjoyed playing with them. He may have even remembered when Darby and Bill Muckalt visited. We heard through the grapevine that Max's cousin Jason and Nikki may have played a role in the connection with the Wild. If so thanks for your help. As mentioned previously, we're trying to get some new pictures of Max but he hasn't been cooperative. One thing Dad wanted to show was one of the cool jerseys Max got from the Bulls thanks to his Uncle Jeff. Since Max hasn't been too smiley lately(except when close to Mom) Bailey has pinch hit for her brother in modeling the jersey. Yes, we do have some new pictures. That's it for now. Thanks for continuing your visits of this website or connection by any means. They mean more than you'll ever know.
Love,
TPSPBMaxxxxxxxxxxx/oooooooo

Wednesday, December 04, 2002 at 10:25 AM (CST)

Just a quick update...I left Max watching E.T., the movie. One of his favorite nurses,Jody, brought it in for him to see, he has wanted to watch it since he began wearing his red "E.T." light on his finger to measure his pulse and oxygen levels. He is still doing about the same. We heard back from the bone marrow and spinal tap tests, both showed Max to be clean and in remission. We are keeping a close eye on his lymph nodes as the one on the left side is starting to grow. We are hoping that it is a sign of his body producing white blood cells and going there to fight infection. It is a hard thing to watch at times, it seems that healing can hurt and so you take the good with the bad. We continue to forge ahead!!

I was reading guestbook entries and saw the one from our daughter Sam. Even though it is in "deafspeak", the message was so clear..I am just so proud of all our kids and their attitudes throughout this battle. The end of this week brings Paul home. Nana will come up next week to help out again. The weeks get very long when they are both away and the kids get farmed out, which is why I am so impressed by their behavior and spirit. I think they really love their brother! Sam has requested new pictures on the web sight, to be honest, we have not had a lot of cooperation from Max on that front. I will try however to get something new for you all to see.

Thanks for hanging with us as we battle ahead,
TPSPBM

Sunday, December 01, 2002 at 12:31 PM (CST)

Welcome to Day 34 of treatment, 35 days in the hospital this round. We find ourselves dealing with the same battles day in and out. Max continues to run high fevers,(his specialty is spiking one at about 4a.m.,making it hard for Mom to sleep)and is pained by his bottom and his swollen lymph nodes. The infectious disease doctor was in this morning, and made a few med changes that will hopefully offer Max some relief and healing for his bottom. We had another CT scan yesterday and an echo the day before, nothing new to report. We knew it would take awhile longer for his counts to return this round, the extra week it usually takes will be up Monday. We continue to ask for your support through prayer that his body starts to rebound from the effects of the chemotherapy. We will have our day 35 bone marrow biopsy and LP, spinal treatment, Monday morning, and will continue to wait it out. It is making us a bit mad (in the going crazy sense)waiting, and waiting, and waiting....worrying about the fevers, and worrying and worrying. But if there is one thing I know it is that God is with us through the journey and his presence continues to strengthen us and comfort us. We look to the bright side, with the delays, we will more than likely be home the week of Christmas.

We had special visitors this weekend. Lori and Dr.Mike came for a visit bringing some Holy Water straight from Lourdes. We also had Mom's cousins from N.D. and Montana come. They brought us some terrific western gear....who ever thought city boy Paul would have a son that owned a pair of chaps!! Wayne and Connie have been down this path, in rougher patches than we hope to go. It is a great support to have them help us through this journey. In the ten years that their son John has passed, I am overcome by the number of times he is still in my thoughts. I am comforted knowing that perhaps Max too, is adding a fullness to the lives of many of you and that he will continue to remain in your thoughts as well.

Please pray that Max is relieved of the fevers that plague him. Pray that his body produces the cells necessary to heal himself. Pray that his body is rid of cancer for good!

Blessings to all,
TPSPBM

Thursday, November 28, 2002 at 11:30 AM (CST)

Happy Thanksgiving to you all!! We don't have alot to report. After examining Max, the ENT specialists along with our doctor feel fairly confident that what we are seeing in the CT scan is not fungal, nor is it an abcess at this time. They made the decision to leave things as they are for now, but to closely monitor him in the days ahead. We are watching the area behind the back of his throat. If this should grow it could cause him difficulty in swallowing and may block air flow requiring surgery to fix. We continue to battle fevers, but we believe it is his body fighting back and that all cells developing are joining in the battle!

I saw this on one of the boards on our floor. When I read it I felt as though it really clarified my feelings. It seems appropriate for today, so let it be my way of showing my gratitude to you. "Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow." -melody beattie-

Love and thanks from all of us to all of you.....
TPSPBM

Tuesday, November 26, 2002 at 06:44 PM (CST)

Today finds us facing another challenge. If you have been keeping up with the last weeks entries you are aware of the fact that Max has been fighting the battle of the fever. We just came from a CT scan of Max's entire body to see if we could find an explanation for the fever. In looking at Max's head and neck, they were able to detect two areas affecting his lymph nodes that are of concern. We will be going down in the morning to have an ENT specialist look at him, they will drain the infection and check to see if it is fungal or bacterial. There are two different antifungal drugs that we may have to put Max on. If it is bacterial we will continue to treat him with the various drugs he has been on and wait not-so-patiently for his counts to come back. We are not seeing any other signs that would make us concerned and the fact that we are not rushing down to surgery this instant is a bit of comfort. The words "fungal infection" are two very scary words to parents here. But I know that we will get through this challenge and so we remain determined.

We have seen the power of prayer in action, and so again we come to you to ask for your voice in prayer. Please pray that we are able to effectively treat Max. Pray for his healing and for the return of his infection fighting cells. Pray that our family be lifted up in the days ahead. "I pray that Max be healed".

Travel safely in the days ahead....eat too much, laugh alot, give lots of hugs, and don't forget to say "I love you".
Love to all,
TPSPBM

p.s. Three neat things that happened today.... 1. Max got a box of "stuff" from Chicago filled with goodies from the Chicago Bulls, 2. Two players from the Minnesota Wild came to visit our floor, we got to visit them and they were so nice, 3. Our fellow AMLer, Christie is featured in the cover story of this week's NEWSWEEK magazine, along with one of our doctors..if you have a chance take a look, we were very excited and proud of her!

Sunday, November 24, 2002 at 01:13 PM (CST)

Hi to all. We survived another night with very little drama. Max did not get a fever until this morning and so for the most part had a good nights rest. He is on a machine that will give him a bump of morphine when he is in pain. We have put him in charge of the button, and he decides when he needs it. He uses it a lot less than I thought he would, usually when we need to clean up his bottom. He is really starting to feel the pain of his bottom, but that is usually a sign that healing is taking place. So, even though it hurts him, it makes Mom feel encouraged that his counts are coming back. He has had an ANC number for three days now and I am sure it would be getting higher if it was not for his need to use his infection fighting cells to help with down below. Hopefully this means only another week or so in the hospital and then another short break at home before coming in again for round three.

