History

Sunday, December 21, 2008 8:47 PM CST

I have sat down many times, my hands ready to share the experiences, the memories, the love… I have gone to bed thinking that tomorrow will be the day that I share with each of our loyal friends and family, who continue to stand in our corner. When it comes down to it, I have found it difficult to put my thoughts in writing; to share my sadness for the continued feeling of loss that my heart sustains every day; to share the depths of the happiness that I feel for my family on a daily basis, and then the paralleled grief that I continue to feel in my heart. Today, felt like the day. The strength was there and I received it through a poem that I will share later in my journal.

As I said above, my heart continues to ache for the presence of our wonderful little boy. Time numbs the pain of loss, but it does not ever take away the desire to have Zachary sharing in our daily routines. Zachary would have turned five this year. He would have entered kindergarten and ridden the bus with his big sister. He would have been deciding what sports he would or would not like to play. I can honestly and truthfully say that this year has been more challenging for me emotionally. I deeply miss his presence. I find myself wondering what kind of little boy he would have been; would he have had the constant smile on his face like his daddy, where people wondered what he was up to, or would he have just been silly sweet and honest as the day is long about all his mischievous ways. Either way, it would have been an absolute joy to witness his life as a little boy with two sisters that would have no doubt showed him the way. One day, eternal life with our little boy will be treasured.

Our life outside of missing Zachary is blissful. Max and I could not love our little girls more than we do. They place smiles on our faces and expand the love in our hearts to overflow. The laughter and the love and even the occasional battles are truly a daily blessing. Through our loss we have learned not to take our life with our children for granted. Life is short, it is sweet and it is to be cherished.

Sydney is good. She is our loving little girl that embraces her memories and looks forward to the new ones. She is enjoying school and loves the learning process of all of it. I think her favorite pass time is anytime that she can socialize. She has become an avid reader and this thrills her parents. She played soccer in the fall and is looking forward to enjoying soccer in the spring. Her soccer skills improved greatly and helped her to enjoy the skill and competitive nature of the sport. Sydney performed in our church Christmas pageant where we were finally able to convince her to take a speaking part. She did great, which did not surprise us since she is a very dramatic child. The sound of the piano continues to have a presence in our home as her lessons are expanding the keyboard. She looks forward to Christmas and sharing it with her little sister. All in all Sydney is a busy little girl that is growing up entirely too fast. We are proud of the beautiful young lady that Sydney is becoming.

Makenna is the spring in our step and the smile on our faces. She is fun and we are enjoying her immensely. She accomplishes all things at a sprint, leaving nothing left unturned. She has a zest for life and is the true embodiment of living life with a smile and a solid AMEN! She is talking up a storm and repeating things at times we wished she wouldn’t have heard. I am sure all parents can relate to this. She is a little girlie girl through and through; she must have her necklaces and bracelets on and is a fan of shoes. She loves music and can even sing a few verses of songs on her own. She dances, she is playful, she loves her baby dolls but her absolute most favorite thing in her world right now is Minnie Mouse. This little one can spot Minnie from a mile away and it brings a cheer to her voice and a skip to her step. It is precious. She is very observant and tries almost anything she sees done and usually accomplishes it. She is well on the road to being potty trained and is determined to be a big girl like her big sister. Too sweet! She loves the Christmas trees, the lights and the festive nature of the season, she expresses how everything is “pretty”. It is beautiful to see the world through a child’s eyes!

On the medical side of life, knock on wood, things are great. We stopped doing pre-cautionary blood tests on Makenna around March and we have not looked back. She has experienced one major illness that included fever, severe cough and a rash in May. Then, during that she had an allergic reaction to the medicine that she had to take so it caused further concern and a longer recovery. Other than that she has had a couple of other minor illnesses and has actually recovered faster than her sister did. We only do blood work when her pediatrician is concerned about her illness and what her counts may be doing. When she is sick we watch them very carefully. We started her immunizations in August and so far she has had four and has done well. We do one shot every 6 to 8 weeks and we do not do anything if there is any question in our mind that she is sick or if she is coming down with something. I am very cautious about her being around people that are sick and to be honest that is not a change for me, I have been like this since Sydney was a baby. We do what is necessary to keep our family healthy; unfortunately, it is sometimes out of our control. Today, she is healthy and happy and growing. It is a blessing and we are extremely thankful.

As a family we were able to take a much needed vacation to Walt Disney World in April. This is where Makenna met Minnie Mouse. We never imagined at such a young age it would have such an impact on her. My sister and her family flew to Florida to enjoy the week with us. It was great to have the children share their Disney experience together. Max actually worked part of the time (we were there because he had a business trip) and then when he was off he spent time with us at the many parks. We learned that Sydney loves thrilling rides and is more daring than we thought. Max was thrilled, since he is always on the lookout for a great roller coaster. This year has allowed many great memories together.

I would ask that you keep Ethan and his family in your prayers. He has recently undergone his second transplant for HLH and they are awaiting results of donor cells. Also, there is a little girl, her name is Emerson. She is a beautiful 2 year old girl who needs the prayers of each of you. She has had a multiple organ transplant and is struggling with many issues. She really needs a break and time for her body to heal. Please lift her and her family up in prayer for strength and healing. Your prayers are truly appreciated and help so very much!

As the year comes to an end we are forever grateful for the memories that we have shared together. We are grateful for the love, the prayers and genuine care that each of you have continued to show as we journey through each day without our beloved Zachary in hand. We thank you, we love each of you and we welcome a year full of blessings, health and happiness for all!

May God bless you and yours as he continues to bless us!

Merry Christmas to all and to all a Good Night!

In the beginning of my journal I had mentioned a poem that I had received that I would share. This poem comes from a Mom of a St. Jude child and it is touching and beautiful.

The Chosen Ones
By Jeanie Kane
Not just any child could walk this uphill road.
These children walk it everyday, carrying a load.
They show us heights of courage we may never reach.
They show us what it is to fight a fight we cannot teach.
We stand beside them knowing there is no guarantee.
Except the one we started with, to love them endlessly.
They are the special chosen ones, God knew it from the start.
He picked each child for cancer by measuring their heart.
The ones that measured biggest would someday face a test.
The challenge is to understand, God loves them more not less.
He's using them to move our hearts closer to his own.
Teaching us to trust his plan and fear not the unknown.
For God can move a mountain and part the raging sea.
He wants our struggles offered up and given forth to Thee.
He smiles upon the chosen ones before they're even born
And blesses them with courage to walk through any storm.
His love for them surpasses ours and cannot be denied.
For in the dark of suffering, his light will not subside.
No matter what the outcome, there is the greatest peace.
In knowing deep inside their hearts, his love will never cease.
Good night and God bless!!!

Monday, March 31, 2008 12:29 AM CDT

Our day of purple, March 31st, Zachary’s transplant and our day of hope for our future. It has been four years since Zachary had his transplant and a complete stranger donated his stem cells to help save our baby. Transplant Day marked the day of hope, of new beginnings and of a new found immune system. These are some of the thoughts and prayers that were embarked on when we entered our transplant journey. It was a day, when I look back… I can remember feeling the weight and fear lifted from my shoulders, God was present and I was thankful. A day when there were tears of relief that we had made it this far, made it far enough for that second chance and new beginning. It is moments like these in our life that we can reflect on and look back and appreciate where we have come, moments like our day of purple, when family, friends, doctors, nurses and complete strangers came together wearing purple in hope for Zachary’s cure from HLH. I am continually humbled by the compassion of the human spirit and the love that we all have to share.

Our hope did not fade when Zachary’s cure on earth was not meant to be. It gave us more direction, more understanding to walk as one with God. Instead of hope for our earthy future, it gave us hope for our eternity. The tears continue to fill our eyes from time to time and the ache stays present in our hearts, even amidst the laughter, we ache to see his big blue eyes and to feel his touch. But one day, it will all be possible and in God’s time we will all be together. What a glorious day that will be!

We are doing well and thankful for our time together. We have been blessed with some wonderful time with friends that came to visit. Beautiful spring weather is upon us and this makes me happy; spring is my favorite time of year. We have all managed to stay healthy and most importantly we are all happy.

A quick update on Makenna, her recent blood and immune studies have all come back completely normal. Yes, you read this right, I wrote completely normal. This is the first time and I cannot be more thrilled. Cincinnati wants another set of tests ran towards the middle to end of April and I am hoping we will see a normal trend starting. This is my prayer, my hope, my desire. In the meantime, we will continue to protect her from illness as best we can while still enjoying our time together. As far as the normal side of life with Makenna, things are great. She is an absolute doll baby and we all adore her. She is capturing, loving, silly and always on the move. She is a blessing!

Sydney is great, she is back to school after a week off for spring break. She is preparing for a vocal performance in May and is excited about starting piano lessons. She continues to stay healthy and if you know me, this brings me comfort. Her time with her baby sister is fun, they love to play together, love on each other, dance together and Makenna adores her big sister. Our blessings multiplied!

Max and I are thankful for our yesterdays, blessed always and hopeful for our eternity…

May God continue to bless you and yours as He continues to bless us!

A few prayer requests:

* If any of you have read the guestbook you have read the story about little Livvie, Heather’s daughter who continues to struggle with GVHD after transplant for HLH. Please pray for her complete healing, strength for her family and understanding for each of them. It is difficult to watch your children endure any pain, but the pain of GVH is heart wrenching. Heather, continued prayers are coming and we hope and pray that Livvie is feeling better soon.

* Baby Ethan is doing well, he has hit a few bumps in the road but he has overcome them with strength and smiles. Please continue to pray for his full recovery and freedom from HLH.

* Please continue to pray for Dayne who is another HLH patient that has gone through transplant and has hit some bumps in the road as well. Pray for his liver function numbers to become normal and for his engraftment to stabilize and increase.

The power of prayer is a powerful tool and I thank you for sharing it with us!

Sunday, January 20, 2008 8:17 PM CST

In the midst of the silence and with the distance of my journals it can be taken as a calming that has overcome our home; a sense of peace that we are maintaining a healthy status. I share this and then in the back of my mind my concerned side tells me to knock on wood, to be watchful of what I share in fear that I will jinx myself, my little ones.

My silence has also come from the fact that we have had multiple computer issues (servers that have gone down, losing our hard drive, etc…) and instead of getting frustrated with the lack of my technical skills, I have chosen to accept them and do what the computer will allow and know when I am meant to stop. This has meant less time on the computer and more time loving and playing with our little ones. So please know that if you have emailed us and did not get a response it was not from our lack of care, but possibly from the fact that we did not receive your email, or our response did not ever get delivered. We do care about each of you and want to maintain that connection, so please try again, if you have emailed us and hopefully the computer issues are part of the past and we will connect and be able to respond.

Now let me try and update you on the past few months and the details of the many things that have, and are, taking place in our lives. I will begin with the girls which is what most people are interested in. Max and I have come to learn that as we have had children we take a back seat to them as they become the shining stars of our life. This works well for us since we take great delight in speaking of our children.

Sydney is doing well. She struggled quite a bit from October through December with her coughs and asthma issues. She spent the majority of the last three months of 07’ on antibiotics, steroids and multiple breathing treatments. Sydney on steroids is not a treat for anyone! As many of you may know/remember this all started with her the same time that Zachary became ill and was diagnosed with HLH. Sydney was in the hospital for croup and Zachary was in the PICU at the same hospital fighting for his life. Every year since, Sydney develops a cough that has potential for other issues in the beginning of October and I can honestly say without a doubt that this has been her worst year yet. Despite some minor health issues, she is enjoying school; she has some great friends, continues to immerse herself in our church and continues to enjoy her vocal classes. Sydney is a social butterfly and absolutely loves the holidays and the festive side of anything. Not to mention she was thrilled to have the ability to share it with a sibling again. Christmas was a huge hit, and we all enjoyed it greatly. Although I must say, after the girls had opened their Santa gifts, Sydney seemed to get very quiet and became very distant. As the day progressed she shared that it is sometimes hard to feel so happy when someone is always missing from our happy moments. She continues to love Zachary deeply and loves and misses him very much!

As Christmas passed and we headed toward the New Year it was time to start preparing for birthdays for both girls. One afternoon as we were making plans we were teasing Sydney that she didn’t need anything for her birthday as she did pretty well for herself over Christmas, she paused for a second and whispered in my ear that the only thing that she wants and will ever really want is to have her baby brother back. As you can imagine this brought tears to my eyes not only because I want to give her the things that she wants (within reason that is) but also because that is a gift that we would all welcome. I shared with her my feelings and the desire that we all have to be able to see him and hold him. But that God knew what was best for Zachary and the rest of his family and so we are very lucky to have such a cute little angel to watch over us. She smiled with comfort and we finished our birthday planning. She celebrated her birthday with 4 very sweet little girls. They all showed up to the house in their PJ’s, they did some arts and crafts, ate pizza, opened presents, made ice cream sundaes and ended the night with a movie and lying on the floor in their sleeping bags. There were a lot of smiles, laughter, dancing and fun, and at the end of the night Sydney proclaimed that her 7th birthday party was the best yet. Hurray, success for the parents!

Now for Makenna. It is hard to know where to start with this little bundle of joy. She is a delight in every sense of the word. We all adore her and the extra bit of spice that she adds to every moment of our day. She is doing extremely well, (again let’s all knock on wood) physically and mentally. We did not ever receive conclusive answers regarding the testing that we had done in Cincinnati. The testing and numbers that have been watched continue to fluctuate greatly which has not allowed for a true understanding as to what may be happening with her immune system. In November we had more blood counts ran as well as immune studies done that were sent out to Cincinnati. Her CBC showed that her body was trying to fight something off, although at that time externally she was not showing any signs of an illness. The next day, Sydney was at the doctor with high fevers and then Makenna became sick 2 days after that. Thankfully we have a doctor that is very proactive because of our history so she watched Makenna very carefully. She had a runny nose and a tight cough and was started on antibiotics and some breathing treatments. Thankfully she did not ever get a fever, although we did deal with loose stools and a rash. The entire week that she was sick, I was a nervous wreck, not to mention Max was also out of town. Thankfully, in the end, she recovered faster than Sydney did and was in fairly good spirits through all of it. During that time, we received news back on her immune studies stating that her body could not handle getting a fever as her NK cell function had depleted again and her immune studies came back showing it was challenged. Let me say that this was not the news that I wanted to hear in the midst of her being sick. In the end, I have to wonder if the numbers that were being seen were not her body’s reaction to being challenged and fighting a virus that she was dealing with. We were told that we needed to have a CBC a couple of weeks after she was better to ensure that her counts had recovered, which we did and they were all stable. Since then, she has had her one year check up appointment and is continuing to grow on a pace that exceeds Sydney. We did another follow-up CBC and that remains stable as well. At this time we will continue to hold off on any immunizations until we determine that she will be able to tolerate them or we can emotionally handle her having them. It was recommended by Cincinnati that we have another full blood test done in March, which will include immune studies to determine where she is at that time and how it compares to the ones that were done in November. Meanwhile, we continue to guard her from people that are sick, we do what we can to stay healthy, she will continue to nurse to help give her immune system a boost and we enjoy every moment together.

Makenna has hit many milestones and she does them with great speed. She has been walking for quite a few months now and I am beginning to wonder if she is not in training for a marathon as she is constantly on the move and in a fast pace. She moves from one thing to another constantly saying “this, this”. She is a climber and is into everything, things that we baby proofed for Sydney, Makenna has already figured out how to open. She is adding to her vocabulary on a daily basis, she has a very comical sense of humor; she maintains a smile and captures the heart of those that meet her. She is very determined, she is focused, loves music and dancing, and she is beginning to use some sign language. She enjoys holding a picture that we have of Zachary and walking around with it. The two of them could pass for twins and it is nice to see a bit of him in her. They would have been the best of buddies. She is a bundle of joy and we love her immensely…

Makenna turned one on the eighth and it was a cherished day. I felt like I was floating through the day with her as I was so thankful for the day, for her life and for her health. We celebrated as a family and enjoyed watching her dive into her birthday cake.

Our house is buzzing with the sounds of little ones: from Makenna talking to Sydney reading and then there is the new addition to our home, a beautiful piano that was generously given by our loving neighbor to Sydney and Makenna. Sydney is beaming at the opportunity to learn to play the piano and we welcome the opportunity for her. It is a cherished gift and a gift that will touch all of our lives for years to come.