I have included two links below. One is for information on donating blood. I think of all the transfusion Max has had throughout his treatment, and how grateful I am that there is a supply available for him. It is such a simple thing to do but it truly helps thousands of people daily. The second is the website for the National Marrow Donor Program. It gives you a ton of information about the who,what,why's....you can also look in your phonebook or call you local hospital to ask for the closest location to donate. The testing process is just a simple blood draw, our 4 year old did it with ease. We encourage anyone who is able to make the effort. We are seeing the good works of a donor in action here, as one of our AML group was able to locate a match through the registry. We may be called upon to use the registry, if Max were to suffer a relapse it may be our last hope.

Please continue to pray that Max will regain his counts and heal his infection quickly. Pray that he will have a clean bone marrow after this round and that he will remain in remission. Pray for our entire AML group, that we have the strength and courage to face our daily challenges.
Pray for a miracle!!

Love to all,
TPSPBM

Friday, November 22, 2002 at 02:16 PM (CST)

Today found us facing more of the same challenges. Max fought a fever of over 104% most of the night. We had little success and so this morning we finally gave him some Viox, used by many people for arthritis but a terrific fever reducer that finally did the trick. Max's hemoglobin was low and so they had just ordered a blood transfusion for him when he threw up some blood clots. We quickly added platelettes to his list and was transfused those first. I think that would have been enough to do me in for the day, but once he started to feel better he was eating some KFC (one of mom's weaknesses) and passing out Krispie Kremes that Grandma brought to the kids on the floor. He continues to inspire me with his attitude throughout this round, last time I felt as though he disappeared while "cancer kid" took over. This round I continue to see his spirit, and although at times limited, the twinkle in his eyes.

Many of you have asked about bone marrow testing. We will be adding that information to our list in the next few days. If it is a road that we will need to head down, it will be important that donations happen in the near future as it take time to test and type the marrow. The good news is that it will take no time at all to isolate a donor should we need one.

We listened to the news yesterday and heard of a Mother in the area whose 3 children were out playing and fell into a nearby pond. Two of the children died and one is in critical condition. I bring this up because it really made me realize the precious gift of time. Life is not made of guarantees and we here are made aware of that daily. We cherish this time we've been given, but so should all of you. You just never know when it could be too late. In that spirit...please realize that every note, gift, phone call,good deed, prayer or action means more to us than we can say. We hope you feel the appreciation and love we're sending your way.

TPSPBM

Thursday, November 21, 2002 at 10:21 AM (CST)

Another interupted night of sleep! We struggle to make it through the night without needing to do at least one load of laundry. Last night the upset stomach didn't want to take the medicine we needed to control Max's fever. It feels at times,(mostly in the middle of the night)that we have a newborn again. Max is definitely starting to feel some of that pain from last time in his bottom again. We will probably need to begin some type of limited pain control to help him manage through this next week or so. We are so proud of him and how he is dealing with everything. He continues to want to get up and out....he just wishes Mom wouldn't stop to talk to so many grownups all the time!!

We continue to ask for your prayers through this battle. We really want to see Max's fevers go away and his infection in his bottom kept to a minimum. Pray that no new cancer cells are growing, or thinking of growing.

Please remember to pray for our AML group. We have had some recent setbacks, and what affects one child, really hits the group hard. We also have two new patients,both boys, age 3 and almost 3 that have been diagnosed with AML. It is hard to imagine that there could be 7 of us at the same time dealing with this mostly adult cancer.

Love to all, it has been nice hearing from so many of you. Many times you say just the right thing we needed to hear to keep our attitudes positive and our faith intact.
TPSPBM

Monday, November 18, 2002 at 10:19 AM (CST)

It's definitely a Monday with a capital M. We are at that stage of treatment where we've hit bottom. The next week will be a difficult one, especially since Max has been continuously fighting fevers. The most frustrating part is to see what is happening down below...Max's butt is breaking down again, despite everyone's best efforts to prevent a repeat from last time. We at least have a plan of treatment which is good, and Max himself seems to be handling it much better. We know that the infection there held back his counts last time, and so, we are imagining it will do the same this time. It is hard to see, knowing the pain and uncomfortableness it causes, but we know we will get through it. There is much less fear in this round. I was having a conversation with the Chaplain. We were talking about the first round, being wisked from the pediatric office, straight here never to return home(or so we thought) a very overwhelming experience. This time we know what the end result will bring, Max was such a healthy, happy, energetic kid after resting at home...much,much better than the sick child we started with. The down side is that we understand so much more, and it is easier to get frustrated. We work hard to stay positive and accepting of the process, afterall it is saving Max's life.

As I look forward to Thanksgiving this year, I realize that more than ever I will understand the wealth of graces that have been handed down to me. There is so much in our lives to be grateful for. A husband who works hard so that I can be here to comfort our son, children who make daily sacrifices without complaint because their brother means the world to them, a selfless Nana, who takes time out of her life to nuture her daughter and support our family through our difficulties...and all of you, who make the difference everyday through your thought and prayers and support. God Bless you all,
Love,
TPSPBM

Monday, November 18, 2002 at 10:19 AM (CST)

It's definitely a Monday with a capital M. We are at that stage of treatment where we've hit bottom. The next week will be a difficult one, especially since Max has been continuously fighting fevers. The most frustrating part is to see what is happening down below...Max's butt is breaking down again, despite everyone's best efforts to prevent a repeat from last time. We at least have a plan of treatment which is good, and Max himself seems to be handling it much better. We know that the infection there held back his counts last time, and so, we are imagining it will do the same this time. It is hard to see, knowing the pain and uncomfortableness it causes, but we know we will get through it. There is much less fear in this round. I was having a conversation with the Chaplain. We were talking about the first round, being wisked from the pediatric office, straight here never to return home(or so we thought) a very overwhelming experience. This time we know what the end result will bring, Max was such a healthy, happy, energetic kid after resting at home...much,much better than the sick child we started with. The down side is that we understand so much more, and it is easier to get frustrated. We work hard to stay positive and accepting of the process, afterall it is saving Max's life.

As I look forward to Thanksgiving this year, I realize that more than ever I will understand the wealth of graces that have been handed down to me. There is so much in our lives to be grateful for. A husband who works hard so that I can be here to comfort our son, children who make daily sacrifices without complaint to because their brother means the world to them, a selfless Nana, who takes time out of her life to nuture her daughter and support our family through our difficulties...and all of you, who make the difference everyday through your thought and prayers and support. God Bless you all,
Love,
TPSPBM

Saturday, November 16, 2002 at 03:18 PM (CST)

Hello all.

We continue in the dog days of the treatment. Max currently is receiving enough antibiotics that the doctor joked he doesn't like making the journal entry. I think the total he's on now is six or seven. He was in the midst of receiving his platelets today when they started causing hives on his head, neck and back. When this happens the platelets are stopped. Max is now getting Benadrel so he won't scratch the hives. The staff will run a test to see how many platelets he received before he had to stop. If he still needs more they will try again tonight. Through all this Max spirits remain upbeat which is at times truly amazing. He continues to love the support and time he gets to spend with his siblings, which this weekend includes Parker. The play time puts Max in a good mood and makes him forget temporarily all the crap he puts up with on a daily basis, which is great medicine.

The doctor also said today it will take longer for Max to get his counts back up after round two. This is day nineteen. To compare, Max's buddy Drew left the hospital after his second round on day 50. We definitely don't want to be here that long but we know it's a slow process and are thankful for the days that go smoothly. Parker and Dad are planning to go see the Wild beat up on the Capitals tonight. Please keep thinking about Max. Our family feels the support everyday and that makes it easier for us to stay positive. Peace.

TPSPBM

Thursday, November 14, 2002 at 06:23 PM (CST)

The battle of the fever is on....Max has been spiking fevers of 102% to 104%. We have him on a broad coverage of antibiotics to help combat any infection that may be taking hold. It is a bit frightening since it takes upwards of two plus weeks for counts to come back and Max spiked his first fever the day after we finished chemo. I'm confident we are going to win this war, but the battles really can get the best of you at times.

The good news is that Max remains in good spirits. We even made a fort in our room and the kids played in it while listening to their Shrek CD for the 1000th time. We also had the Zoomobile visit. Max was excited to see his favorite animal, a red tailed hawk named Jake. I am a little worried about Bailey, her favorite was the hissing cockroaches, and they were New York big!! I can't believe how much Bailey helps motivate Max to keep going and remain positive. They are so adorable at night when they fall asleep together, you never get over that feeling of seeing your kids in dreamland.

We press on, we fight the good fight, keep the faith, and thank you all for your part in finishing the race.

Love,
TPSPMB

Tuesday, November 12, 2002 at 05:46 PM (CST)

Let the fun wheel spin...today is our first full day off chemo and we started it with a fever!! Max's counts have hit bottom and so he is on two additional antibiotics to try to fight off any infection brewing. He has been very tired all day and is finally getting some much needed rest. Our doctor reminded me that it has been 15 days of smooth sailing, so I am hoping our luck holds out and that this is just a bump in the road. It is hard to not feel anxious, remember the close calls we experienced the last round. We need all of you to say an extra prayer to help us through. The good thing is Max is still in great spirits and is even eating a bit. Cheetos are out, Doritos are in!!

We have enjoyed the visitors that have stopped by. Some have perked up Mom, and some, especially his little buddies have been good for Max. Doctor Mike (that's what we call him!) and Lori, brought Max a cool Spiderman whose eyes light up really bright and looks extra cool when we're looking at him under our covers. We tried to get our nurse Jody to try it, but she thought we were up to something!! Please remember if you are in the area to give us a buzz. If Max is in decent condition, we'd enjoy seeing you.

I have said that the greatest gift we can give our kids up here is hope. That's why we call this page, Hope for Max. You all continue to provide us with the hope and encouragement we need to pass it on the kids here. I feel like we say it all the time, and yet never enough, so Thank You, We love you, and we pray for your many blessings.

TPSPBM

Saturday, November 09, 2002 at 09:48 PM (CST)

Hello to family and friends,
Today finds us with just one more day of chemo. Max's counts have really started to bottom out on us, we had to give him his first blood transfusion yesterday. We will be looking to give him platelets tomorrow, his counts are so low he can give himself a bloody nose just by picking it! The good thing is that he is still in decent spirits and still wants to be up and out of the room quite a bit, for that we are grateful. In about four days from now he will truly hit bottom and for the ten days following that we will need extra prayers as that tends to be a critical time for voiding off infection. We DO NOT want to go through that again !!

We had an extra special treat today. Max's great grandfather made the trip from Ashley,ND, to visit Max. There is a 90 year age difference between the two of them, and the sad part is that Grandpa had alot,lot more hair. We really appreciate my Aunt Linda and Uncle Duane, taking the time to drive him up so that we could all visit together. He is an inspirational man who above all is a survivor, we are hoping some of his positive mojo rubs off on Max!

They were saying survival rates in most childrens cancers are much better than in adults, because the kids can let go of the past hurts and face tomorrow as a brand new day. They also keep fighting and never give up. There is just so many life lessons to learn here through these remarkable children. Now if they could only have hot water for me to shower in, I'd be set!

I know life gets busy and yours days fly by, but please remember to think of us. Often times your short words of encouragement are just the thing we need to make it through to another day.
Love to all,
TPSPBM

Wednesday, November 06, 2002 at 11:37 AM (CST)

Our last day of freedom. Thursday brings four more days of chemo. We have been having such a good time with these days off, we are running around alot and doing alot of dancing/excercising to Max's favorite music tapes.(Great idea Jenny). We are finding the music to be very theraputic, it really keeps his spirits up. We are anticipating that the start of chemo will bring the start of continuous I.V. hookups, followed by counts crashing. We are also learning that patience is often tested in round two, as counts take even longer to come back this time. We feel very fortunate that Max is so much stronger this go around, hopefully it will help in the two weeks ahead. I truly believe I am seeing the effects of all the outside prayer in action.

We had an exciting visit last night. Missy, one of nurses, and now definitely a favorite, stopped by with a belated birthday gift for Max. She knows that we(including extended family), are fans of hockey. She also knows that Max is an Avalanche fan, thanks to the favorite hat his uncle bought him. It just so happens that her brother is Dan Hinote, #13 on the Avalanche team. Max was born on the same day as their Dad and so when Missy told her brother about Max and asked if he had anything for Max, he was amazing enough to send one of Patrick Roy's jerseys,signed by many of the team members. If you know hockey, you know how excited we were. Max quickly called his Uncle Brad and Aunt Alane, who are season ticket holders for the Avs, to rub it in. It doesn't make up for having leukemia, but it sure goes a long way to cheering us up!! Max has promised Mom that he will be around long enough to fit into the jersey himself. I am holding him to his promise!

We love you all, and thank God for your presence in our lives. You are all the best medicine invented.
Big hugs,
TPSPBM

Sunday, November 03, 2002 at 04:01 PM (CST)

Hello all, welcome to day 6 of round two. Max is doing really well. His counts are still looking good at this point and his energy level is reflective of that. We have spent the last two days on the go. We even had a visit from our dog Butkus, so that we could celebrate his first birthday yesterday!! Max is so much stronger the beginning of this round than he was last time. He really hasn't looked this good since last May. We are hopeful that this strength will help him avoid some of his problems from round one. We, also are not in the same state of shock as we were the first go, and so, we know to savor each day that he is well while we are here. The next few days should see the start of counts dropping and then the fun will begin. Please continue to pray for Max, and ask that God continue to guide him through this journey. We are also asking that a special prayer of healing be said for our AML group, that God may intervene for those that need his touch.
Thanks for continuing to check in, we will need your support again in the days ahead.
With much love and a ((((Big Hug)))),
TPSPBM

Thursday, October 31, 2002 at 08:36 PM (CST)

Happy Halloween everyone. We had a pretty good day today. The hospital had many activities to keep all the kids busy today. For having to be in the hospital, it really was fun. As you can see from the pictures, Max and Bailey stayed busy making cookies, going trick or treating and showing off their costumes. They were both very excited about their costumes and had fun seeing many staff members dressed up as well. Sammy and Bailey also went trick or treating tonight by the house and both have split out some of their candy to give to Max. Yea sisters!!

On the treatment front, Max continues along with the chemo. His counts have stayed strong but we are aware this is the calm before the storm. We are making a concerted effort to keep him up and about so he's gets his exercise through this round and doesn't turn into the boy who never gets out of bed. The physical therapists even dropped off an exercise mat and Max has been listening to a lot of CD's with his sister while they dance on the mat. It's really quite a sight when Max, Bailey and Mom all get rockin'. The tough part is the balance between coddling Max and being tough enough to make sure he gets the exercise that will benefit him in the long run because we never do really know how much the treatments affect him.