Max and I both continue to do well. Our love for each other continues to remain very strong and we continue to enjoy our time as a family and as a couple.

Max stays busy with his job and did quite a bit of traveling during the last quarter of last year. He continues to serve as a deacon for our church, enjoys his Bible study classes and serves as a member of the Shrine. He is an amazing father and a wonderful husband and both girls absolutely dote over their daddy. The more I watch him love our children, the more I love him!

For the time being, I am spending most of my time doting over our girls, take care of our family, working part-time and enjoying family time. I am hoping to put more work into writing my books this year and spending some quality time as a family, experiencing new things. I am thankful for where we are today and so very grateful to God for the strength that He has given me to get through the hard times and for guiding my life spiritually!

Before I close please take a moment to pray for some little ones who have touched our lives and are fighting a battle that no child or family should be challenged with. Please pray for baby Ethan, who has gone through transplant for HLH and is doing well. His family is amazing and is a true example of living through God’s grace. There are so many others: Dayne, Susie, Levi, Joel, Cassie, Brittney. Life takes so many turns and can sometimes be challenging to handle, through each prayer that we send it lifts that family up.

If you are interested in helping, in making a difference, please consider becoming a bone marrow donor. You could have the opportunity to give the gift of life, the gift of a second chance. Another way you can help is by donating blood products. I know that during the holidays the blood banks become very low and when you are in the situation of transplant you require a lot of blood products. It is another way to save a life…

Thank you for caring, for continuing to follow our family. We welcome our future and what it may hold. We are cautiously optimistic for our time together. I will update in March when we get the results of our next counts, that is unless something happens between now and then. I will try to add new pictures from time to time over the next few months.

Until then, love a little deeper, hold your loved ones a little longer and may God continue to bless you and yours as He continues to bless us!

Sweet Zachary:

Little one, each of us misses you so very much and we continue to hold your life with us so very dear. In your special way, you taught us to be courageous, to love deeply, and to be faithful through all the turns in life and that life is only as good as we allow it to be.

You my dear, I will forever cherish and look at the world through your eyes.

Continuing to hold my heart, I love you deeply,

Mommy

Wednesday, October 3, 2007 12:36 AM CDT

As the colors change to express the beginning of autumn, the time for falling leaves and the crisp cool morning air that awakens our senses, we are reminded of the many memories we have of this time of year. The challenges of Zachary’s diagnosis, the start of treatment for HLH and then the last time we held him in our arms. Although we enjoy this time of year in our lives there is also a deeper sadness that shows itself. With the coming of Halloween Sydney starts to realize the time of year and that it wasn’t long after that her sweet Zachary was gone from her sight. You notice the sadness in her comments, her questioning when Halloween is, out of excitement for the festivities and out of sadness because of the loss she felt soon after. For Max and me, it is the memories of a journey that our life began with a diagnosis of a fatal illness for our child; words a parent does not ever want to hear. The journey of our little boy that captured the hearts of so many and taught his family the depths of love and sorrow; the depths of faith through every moment of happiness and struggle. It has been 4 years this month since Zachary was diagnosed with HLH and it will be 3 years in November since he left our arms to enter into his eternal life. Where did the time go?

Our house is buzzing with all the plans for fall: Halloween, Thanksgiving, and then Christmas. Can you believe that it is already that time of year? We are looking forward to spending every moment together and making more memories. I am looking forward to all the holidays’ firsts for Makenna and Sydney together. We do not have any specific plans, but what I can say is that we are planning on making them special and enjoying every moment.

Since I last journaled we have been very busy. Sydney has started school and enjoys it, but she will tell you she misses the fun she had in kindergarten. First grade is all business and she is still trying to adjust. She is learning by leaps and bounds and that thrills us greatly. She is doing a bible study class on Wednesday which she thoroughly enjoys and then she is taking vocal lessons as well. I think the vocal lessons are a huge hit, her teacher is great and she has a lot of personality, and Sydney really enjoys her. She has cut her hair off to her shoulders; I miss the long curly locks. But I must admit it looks really cute on her and I am not missing the morning disagreements on what we are going to do with her hair. She is growing up and maturing right before our eyes. Like I said before where did the time go?

Max and I are doing well. Max has been extremely busy with work which has required him to be gone more than we are all accustomed. He was gone for a big portion of September and was greatly missed by all of us. I must say, the time went faster than we all expected. You see, in the past when Max has been gone there was always something that happened. Initially, Zachary got sick, then other times I always received bad news about treatment or prognosis, etc. So suffice it to say we were thrilled when he left and then came back and we are all healthy, happy and in one piece. It was a big step in the German house that finally felt “normal”. We are thankful for each moment that we have together and with our children. God is good!

Now for Makenna, my little bundle of fire that is always on the move. She will be 9 months old next week and I can not be more thrilled with where we are at this very moment. Life with her is precious. She has a great, capturing personality and loves to be on the go. She cheerfully screeches and giggles with glee at all the excitement that she is finding in her independence. She is feisty, determined and willing to try anything. She is currently talking some, waving backward (loves to wave at the bus and the kids in it), blowing kisses, standing alone and is on the verge of walking. She can climb stairs faster than any child I have ever seen. I see bolting down the furniture again in our near future; she is a climber. She loves music and any musical instrument; she adores her big sister and loves her parents equally. She greets the world with smile and is thrilled to be apart of it.

As for the medical side of our life, we have not yet had our telephone consult with the doctors regarding all of Makenna’s test results. Primarily because all of the results are not yet back. I have been told that it may take 2 more months before we get the results of the gene function tests. These are considered the big ones that may give us more answers. The results I have received have been slowly trickling in over the past couple of weeks. At this time, Makenna’s NK-function results have come back completely normal. This test has not ever been normal for her and is a marker that is watched closely with HLH patients. The NK (also known as Natural Killer)-cell function test is a test that determines the bodies’ ability to protect itself against viruses, tumors, etc. Without this or its ability to function, your immune system is weakened. With that being said, let me also share that with the Munc mutation that Makenna carries you can have a normal NK-Cell function and still get HLH. For right now we are concentrating on the “normal” which is a nice thing to hear. We also did a follow-up liver function test last month after the extremely elevated test we got back from Cincinnati and that too revealed a completely normal status. The elevated liver function was concerning and was pointing to possible issues other than HLH, so as you can imagine we were thrilled to hear that she is in normal range for the first time. We, of course, will continue to check and watch the trends, but for right now normal is good. The only other information that I have is that we have received the results of the HLA typing should Makenna require a bone-marrow transplant. As far as immediate family, Sydney was the closest match and she was only a partial 4 out of 8. When doing a preliminary search there were not any perfect matches in the donor bank for Makenna. I was hoping that Sydney would be our perfect match and/or we would at least have a perfect match in the donor registry. It is not needed at this time and I pray that it is not ever needed, but it would have been a nice thing to know we were covered if it was ever needed. For now we wait, we enjoy every moment and we cherish the laughter, the lessons and ongoing research to find answers. We continue to protect Makenna’s immune system as best we can. We will not be doing shots anytime soon and we continue to not expose her to large crowds, people that are ill, etc. Our answers will come in God’s time, so we will wait…

Before I close I would like to ask you to pray for a family that I have been in touch with since their son became ill 2 years ago with HLH. Bryant was a courageous little boy who fought a long hard battle and he did it with a smile on his face and love in his heart. He recently passed from his parent’s arms into his eternal life. Please pray for strength for his family and peace to get through the days ahead. I would also ask that you pray for baby Ethan, as they are preparing for transplant in the next couple of months. He is surrounded by an amazing family and is absolutely precious. There are so many little ones that are either entering transplant for HLH or are currently in transplant, please pray for Joel, Susie, Levi, Cassie, Brittney and there are so many more. Place your blanket of prayers around them for their complete healing and to be freed from HLH.

May God bless each of you for continuing to stand in our corner. You truly are our prayer warriors and we are forever grateful to you.

May God continue to bless you today, tomorrow and always, as He continues to bless us!

Dearest Zachary:

As our time of year approaches, the life you shared is so clear. You are forever my little angel and I miss you terribly. The loss that I feel for you has not been diminished by a new life; it only allows me to appreciate it more deeply.

My sweet, enjoy your time with papa and all your new friends. Until we are together again you forever hold my heart!

All my love,
Mommy

Sunday, September 2, 2007 9:15 PM CDT

Okay here goes the update that many of you have been waiting for. Forgive my delay in responding. Between lack of sleep this past week from travels and getting back late Thursday night/Friday morning it has taken me some time to adjust and wrap my thoughts around the visit to Cincinnati. We did feel your prayers and your love moving us forward and helping us through that day.

We arrived at the hospital at around 8:00 in the morning and filled out all the necessary paperwork, everyone got an arm band and then the anticipation heightened as the wait began. We had minimal sleep the night before; Makenna was in a new place and was not willing to leave my side. Therefore, she spent most of the night either nursing or crying; which left us quite tired upon arrival at the hospital. As the visit began, we felt a sense of comfort from each individual that entered the room. It was apparent that they had dealt with many patients and families with HLH and we prayed our direction would become clear. We were told that there were currently five HLH children on the transplant floor. It was a mixed bag of feelings, as I toured the floor that day. Knowing first hand what those individuals were facing and knowing that I did not want to have to enter one of those rooms again for our own children. We were given a three-ring binder package and guide that informed us of their transplant facility and then we met with a number of people on the transplant team. When our opening meeting was discussing purely the transplant process, including an outline for meeting with social workers, bone marrow transplant finance and Child Life we were beginning to feel as though this was the direction we were headed and, I must say, we felt a little uneasy, almost panicked, about all of it. We were later told that they were taking all these steps just in case because of the distance that we had traveled. We had a definite sigh of relief!

Once we met with the doctor and she had the opportunity to talk with us and do an exam on Makenna we moved on to what she felt we were potentially facing. The easiest way to explain this is to say we still do not have a conclusive direction, which is not all bad. Especially since for the first 2 ½ hours we felt as though we were being prepped for a definite direction of bone marrow transplant. It was determined that they need to do further testing and do all the blood counts there in Cincinnati. They wanted to run a specific test on the mutations that she carries that will determine if the gene is functioning properly. This test has only come out in the past 6 months or so. They will also run other tests that help to determine what direction we are headed. When we asked the doctor about the possibility of HLH due to the hemophagocytic cells on the bone marrow aspirate and peripheral blood slides, she basically said that we need to look at the entire picture and determine if this is a normal response or if it is the beginning stages of HLH, which the other tests should help us determine.

After the meeting with the doctor it was time for blood draws. We were all going to be giving blood, and Sydney courageously decided that she would go first. She is amazing and so incredibly brave. We are so very proud of her. We were all being tested to do HLA typing which determines if Makenna were to need to go to transplant if any of us are her perfect match. If they do not find a match with us they will do a preliminary search so that we know where we stand for other possible matches from the Bone Marrow Registry. We were told that they will not go to transplant without a perfect match. After they completed the draw on Max and me it was Makenna’s turn. This was the moment that we were all dreading. She is not an easy stick and they needed 27 cc’s of blood. Through a lot of screaming (by Makenna externally and myself internally), many nurses, 3 sticks and 3 hours later we were finally able to get what was needed and it was done by allowing her to breastfeed (I prayed she didn’t get angry and bite) and wrapping her in warm blankets. The tricks of the trade, I guess! After all of that Makenna still had a twinkle in her beautiful baby blues eyes and produced a forgiving, loving little smile for everyone in the room to show her capturing disposition.

Once all of the test results are in we will have a phone consult in approximately 2 weeks to review our direction and where we may be headed. The positive is that she is thriving and developing ahead of schedule and very determined. The negative is our history with Zachary. The cells that were found on the slides for Makenna and her liver function tests that are elevated and continue to rise. We pray that the genes are shown to be functioning normally and that we can breathe a little easier and let some of the fear lessen. If that is not meant and our direction is headed toward transplant we pray for strength, for guidance and an army of individuals ready to pray us through all of the twists and turns associated with this disease and the cure. Either way, our ultimate prayer is for a healthy outcome, our life is in God’s hands and that is always a good place to be…

After a long day at the hospital we were able to venture to the Cincinnati Zoo for a short time, which was pretty empty of people due to children being back in school. We felt like we had it all to ourselves, then we shared a wonderful dinner together. The evening was spent with Sydney and Max at the pool and Makenna and I laid out on a blanket in hotel room playing with toys. We were all exhausted and settled in for a long nights sleep, which Max and I were so very thankful for. We awoke the next morning to happy little girls, a wonderful breakfast and time together at the Newport Aquarium which is across the Ohio River and faces the beautiful Cincinnati Skyline. We had a great time. We all enjoyed the fish, the calmness of the morning and our time to explore together. We ended our trip with lunch at a local pizza place and back in the car to head home.

On our drive to Cincinnati Sydney asked if we were still in Virginia and we told her that we were in Ohio and she proceeded to give a sad look and said, “Boo hoo, I want my Virginia back.” It was cute and touching to see how much she loves the state that we live in. So as we headed home Max informed her that we were getting her back to her Virginia. Home sweet home…

We will keep you informed as the results of Makenna’s tests come in and give you an idea of what is happening with each of us. In the meantime, please continue to pray for strength and peace as we await the results, and continued health for both Sydney and Makenna. We would also ask that you keep Sydney in your prayers as she starts school this next week. She is nervous to start school and also leave her little sister. She is loving and so very dedicated to her family. These little ones, they do hold my heart…

Until next time, enjoy your moments together, the gentle touch of your loved one, the loving smile of your child, an extra cuddle before bed…

Staying focused and continuing to gain strength from the prayers of many! We thank you!

May God continue to bless you and yours, today, tomorrow and always!

Dearest Zachary:

Your peaceful presence is apparent in our times of fear… Sweetheart, thank you for continuing to be our little angel and watching over us. We love you, we miss you and we cherish you!

Sydney saw a picture in the clouds yesterday and determined that you were sharing a picture with us! As you can see, you continue to remain very close to her heart. But you already know that…

God forever keeps you close!

Loving you through eternity,

Mommy

Tuesday, August 28, 2007

It is with much appreciation that I come to you today. You are all holding strong in prayer for our delightful little one and we feel each one holding us up and moving us forward. Thank you!

We are off to see the doctors, the doctor of Cincinnati, because, because, because, because, because, because of the wonderful work she does(it is a female doctor). Okay, I think you get the idea. Like Dorothy in the Wizard of OZ, we look forward to coming home on Thursday with good news to share with each of you. This is our hope and our prayer. Our appointment will be tomorrow first thing in the morning and we are told to prepare ourselves for a long day. Then it is off for some family fun and I have no doubt we will all be ready for it.

I need to run, time to get in the car. But before I go please share in our prayers for Makenna and I must add these are Sydney's words, her simple version of her strong desire and hope. We pray God, that you please, please, please, keep our baby Makenna safe and healthy and that she does not have to go through what our Zachary did... AMEN!

God bless each of you today, tomorrow and always!

Saturday, August 18, 2007

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:4-7

It is with calmness in my body and peace in my heart that I share with you the results of the testing that has been completed on baby Makenna. We received a call yesterday late afternoon that after multiple reviews of the bone marrow aspirate slides and input by a few pathologists the results came back basically inconclusive. Let me explain. Makenna is showing hemophagocytic cells in the bone marrow, however these cells are not ingesting other cells, they are simply present. The concern however is if they are activated by a virus how they will react under stress. This is where everything becomes a little tricky. It does not rule out the possibility of disease, but it also does not rule out the possibility of health (in our minds at least). The difficulty here is that normally when this disease is seen here by the doctors and pathologists it is typically in the end stages: organ failure, blood counts that are very unstable and it is extremely evident on bone marrow aspirate review. The question is what percentage of hemophagocytic cells are normal or okay to have in the marrow without the onset of disease. We have come to the end of our road as it relates to getting our answers in Richmond. Please, do not get me wrong. The doctors here are wonderful and stand behind us in our decisions to do what is best for Makenna. After discussion with Makenna’s doctors and contact with Cincinnati Children’s Hospital it has been determined that she needs to be seen by the experts in this disease, who are in Cincinnati. Max and I both feel like this is the best thing we can do for our little one. I pray that we will be able to get the answers to where we stand. I pray that what is being seen will be seen as normal, or at least normal for our situation. I pray that they will have the answers that are needed to allow us to move through each day without a lingering fear of what will strike tomorrow. My fear is that they will tell us that it is the initial stages of disease and we will need to discuss options and direction. I concentrate on the need to find answers and not live from test to test wondering what may come back. I concentrate on the hope that we will be giving them information to learn from and to help with a clearer picture of this horrific disease. So, as Makenna’s doctors shared with us, they are comfortable with what they are seeing because we have time; time for answers and time with health. The most important for me is the time for health.

We will be headed to Cincinnati for a few days toward the end of the month and we are going to make the most of our trip. We are going to be planning some adventures while we are there to remember our trip as a time of enjoyment not a time of hospital visits. Sydney is excited and she enjoys our trips together as a family. She is actually so excited that she is counting down the days until we leave. We all remain focused on the good.

On a fun note, while I sit and type I have Max, Sydney and Makenna in the background playing ball. Makenna is already getting a feel for what it feels like to be the little one; her big sister decided she should be the monkey in the middle. Thankfully, Makenna doesn’t mind she is just enjoying the playtime. The problem they are having is that the little monkey doesn’t stay in the middle very well!

Our love for each other is deep and we are so thankful for our time. We rejoice in the laughter and the smiles that the girls are constantly sharing. We rejoice in the glory that we have been given to cherish each day. Because through each and every trial we are continually reminded of how precious our time is together.

I believe our prayer chants for Makenna’s health are being heard and that each of you are helping us make that difference. Please continue to pray for good results as we head to Cincinnati; pray for Makenna’s health, answers and direction for our future. Your blanket of prayers continue to be felt. We thank you!

Remaining hopeful, faithful and full of love from Virginia!

May God continue to bless you as He has blessed us!

Thursday, August 16, 2007 10:45 AM CDT

Waiting, praying, and looking for the hope in the midst of the storm that we pray decides to fade. This is what we are feeling in our home this morning. Ours hearts fearing the worst and praying for the very best. The unknown can be an uncomfortable place to be, but I also think knowing the depths of what we could be facing is absolutely terrifying and can cause you to feel numb from fear. We should hear the results of the tests sometime today or early tomorrow.

I spoke in my last entry about sharing the events of Tuesday. Like I said before it was a difficult day for each of us. Putting another child through this type of procedure was difficult enough and then you add the emotions of the memories of the multiple times that we had to do this with Zachary. Wow, it didn’t take much to bring tears to our eyes. I was up early that morning, unable to sleep, my mind playing each event out in my head. Trying to think of what I could do to make everything better, praying that I was in a bad dream, that really I was sleeping fearing my past would repeat itself. Unfortunately it was not a dream and I was not sleeping. I did the only thing I know to do when I am stressed/ anxious. I started cleaning, yes 2:30 in the morning I am cleaning, then I decided to go anywhere and everywhere I could think of online to ask for prayers for Makenna. I was determined to flood the heavens with prayer requests for her comfort, her safety and complete health. I woke Makenna up around 4:30 to nurse; she would not be able to eat again until around 2:00 that afternoon, after the procedure. She was warm in my arms, loving, sweet; appreciative of what she thought was just an early morning snack. After some quality cuddle time, I placed her back in her bed fast asleep. After I got ready I decided to go out and get all of us drinks from Starbucks. On the way, I had the windows down allowing the breeze to hit my face and I remember thinking as I was driving down the street what I wouldn't give to have a megaphone. I pictured myself driving up and down each street requesting prayers for Makenna. Please pray I would have chanted, please pray! It is amazing to me the things that run through your mind when you are challenged. The things you are willing to do to protect your children. Like I said earlier I wanted to flood the heavens, I wanted our prayer chants for Makenna to be heard loud and clear!

Once Makenna and I got to the hospital the wait began. We arrived early sitting in the waiting room with many others that I am sure could think of other places they would rather be, I know I could. Makenna was hungry and therefore standing with her was my only option. She went through times of fussing and then times of delight where she would stand on my hip bounce up and down and baby talk with anyone and everyone who would listen. She is quite the little social butterfly and absolutely loves to be talked to. A dear friend from church arrived and was very supportive as we were being brought back to our room. So thanks for your support, the goody bag, playing with Makenna and most of all your prayer before you left. As the day progressed Makenna gave up on me feeding her and decided to go ahead and cuddle up on my shoulder for an hour nap. It was nice; we turned the lights out and enjoy the moment together. I love the feel of my baby resting into my body, the feel of her breath on my neck and the steady procession of heartbeats against my hand as I cradle her back. It was a moment in the day that I needed with her… After nap time she awoke ready to play, we placed a playmate on the floor and bought more time as we waited for the blood draw, IV and aspirate.

The time had come when we needed to draw blood and place the IV. They had called in our favorite nurse from the NICU team who has been doing all the sticks on Makenna since the first day in clinic when it was not an easy thing to accomplish. She is a wonderful lady who is excellent at what she does. The blood draw was not a problem; we got that on the first stick. It was getting an area that would allow fluid to flow. She would find a vein, flush the fluid and the vein would blow. It was awful and Makenna was showing exactly how she felt about it. She was telling us exactly what she thought as she laid on the table, baby talking, screaming and crying all at the same time. After the fifth stick, I held her to calm her before we tried again and it was mentioned that we were going to need to put the IV in her head. Well this is when I lost it, the flood gate opened and tears began to flow. An IV in my babies head, this is a new one for me and not an option I was exactly thrilled about. After seeing my distress with the situation, it was decided that there was one other area that might work and they would try that, if we could keep Makenna’s leg still and straight we should be okay. You see, Makenna is an extremely strong child and as I have said before, very determined. Then the IV that was placed last worked. It was placed right above her ankle and it was not in 5 seconds and she was curling her little toes around the line trying to pull it out. Like I said she is determined. Once this was done anesthesia got there about 10 minutes later and she was sedated. Once sedated, the procedure began, Max stayed in the room to be with her and protect her and I walked the halls. The bone marrow aspirate is not a procedure that I have ever watched and do not feel the need to watch. Max on the other hand has always stayed in the room as a support for our little ones during this procedure. The procedure took about 20 to 30 minutes and she was done. The sweetest moment is when she woke up; she did not know Max was there because she was asleep when he arrived. She was still very loopy from the anesthesia bobbling her head side to side and sporting a silly little smile. She saw Max, smiled with eyes half open and with a cheerful little voice says ah, hi dada, hi dada. Warmed our hearts, she is so sweet. Once she was fed, we were happily out the door.

At home she ate, played for a little while and went down for her afternoon nap. While I caught up on a few emails and phone calls. The afternoon was calm; Makenna awoke happy and feeling great. Thank goodness!

During all of this Sydney was having a play date with some wonderful friends. Thanks to each of you for caring for her and giving her something to look forward to on a day that none of us were looking forward to. Her mind was on fun with her friends and that is exactly what she needed. Thank you! As for what Sydney knows and how she is doing. Well she knows everything that is going on. From the beginning of Zachary’s illness we have always been up front and honest with her about what we may be facing. She expects us to do that now and you can't keep things from her. She is a very observant child, especially when it comes to emotions. She is sad, scared and nervous and those are her words. But as we talk, we talk about our love, our love for God, our love for each other and how with those things and all of the prayers of others we will get through this and we will accept the challenges that we are faced with and God will guide us through. It brings her comfort and it brings me comfort. To share her observant side; we were playing downstairs and Makenna was getting a little fussy. I was trying to buy myself a little more time before I put her down for her afternoon nap. Sydney comes over as I am sitting behind Makenna playing with her on the floor and says Mommy, you just want to spend as much time with her as you can don't you. Wow, this hit the depths of my stomach and placed a knot in my throat. I smiled and shared that I will always want to spend as much time with my children as I can. Like I said very observant.

Max and I are hanging in there. It is with your prayers and your dedication to our family that makes this more bearable. We feel your love and greatly appreciate it.

I will update with the results of the tests when I get them. Please focus your prayers that Makenna’s health will remain good and the results of the biopsy will not show any signs of disease.

Thanks again for your prayers and placing your blanket of love and faith over us!

May God Continue to bless you as he continues to bless us!

Holding onto hope!

Dearest Zachary:

Sweetheart, keep a watchful eye on your baby sister for a healthy result and place your gentle comforting peace around your family. I know you and papa remain with us through each step of this journey.

Loving you always,
Mommy

Tuesday, August 14, 2007

It has been a long day and I can honestly say I am very thankful to be home. I want to thank each of you for the outpouring of support, love and prayers. Each of you have touched the lives of our family in a very special and unique way. Today we were able to stand strong because with each of you united in prayer with us we know that anything is possible.

I will briefly tell you how the day went, I have been up since 2:00 this morning so I am ready to get to bed and end my day with a thankful prayer.

The tone in our house as the day started was one of sadness. This procedure brought back many difficult memories and it was just awful to be putting another child through this. That being said, Makenna did well. We had a few hurdles in the day, but considering everything involved she did beautifully and made all of us so very proud. I will give you more details of the day tomorrow, but I wanted to let everyone know we are home and thankful to be together!

It is with your blanket of prayers and God guiding our journey that all of this is possible. Thank you, thank you, thank you!

I do believe we had our angels with us today!

May God bless each of you as he continues to bless us!

Saturday, August 8, 2007

To all our loving friends and family:

I come to you this morning to ask for your prayers for our family once again. It is with a heavy heart and sadness that I even need to put this into writing, much less ask for prayers.

As many of you know we have been monitoring Makenna very closely since birth to ensure her health and to also ensure that HLH (the disease that Zachary suffered from) was not going to be part of her future. After doing a follow-up blood test this past week due to concerns that were being seen on her regular blood tests, it is indicating that she has histiocytes in her blood. This is alarming because we do not know if these are normal working histiocytes or if they are attacking the healthy cells and tissue which is what happened in Zachary's case. Makenna is being monitored very closely by an excellent team of doctors. The next step to determine what direction we will need to take is to do a Bone Marrow aspirate. This will allow the medical team to determine if we are dealing with HLH or a normal response that will need to be monitored closely.

So on Tuesday August 14 at 8:30 in the morning Makenna will be prepped for a Bone Marrow aspirate. It will then take approximately 48 hours to have the answers. Please wrap your blanket of prayers around our precious little one. Please direct your prayers for her safety on Tuesday morning during the procedure and for a healthy outcome to live a long life with us.

When living through this disease, you come in contact with amazing families that are traveling similar journeys. At this time I would also ask that you open your hearts and expand your prayers for baby Ethan who has also been recently diagnosed with FHLH. His sister is a hero through this disease and has undergone a bone marrow transplant and is now doing great. To live through this nightmare again is heart wrenching and I know they could use all the support and prayers that our wonderful prayer warriors can offer. Ethan's mom was a big support for myself and a wealth of information when Zachary was going into transplant. Lee Ann our hearts and prayers remain with you, Ethan and your entire family. Please visit their webpage and show your love and support to this wonderful family and brave little boy!

http://www.caringbridge.org/mo/kristangrace/

www.caringbridge.org/visit/ethanlee

My love to each of you who so faithfully wrap your arms around us and continue to keep our family close in prayer. We are forever grateful!

The power of prayer is an amazing gift, we thank you for sharing your prayers with us!

With hopes and prayers,
The German Family

PS We will update the web page after the procedure on Tuesday to let everyone know how it went and then again when we get the results. Thanks again!

Saturday, July 21, 2007

It was four years ago today that we as a family were enlightened and touched by an amazing little boy. A day where we were oblivious to the journey that our future would hold; a journey filled with more love than we thought possible, more heartache than one can bear, more trials than we thought we could live through and miracles upon miracles. Four years ago our eyes were opened to the world of an amazing little boy who from the moment that he came into this world he captured our hearts and taught us more than we ever thought imaginable. He is our Hero and today I come to you to wish him a happy 4th birthday.

We celebrate today with heavy hearts for the desire to have our precious Zachary with us to celebrate his special day. Today was filled with memories, a special dinner, beautiful balloons, song, and of course birthday cake to remember our little one.

A child is a complete package and with each layer of wrapping exposed, a new surprise presents itself. With Zachary, we are sad that we were not able to unwrap all of the layers, through toddler, youth, teen and adult to see exactly what the complete surprise would be. We will learn that in our eternal life… With Sydney the layers of wrapping exposed are revealing an amazing sister, compassionate little girl, talented, loving and determined. We look forward to what her future will hold. Then we have our little Makenna who at such a delicate age is revealing herself in many layers. She is already incredibly determined; she has a charming personality, an endearing smile and is full of love. We have been blessed with amazing gifts in our life and with children it is definitely a gift that keeps on giving. They are our gems!

We are all doing well and enjoying summertime. We all love being outside and it is good for all of us. We do not have plans to take a summer trip, although it does not mean it won’t happen it just means we haven’t planned it yet.

Sydney is doing great. She is growing by leaps and bounds and becoming such a lovely little girl. She is doing a summer academy for rising 1st graders, which she loves; she has taken Vacation Bible School and has enjoyed time in the pool. Her bond with Makenna is quite impressive; she is our little mommy in the house. Anything Makenna needs Sydney thinks she can accommodate, aside from breastfeeding that is, but to be honest I wouldn’t even put that one past her to try. She continues to talk about Zachary, his likes and dislikes, why he had to be sick is a hot topic lately and how much she loves him. She is a bundle of fun and we love her dearly.

Makenna is a little firecracker and is amazing. At 6 months old she is able to sit herself up, crawl, pull-up to standing and has started talking (her first word was “mamma”). There is not anything she will not try and usually she tries until she accomplishes it. She is an absolute mommy’s girl and I will take it. She could not be happier than when she is on my hip holding onto my shirt. She is a little social butterfly; she loves to be on the go, talked to and played with. We are enjoying every ounce of her and are so very thankful that she is in our life. Max often says she is living for her and for Zachary and I would agree, she has his spirit in her. Zachary would have loved her!

On the medical side of life with Makenna, physically she is doing great; she is growing and surpassing all milestones in sprint fashion. We continue to have her watched very closely every six weeks with blood work and doctors visits. We started out with having little to no immune function and now we are at about 50f where we would like to be. Thankfully she has remained healthy. We continue to hold off on doing any shots at this time and probably will for quite a while. The shots are what triggered Zachary’s disease. We have another blood test pending in Cincinnati to determine if her NK Function is continuing to increase. The other concern which we are faced with is some elevated counts as it relates to her liver. There are many doctors who are looking into the possibilities as to why this may be happening. We are praying that everything will become normal on its own and medical intervention will not be necessary. It is a challenge that we face, trying to find the balance between being cautious and watching Makenna after what we have gone through with Zachary and trying to stay focused on how she looks and her accomplishments. We place our concerns in God’s hands, He knows what we are capable of, he knows that we remain true to Him and that we know our children are a gift to us and we will cherish them for the time we are given.

Max and I are doing well. We are enjoying our girls, enjoying time together and enjoying summer.

Thank you for all your love, dedication to our family, and thoughtfulness through our journey. Your journal entries are so very touching and they warm my heart as I read how much our little one touched your life. Thank you for sharing with us!

May God continue to bless you and yours as He continues to bless us!

To my precious Zachary:

Sweet baby boy, I miss you more than words could ever fully express. My heart holds the truth to the depths of my desire to have you with me and so, therefore, I know you are aware of my love for you.

I do hope your heavenly birthday was wonderful. I hope you enjoyed the balloons we sent to you.

Sweetheart you continue to hold my heart.

Happy birthday my little cuddle bug!

I love you,
Mommy

Thursday, March 29, 2007 2:25 PM CDT

July 4, 2007:

I wanted to wish each of you a wonderful 4th of July.

We are all doing great and enjoying each moment of our life together. Life is good, God is good and we are grateful.

I have added a new picture of the girls. Enjoy!

I will update very soon and give you all the exciting baby details of the amazing progress Makenna is making and the shared moments of our family.

Until then, please know that we greatly appreciate all of your prayers, your touching entries and your love. You have each touched and blessed our lives.

May God continue to bless you and yours as he continues to bless us!