The reality of what all these kids and families are going through really hit home since coming back for round two. On Tuesday we found out that three kids on the floor did not survive their battles and some of the parents were going to one of the funerals. It was through watery eyes that Trish and me read an entry on a similar website from a dad who was writing one his last entries because the fight had ended. Our chemo gang that we have spoken of in past messages all continue on in their attempts to become healthy. Christie and Nathanial are spending time at home for now. Ryan and Drew are both getting ready to go home shortly. Keep fighting Drew and get those counts up so you and Mom and Dad can blow out of this place soon!! We'll miss you and your families when you leave but we really want you to go. As some have written about, this family struggle has allowed us to see more clearly the many blessings our family receives on a regular basis. For that we are very grateful. Blessings to all.
Love,
TPSPBM

Tuesday, October 29, 2002 at 11:17 PM (CST)

Day one is finished! We were so tired from the excitement of the day before we slept in this morning. The bad news is we missed watching our doctor, Dr. O'Leary, get her flu shot. We wanted to see if she was as brave as Max, but we just couldn't wake up in time. We made her show us where it was on her arm to prove she really did it. It's nice to know even Doctors get shots!

Max had a Spinal today,with a chemo injection. This is just part of his treatment plan. He was so excited yesterday, remembering all the fun things about being at the hospital. Today was a reminder of the not-so-fun part about being here,procedures,meds, I.V.s, etc. You could see it in his face, so we are really working to keep his spirits high and his attitude positive as we move ahead.

Paul and I share season tickets to the Wild Hockey games. We have given up most of our tickets but couldn't pass up a chance to watch the Avalanche play. Sorry Uncle Brad and Aunt Alane, but the Wild won in overtime! Aunt Sheila was nice enough to come and stay with the kids while we went. Cousin Jake came too and brought his Halloween costume to show Max and Bailey. They had a great time playing in the playroom and eating pizza in our room.

We were able to switch rooms today. Because of Max's treatment, he needs to be in a filtered room to prevent the risk of infection. Besides, Mom likes this room better!! If you're going to call it home, you might as well be comfortable. We are now in room 8123,and our phone number is 612-813-6873. This will stay the same now for the rest of round two.

Thank you for your prayers, every child should be so lucky to have this kind of love and support in the face of adversity. We appreciate it more than you'll ever know.

Love,
TPSPBM

Monday, October 28, 2002 at 06:10 PM (CST)

We're back. Max came back to the hospital this morning and as of noon was back in his room on the eighth floor. For now we are in room 8140 but we'll probably move down the hall sometime soon. Our new number is 612-813-6923. We'll keep you posted on the switch.

Max enters the hospital in very good spirits. He has a good appetite and a strong desire to be on the move and stay active. He did not like having to sit in his bed even for a while the nurses started his drugs for the second round of chemo. Hopefully, that strength and desire to move will last throughout the majority of his stay. We see Max's spirit shine through when he smiles which you should be able to see in the new pictures. We continue to remain comforted by the fact that so many people are thinking and praying that Max can maintain that strength of spirit. Thanks for your support as round two kicks off.

Love,
TPSPBM

Sunday, October 27, 2002 at 07:59 PM (CST)

Just a quick note to let you all know that we are busy packing our things to go back to the hospital in the morning. We "check in" at the clinic in the morning, move up to the 8th floor and are planning on having a LP,spinal tap, a.s.a.p. Hopefully Max can start in on the chemotherapy right away. We will have a new room and phone number for this round and will post it on the web as soon as possible.

Please pray for continued strength as we move into phase two.

A quick congrats to Aunt Alane for doing so well in the Marine Corps Marathon, 137th place in her age/sex division. With apprx. 16,000 people running we are impressed!
Happy Birthday to my rock, Nancy...I love you

We will be updating this site with new pictures and info more frequently so keep in touch!

Love to all,
TPSPBM

Thursday, October 24, 2002 at 09:08 PM (CDT)

Greetings to all,
Four more days of freedom and then it's back in the big house we go! The thought of going back is getting harder to stomach with each passing day. Max is just so full of life and laughter...We don't want to have to put him through all of that again, but the alternative stinks even more! It is a good thing that there are so many wonderful people there that we will get to see again.

We have had a number of visitors and even more delicious food delivered to our doorsteps. I am really worried that the family will go through withdrawl when it's time for Mom to do all the cooking again. Thank you all.

Paul's Uncle Ed from Chicago is very involved in the Polish National Alliance, a Polish Catholic organization. He knows many wonderful people, and we were blessed to have a group of them make the drive from Chicago to visit our home. Fr. Jeary Twarog, from St. John Vianney Parish in Northlake, Illinois, led the group in prayer and annointed Max with Holy Water and oil. He has prayed over two other children, one with cancer and one injured in a fire, in both cases he placed a medalion of their founder, Bogdan Janski on the children and asked for his intervention. In both cases the children saw miracle healing. We are hoping that Max will be the third child blessed. We are eternally grateful for their generosity and ask you all to continue to pray for Max's healing.

Sam's team lost in the playoffs for volleyball,so she is finished for the year. We have a break until basketball season starts. Parker's football team has their playoffs this weekend, and he has been playing really well. Bailey has picked out her cheerleader costume (pink) for Halloween and we are trying to come up with a cheer for her to do for dance class Monday night. It almost feels as if life is back to normal!!

We will continue to fatten up the Maxster and enjoy our days at home. Thank you for continuing to check in. It means the world to us that you care.

Love,kisses and a BIG HUG,
TPSPBM

Sunday, October 20, 2002 at 10:53 PM (CDT)

What a nice weekend we had. Saturday we went pumpkin picking..Sam,Parker and Bailey quickly moved to the section with the biggest pumpkins each finding what they thought was the best. Max just walked over to the small batch, picked up the first pumpkin he saw and said,"this one for me". His Aunt Diane had already sent him a small pumpkin with spiderman on it, so he wasn't concerned with needing to beat out his siblings. We got to spend some time with his cousins Jake and Zach, even though he can't keep up as well, it makes him happy to be around them.

We spent alot of time with Uncle Brad playing, I know Max was a little misty eyed to see him leave. Uncles are always more fun to play with than Moms and Dads.

We have been enjoying the food that all of you have left us, it makes our lives so much easier. Honestly, you are all better cooks than I'll ever be. The Causse's left some of my favorite comfort food, so I have been enjoying that and along with Max getting back up to my best fighting weight! Thank you all for your generosity.
(Paul and Bev, no more cookies, I ate too many of them by myself!!)

It's funny, you see your child looking and acting so healthy, you could almost forget how sick he is. Luckily, our Doctor has left us with six meds to take daily so that we are ever reminded of what lies ahead.

Max's Aunt Alane will be running the Marine Corps Marathon in Washington,D.C. the end of this week. We look at our battle as a marathon too. We promise her that if she finishes her race we will do everything in our power to finish ours too. I know she reads this site, so if you know her, type her a note of encouragement.