Loving each moment and remembering that each day together is our gift...

April 23, 2007:

The prayers that have been extended recently on behalf of our family are greatly appreciated. I do not ever discount the power of prayer. So with that in mind, please know your prayers for my sister are being answered. Her surgery went well, some rough spots, but thankfully after a week in the hospital she is home recovering with her family.

We continue to seek information to determine Makenna's health. Our prayers are for health and that she will live a long life here on earth. Call me selfish but the thought of losing another child turns me inside out. My family means the world to me...

I will update as soon as I have all the information which I hope will be soon. Until then thank you for your thoughts, for your kind words and always for your prayers.

May God continue to bless you and yours!

April 16, 2007:

I come to you this morning with a prayer request: My sister, Kim is having major surgery tomorrow morning and well, as you know, from witnessing our medical struggles we go into this very guarded and fearful. I ask that you keep her and her family in your prayers. That God will watch over her and see her through this surgery with peace and grace. That she will receive a full recovery with minimal pain.

I will journal soon to update on Makenna's test results and her well-being. Until then, may God continue to bless you and yours and may we always appreciate the gift of life that He has given us!

Thank you for your love, your support and most of all your faithful, dedicated prayers for our family.

We extend our love to each of you!

Thursday, March 29th:

The month of March for our family holds the memory of hope and promise for the future. Zachary’s transplant day, March 31st is upon us. It was a day when I felt a burden lift from shoulders and a peace that Zachary would be okay. It is a day when a man that we didn't even know gave of himself to save our precious little boy. The day when you start counting day plus 1, day plus 2, counting towards the success of years. Our years were cut short and our hearts left heavy for our little boy that touched many lives and taught his family so very much. In Zachary’s memory and his valiant battle we will wear purple on Saturday, March 31 as we did on transplant day in 2004, our day of hope.

It is amazing how fast time goes by when you are in the depths of baby land. If only we could slow the clock to enjoy more moments, to take them all in and to embrace each breath. We are all cherishing our time with baby Makenna. She is growing by leaps and bounds, now sleeping through the night in her bed, laughing, cooing and warming our hearts with an abundance of smiles. We are all relishing in the new world that is being seen through her eyes. She is a sheer blessing and has a beautiful mixture of both Sydney and Zachary. Her personality is so sweet, she loves to be cuddled, talked to and kissed and we happily oblige her.

As far as the medical side of life, we did the testing on Makenna the end of February and are still awaiting the results. To be honest, I am trying to find peace that I may not ever know the risk that Makenna faces as it relates to HLH until it either does, or we pray, does not express itself. I am told that we should know something within the next couple of weeks. I am also told that we will not have definite answers; it will only be markers as to how her immune system seems to be functioning. Some idea would be nice, but mainly it means fully relying on my faith and knowing that God placed her in our lives for a reason and I am thankful that we were the chosen ones for her.

Sydney is doing great. She is growing, maturing into a lovely little girl and is the absolute best big sister that Zachary and Makenna could ever ask for. Zachary remains very close in her thoughts, as a matter of fact she has written him a letter that we are to send off by balloon delivery after school. She loves school, her friends, all church activities and continues to become an accomplished little dancer. She has officially read her first book by herself to her classmates, has lost four teeth, with 2 more loose, is learning to tell time and continues to make her Mommy and Daddy so very proud. She is looking forward to branching out into music lessons and joining a swim team for the summer. She is growing so incredibly fast, we tease her that we want to put a book on her head to stop her from growing. She laughs and quickly lets us know that it won’t work. She loves being Makenna’s big sister. She reads to her, sings to her and has even been known to rock her to sleep. It is a treat to watch them share their love for each other.

Max is the doting daddy, loving all his moments with his little girls. He is amazing and as I watch him love his children, the love that I have for him only grows deeper. He is the best daddy, husband and man that I know. He continues to stay busy with work, bible study, being a deacon and is on the Pastoral nominating committee at church. He is looking forward to summertime and the enjoyment of family fun time outside.

I am doing well. I do not think I could possibly share the depths of my love that has been re-awakened by the birth of Makenna. I'm not even sure where to start wrapping my arms around my feelings that I am having lately. When you watch your baby fight for his life and do it with such incredible strength and grace, then in the end lose his battle here on earth, as his mom he took a big piece of my heart. Today, my heart still broken also has another chapter where life is new and love is great. I thoroughly love every moment with my girls. I find myself taking each moment in, the minutes turn into hours and then the day is gone. I am fearful of losing another one of my children again and sometimes that fear is overwhelming, on the outside I try to be a cool cucumber on the inside my stomach is turning and my nerves are like a ball of untwined yarn. So I live in each moment completely joyful and completely fearful. When the day comes to an end, I thank God for our gifts in life and the loved ones that we walk our journey with.

Life is so short and if you take anything from our journey I pray that you take how precious life is and how important it is to take every moment as it may be your last. Love like there is no tomorrow!

Before I close I would like to ask for your prayers as Max's uncle, whom we all loved so very much, has passed -away and our heart breaks for the journey his wife and children will be taking without their loved one.

Until we are together again may God continue to bless you and yours!

To my precious Zachary:

Sweetheart, we love you and miss you greatly. We continue to hear special stories of the many ways in which you continue to touch people's lives. You made a difference in this world and you inspire me to do the same. Until we are together again you will always hold a large piece of my heart.

My love always,
Mommy

Thursday, January 18, 2007 11:21 AM CST

If there was ever a doubt in your mind, then let me be the one to remind you that God is good.

On January 8, 2007 at 4:58 pm our hearts were expanded with love for a beautiful baby girl. We proudly named her Makenna Sine. Makenna is an American name meaning friendly and Sine is Irish meaning God’s gift. When Sine is spoken the Si sounds like “Sh” and the e sounds like an “a”. So far in her tender days with us her name could not fit her better or give more meaning to us than it does.

For those of you who like all the details, she arrived safely by cesarean section, and weighed 8 pounds 1 ½ ounces and is 20.5 inches long. So far she appears completely healthy and coming from one proud mommy… she is just perfect!

Our house is buzzing with emotions of the joy that we feel for our newly blessed arrival and for the longing of her big brother and Papa to be present with us. There are so many moments in a day that the gift of life can trigger the longing for those no longer present.

Makenna is a complete mixture of Sydney and Zachary. She has Sydney’s eyes and yet she has the depth to her eyes that Zachary had. She watches you and catches your stare and then takes you into another world of wonder. She is very expressive to only be 10 days old, so like the other two blessings in our life she is much older than that of her earthly days. She has Zachary and Sydney’s nose and she has Zachary’s coloring. My, what a proud family we are.

Max, Nana and I are all doing well and enjoying all the cuddling moments with our little cuddle bug. She has brought much happiness to each of us. There are moments of complete fear on my part, as I watch her and pray with everything that I am that her life with us will be long and that she will not be affected by HLH. So as I watch and I pray I am also forever grateful for the opportunity to parent such a special child. Max is beside himself with love for his new little girl, if men could have a glow then he is glowing. He is one proud Daddio. Nana, well, she is in her element and loving every moment with her grandchildren. I could not do all of this without the love of Max and my Mom, so to both of them, thank you for all that you do and the love that you share with each of us!

Sydney’s world is a much happier place now, speaking from the mouth of a babe, “I am glad she is here because now I do not feel lonely and I have someone to share my things with.” We also asked her how much she loves her new sister and she said, “that would be hard to answer because I love her so very much!” I think she expressed herself beautifully, and truthfully, you can see how much she loves her just by looking at the two of them together. Sydney is so tender and so thoughtful and she also feels a longing for her baby brother, which was expressed by her pulling out her photo album to share it with Makenna and to show her pictures of their brother. I must say, that for me was a teary and proud moment.

As the German house is a flutter with our blessings we are continually thankful to each of you who check in on us and leave such touching entries. I am forever grateful for your thoughtfulness and your prayers. Please continue to keep our family in your prayers, as we will be doing further testing on baby girl later in February and it will be an emotional time as we await all of the test results.

Makenna will be baptized this Sunday at our wonderful church and it is a day that we are all looking forward to!

So as our days move forward, may God continue to bless you and yours as He continues to bless us!

Thursday, December 21, 2006

Christmas In Heaven

I see the countless Christmas trees around the world below

With tiny lights like heaven’s stars reflecting on the snow.

The sight is so spectacular with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear

but the sounds of music can't compare with the Christmas Choir up

here.

I have no words to tell you of the joy their voices bring

For it is beyond description to hear the angels sing.

I know how much you miss me, I see the pain inside your heart

although I'll be with Jesus Christ we'll never be far a part.

I can't tell you of the splendor or the peace here in this place.

Can you imagine Christmas with our Savior face to face?

I'll ask him to lift your spirit as I tell him of your love

So then pray for one another as you lift your eyes above.

Please let your hearts be joyful and let your spirit sing

For I am spending Christmas in heaven and I'm walking with the

King.

-Wanda Bencke

Wishing each of you a blessed Holiday season... as we embrace the moments of those that are with us and we hold close the memories of those who have passed. May God continue to bless each of you during this glorious season.

Friday, November 3, 2006

This is an update that some of you will be shocked by, others have been waiting for and I have been deciding when to share. So prepare yourself, with a nice cup of coffee, some tissues and your memories.

Let me begin by sharing my feelings regarding what the month of October holds for us. It has become a month of reflection. It is the month at the young age of 2 ½ months Zachary became ill. The month that we were transferred from hospital to hospital unknowing what our future would hold and what our baby was encountering in his tiny little body. It is a month where we as a family were faced with one of the most incredible challenges a family could face…a life threatening disease that would change the world as we knew it. The month where we were thrusted into the world of medical science, when Zachary started chemotherapy and when we would learn the depths of his challenges and needs.

Then October became the month Zachary was readmitted into the hospital in 2004. I remember feeling the need to skip that month, to pass it by as though it didn't exist. Then as we entered it I couldn't wait until we were past it, as though I wished those days away. I remember fearing what could happen in the dreaded month of October, praying that we would make it through as though it had all the control. Then as we entered the end of the month and when Zachary was readmitted it became another feared day in the month, another time where I wanted to scoop my baby up in my arms and take him to a far away place where October didn't exist, pain was not present and life together was forever. If only that place existed…

I share these feelings with you because I want to share what I have learned from wanting time to pass me by and from fearing things that are truly out of my control. You see at the time I only wanted to keep my baby with me in my arms, safe, comfortable and loved by his mommy that cherished his every movement. Little did I know at the time that I was wishing my moments away, that I had November to handle next. The month that Zachary was diagnosed with heart issues, a secondary form of HLH and many many other obstacles. The month where he took his last breath, was taken from my arms and the last time I saw his smile and his big beautiful eyes. The month that a portion of my heart forever became broken.

Zachary has now been gone from his earthly existence longer than he was with us. This deeply saddens me because I miss him greatly and I think of him constantly. If only I could have that time back, the month that I feared. His time here was definitely short but his mark that was left on many of us was profound and I for one am so very grateful for the opportunities that we had together.

I have learned that regardless of what we have encountered in our lives that our experiences are ours to cherish, to learn from and to embrace. I have learned that no matter how hard the memories, they are there for a reason. I now look at October as my time of reflection, my time to remember all that took place and how it brought wonderful people into our lives, brought us closer as a family and taught us to cherish every single moment, every breath, every smile and every tear. It is no longer a month that I encompass with fear but it is a month that I embrace with memories.

For those difficult times that we all have, difficult memories and times of year. Remember that they are our memories, they are what help us to grow, to scrapbook a piece of our past. Enjoy your time with your loved ones, every laugh, every memory and again every tear!

Okay now it is time to take a deep breath, refill that cup of coffee and prepare for an update, it won't be long but I promise it will be news worthy!

The last time I journaled I wrote about hope and how our family has hope for our future. As we embark on the upcoming year and we look towards our future we are happy to say that we will be doing so with a precious new addition to our family. Yes, you read right we are expecting our third child and we are elated. If our excitement could fill balloons, well we would paint the sky with an array of color.

Let me preface all of this by saying that this little one will in no way replace Zachary, but will be a wonderful addition to our family who we will treasure with all that we are!

At this time I am currently 30 weeks and doing great. I am cherishing every moment, backache, kick, movement and exhaustion. This little one already has a spunky little personality that is going to just lift our spirits even higher. I am being monitored very closely by my regular OB doctor as well as a high risk OB doctor which includes monthly ultrasounds.

I am sure you are wondering about her risk as it relates to what Zachary encountered. Well she has been tested, I had an amniocentesis at 26 weeks. First of all we found out we will be blessed with another little girl. Which means Max is going to be out numbered in the house and surrounded by pink and frills… he is thrilled and cannot wait for the many more daddy daughter moments together. Genetically she does not have the exact mutations that Zachary had that caused his disease. Although this does not exclude her from risk because she does have part of the mutations that he had. We have been in contact with specialist from all over the world and at this time they are unsure of how she will present. If she will be affected by HLH or if she will live a completely normal life disease free. So as we did when we were considering to have our own children or to adopt children, we placed it in God’s hands and believed that we would know what direction we were meant to take. When I became pregnant, it seemed to be a pretty clear sign to us. So as we await her arrival and we pray for her health and long life with us. We place her as we have our lives and the lives of our children in God’s hands. As I have stated before I cannot imagine a better place to be.

We are all thrilled with the opportunity to be blessed with the gift of a new life in our family. Sydney, well I do not think I can even begin to express in words her excitement of having a baby sister. She is counting down the holidays for the time when she will arrive. She wonders, as we all do what it would be like if Zachary were here and what he would think of being a big brother. When we talk, I tell her a story about how I believe that Zachary and Papa personally picked this little girl to be placed in our lives… special from head to toe. She already has a little personality, as she loves music, likes her space and already holds such a special place in our hearts. She moves a lot and has actually kicked Sydney in the head on occasion when she is lying on my stomach and talking to her. It is fun and we are enjoying each moment.

Max and I feel like the luckiest parents ever. We have a lovely little girl who exhibits more love and personality than any child I have ever witnessed. Then we were blessed with our precious little boy, now our guardian angel, who taught us strength and to cherish every moment. Now God has chosen us to be the parents of another little girl and well how can you properly show your appreciation to the one who has blessed us with so very many blessings in our lives. We are eternally thankful and we greatly appreciate our gifts.

As there is much news to report over the next few months I will try to update more often, but until then love with all you are because well, we do not know what tomorrow holds!

Your prayers for our continued journey of life and the safe and healthly arrival of our sweet little girl are greatly appreciated!

May God Bless you and yours as He continues to bless us!

To my precious Zachary:

Keeping you always close to my heart, I love you, I miss you and I cherish you.

Thank you sweetheart for your every moment!

All my love through eternity,

Mommy

Thursday, September 7, 2006 7:53 PM CDT

Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.
Proverbs 13:12

It has been too long¡K too long since I have allowed my fingers to express my heart to each of you and open the door to the activities and the life that we are embarking on without our precious little boy here on earth with us.

Where to begin is the trick, I believe I will start off by saying how thankful we are to each of you who genuinely continue to care and follow our family even though there has been a delay in my postings; I know your heart and your thoughts remain with us! I am deeply touched, humbled and forever grateful.

It has been a rewarding year for our family in many ways¡K our hope continues to be restored. Our love for each other and for Zachary remains as strong as it has ever been. Our faith continues to be nourished by our Heavenly Father while constantly feeling the cradling of his loving arms around us. We are fortunate to be blessed with the life that we have been given and I look back daily on what our past has held and I am so very thankful for that and what our future will hold. Our eyes have been open to the importance of the little things and to be thankful and not let them pass us by, smelling the flowers, time with loved ones, memories of the past and hope for the future.