HOME SWEET HOME
TPSPBM

Friday, October 18, 2002 at 08:36 PM (CDT)

Good news to report! We had our visit to the Oncology Clinic today and was told we could stay home an extra week. This is the payoff for dealing with that nasty infection...we are getting the extra time to make sure that it has healed completely before we start up again. Max's counts are doing well and we will resume treatment on the 28th of October. Looks like our trick or treating will be reserved to the hospital floor. This second phase of treatment will look similar to the first (minus the infection we hope) and we will plan on being in the hospital about the same length of time. We will keep our fingers crossed that we could be home by Thanksgiving.
Right now we are enjoying our time at home. It has been such great therapy for Max, and alot of fun for the family to be together again. Trish's brother Brad flew in tonight from Colorado, and has been kept very busy playing with the four kids. You can hear Max yelling for "Uncle Zoomer" as they chase each other around the house!! We plan to go to the pumpkin patch in the morning then carve Jack-o-Lanterns, we're glad that Max is doing well enough to allow us these little treats in life.
This next 10 days will remind us of the normalcy that is life...we plan to enjoy it as we gear up mentally and emotionally for round two, and Max continues to enjoy his new diet of Mt.Dew, Cheetos, carrots and dip and Hershey candy bars. Hopefully his tastebuds will adjust and other foods will start appealing to him again.
As always thank you for checking in and joining us in our journey,
TPSPBM

Friday, October 18, 2002 at 08:36 PM (CDT)

Good news to report! We had our visit to the Oncology Clinic today and was told we could stay home an extra week. This is the payoff for dealing with that nasty infection...we are getting the extra time to make sure that it has healed completely before we start up again. Max's counts are doing well and we will resume treatment on the 28th of October. Looks like our trick or treating will be reserved to the hospital floor. This second phase of treatment will look similar to the first (minus the infection we hope) and we will plan on being in the hospital about the same length of time. We will keep our fingers crossed that we could be home by Thanksgiving.
Right now we are enjoying our time at home. It has been such great therapy for Max, and alot of fun for the family to be together again. Trish's brother Brad flew in tonight from Colorado, and has been kept very busy playing with the four kids. You can hear Max yelling for "Uncle Zoomer" as they chase each other around the house!! We plan to go to the pumpkin patch in the morning then carve Jack-o-Lanterns, we're glad that Max is doing well enough to allow us these little treats in life.
This next 10 days will remind us of the normalcy that is life...we plan to enjoy it as we gear up mentally and emotionally for round two, and Max continues to enjoy his new diet of Mt.Dew, Cheetos, carrots and dip and Hershey candy bars. Hopefully his tastebuds will adjust and other foods will start appealing to him again.
As always thank you for checking in and joining us in our journey,
TPSPBM

Friday, October 18, 2002 at 08:36 PM (CDT)

Good news to report! We had our visit to the Oncology Clinic today and was told we could stay home an extra week. This is the payoff for dealing with that nasty infection...we are getting the extra time to make sure that it has healed completely before we start up again. Max's counts are doing well and we will resume treatment on the 28th of October. Looks like our trick or treating will be reserved to the hospital floor. This second phase of treatment will look similar to the first (minus the infection we hope) and we will plan on being in the hospital about the same length of time. We will keep our fingers crossed that we could be home by Thanksgiving.
Right now we are enjoying our time at home. It has been such great therapy for Max, and alot of fun for the family to be together again. Trish's brother Brad flew in tonight from Colorado, and has been kept very busy playing with the four kids. You can hear Max yelling for "Uncle Zoomer" as they chase each other around the house!! We plan to go to the pumpkin patch in the morning then carve Jack-o-Lanterns, we're glad that Max is doing well enough to allow us these little treats in life.
This next 10 days will remind us of the normalcy that is life...we plan to enjoy it as we gear up mentally and emotionally for round two, and Max continues to enjoy his new diet of Mt.Dew, Cheetos, carrots and dip and Hershey candy bars. Hopefully his tastebuds will adjust and other foods will start appealing to him again.
As always thank you for checking in and joining us in our journey,
TPSPBM

Monday, October 14, 2002 at 11:38 PM (CDT)

Hello all! I'm sitting here at home in front of the computer with a little boy asleep in my arms. Life does not get any better than this.
Max had a bone marrow biopsy and LP, or spinal tap this morning. We found out that Max is still in remission, his tests came back clean, no new cancer is growing. I read a statistic that 75-90% of the kids reach remission by the end of the first induction phase, of that group about 50% survive through the entire process. We'd like Max and his gang to be in that group.
Because Max is doing so well now, or perhaps because Mom was whining, we got to go home today! It's good to be home to enjoy a bit of our new adjusted "normal" life. We go back on Friday for blood tests. If his counts are good and his infection is completely clean, then we will look to be back into the hospital for round two, or consilidation. We will be somewhat confined, even though Max is better, his immune system is nowhere close to being normal, but there is plenty to do here at home to fill our days this week.
I am filled with the peace that God brings me at the end of the day. I always ask my kid's "Who could possibly love you more than Momma?". As always, when I asked Max tonight he said, "Jesus", and I am comforted greatly. He will never be alone, and never without the love he deserves.
Thanks for praying,thanks for checking in,
Love,
TPSPBM

Monday, October 14, 2002 at 11:38 PM (CDT)

Hello all! I'm sitting here at home in front of the computer with a little boy asleep in my arms. Life does not get any better than this.
Max had a bone marrow biopsy and LP, or spinal tap this morning. We found out that Max is still in remission, his tests came back clean, no new cancer is growing. I read a statistic that 75-90% of the kids reach remission by the end of the first induction phase, of that group about 50% survive through the entire process. We'd like Max and his gang to be in that group.
Because Max is doing so well now, or perhaps because Mom was whining, we got to go home today! It's good to be home to enjoy a bit of our new adjusted "normal" life. We go back on Friday for blood tests. If his counts are good and his infection is completely clean, then we will look to be back into the hospital for round two, or consilidation. We will be somewhat confined, even though Max is better, his immune system is nowhere close to being normal, but there is plenty to do here at home to fill our days this week.
I am filled with the peace that God brings me at the end of the day. I always ask my kid's "Who could possibly love you more than Momma?". As always, when I asked Max tonight he said, "Jesus", and I am comforted greatly. He will never be alone, and never without the love he deserves.
Thanks for praying,thanks for checking in,
Love,
TPSPBM

Sunday, October 13, 2002 at 09:18 PM (CDT)

We finish the weekend having about as good a three day stretch as we could imagine. Max has been allowed to come home for 4-6 hours each of the last three days. We topped off those home visits by having a somewhat impromptu birthday party for Max. Thanks to Uncles, Brian, Duane, Larry and Donald, Aunts Linda and Linda and cousins Ryan, Danny and Jake for showing up to help celebrate. Max had a lot of fun seeing all of you. It's great for us to see him doing the normal things kids do. We are still hopeful the doctors are going to give him the final OK that phase one of the treatment will be done Monday or Tuesday. Max's counts have been very good so as long as that stays the same he'll be home for a stretch.
The weird part has been seeing Max at home. It's been so long that having him home doesn't seem normal. The people(staff and families)at the hospital are great but we would rather not see them for a while and allow our lives to get back to some semblance of normalcy. We know round two will be on us soon enough. We finish the weekend waiting for the second half of our October birthdays to arrive. Max and Mom have become quite close after spending so much time together over the last few weeks. As mentioned previously, the best gift Trish will receive is to have Max at home. Thank you for your continued prayers and support as we edge closer to that reality.
Love,
TPSPBM

Friday, October 11, 2002 at 06:16 PM (CDT)

What a terrific day this has turned out to be!! The weather was wonderful,Uncle Larry and Aunt Linda brought pizza and watched Bug's Life, and Max's counts shot way up. We actually spent the day playing with Bailey and some of the other kids and then we got to go home on a pass. It was terrific because Grandma had cooked a yummy meal for us and Max got to see his pal, Butkus, our pug. He had so much fun just being at home in his room, I don't even think he played in it that much before he got sick.