As many of you may have seen we did make contact by mail with Zachary¡¦s Angel Donor, Mr. Timothy Geiger. He was generous enough to sign the guestbook and share his story with all of us. Unfortunately, I have not contacted him personally; there is something about all of this that is definitely a process. I guess I will know when the time is right. Speaking in person makes all of this even more final. You see when I envisioned meeting this generous man and his family, it was going to be with Zachary in my arms and Max and Sydney by my side. I was looking forward to the moment when Zachary would be able to share one of his remarkable little hugs with the man that shared his life and tell him thank you for himself! So until I am ready to let yet another dream and wish of the future with Zachary rest, I guess it will be a little longer until I am able to make that contact in person. Until that time, Mr. Geiger please know that you, dear man, are treasured in our family and as we preserve our memories from our past and prepare for the memories of our future we do look forward to meeting and talking with you when the time is right. For those of you who feel this should be done sooner than later¡Kplease do not judge me until you have walked time in my shoes and felt the loss of one of the most precious gifts a parent could be given. In time all good things will happen, in time¡K

This summer held many fun and exciting moments for our family. Sydney had a week of dance camp, studying ballet, jazz and tap. She was sad when it was done, but in typical Sydney fashion she was ready to move on to the next activity. I taught art class during vacation bible school while Sydney enjoyed the lessons, music and most of the social aspect of the time at church. We then decided it was time to get her ready for our summer trip which meant swim lessons to achieve a greater sense of comfort while swimming¡K she is like that little mermaid, she longs to be in the water. I definitely see swim team in our near future. Then it was off to the beach in Florida for a week, where we enjoyed time with each other as well as time with our family from Alabama. It was a great trip and we were all sad to get back to the reality of work, school and for us a few minor house repairs. In a nutshell that was our summer. Now I will try to bring you up to speed on our present activities, emotions and maybe even a few desires.

Max is doing well and continues to be the man that I love more than words could ever fully express. He is busier than ever with work, when he isn¡¦t at work he is at home on the computer working and yet he still finds time to be at the important activities of us all. I am impressed. He will begin Bible study fellowship next week, he continues the many activities with the Shrine, assisting me in teaching pre-k Sunday School, golfing with close friends when he can squeeze it in, and last but not least he continues to enjoy his role as deacon in our church. Suffice it to say his schedule is busy and yet he continues to make it home with a smile on his face and more love in his heart that a woman or parent could dream of. Today is also Max¡¦s birthday, I will not divulge how old he is, but I will say he older than meƒº! Happy birthday sweetheart, may all your dreams come true!

Sydney, well she is growing up before our eyes and sometimes it even seems like overnight. She started Kindergarten this week and as proud as I am of her, I sure do feel a tug at my heart as I watch her growing up so quickly. She is so very brave and was extremely ready for school to start and the independence that Kindergarten offers her. After the first day she expressed the need to ride the bus which I reluctantly allowed. She said she was fine and knew exactly what she needed to do. When she came home yesterday I was curious what her desire was to ride the bus and she informed me that it is a time when she can meet new friends other that those that are in her class. This is our daughter the active social butterfly. She will start up the fall season of dance next week and then will start a children¡¦s bible study session the following week. She has moments still where her longing to have Zachary by her side creeps in. As we sat in church two weeks ago and were singing, I looked over and Sydney was crying. She said she missed Zachary and she needed him by her side. So while the congregation sang, we sat and talked about their love, shared tears and how he would want her to be happy and that he will always watch over. It is times like these that my heart breaks for her, it is hard for an adult to understand all of the emotions that go along with loss and as a child, well, I cannot begin to imagine. I pray her peace comes from the love that they shared and the blessings that are bestowed on her from above.

As for myself I am embarking on unknown territory and I must say it is nice. With Max at work and Sydney now back in school I am home with my thoughts. Last year at this time being alone in the house was unbearable; the silence that seeped through the walls would bring be discomfort in my own skin. Now as everyone leaves to journey through their days, well I am enjoying my own alone time and journey. I have found comfort in the peace of the house during the morning hours which used to send me off on long drives or to the cemetery. My hope for our future is plentiful and I have all of this because I have Daddy and Zachary constantly supporting me from above and God graciously giving me the strength to endure. My time is spent with supporting my husband and daughter, continuing to work from home and teaching Sunday school classes. I will begin assisting with Sydney¡¦s Bible study when that starts and I plan to get back on track with my exercise routine after I get over a lingering chest cold that seems to enjoy the home it has found within the walls of my chest. As for the time when everyone is gone, I am enjoying getting caught up on long passed emails which I have neglected, journaling my thoughts, supporting those who are taking similar journeys that we have taken, organizing our pictures and beginning on the books that I have been working on (which I put to rest while Sydney was out of school for the summer). Over all, I am great, I am happy, I am hopeful and most of all I am thankful!

A quick update on baby Bryant, which I have asked you to pray about in the past; prayers are amazing and work in many ways, for this little one it helped his body to heal and he is now home, walking and talking. Thank you for your prayers for him and please continue to pray for complete healing for this special little boy and all the others who are afflicted with illness or loss.

For each of you my hope is that you take moments with your love ones and cherish them, that you find peace in your day and hope in your tomorrow.

I will try to be better about journaling and I look forward to sharing more news about our family within the next month or so. Until then, may God Bless you and yours as he continues to bless us!

This is a poem that was given to me by my Mom which I cherish and I wanted to share it with each of you as it speaks of how I feel about my ¡§Precious Zachary¡¨.

His Smile

Though his smile is gone forever, and
His hand I cannot touch,
I still have so many memories of the one
I loved so much.
His memory is my keepsake with which
I¡¦ll never part.
God has him in His keeping,
I have him in my heart.
Sadly missed but
never forgotten.

Zachary,

Forever my sweet you will hold heart!
I miss you greatly and I love you much,

Mommy

Saturday, February 25, 2006 8:34 PM CST

It is through time that we find ourselves, our strength, our love, our determination, and what our evolving future may hold. Time is an essential quality in which we can often take for granted. This is a gift that we have been given with the medical struggles and losses we have encountered. As a family we know how very precious our time is together and we know that we do not hold the clock for our future. So, we cherish our moments that we have shared with our loved ones and the time that we have together today. God has gifted us with life, family and the ability to love eternally. What wonderful gifts we have been given.

I know it has been a long time since I last journaled, I see the ticker at the bottom of the website turning daily, so I know many people continue to check in and for that I am forever grateful for your love, dedication and concern for our family. I love going into the guestbook (which I do on a daily basis) and seeing the entries from all the wonderful people that have followed Zachary through his journey and beyond. You have touched our hearts and will remain a very important part of our lives…even if it is only through the guestbook that we know you.

The last time I journaled we were taking a trip as a family. We embarked on a trip to New York City and it was an absolutely incredible time. We chose NYC because Sydney speaks of it often and when she plays she pretends to take her babies and friends to New York. We had a wonderful time: sight seeing, shopping and taking in the entirety of a city that has experienced its own life traumas.

Max is doing well. He continues to enjoy his job which keeps him extremely busy. He has taken to his new role as Deacon quite well… but I am slightly biased. His Bible study classes are a faith journey that he is enjoying. He has started taking spin classes at the gym (for those of you who are not aware of what this is, it is a cycling class held in a gym forum that is quite challenging). He is enjoying the class setting and I am enjoying the health benefit for him. All in all, Max is doing well and continues to be the most wonderful father and loving husband a family could ask for.

Sydney continues to be the most precious, loving, courageous, vibrant and emotional little girl that a parent could dream of. As I watch her growing and I see her face life, I am in awe at what an incredible child she is. She has experienced so much loss in her short life and yet she smiles, she laughs, she dances and she sings. If you can’t tell I am extremely proud to be her mommy and I am thankful that she is with us. She is also very active; she is still in preschool, which she absolutely loves, she continues to take dance classes which focus on ballet and tap. She just finished taking swim classes which went well, she is like a little blonde fish, or if you were to ask her she’s a “mermaid” in the water. She will begin soccer next month which she has been looking forward to for a year now. Ashes, her puppy, is her best little buddy and offers her so much joy. These two have a very special connection and he came into our life at the perfect time. Sydney continues to talk about Zachary and how much she misses him. In her silence you can often see her mind drifting back in time to the days when there was a little bundle next to her to smile and play with. When you ask her what she is thinking about she will say, “Playing with my baby”. She has struggled lately with worrying that she is forgetting him and worrying that in heaven he will grow up and forget about her. When we talk, we talk about their love for one another and when you love someone that much you won’t ever forget. This puts a smile on her face and peace in her heart, because she knows how deep her love is for her baby and she knows that he loved her that much also. She often prays and asks God to watch over her baby, Papa, and Kiska for her. They are the sweetest prayers and as I listen I picture God looking down on her with a smile on His face.

If time heals all wounds, my wounds should be scabs, but it is amazing how a smell, a song, a moment can open those wounds to feel as fresh as the moment they entered your body, or soul when you speak of loss. This is how I am doing: just when I think I have moved forward and things are good, something happens and throws me right back to the moments of my loss. I read something the other day which has stayed with me: “When you lose a parent, you lose your past. When you lose a spouse, you lose your present. When you lose a child, you lose your future.” This rang so true to me, although I have not lost my future, I have lost a future with Zachary and what he would have become, how he would have protected and drove his sister crazy on occasion… all the things that parents look forward to with their children. On a daily basis, I am doing great. I stay busy with taking Sydney to her many activities, working, teaching Sunday school classes, being there for other parents that are taking similar journeys. I have also sat with a patient on transplant a few times when his parents were unable to be there. Sydney and I are working on a few children’s books that focus on dealing with the illness of a sibling as well as a book that will be focused on the loss of a sibling. It is something that I feel is needed and it will also honor Sydney’s spirit and Zachary’s memory. I have started going to the gym on a regular basis and it has been a wonderful outlet. I look forward to what the future holds, but right now I am enjoying time with my family and what the present offers us.

The last time I journaled I had mentioned making contact with Zachary’s donor. This has not been done as of yet, but I am in hopes that it will be done before March 31st, which will mark the 2nd anniversary of Zachary’s transplant day. We continue to keep this wonderful man in our prayers and we are thankful for his incredible gift. I will keep you informed when this takes place.

There are just a few things that I would like to tell you about. I had mentioned a precious little boy named Bryant that had gone through transplant for HLH. Well, he has encountered some hurdles and is in desperate need of your prayers. Please pray that his body will overcome all the challenges that it is faced with. When children and adults are faced with these challenges and have gone through transplant they require a lot of supportive care. One of the ways that we can help others is by blood and platelet donations. If you are able to donate, please consider the many lives that you are touching by donating your blood and platelets. The blood banks are at an all time low right now. Thank you for your prayers and giving of yourself in order to help someone in need.

I thank you again for your love, for heartfelt entries, your prayers and most of all for taking the time to touch our life.

May God bless you and yours as he continues to bless us!

To my precious Zachary,

On this earth you were guided by grace, you were gifted by God. You, my sweet, touched our lives and you hold our hearts.

All my love my sweet until we are together again. You are forever present in my heart.

Sweet kisses,
Mommy

Tuesday, November 8, 2005

It seems like an eternity since I last revealed the depths of my heart and soul to all of our devoted friends and family. I simply have struggled with knowing exactly what to write…do I inform of our encounters, our daily activities, and life as we live without our precious little boy. Then as I have gone through my week and my thoughts relate back to this time last year it became very clear to me what I was to write about.

I will write about peace, which by definition means “a state of tranquility or quiet.” Although my heart was shattered to pieces a year ago next week, the pain that used to be so intense that I felt like moving forward would break me, now my heart still shattered has a blanket of peace over it that protects and gives me strength to move forward to the future. As a family we are all finding peace in our own ways but at the end of the day we come together as a family with love, faith, strength and determination that our future holds many promises.

I would like the opportunity to address a few questions and concerns that I have been asked since Zachary’s birthday. When Zachary passed away our life was changed forever, with that other lives changed as well. Some became closer to us and others further away. As I have spoke to a variety of friends and family I have been asked what is comfortable for us to talk about? How do we and others need support from those who care when they have endured such a tremendous loss? My answer is simple, be genuine in your concern, on those holidays, birthdays, anniversaries of marriage, death, etc… send cards and special thoughts to the family, a phone call just saying you are thinking of them. If you feel the need to do more, make a donation in their loved ones name and inform the family with a card, buy a gift and give to someone that would resemble the families loved one. For us personally, we are happy to speak of Zachary, he brought us joy and taught us what life was about, he is why we are who we are today. I hope this eases the discomfort that some feel when it comes to talking with others after a loss and knowing what they may need. It also never hurts to simply ask them how you can be there for them…this to me shows you are sensitive to their feelings!

As a family of four, with one angelically watching over, we are doing well. We are taking Living Well classes at the hospital that focuses on living as a family after the loss of a loved one. It has been a great class that offers something different for each of us. We have immersed ourselves in our church. We have had a lot of quality time with great friends and family. Life is good, it is hard, but we know it will only get better!

Max continues to stay extremely busy with his work and enjoys all the wonderful people that he works with. He is active in his bible study classes, the Shriners, golfing with friends and supporting his family. I am happy and very proud to announce that last weekend Max was ordained as a Deacon in our church. This position holds a lot of responsibility and also offers a great amount of growth within the church. If you can’t tell, I am very proud of him and I love him very much!

Sydney continues to be my little cuddle bug that has a heart of gold. I could not be more proud of her. She enjoys school and has added to her list of friends…the numerous weekly birthday parties are a testament to this. She is currently taking dance classes that focus on ballet, tap and jazz; she is active in church activities; she has taken a few private Spanish classes and is growing by leaps and bounds. She is becoming such a beautiful little girl inside and out. She has a sweet comical side that is quite endearing and continues to express her emotions through her songs. She talks of Zachary often and how she will always be his Big Sister. This week has been especially challenging for her as she speaks of how very much she misses him and based upon Halloween passing she remembers that her baby became an Angel soon after Halloween. She anticipates the sadness that she felt from her loss last year.

As for myself I am doing quite well. I still have my moments of sadness and there is not a day that goes by that I do not think of Zachary and all the wonderful love, lessons of life and cherished memories that he surrounded us with. But I am feeling more peaceful about where we are today and where we have come from. I must say this week has been more challenging. I feel as though I am reliving those last days together over and over in my mind. I miss that little boy and yet I do have peace in knowing that he walks the streets of heaven with God and is free from all the pain and struggles that he had here on Earth. He was delivered to us as an Angel for a short time and then became our Guardian Angel to watch over us and others who endure the difficulties in life which he faced. I continue to work part-time from home, I am teaching Sunday school classes and I stay busy being there for other parents who are going through similar challenges. Life has taken me on a journey that I would not have ever expected, but I will always be grateful to God for choosing our family to be touched by Zachary’s presence as well as teaching us how important it is to treasure each day we have together. We were gifted!

We have not yet contacted Zachary’s Angel Donor but I expect it to happen soon. I look forward to thanking this man for his generous unconditional gift at life and memories. We will keep you updated.

I know many of you are wondering about all of the testing that we had done to determine the nature of Zachary’s illness. The main question for us was, is it genetic or not? Well, we have our answers and Zachary’s disease has been confirmed as genetic. Max and I are both carriers. We are all imperfect in our genetic make-up, we just happen to know where our imperfection lie. You are probably wondering why I am sharing this; well first of all I have nothing to hide. Secondly, I want you to know that answers can be found if you are persistent and continue to seek for the answers. This does not change our future as a family, we are more informed as parents and we have placed our fate in God’s hands and I cannot imagine a better place to be.

As we approach the date of Zachary’s departure of this world and his arrival to eternal life we ask that you pray for strength for our family and peace that overcomes all. We are planning on taking a short trip next week to spend some time away as a family, as well as allowing Sydney to see new areas of the country that surrounds us.

Zachary’s memory will forever live through the examples that he set and the lives that he touched through his journey. Thank you all for continuing our journey with us… we love you and are grateful to you!

I do have one prayer request to ask of all of Zachary’s dedicated prayer warriors. There is a little boy that has recently gone through transplant for HLH. His name is Bryant and he is as sweet as they come. I have been in contact with the family since he was diagnosed. He is doing pretty well but he is battling some GVH (graft versus host disease). Please pray for strength for him and his family. Pray for complete healing for this little one who has had to endure so much already in his short life. I will keep you updated on how he is doing.

May God continue to bless you and yours as He continues to bless us!

To our precious Zachary:

Sweetheart your earthly presence is missed greatly by many and I for one miss you more than words could ever properly show. Your love, your gracious peaceful touch and that beautiful smile continues to warm my heart as I reflect back on our time together.

I am sure that Papa will prepare a wonderful eternal life birthday for you. Give each other hugs from all of us to remind you of all the love that we have for you both.