Max's counts are good enough, but he is still working to fight off the infection in his butt. He is weaning off the morphine that was controlling the pain in that area and should be off it in just a couple days. He will be finished with his antibiotics that are fighting the infection and if all goes well, we will be home the beginning of the week. I told the doctors that all I want for my birthday is our family together at home. They have until Tuesday!!

We have a group of 5 AML kids, four are boys, Ryan,Drew,Nathanial and Max, of which Max is the oldest.The other is a girl name Christy. Christy has the exact same birthday as Sammy and so it effects me greatly to watch her so bravely go through her battle. AML is an aggressive leukemia with a 45% survival rate over 5years. The thought of at least 2 of the kids in the group not making it, is one I'd like to not deal with. I have decided that they will be the miracle group of kids...the ones that change those stinking statistics. Please remember as you say your prayer for Max, to pray for the group.

You got us through those difficult weeks, of which there will be more to come, please celebrate with us in joy we feel today.
TPSPBM

Friday, October 11, 2002 at 06:16 PM (CDT)

What a terrific day this has turned out to be!! The weather was wonderful,Uncle Larry and Aunt Linda brought pizza and watched Bug's Life, and Max's counts shot way up. We actually spent the day playing with Bailey and some of the other kids and then we got to go home on a pass. It was terrific because Grandma had cooked a yummy meal for us and Max got to see his pal, Butkus, our pug. He had so much fun just being at home in his room, I don't even think he played in it that much before he got sick.

Max's counts are good enough, but he is still working to fight off the infection in his butt. He is weaning off the morphine that was controlling the pain in that area and should be off it in just a couple days. He will be finished with his antibiotics that are fighting the infection and if all goes well, we will be home the beginning of the week. I told the doctors that all I want for my birthday is our family together at home. They have until Tuesday!!

We have a group of 5 AML kids, four are boys, Ryan,Drew,Nathanial and Max, of which Max is the oldest.The other is a girl name Christy. Christy has the exact same birthday as Sammy and so it effects me greatly to watch her so bravely go through her battle. AML is an aggressive leukemia with a 45% survival rate over 5years. The thought of at least 2 of the kids in the group not making it, is one I'd like to not deal with. I have decided that they will be the miracle group of kids...the ones that change those stinking statistics. Please remember as you say your prayer for Max, to pray for the group.

You got us through those difficult weeks, of which there will be more to come, please celebrate with us in joy we feel today.
TPSPBM

Wednesday, October 09, 2002 at 02:36 PM (CDT)

Welcome to today's update. Max continues to improve and we now have blood counts across the board! Max's ANC count, (the important one, because that's the one that determines when we go home) is over 140 today. The people here have said that it will need to reach 200, two days in a row before we can break out of here. We are hoping that as Max's infection clears up his ANC count will rise, as he will need less of his cells to fight that infection. We may even start to get a few passes to leave the floor.
When we are able to leave for home, we will be able to stay there until his ANC count is 1000 or more (that is, unless he spikes a fever or gets sick). Once it is that high they more than likely will call us in to start over again with round two.
It has been a real treat for us to see Max returning to his old self again. It fills our hearts with joy to see his eyes twinkle and to hear the sound of his laughter. These are the little gifts God gives you everyday that are so easy to take for granted. There are so many good things that come out of horrible times. The people we've met here, the outpouring from all of you, the pulling together of family, growing of faith, and the new outlook on life and what a gift everyday is to each of us. I send you all a big Max hug and all the love we can muster!
If we haven't said it lately....thank you for being in this together with us, and GO TWINS!!
TPSPBM

Sunday, October 06, 2002 at 09:15 PM (CDT)

Hello all. Max has continued to ride his little roller coaster on how he's feeling but we actually have some good news to report. His bottom/groin still are causing him discomfort and this evening he is running a fever but the good news is that he actually has some blood counts. Although they are small right now the fact that he does have some white blood cell and ANC counts means he is heading in the right direction. This is what the waiting game has been about since his chemo run has ended. The ANC counts show the cells that Max has to fight any infection(restaurant guy paraphrasing). Until these counts reach a level the doctors are comfortable with, Max will stay in the hospital. These two along with all the other blood counts have been zero for some time so that's why we are so encouraged. To us, it's no coincidence the first positive sign on his blood counts came after Max received so many wonderful messages, gifts, thoughts and prayers on his birthday. Thanks to all who communicated with us on his special day and keep your thoughts, prayers and e-mails coming, they truly are working and helping.
Trish and I actually got out on a date Saturday night(thanks Grandpa and Grandma) and after dinner we saw a magnet that we thought was appropriate for our family situation. The quote was attributed to Winston Churchill and it said simply:
Never, never, never give up! To us, it speaks to the human spirit and we again thank you for continuing to provide our family with the strength and spirit to do just that. This road has been made so much easier for us as all of you share your strength and spirit. Thanks for walking with us.
Love,
TPSPBM

Friday, October 04, 2002 at 07:54 PM (CDT)

Yipee!! Today is Max's third birthday! Max had a good time looking over all the cards,gifts, and emails from all of you. He likes the idea that he is a big boy now. The only down side of the day is a nasty infection that we are just now able to see. I won't go into alot of detail about it, but I will say that there is not a grown man out there that wouldn't wince at the sight of it! We are excited to see the redness and pus as it is a sign that his cells are starting to grow again, it is to bad that it has to hurt so much. Max has been a mad, cranky kid the last few days, we also take this as a good sign. Any of you that know Paul and myself know that it is just the genetic fight coming out of him. If he has the energy to act like that he is definitely getting better!
Three years ago God gave us a blessing. Max has lit up our world and provided us with unmeasurable joy. We are two of the luckiest parents in the world no matter what the outcome of this battle brings, and will be eternally grateful for the blessing of Max in our lives.
God Bless you all,
TPSPBM

Friday, October 04, 2002 at 07:54 PM (CDT)

Yipee!! Today is Max's third birthday! Max had a good time looking over all the cards,gifts, and emails from all of you. He likes the idea that he is a big boy now. The only down side of the day is a nasty infection that we are just now able to see. I won't go into alot of detail about it, but I will say that there is not a grown man out there that wouldn't wince at the sight of it! We are excited to see the redness and pus as it is a sign that his cells are starting to grow again, it is to bad that it has to hurt so much. Max has been a mad, cranky kid the last few days, we also take this as a good sign. Any of you that know Paul and myself know that it is just the genetic fight coming out of him. If he has the energy to act like that he is definitely getting better!
Three years ago God gave us a blessing. Max has lit up our world and provided us with unmeasurable joy. We are two of the luckiest parents in the world no matter what the outcome of this battle brings, and will be eternally grateful for the blessing of Max in our lives.
God Bless you all,
TPSPBM