My love for you my little one is eternal and that brings a peace that is unbreakable!

Until we are together again your embrace is forever present in my heart.

Forever my sweet!

Mommy

Wednesday, July 20, 2005 11:28 PM CDT

As I sit down to write on the eve of Zachary’s 2nd birthday the song from the show “Annie” continues to enter my head. The verse that I continue hear is…

The sun will come out tomorrow bet your bottom dollar that tomorrow there’ll be sun. Tomorrow, tomorrow I’ll love ya tomorrow, if only a day away…

This seems fitting considering what our emotions have been going through as we approach tomorrow. As Zachary brought a ray of sunshine into our lives and continues to do so, I believe the song that enters my mind is a reflection of his memory and a reminder that the sun will come out and his light will continue to shine through in our lives to the end of time. No matter how dark the day may be at times from the grief that is natural to endure a smile fills our faces as we speak of the precious little spirit that we were blessed with.

There is not a moment that goes by that I do not think of Zachary and what we would be doing as a family. I know I am not alone in my thoughts as Sydney and Max share the same emotions and thoughts as they enter into their daily activities without him. Life for us will not ever be the same. We feel a terrible loss and a void in our once family of four that would happily sit around the table at mealtime and share smiles, laughs and cheerios. But the memories are forever vivid in our mind, hearts and body and we would not trade the time we had together for anything. We know as a family that what we were chosen for with Zachary was life changing, eye opening, and a gift. We are thankful for our time.

Many things have taken place since I last journaled, I will do my best to bring everyone up to speed.

First of all, I want to share the losses that we have experienced over the past 2 weeks. We have been challenged with two more deaths of people that were very close to our hearts. In the early part of the month our very dear, kind neighbor, Mr. Bill, passed away. He was a true gentleman in every since of the word that was a grand support for our family during Zachary’s illness. We all cherished his friendship and his genuine spirit. He is greatly missed by our family. Max also lost his paternal grandmother last week. She was a dear lady… as sweet as they come. As Zachary was sick and after he passed she sent cards of support and her words touched me deeply. They will forever be cherished. Max spent time in Utah this past weekend to be involved in the funeral and offer his support and condolences during another time of loss for our family.

Max is doing pretty well. He stays busy with work and continues to be engaged by his job and all of the wonderful supportive people that he works with. He has had the summer off from his bible study classes. He continues to stay busy and active with his Shrine unit. He has also had some fun time as Sydney and I sent him to the US Open for Father’s Day. He plays golf with a group of friends once a month, which he thoroughly
enjoys. He continues to wrap his loving arms of support around Sydney and myself and we are truly lucky to have him in our lives.

I could write a book on all that we experience with our blue eyed, curly blonde haired, little sparkle. Sydney continues to be a bright shining star in our days. She has had an extremely busy summer as she has been involved in Tumble Tunes (a tumbling/music combination class), art class, private swim lessons (which I highly recommend) and now summer Bible camp. She is a natural little swimmer and I love watching her in the water as she learns each new stroke. I see swim meets in our future. She gleams as she sings all of the new bible songs that she is learning. She is like a sponge as she soaks everything up that she learns. Sydney continues to struggle with the loss of Zachary at times and the continued loss of loved ones makes the challenges of healing more difficult. Her challenge this week has been that she does not have her baby brother here with her to celebrate his birthday and that she misses seeing her Papa. As she informed my Mom, “I just really miss my Papa and Zachary; I know they are in my heart...but I really want to be able to see them.” This continues to be a challenge to explain, because in all reality wouldn’t we all like to see them. Her imagination continues to blossom and her maturity exceeds her years. Max and I love her with all that we are and are extremely grateful for her smiles, her love, and her unwavering gifts of life.

I am doing pretty well considering all that has been happening lately. The sermon that was spoke in church this past Sunday was on feeling discouraged. This is how I feel at times and then I press on, knowing that this is what my dad and Zachary would want. I have been blessed with a life to live and that is what I am going to do. I have been busy with yard work which has been a great way to get through the days at times. Most of my time lately is spent taking Sydney from one activity to another. It is amazing how much time in a day that takes. I continue to work from home, exercise at the gym, and research all of the information that continues to come available to us in regard to Zachary’s disease.

As a family we became official members of our church. We were all baptized on July 3rd, which was also our 12th wedding anniversary. It was a very special day and it was also a sad day as we missed having Zachary share in this moment with us. Zachary was actually baptized when he first got sick in the hospital because of the severity of the onset of his disease. We also had a July celebration of all of the events that our family has in July: our anniversary, 4th of July, Sydney’s Big-Sister Day, and Zachary’s birthday. It was a great time of food, drinks, games, pool time, and memories with wonderful supportive friends and family. My Mom topped the night for me as she surprised us by showing up at the party and staying with me for the week while Max was gone, and knowing how challenging this week would be without Zachary.

Thanks, Mom, for being there to support me during what only a mom who has shared the same losses would know what I am going through. I love you very, very much!

I want to thank each and every one of you who shared your memories with us about Zachary. They brought tears to our eyes and smiles to our faces as we remembered some of your memories along with ours. Your continued love, support and prayers are a cherished blessing and you remain close to our hearts.

For all of you who may be wondering, my uncle did donate his bone marrow and the procedure went relatively well. He has given a woman a second chance at life. I can’t imagine a greater gift to give.

We also have received the information on Zachary’s “Angel Donor”. We will contact this wonderful man when the time is right. But I do look forward to personally thanking him for the gift that he gave. God Bless him! I will let you know more as we know more.

Our Sweet Zachary,

As you approach your second birthday I pray that you know how much we love you and how much you touched our lives. I have no doubt that you will have a glorious celebration with God, Papa, and all of our friends and family who are with you. I hope you are enjoying your heavenly life and that your birthday cake is full of the sweetness that your life provided us.

We will celebrate your birthday by having cheerios together for breakfast, sending handprint cards attached to balloons with a special message for you and cherishing your loving memories. The day will be filled with your memories and the celebration of your life with us.

I miss you, little sunshine, and I look forward to the day that I see those glowing eyes and bright smiles again.

All my love sweetheart,

Happy Birthday!
Mommy

A Place Where Children Are

What Kind of place would Heaven be
With all its streets of gold,
If all the souls, that dwell up there,
Like yours and Mine, were old?
How strange would Heaven’s music sound
When harps begin to ring,
If children were not gathered ‘round
To help the angels sing.
The children that God sends us
Are only just a loan,
He knows we need their sunshine
To make a house a home.
We need the inspiration
Of a baby’s blessed smile.
He doesn’t say they’ve come to stay
Just lends them for awhile…
Sometimes it takes them years-
To do the work for which they’ve come.
Sometimes in just a month or two
Our Father calls them home.
I like to think some souls up there
Bare not one sinful scar. I love to think of Heaven
As a place where children are.

Author Unknown

May God Bless you and yours as He continues to bless us!

Wednesday, June 1, 2005 8:30 AM CDT

We want to wish you all a belated Happy Memorial Day. I hope you were surrounded by your loved ones and that you were able to share treasured memories from the past and make new memories to be shared in the future.

By Webster’s definition memorial is something that keeps remembrance alive.

We would like to share with each of you some of our treasured memories of Zachary.

*The day that Zachary was born, we were unaware of his gender, we believed in surprises. When he was born and Max was asked to reveal the sex of our new arrival to me, he paused in amazement that we had been blessed with a beautiful baby boy. The moment I looked into his eyes, he stole my heart. This is when our journey began.

*Zachary loved to cuddle from the day we brought him home. We would take afternoon naps where he would lay on my chest while we would sleep…each of us feeling the soothing heartbeat of the other.

*As he became ill, and we were unable to hold him to comfort him, it is then that his stuffed monkey became his comfort. At the young age of 3 months, Zachary was able to soothe himself with his monkey during some of the most trying times of his little life.

*Through all of the people that he encountered: doctors, nurses and medical technicians, he welcomed them into his world and was never fearful. I was always so amazed and so very proud of him as he handled his challenges so graciously.

*The day we walked off the elevators onto the transplant floor to be admitted, with Zachary in my arms, I felt my knees become weak from the fear that I felt of what we were embarking upon. Zachary entered through the double doors with a smile, greeting all the people that he would welcome into his heart.

*Transplant day, this was a day when I felt the presence of our Heavenly Father with us as we received Zachary’s new stem cells and the day when it opened my eyes to the kind spirit and the unconditional gift of a stranger, “Our angel Donor”.

*Tucking Zachary into bed was one of my favorite times of day with him, as I handed him his monkey, he would smile then tuck his little body around it and fall into a peaceful sleep. At one point during transplant, I was sitting on my bed while Zachary was in his crib taking his morning nap, I recall glancing over and seeing his little monkey sitting on his tummy rising and falling with every little breath he took. I remember wishing that I could freeze that moment in time, I wish that more now than ever.

*All the times during in-patient when everyone would gather in our room; morning noon and night to talk, to laugh, and to share stories. Zachary loved these interactions as much as we did, the more people the happier he was. All the people who opened their hearts and let our family in, became part of our extended family and we will forever treasure each of them for taking our journey with us.

*Watching the love between Max and Zachary when they were together as they formed a cherished father-son bond.

*Looking in my rear-view mirror as we made trips to the clinic and seeing Sydney and Zachary holding hands in the backseat while Sydney entertained Zachary by singing him her versions of different songs. The love that the two of them shared for one another was remarkable… it still is!

*The delight that Zachary would have in his eyes when Sydney would enter a room and the little happy squeals that he gave to get her attention, which she was always happy to do.

*I loved kissing the little creases in his neck and I did this from the day that he was born. As he got older he would turn his sweet little head from side to side to ensure that he received kisses on both sides of his little neck.

*The pats I would get on the back as I nursed and rocked him before bed. These were the same rhythmic movements that I got every night from him before he was born. I cherish his touch.

*Watching Zachary and his Nana play leapfrog basketball on his playmate and seeing the excitement in both of their faces as he made each basket with pride. He absolutely loved playtime with his Nana.

*Then we have the Cheerios memories. He loved his Cheerios and he was happy to share them with everyone. His eyes sparkled when he would see the Cheerios box come out.

*Zachary would often place his small little hands on my face to capture my full attention, and then he would give sweet little kisses while looking into my eyes.

*One of the last memories that I have of the smiles, laughter, and love that we shared was the Sunday afternoon before he passed away. We sat on my bed in the hospital room and Zachary played with a Kleenex box and delighted himself in pulling out each and every tissue until he had a mound of tissue that resembled a snow pile. He then placed the tissues on my head and on his head. We laughed and enjoyed each moment of our silliness. This went on for over an hour and I am so very thankful for this memory.

As I was writing this entry Sydney shared a few of her special memories of her baby Zachary that she wanted me to share with all of you:

*She loved to see him smile and to make him laugh.

*She loved it when she would place pieces of paper on her head and jump up and down until the paper would fall off and Zachary would laugh with the type of laughter that comes from his tummy.

*Playing peek-a-boo with Zachary and seeing him get excited at the anticipation of her shouting boo.

*She enjoyed the mornings when she was the first one in his room when he would wake up and he would smile because he was happy to see her.

*Most of all she said, “how very much I loved him!”

Some of Max’s memories include:

*Stacy’s pregnancy. Just like with Sydney, Stacy carries a glow and happiness when she is pregnant. The joy Stacy had being pregnant, and Sydney’s joy watching her Mommy’s tummy grow with her little brother.

*Driving home in August 2003 after having played in a golf tournament. I drove home on the interstate, windows down listening to rock & roll, excited that I was coming home to my children and wife. I felt the world was my oyster that day!

*The early morning of Zachary’s re-admittance to the Transplant Unit for what turned out to be GVH. It was about 2am and all the nurses, Stacy and I, and Dr. Chung, were standing around his crib looking at him. Like his daddy, Zachary was happiest when company was around. He enjoyed the interaction of others and the attention he received.

*Zachary loved to play on the floor at home. His favorite game was to roll to his toy castle and tip it over. He would aim for it with tenacity and then look for happy acknowledgement when it fell.

*Sharing kisses the night before he was admitted to Pediatric ICU and intubated.

*His head resting on my shoulder as he slept and hearing his little breaths. During these times I always prayed to God asking that he not take his breaths away.

*Touching his cheeks. Laying in his casket as is body was stiffening, there was a crease just beyond the left edge of his lips and his round cheek that maintained the soft feel. I touched it repeatedly fearing if I didn’t touch it one more time, I may forget how it felt. I haven’t forgotten.

*Holding him the night before he passed. He was calm, cuddly, and, I think, would have been content sleeping in my arms all night. Like he knew it would be our last time together.

*Bringing me closer to Jesus Christ.

The more time that passes from the time he left our arms and became our Heavenly Angel the more I cherish these memories. I fear that there will come a day when I will not be able to recall the way Zachary felt in my arms, the way his presence brought a calming over me that I had not ever felt, his smile warmed my heart, his laugh brought myself and others great joy and those eyes, they truly told a story…a story that was bigger than I could have ever imagined.

We would love for all of you to share some of your memories of Zachary in the guestbook with all of us: a time that you spent with him; or for those that followed us through the journal, please share an entry that touched you, a picture, or a thought. We will eventually print all of this for us to read and keep as a Memorial to Zachary and how he touched our lives and others.

Thank you one and all for the constant love and prayers that you shower over us. May God bless you and yours as he continues to bless us!

To our sweet Zachary,

We miss you more and more each day. Missing you is as much a part of our day as breathing. Thank you for the long-lasting memories that you gave us while you were with us. I look forward to the day when we will be together again, but until that day I will continue to remember the blessings you gave and enjoy our times in my dreams.
The tears that I shed for you are because of the deepness of the love that I feel for you.
Sweetheart you took part of my heart with you and we will forever remain as one.

I love you,
Mommy

Monday, April 18, 2005 10:24 PM CDT

The struggles that we endure in our life are overcome by the faith that we find through those struggles. My faith has become my rock… it is what gets me through the day when it seems so unbearable and it is what brings me closer to my precious little boy and my wonderful daddy. There is not a moment in my day that I do not think of Zachary and what we would be doing together, then I feel that overwhelming sadness that he is gone and my thoughts are merely that, only thoughts. Then I think to call my dad because he knew exactly what to say to make the pain more tolerable and it hits me that he is not there either. This is when I turn to prayer and I know that I do not walk this journey alone, although to be honest at times it is a lonely road to travel.

We are trying to get back into a routine, and it is a scary thought. Routine is the last thing that we could have over the past 1-½ years, we were taught to roll with the punches. Routine is what we need, but it is also what we fear. It is hard to put everything that you went through behind you and just go on as though it’s not there anymore… the doctor’s visit, hospital stays, isolation, numerous medicines, and the sweet sound of happiness from a sweet little boy.

Max continues to stay busy with work, bible study, fraternal obligations, and a little fun with his uncles in Bristol, TN for the races. I must admit I have also managed to keep him active with yard work.

Sydney is keeping me on my toes. She continues to engage me in deep conversation about her “baby” Zachary and why he had to leave us. She actually woke up last night and before she went back to sleep she asked me if her angels were still in her room with her. This gave me chills and then gave me comfort. With the beautiful weather that we have had lately she has been enjoying her play area that her daddy and grandpa B. built for her last year. I know we will get a lot of use out of it this year and I am thankful that she has it; and has her sweet little puppy, Ashes.

I am doing okay. I am going through the motions of the day and most the time I feel incredibly numb at all that has occurred. Since I last journaled I had a birthday. It was a difficult day as I remembered spending it with Zachary last year and the thought that I would not hear my daddy’s sweet voice on the other end of the phone singing me happy birthday which he did every year. I was surrounded by wonderful family and great friends to get me through the day, but for me it was a very sad day and I was happy to get past it. Max and Sydney treated me to a weekend away, by myself, to a resort area in Williamsburg, VA. This was a treat and I am so thankful for a thoughtful husband and loving family.

I also want to share with you something very special that will occur on May 5th, my generous uncle will be going into surgery to donate his bone marrow and stem cells for a lady in need. He registered after Zachary became ill and now will be giving that second chance at life. I am overwhelmed with appreciation for what he is doing; it, in some way, makes everything Zachary went through a little more tolerable. It also reminds me of the wonderful man that donated his stem cells to Zachary. We continue to be thankful to our Angel donor and pray that he is well and knows how special he is to our family. When you donate, you give a chance at more time, more memories, at life. Thanks to all that have registered to give of yourself to help another.