Wednesday, October 02, 2002 at 08:15 PM (CDT)

Hello all. Max continues to struggle through the effects of his treatment. The biggest worry has been his fever. Today it has been in check and nowhere near the 105 of a couple of nights ago. The thing that bothers Max the most is his mouth sores which have spread through his digestive system. Max also has a tender botttom which has made changing his diaper an adventure at times. Now you need to be on the alert for a quick kick to whatever he can hit with his feet as Max will take some shots at you. It's good to see the fight in him. While Max has been going through a tough spell there are still times when he flashes his wonderful smile. Often that is when he interacts with Sammy and Bailey. The big change is that smile is accompanied by his rapidly balding head. (see pictures) We are hopeful these last few days are defining the bottom of Max's first round of treatment. Early on the staff said there would be good days and bad days. During this rough stretch, we lean a little more on your messages, either through the website or other ways. We are thankful for all who continue to stay in touch. Please continue to keep Max in your thoughts and prayers. In recognition of Bailey starting Spanish preschool, we say adios.
Love,
TPSPBM

Sunday, September 29, 2002 at 11:57 AM (CDT)

Life with leukemia is not all that it is cracked up to be. You find yourself wondering when your life will get back to normal and realize that it is a long way off. There are times when it takes everything in you not to grab your child and run as fast and far away as possible. You quickly discover working with all the medicines and procedures that often in treating one problem you create two new ones.
Max has hit the bottom just as they said he would. He could stay there for the next week before his counts start to rebound. He suffers through mouthsores, digestive problems, skin rashes and fever. The nurses and doctors are working hard to ward off any infection as Max is unable to combat it at this time.
The parents here, we talk about the overwhelming sadness that you feel..even when you're happy your sad. It is a difficult thing to watch your child, your baby, in so much pain. You just want your kid to get the chance to be a kid. With God's grace and the kindness of others we are greatly comforted. This is one of the only places where you can meet great families and hope you don't get the chance to see them again when they leave, at least not for a long time. You just want their child to recover and move on from here.
People ask if it is ok to call and what they should say. Please call, we don't answer if it is a bad time. Feel free to ask us questions about Max, but keep it short..he knows when we are talking about him. We like to hear about you and what is going on in your life, it helps us stay connected to the outside world. Thank you for your continued prayers and support.
Lastly, we would like to thank everyone who is helping so tirelessly with our other children. This has been a difficult time for them and anything you do to help them maintain a normal life and feel special is appreciated more than we can say.
Love,
TPSPBM (Trish,Paul,Sammy,Parker,Bailey,Max..especially MAx)

p.s. keep your eye out for new pictures in the next few days. Max is losing hair like crazy and should soon have yet a new look for all to see.

Thursday, September 26, 2002 at 09:58 PM (CDT)

Like many days there is good news and not so good news to report. Unfortunately Bailey's tests results came back and she is not a match for the marrow transplant. We will find out more information in the coming days on how we will proceed on that front. Please keep in mind Max is no worse off than when he first entered the hospital and we are staying the course with the chemo treatments which needed to be completed before any potential marrow transplant was to take place. Max continues to get good results and the staff says everything continues to progress well and as hoped for. Max still hasn't gotten his appetite back eating solid foods but still weighs about the same as when he entered the hospital thanks to the IV's. He started getting back that beautiful smile that had been missing for most of the last couple of days which you can see firsthand in picture three.

An interesting fact about the "I love you" that Max is signing. Max could never make that sign. He would always sign I love you like you would sign "peace". Then Max saw the Spiderman movie and started working on shooting his "web" by using his other hand to hold down his two middle fingers. Once he got that down we told him to turn his hand around and presto, Max could sign I love you. We love all of you who are helping in ways big and small as we deal with getting our precious little boy better. Thanks.

TPSPBM-Yes, Trish Paul Sammy Parker Bailey and Max

Thursday, September 26, 2002 at 09:58 PM (CDT)

Like many days there is good news and not so good news to report. Unfortunately Bailey's tests results came back and she is not a match for the marrow transplant. We will find out more information in the coming days on how we will proceed on that front. Please keep in mind Max is no worse off than when he first entered the hospital and we are staying the course with the chemo treatments which needed to be completed before any potential marrow transplant was to take place. Max continues to get good results and the staff says everything continues to progress well and as hoped for. Max still hasn't gotten his appetite back eating solid foods but still weighs about the same as when he entered the hospital thanks to the IV's. He started getting back that beautiful smile that had been missing for most of the last couple of days which you can see firsthand in picture three.

An interesting fact about the "I love you" that Max is signing. Max could never make that sign. He would always sign I love you like you would sign "peace". Then Max saw the Spiderman movie and started working on shooting his "web" by using his other hand to hold down his two middle fingers. Once he got that down we told him to turn his hand around and presto, Max could sign I love you. We love all of you who are helping in ways big and small as we deal with getting our precious little boy better. Thanks.

TPSPBM-Yes, Trish Paul Sammy Parker Bailey and Max

Wednesday, September 25, 2002 at 06:09 PM (CDT)

Welcome to Day 17 of our chemo treatment. We have now been here for 20 days. Mom is starting to show the first signs of hospitalisis. I've heard that people actually start climbing walls and pulling out their hair when they reach the advanced stage!! The worst part is that we will be here for about two more weeks before we can go home. Then we will be lucky to be home for a week before we need to come back in and start this entire ugly process over again. At least we picked the right time of the year to be cooped up.
You learn when you are here that there are good days and bad days, you take them one at a time. Today, was a good day. Max's fever is under control,he has only needed something now for pain, and has spent a good portion of the day smiling. I am hoping that as his counts rise, so will his energy and spirits. They have told us that Day 21 is the critical day, hopefully his counts will start bouncing back after that point.
The past few days have taken me back to the days of infancy with my kids. You all remember, puke and poop...all day, all the time. We even had them happening simultaneously. This is definitely not the disease for the weak of stomach. Thank goodness for the washing machine on the floor.
It has been a real kick hearing from family and friends that have lost contact. It has been touching to hear from so many people that we have never even met. THANK YOU. Invest in Kleenix stock as I promise to keep them in business throughout our battle!
Our friends,Joe and Sharon, gave us a card that says "Courage is fear that has said his prayers". We get our strength to endure through your prayers.
Love,
Max,Trish,Paul
Sammy,Bailey and Parker

Monday, September 23, 2002 at 02:03 PM (CDT)

Hello to all our wonderful family and friends out there. Today finds us with many glimmers of hope to share. We just heard the results of Max's tests on Friday and they look good! His spinal fluid is finally clear of blast(cancer) cells and so tomorrow will be his last LP, or spinal tap with the chemo injections(this round anyway). We also learned that the bone marrow is clean, showing less than 5% blast cells. That is important to us,because it tells us that the treatment is working. When you are putting your child into so much pain it is comforting to know that the purpose is being served and that it is worth it. Lastly, Paul and Trish have similar antigens in our blood makeup, which gives us hope that Bailey may be a match for Max's bone marrow. We ask that you continue to pray for a match as it increases Max's chances for survival.
This experience has been a struggle made easier by the many many blessings and good works we witness daily. We pray for the people here who work so hard to make sure every child has a chance, they are truly wonderful. We also cannot express how much your kind words and prayers mean to us...our cup runneth over. It is said here,that the only thing greater than giving life is saving one. You should all feel like heroes for doing your part to save Max. It really does make a difference. Please let friends know of Max's battle, let the chain of prayer grow.
"Again I tell you, if two of you join your voices on earth to pray for anything whatever, it shall be granted by my Father in heaven. Where two or three are gathered in my name there am I in their midst." Matthew 18:19-20
May God help each of you to see the many gifts given you this day and bless you all.
Love,
Trish,Paul and kids