I have spoken with friends about wishing things were normal again and as I have put a lot of thought into this, and after reading another website, it opened my eyes and I have realized that this is our normal. I want to share a few thoughts with you that I have been thinking of for awhile in regards to what normal is for us:

Normal is waking up and wanting to walk into Zachary’s room and see those big blue eyes and smiling face and knowing that this cannot be.

Normal is going to Max’s work, taking the exit to the hospital and not realizing until Sydney hollered from the back seat to ask why we need to go to Zachary’s hospital; then having to explain that I took a wrong turn and knowing in my heart I wish I still had him to take.

Normal is seeing Sydney be as comfortable at the cemetery as other children are at the park, because here she can talk with Zachary.

Normal is wondering what to decorate Zachary’s plot with for the holidays and knowing it must be special because it is the only thing that I can get for him now.

Normal is feeling close to other Mom’s on the Internet who have lost children and sharing thoughts and feelings that previously I would not have discussed.

Normal is watching every Mom with a little boy on her hip and remembering how wonderful it felt and wishing that it were me, but it isn’t so why torture myself.

Normal is taking a deep breath every time someone asks how many children I have and not wanting to make them uncomfortable…but telling them that I have two, a four year old little girl and a little boy that recently passed away. I cannot ever say that he was not a part of our life because not mentioning him would be a slight to his memory, and he deserves so much better.

Normal is seeing the sadness in Sydney’s eyes as she watches others with siblings and knowing as a parent I cannot give her back the brother she has lost.

Normal is going through my day so that no one else realizes that my life is far from what others would consider normal.

Thank you for all of your support, your guestbook entries are a blessing and bring me much comfort. I pray that everyone is doing well and enjoying the springtime weather. Please be patient with that person who may seem difficult, you never know what they may be enduring in their life.

May God bless you and yours as he continues to bless us!

I was asked to post what we said at my Daddy’s funeral, below is what Max and I shared.

The Gary I Knew
By Max German
February 22, 2005

I had the honor of meeting Gary in 1987 at the age of 16 when I began courting his oldest daughter, Stacy. He accepted me immediately and without obvious reservations, despite some of my less than honorable intentions.

Over these past 18 years I grew close to Gary and, with a smile, I remember many of his traits. Please allow me to share, just a few of them, with you:
 He put salt, and I mean a lot of salt, on everything he ate;
 He never went to a garage sale where he couldn’t find the hidden treasure;
 The way he cleared his throat, especially after letting out one of his big, boisterous laughs;
 When he and Dianne would visit us in Virginia, there was never a morning wake-up without bagels, or McDonalds, or biscuits for everyone. Of course, he wouldn’t forget Dianne’s Diet Coke;
 And, he never met a stranger. And if that stranger wanted the shirt off Gary’s back, it would be given without question or judgment.
I also learned from Gary. I learned love for family, devotion to your employer, faith in my savior Jesus Christ, and the sweet sound of Johnny Cash.

In the end I grew to love him like a father. I will miss him, and I will speak of and remember him fondly!

Daddy’s Message
By Stacy German
February 22, 2005

Something many of you may not be aware of is that my Dad was very talented at writing poems, especially to his loved ones. I would like to share one with you that he wrote to my husband and myself after our precious Zachary earned his Angel Wings this past November.

For Our Precious Daughter & Son:
We know that you are hurting it’s hard to understand
Why God would pass others by and take your little man
We don’t have the wisdom or the knowledge to answer why
God would take your little man, to our home up in the sky
But rest assured you’ll see him, the pain you will endure
When you cross to the other side and reach that golden shore
We will have a glorious reunion when Jesus comes again
To take all the Christians home to be free from all the sin
There will be no more hurting, how wonderful it will be
To walk the streets with Jesus and precious Zachary
So get some rest this evening because you never know what day
When Jesus will come with a shout of glory and take us all away

Our Loss is Heaven’s gain and the world as we know it continues to feel the pain of the loss that we have been led to endure. My daddy, the man that I love and looked up to, became our Heavenly Guardian Angel.
He taught me what it meant to love unconditionally and to give of yourself to others because that is what life is all about. I watched him love and cherish my Mom with every inch of himself. He wrapped his loving arms of support and protection around his children over the years and adored each and every one of his grandchildren. My Dad was the one you could count on through the good times and the bad.

He had a smile that could fill a room, a laugh that was infectious, and a heart of gold. My Dad was and will always be my hero!

Daddy, I lived my life to make you proud and I couldn’t have been more blessed than to have been gifted with you as my father. Thank you for the love, the lessons of life, and the importance of family, music and, most of all, for teaching me the meaning and the depth of my spirituality.
I look forward to the day where we will have our glorious reunion and together hand in hand with Zachary in my arms we will share the beauty of our heavenly life.

In Memory:
God saw you getting tired
And a cure was not to be,
So he wrapped his loving arms around him
And whispered “Come with Me”
With tearful eyes we watched him suffer
And saw him fade away
Although we loved him dearly
We could not make him stay
A Golden heart stopped beating
Hard working hands to rest.
God broke our hearts to prove to us,
He only takes the best!

Author Unknown

Thursday, March 24, 2005 9:27 AM CST

It has been awhile since my last update and I am sorry to all of you who consistently check in to see how we are doing. Your support with prayers, cards, journal entries, calls, and love are greatly appreciated and do not go unnoticed. With the love of a wonderful family, supportive friends, God on our side, and many prayer warriors we will, as a family, again overcome this tragedy that we have been chosen to face.

I have spent 6 weeks out of the last 2 months in New Mexico where our family lives. It was only this past week that I returned home to Virginia to be with my loving husband. I spent my time in New Mexico being a support to my mom in whatever I could do to make life a little more tolerable for her. Life has taken me down many different roads over the past year and a half. I believe that the more time that passes the clearer my direction becomes. The more I learn about myself, what is important in life, and, most of all, the gifts that we are given as individuals. I have said many times that we cannot determine what our future holds and when it will be our time to pass, but I believe one of my lessons has been to realize how precious life is and to cherish every moment with my loved ones. I am thankful for the time that I had with my precious Zachary and that I was blessed to have the most wonderful daddy in the world. I would not change the moments that I shared with each of them for anything. My memories and the love we shared are what sustain me during this challenging time in our life.

This week last year Zachary was admitted onto the transplant floor for what was supposed to be the beginning of a new life. It was the beginning of a new life for a short time, but it was also the beginning of new friendships, fond memories that were shared, and laughter that brought peace to all of us. I am sad that I am not spending my days planning the one-year post-transplant party for my sweet little boy that we looked forward to sharing with everyone. Instead, we will celebrate the time that transplant gave us, the friendships that were made along the way, and the time that it allowed us. We celebrate the memories of a very special little boy that touched many lives and taught us what it felt like to love unconditionally from the depths of our heart. We will spend time with those who loved him and we will honor March 31st Transplant day by wearing the color “PURPLE” as we did last year. We would welcome each of you who have traveled this journey with us to do the same in memory of Zachary’s fight.

Max is doing well. He has had his ups and downs since the passing of Zachary and now dad. Max and daddy were very close and thought a lot of each other... this leaves a void that is hard to replace. He is continuing to stay busy with work, bible study, business trips, and traveling the countryside to come get Sydney and myself. He is a wonderful man and I am so very thankful for his love, dedication to his family, his support, and our life together.

Sydney is amazing. She has been the strength and the understanding of things that most adults can’t understand. She sees things and verbalizes it as it is truly meant. She continues to remind us that Papa and Zachary are together and now they are best friends and they hold God’s hand together. She is joyful about this and reminds us to be also. This brings all of us comfort. She is growing up to be a very sensitive young girl and is aware of others struggles. I am proud to be her mommy and I am thankful for her innocence and the love she has for life

On a bright note… Sydney acquired a new little puppy while in New Mexico, a miniature party schnauzer that is 4 months old. She named him Ashes and they are becoming the best of friends. This little dog has loved her from the moment that he laid eyes on her. We are working with the discipline of house training and the do’s and don’ts of what a puppy can get into. It is fun, fun in the German house right now! HA HA!

I wanted to share the lyrics of a song that brings me comfort during these difficult days.

A Million Miles Away
By Mercyme

My Imagination
Gets me all the time
No matter where I look, You’re all I’m seeing
You’re my fascination
The very reason why
The reason why I’ve never stopped believing
And I’m so amazed that I
Am always on Your mind
I believe that You are always here with me
You’re everywhere but still within my reach
‘Cause how could You save the day
If You’re a millions miles away
Who’s to say what You can’t see can’t be found
There’s evidence of Your presence all around
Cause how could You save the day
If You’re a million miles away
You’re my inspiration
You’re always by my side
You are there as sure as I am breathing
Without hesitation
I am giving You my life
Cause I know You’re never gonna leave me
It doesn’t matter where I go
Cause this I know
What it all comes down to
Is being with You

Mom,

Daddy said he would never leave you and I know this to be true. You are soul mates and he is with you always. I Love you and miss you very much!

We again thank you for your continued support, love, and prayers.

May God continue to bless you as he has blessed us!

Sunday, February 20, 2005 11:22 AM CST

Our loss is Heaven’s gain and the world as I know it continues to feel the pain of the losses that we have been led to endure. My Daddy, the man that I love and look up to, became our Heavenly Guardian Angel February 18th at approximately 9:15pm. Just when I thought that my heart could not endure more pain, my world took another spiral and my heart a deeper hit.

Our family was blessed with the opportunity to share our love with each other and surround my father by the love that he so dutifully gave to us his entire life during his last few days. As he started to slip away and we knew that the time grew nearer our hearts grew heavier.

Our loving comfort comes from knowing he is now free of his pain and sufferings and that he now has Zachary in his loving arms. Together, they can experience the greatness of Heaven. I know that this is something that brought my Daddy comfort during his last moments, as he was surrounded by all of his loved ones here on earth and his angels that were guiding him to Heaven.

Sydney has been the strength for many of us as she continues to explain her excitement that Papa is now holding God’s hand with Zachary and playing with her Kiska. She explains that Papa will always be in our hearts and will always watch over us as Zachary does. On the evening of my Daddy’s passing, as we laid down to sleep in the hotel room, with our emotions high and in the stillness of the room, Sydney calmly and sweetly stroked her Nana’s face and sang “Twinkle, Twinkle, Little Star”, which has been her song to Zachary and she has not sung since before Zachary’s passing. She sang it once and has not sung it again. It was, without question, Zachary’s way of telling us he was with Papa.

After Zachary’s passing my Daddy continued to say that God said a child shall lead the way. I believe Zachary is leading the way with comfort to Heaven and Sydney is leading the way in comforting us here on earth. May we always thank God for our loving little ones that accept God’s signs as they are truly meant.

Services arrangements are being made with the assistance of Anderson-Bethany Funeral Home in Roswell, NM, and will be held on Tuesday afternoon.

May God continue to bless you and yours as he has blessed us!

Tuesday, February 8, 2005 6:46 PM CST

It has been 3 months today since Zachary became our heavenly angel and my heart was shattered into pieces. With everything that has taken place since he passed there are times that it seems like a lifetime ago; then a song, a picture, a stuffed monkey brings the emotions rushing back as though it was just this morning since I last held him, nurtured him, sang to him, felt his gentle touch, and his warm cuddly body next to mine. I miss him with everything that I am and his spirit and love still makes me want to be a better person and Mommy.

Max has been busy with work, bible study, business trips, and fraternal meetings. He did, however, manage to get the flu last week, which was then passed on to Sydney. Thankfully they are both over it and feeling much better. Max continues to be the loving husband and wonderful father for which I am so very thankful.

Sydney is a treat with her locks of curls, imagination and endless energy. She has an understanding beyond her years and is a delight to be with. She continues to speak very affectionately of her baby, sending him balloons and telling us of her dreams that she has of him and Kiska. I am so sad for what they will miss out on together. You can see in her eyes the longing to have her loving little sibling bundle back. I wish I could give that to her.

I am torn between the grief that I have for Zachary and the fear that I have for my dad’s dwindling health. I feel as though I am continuing this emotional roller coaster that does not seem to have an end in sight. I try to fill my days with as normal of a routine as possible, while on the inside my thoughts are filled with memories…memories of normalcy, baby giggles, family fun and then all the nightmares of how things change so very quickly come creeping in. I find myself replaying the events of Zachary’s life over and over from the beginning to the end. The more time that passes the harder it seems.

I want to thank each of you for the outpouring of thoughts and prayers. You have all been so gracious with your time to continue to check on us and remember how very special our little angel is.

I want to give a quick update on my Dad as he is not getting much better and some of the information coming back is quite overwhelming. He has recently been diagnosed with cardiomyopathy (yes, this is the same thing Zachary was diagnosed with), his liver and spleen have taken a huge hit and they are doing further testing to determine the severity. His blood counts and nutritional status have taken a huge hit. There are many other issues that they are dealing with.

You have all stood in our corner, praying and cheering us to health for Zachary. It is at this time that I would ask you to do this for my dad. He is a kind gentleman, whom in an instant would give a stranger his last dollar. He is the true meaning of unconditional giving and loving. He will be in the hospital during Valentine’s Day and his birthday, which is on the 16th of the month. I would like to ask that you shower him with your love and prayers as you have always done for us. I am sure it would lift his spirits to receive cards and well wishes from all of Zachary’s prayer warriors. You can send your cards to:

University Medical Center
Attn: Surgical Floor Room 321- Gary Brewton
602 Indiana
Lubbock, Texas 79415

I mentioned above that songs, phrases, the touch of Zachary’s monkey and the loving grace of God is what sustains me on difficult days and brings me comfort. The song below is one that brings me comfort these days, as well as a song by Amy Grant called, “I will lead you Home”.

Thanks again for all of your love, prayers and support, we are extremely thankful.

May God bless you and your as he continues to bless us.

“Homesick” - by MercyMe

You're in a better place, I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

Help me Lord cause I don't understand your ways
The reason why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

In Christ, there are no goodbyes
And in Christ, there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again

And I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow

I've never been more homesick than now

Friday, January 21, 2005 11:27 AM CST

In my eyes Psalm 139:16 "Thine eyes did see my substance, yet being unperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them." States that your death date is determined long before your birthdate.

This is the verse that seems to stay constant in my thoughts as I struggle to understand, cope and heal from all that Zachary encountered that cold November morning. Then when my thoughts are not filled with verses they are filled with questions, as a Mom why couldn’t I have done more, known something was wrong earlier, pushed harder when I was fearful of where we may be heading. As I try to make my days as normal as possible, I feel my heart and the sadness and longing for my precious baby boy intensifying. I will be forever grateful for the time we had together and forever sad for the time that we must now spend apart.

It has only been 2 ½ months since Zachary became our special little heavenly angel and I continue to be told that time heals all wounds. I can’t imagine this to be true, with the loss of a child whom you nurture, watch grow, love with everything that you are, you lose a piece of yourself when they pass. I have been told that it will be easier for my friends when this part of my life is not discussed as much. Zachary is in part the reason I am who I am today. It is because of what he taught me, the love he gave his family during some of the hardest times of his little life and the impact that he had on everyone that knew him that will allow his memory and his spirit to forever live on. He will forever be talked of with a smile and a love that is beyond comprehension.

There are many questions that we still have as it relates to Zachary’s disease and how it all took place. We were in hopes that his core blood could give us some of those answers, that may not be possible now due to an error that occurred during the transfer to the research hospital. So instead we have had the three of us tested to see if it will give us further answers as to if it is a genetic disease and how we should approach our future.