Saturday, September 21, 2002 at 09:10 PM (CDT)

Hello to all. Max's last couple of days have been a little more of a struggle as he continues to experience discomfort from the chemo. He had another spinal tap this morning and we should find out the level of blast cells in his spinal fluid on Monday. Along with that we're hopeful to get Bailey's results as well on Monday. The chemo has definitely had an impact on Max's energy level as he has needed more pain medication and has slept more today and yesterday. He also has had a little less desire to eat lately. We're hoping that's temporary and that when this round of chemo finishes Max's appetite will reappear. As mentioned before, when this round finishes, we will be playing a waiting game to see that his blood counts come back. Max also wanted everyone to know the only bears that he cares about surviving the winter in Minnesota are the Chicago Bears. He is on the side of the bears coming out of hiding and walking by Uncle Dave and Chris. He said he wants a bearskin rug to lay on when he's back home watching the Bears in the Super Bowl. (OK, maybe Dad said that) May God bless all of you who continue to visit Max's website.

Thursday, September 19, 2002 at 03:12 PM (CDT)

Not a lot to report today as Max finishes up his last day of his regular chemo and continues on the triple dose of chemo to attack the blast cells in his spinal fluid. As you can see by the picture with Dad, Max has a little more difficulty maintaining his energy with all that's going on. The good news is the meds are working although they are taking all his blood counts down as well. Dr. O'Leary said as he finishes this round the hope is all blast cells will be gone and it becomes a waiting game to see that all his blood work reflects counts that will allow Max to have a break back at home before returning for round 2. We still hope that day will fall somewhere between Max and Trish's birthday. As for Bailey's blood test, we hope to see results by early next week. All your prayers have provided Max with so much strength so far. As the chemo is sapping some of his strength, we ask please continue to pray for his well being. We have seen first hand the power of your prayers and are thankful to know so many thoughtful, caring people.
Love,
Trish and Paul

Tuesday, September 17, 2002 at 06:28 PM (CDT)

Greetings from Max and the Adams family. Max wants you to check out the pictures because he has a new look. He got a haircut in anticipation of the chemo hair loss and we all think he looks pretty cool.
Today Max received platelets, then had a triple dose of chemo injected into his spine because there are still blast cells present. He also started his second round of "regular" chemo today. All of his counts are really dropping, which puts him at greater risk for infection,etc.
Because of this, only short visits are being allowed. Mom(Trish) says that's why the web site messages are so special and are the daily hugs that help us get through each day. Until the next update, love to all.

Saturday, September 14, 2002 at 03:35 PM (CDT)

Hello all. Max has had a couple more good days. Other than a chest x-ray and a spinal tap, Max has been on his floor. The doctors continue to say things are going as well as can be expected. Max did not experience as much pain the last couple days of chemo as he did the first couple. When we asked the doctors about him seemingly doing very well, they're happy to hear that but caution that with each coming round of chemo it will be much more diffficult to maintain his level of energy and enthusiasm. The very good news is Max's blood cells show no cancer cells. When he came into the hospital his count was at 67% and for the last two days the counts have been zero. Max still has cancer in his spinal column and that is one of the reasons for the frequency of the spinal taps. The other good news is the mass of blast cells in Max's right lung has been eliminated through the chemo treatment. When we first came to the hospital the doctors said the mass was a little bigger than a golf ball. Way to go chemo treatment!! Max has had a number a visitors since being here and we thank all of them for taking time to see him. Beacause of the treatments, Max is now in protective isolation which is a fancy way to say he needs to wear a mask when he goes out of his room. He will also soon experience his immune system going to a level where visits will be limited. The doctors told us that would happen two to four weeks after his chemo started. All in all we're grateful for how things have gone. We continue to feel strength from your thoughts and prayers and truly feel this is a big reason why Max has felt the way he has so far. An update of Bailey's blood work to know if she's a match for bone marrow will probably not come for 7-10 more days from today. Thanks to all of you. Max's last words to his dad as Dad left to update the website were GO BEARS, so that's how we'll sign off.

Thursday, September 12, 2002 at 03:17 PM (CDT)

Hello all. Not a lot new to report today. Max continues to do well as he goes through chemo. He will finish the first four day on cycle around 7pm tonight. He had another spinal tap today and Dad was suprised/amazed how well he handled it. Max wore his Twins cap when he came back up from surgery. Uncle Brian got it for him at yesterday's Twins game. Go Twins! Max looked very bored riding back up to his room from the spinal tap. Within minutes of getting back he made sure to let us know he was hungry and started into his cocoa puffs once he sat on his bed.

The other big news was Max's sister Bailey was tested today to see if Bailey's bone marrow matches up for the posssibility of a future transplant. As you can see on picture three, Bailey did her part and was a very big girl when her blood was drawn. Now Bailey also has a nameband just like Max's although Bailey has hers on her arm while Max thought it would be cool to put his on his leg. We are very proud of Bailey for being such a big girl when her blood was drawn. It's continues to be a source of comfort for us to read all your comments on this site. Thanks to all who have taken the time to look at Max's page. May God bless all of you!
Trish and Paul

Wednesday, September 11, 2002 at 02:52 PM (CDT)

Thanks to all who have responded. It means a lot to us. As for our little trooper, today has been a good day. Max got his chest tube out earlier today. He received a transfusion last night and the combination of those two have created the new challenge of keeping him within the IV tube length of his machines as he has been on his feet, running(or at least trying to) and playing in the play room. Max still is adjusting to the fact he must wear his mask when out of his room and doesn't always like it over his face. The first four days of chemo will end on Thursday around 7pm. The doctors say all his counts are doing very well and moving in the direction they are supposed to go. One thing we've quickly learned is that if the doctors don't come to your room early that is a good sign because it means everything is going well with the treatment. We are very touched by all your prayers and support and ask that you keep them (the prayers) coming, Max will need them all. We also are very grateful for the support and love from Grandma Dee and appreciate the sacrifice she is making to help us out. That's it for now-we'll keep you posted.
Love,
Trish, Paul and kids

Tuesday, September 10, 2002 at 07:07 PM (CDT)

Welcome to our web page. Thanks to all of you for your kind calls and prayers regarding Max. Max has been diagnosed with AML(Acute Myelogenous Leukemia) and began intensive chemo therapy. As of now he is tolerating chemo quite well and his blood counts are reacting just as we had hoped. The average stay for this induction phase is 34 days, so we plan to make this our new home for the next month. We encourage you to leave us messages, as your words mean more than you could ever know. Periodically we will provide you an update on Max's status via this page. Please use the full address to access this page as it is not available via a search engine.

Click here to go back to the main page.

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