Our lives have been on an emotional roller coaster ride the past few months with Zachary’s passing. Then to bring our emotions and stress to an extended level, my loving father and the pillar of strength for our family has been extremely ill. I had journaled back in November asking for your prayers of health, recovery, and guidance for the doctors. He at that time was in the hospital for about 2 ½ . Which allowed him to be home for the holidays. He has subsequently been back in for 3 weeks, been through 2 surgeries and has had intense pain. With out giving great details, he has had an area of intestine that was being restricted by a mesh that was placed after a hernia repair, when trying to free the intestines during surgery it was perforated. This then required them to open him up, repair and suture the damaged area. A week after surgery, extensive swelling, kidneys that were shutting down, blood counts that were not stable, and x-rays that were showing fluid in the abdominal cavity he was rushed back into surgery. They found that the sutures did not hold from the previous surgery and the perotineum wall was also perforated. This is dangerous, and thank God for a wonderful nurse who listened to my parents concerns and we believe was guided into their room that night by a special little angel who was watching over his Papa. Otherwise, he may not be with us today. He is a long way from better, there is still a grand concern for infection, healing, and other issues that continue to come up. I believe our faith, our love, and our determination as a family will see us through this trying time.

Have you ever truly realized how much love alludes from the touch of a hand. When Zachary was in the hospital, those little hands with there gentle touch, were either patting me on the back, or holding my face and directing it where he wanted it. I recall the times I held his hand in mine and reminded him during all his numerous medical procedures to follow our Heavenly Father and he would see him through. Now, as I sit and watch my dad in pain and fighting to get better, it is his hands that I stay focused upon. The hands that made me feel protected as a child, that gave me comfort as a teenager and young adult to know he was proud of me. Then today as an adult remind me of all the love, guidance and strength that I have been surrounded with my entire life. Then in the end it is the hands of our Heavenly Father that will guide us home. Always remember how very special a gentle touch is from your loved ones.

I want to thank all of you for continuing to take this journey with us. It has been a long, emotional, challenging, rewarding and loving journey and we are extremely thankful to have each of you in our corner. Please pray that God will give us the strength to endure the roads ahead, without Zachary. Pray that my loving Daddy will be healed here with us.

May God continue to bless you and yours as he continues to bless us!

Sunday, December 26, 2004 7:29 PM CST

We hope each of you have had a very Merry Christmas and have enjoyed the time with your loved ones.

Christmas time has always been a favorite time of year for me. The brightness of the colors, the cheer in children’s voices, the glorious music that fills the air, the stories that are told by loved ones each year as a reflection of the past, and for the birth of Jesus Christ, what a glorious story.

This year as we enjoyed each others company immensely we also felt lost at times and as though a dark cloud was hovering above us ready to shower at any minute, and sometimes it did. As we have spent time reflecting we have also spent moments in bewilderment that we are without our precious baby. My arms feel so empty and my heart broken into a million pieces that, like glass, will not ever be repaired. There is silence in our house from the laughter that Zachary and Sydney shared. The sound that only a baby finding their voice and the deep fun laughter siblings can have. We all miss him so very much. From his precious little head, his beautiful bright blue eyes, his button-nose, his sweet little hands, his cuddly little body, to his ticklish little feet. I miss waking up to the sound of him playing happily in his room, walking in and being greeted by the most amazing, loving smile. His morning ritual was to hand you his monkey first, then his binky and his blanket. Then you could take him out of his crib because he knew you had everything in your hands that he would want. Oh, how I long for all of those moments back.

We finally have the results of the autopsy. It revealed that Zachary beat the primary disease of HLH with his transplant, but had contracted EBV (Ebstein Barr Virus), which caused him to have secondary HLH that attacked his heart. There was not anything that could have been done differently. He also tested positive for a bacillus bacterium, which was caused from a perforation of his bowel during the endoscope that crossed over into the blood stream. This then led to spinal meningitis, which was the cause for the high pitch volatile screams that Sunday night before his passing that stays so vivid in my mind. It is nice to have the final information and yet it is all so very sad, what his tiny little body went through those last days and what he tried to fight off. That little boy had more strength and determination in his body than most of us have in our little finger. He is my inspiration.

We have received many beautiful cards, gifts on Zachary’s behalf and contributions that have been made to many different organizations in his memory. I want to say thank you from the bottom of our hearts, you have each given of yourself to our family in our time of grief and we are grateful.

There is a tree that is set up at the hospital where Zachary was treated that allows people to make donations in memory or honor of someone. I have received many cards from people at the hospital that contributed in memory of Zachary. We are extremely touched as each card is opened, some from people that we are unfamiliar with and others that we came to know and love, I am humbled by the loving nature of the human spirit. In one of the cards there was a poem title Christmas In Heaven that has helped me get through these days with a little more grace than I may have had otherwise. It reads:

I see the countless Christmas trees around the world below
With tiny lights like heaven’s stars reflecting on the snow.
The sight is so spectacular please wipe away that tear
For I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear
But the sounds of music can’t compare with the Christmas choir up here.

I have no words to tell you of the joy their voices bring
For its beyond description to hear the angels sing.
I know how much you miss me, I see the pain inside your heart although I’ll be with Jesus Christ we’ll never be far a part.
I can’t tell you of the splendor or the peace here in this place.
Can you imagine Christmas with our Savior face to face?
I’ll ask Him to lift your spirits as I tell Him of your love
So then pray for one another as you lift your eyes above.
Please let your hearts be joyful and let your spirit sing
For I am spending Christmas in heaven and I’m walking with the King.

~Wanda Bencke

Precious Zachary, from the time we wake up in the morning to the time that we rest on our pillows you are a constant in our thoughts. We miss you deeper than imaginable and love you more than life. I sit and imagine you clapping your hands and bouncing to the beautiful music in Heaven this Christmas. What a celebration you have been witness to. I know you are surrounded by a love that surpasses all love, we look forward to one day sharing this glorious time with you. Sweet baby as you blessed us with your presence, you continue to fill us with your spirit. Your God given gift to teach us to live life to its fullest and appreciate even the smallest of things is still ever so present and will forever live on. You, my dear sweetheart, are a true gift and I cherish every memory that we shared. Until we are together again you are foremost in my thoughts, memories and heart.

To each of you we thank you for your constant love and devotion to our family. We continue to feel your prayers lifting us up during this sad and trying time in our lives. We know with each you by our side and our Heavenly Father walking this journey with us we will overcome all that the roads are paved with.

Please sign the guest book, if only to say you are checking in. We miss hearing from everyone.

May God bless you and yours as he continues to bless us!

Sunday, December 12, 2004 9:29 PM CST

A good friend recently reminded me of a quote that I had run across in the beginning of Zachary’s illness, which was:

“It is better to have loved and lost, than never to have loved at all.”

This quote could not be more true. Our life over the past year has required us to evaluate each and every moment, to evaluate what is actually important and to love so deep than it hurts. I would endure that pain and the pain that I feel today over and over again in order to have what I had with Zachary over the past year.

Many cards that we receive in the mail remark that the depth of your love will reflect the depth of your sorrow when you have lost a loved one. This also is very true. When I think of the moments that I shared with Zachary, my body feels warm, my face flush, my eyes fill with tears and my heart feels heavy for the most incredible loss that I have ever experienced. There are days that I smile as I remember all the wonderful things that our precious baby brought to our lives, the lessons that were learned and blessings that were given. Then there are days when getting up feels like a challenge, my body aches from head to toe from the longing to hold, to kiss and nurture my little one. It feels like a bad nightmare and you wish that you would awaken with a different ending. I believe that the ending will come when we are all reunited with our Heavenly Father and I am able to see and hold the most precious baby boy I have ever met. Until that day, we will grieve, smile at our wonderful memories, cry when it becomes more than we can handle, and sing and love each other as deeply as we can.

Our days have been filled with trying to get back in some sort of routine, I believe this will be easier once we get through the holidays. This week has been filled with memorial services. We attended a memorial service at the hospital on Thursday for all of the children that have passed away the past 2 years. It was beautiful and it was nice to see some of the people who took care of Zachary in different areas of the hospital. We also attended a candlelight service at the cemetery on Saturday night. This too was extremely touching; there were luminarias that filled the streets, walkways and resting-places. The ceremony was also very nice and allowed us to reflect on many emotions we are dealing with. We also decorated a small Christmas tree that stood in a red Santa boot with shiny red ribbons, a family picture, lights, red and white beads, blue and white snowmen and topped it with a silver star, which we placed at the graveside. Each item was picked out and placed on the tree with love and care by each of us.

Sydney has been amazing. She has an understanding beyond her years. She has her moments where she is very sad and talks about how she misses “her baby” (that is what she called Zachary), and how she feels alone without him. This is when we remind her how very lucky we were to have him in our life and that he will always be her special angel and he will live forever in her heart. She has had times where she wants to get him something special for Christmas and she talks about the things he would like. I finally talked her into sending him some Christmas balloons, because I was sure that he would love them and a special message into the heavens. It was perfect, she said. She picked out the balloons and as she released them she told him how much she loved him and how much her love for him fills her heart. My eyes were filled with tears and I was deeply touched by her loving ways. She often requests to go visit Zachary at the cemetery, she says “this is best place to talk to him and ask God to watch over him for me.” We usually end up there a few times a week, which is fine with me, whatever she needs, is what we will do. She is filled with many questions about death, heaven, what Zachary and God do together. “Do they bake cookies like we do, do they sing and dance, why do some babies have to die and others don’t?” are some of the questions I encounter. There is never an end or a direction that you can expect and at times she catches me off guard. But I answer all of her questions to the best of my ability, as does Max. Then, it is Sydney who answers her own questions, after she says that she talked with God. She so knowledgeably informs us that God told her that it is okay to cry, to sing, to laugh and to miss Zachary. But Mommy, God told me it is also okay to be happy because that is what Zachary told God he wants for us. I listen as she talks and I know deep within my heart that this little girl is talking about something very powerful and what she is saying is so true. She is our bright spot, she is the reason for getting up in the morning, for smiling, laughing and loving each other as deeply as we always have.

Max is dealing with his grief as best as he can, with everything that continues to shower over him. He is extremely busy with work these days as the end of the year comes to a close. Thankfully he will have a few days off the week of Christmas and we are looking forward to some quality family time together. Max, you’ve walked by my side during the most amazing times of our life and you have stood by with open arms during the most trying times. I believe with you by my side, our precious baby in our hearts and our beautiful, loving little girl in our arms we will overcome what we are faced with. Thank you for being the most wonderful husband and father to our children that I could have ever dreamed of. I love you!!!

I am sure many of you are wondering about those last moments. So are we. The final results of the autopsy report is still pending. We are hoping that within the next week or so we will have some answers. I will journal with the details as to what took place once I have the final report and I have my answers. As the time draws closer and we are closer to getting answers, I feel my shoulders start to tense up and my heart start to ache. It is important to me that I know exactly what took my babies life so quickly, and yet at the same I am scared to death of what it may end up being. I pray that I am able to handle the answers.

Time is valuable and precious, take a moment to reflect on your life, the loved ones; family or friends who you are so blessed to have in your life. Sing a little louder, cry a little harder and laugh until it hurts, these are some of the things that we will be doing.

Someone that I continue to think about, is our Angel Donor. This amazing man gave of himself in order to give our baby a second chance at life. He did that and so much more. I pray that you have a wonderful Christmas and that you are safe wherever you may be. God bless you!

To all of you who continue to take this journey with us, I thank you from the bottom of my heart. You have prayed for us, cheered for us and cried for us. You are our friends and our family! Thank You!

To our precious Zachary, we miss you so very much. Thank you for your life, for your touch, your beautiful bright smile and loving spirit. My heart aches to be with you and until that day I will continue to hold you in my heart and love you more than life.

May God bless you and yours as He continues to bless us!

Thursday, November 25, 2004 7:23 PM CST

"Kisses from Heaven to say Thank You!"

This was an e-mail message that I received one night when I had been struggling with the loss of Zachary. The message was sent from a religious support group that did not know of our situation. I took it as a message from our little angel and he knew exactly what I needed to hear. God bless you baby, I miss you and I am thankful for your presence, for your life and your spirit among us.

Happy Thanksgiving to each and every one of you!

As we spent the day with wonderful supportive friends, I couldn’t help but think of what was missing from our family. The sweetness of a big beautiful smile, the sound of a voice that was truly the voice of an angel, the hugs and kisses from our precious baby. I miss him more today than the day he passed and I can’t believe that we have been without his precious little body for 2 ½ weeks. It feels like he passed just yesterday. Although I know that he is with us in spirit always, I continue to miss his touch.

Many have asked how we are doing, how we will get over this? My answer to how we are doing is we are managing. Some moments are harder than others, you think you hear his voice, a little giggle from his room, need to give him medicines because of the hour of the day it is, feel as though you are missing something because we haven’t been in clinic in a few days. As for how we will get over this, that will not ever happen, I do not feel like you can ever get over the loss of a child. You learn to move on with the emptiness that you feel in your heart and the memories that you do not ever want to forget. Zachary was a gift, a true blessing from God, and as I reflect back upon the past year and what we all encountered I am so very thankful for each and every moment that we had together. His time here was complete, he had fulfilled his purpose in life and I find comfort in knowing the many people that he touched with his life. I look forward to the day that we will all reunite again. Until that day each of us have learned to live life as though there are no tomorrows.

When you live through what we have, and other parents continue to encounter, it gives you a grand appreciation for life, for the simple things: love, laugh, rain and sunshine, the sounds of the melodies of the birds. God gave us the gift of life and through that life he taught us that each day we have is a blessing, to be thankful for each moment with our loved ones, to hug a little longer and snuggle a little more. To be grateful for what we have.

We still do not have the full reports as to the events that led to his passing. I will wait to get all the information. We have released Zachary’s cord blood, which we had saved at his birth, to help with further research for HLH and hopefully to give us more information about the source of the HLH as it related to Zachary.

Many have asked how they can help. We are asking that if you would like to help make a difference, please make a contribution in Zachary’s memory to the Histiocytosis Association. If you choose to contribute, please check with your employers as they might match your donation. We need more research for HLH and for more research they need more funds. We thank you for your contributions, your support and your love.

Your contribution can be sent to :

Histiocytosis Association
In memory of Zachary German for HLH Research
72 E. Holly Ave. Suite 101 Dept. H
Pitman, New Jersey 08071

One last thing: Please pray for my Dad as he was admitted to the hospital the Wednesday after Zachary was buried. The doctors are still unable to determine the nature of his issues. At the current time he is stable but a puzzle to all of the doctors. Please keep him in your prayers and pray the doctors find the answers to cure him. He is my daddy and I love him with all of my heart, if I could make this better I would in a heartbeat.

May God bless you and yours always!

Monday, November 15, 2004 8:23 AM CST

I am truly touched by all of the support, the beautiful messages, prayers and all of the concern you have all shown our family. Thank you for being a part of every moment with us, waiting to hear of our next report, wondering how we were doing through each process that we encountered, and praying from the depths of your heart. May God bless each of you.

It has become quite apparent to me over the past week what a remarkably full life that Zachary had with us. Although short it was extremely full. Through the eyes of our Pastor, and the many testaments that were shared with us from individuals as to how Zachary brought them closer to each other, to God, and helped them live there life for today. He touched more people in his short life than most could do in a lifetime. I believe he fulfilled God’s plan here on earth with us and it was time for him to come home. He continues to make me want to be a better person and a better Mommy, and I long for the day when I see him again.

Max and I are doing as good as can be expected. We have our moments of strength and then our moments of weakness creep in. There are times that I do not feel as though I can close my eyes for fear of what I may see. Then there are other times that I can’t wait to go to bed in hopes that I will be able to hold on to him in my dreams, to comfort him and continually let him know how deep my love is for him, how much I miss his touch, his sweet little giggle, and the warmth of his gentle body next to mine. I feel lost inside and so very, very sad.

Sydney is doing pretty well. She has had the distraction of great friends and family. She seems to have an understanding in her own way as to what has happened. She has had her sad moments and has wanted to know why God doesn’t love her since he didn’t take her to be with Him also. We are spending a lot of time with explanations and trying to give her the space to grieve and yet be there for her as well. It is a fine line.

We had Zachary’s viewing on Friday night where he was surrounded by pictures of his life, flowers that brightened the room, cheerio boxes, children’s bible songs filled the air, and, of course, his monkey made an appearance next to him as well as in other places of the room (he had multiple). There were many wonderful people that came to pay there respects and I am thankful for all of the time and the memories that were shared.

The funeral on Saturday was absolutely beautiful. Again, the music was perfect. Pictures of his life and beautiful flowers were placed around him; the message that our pastor shared filled the room with the spirit of Our Heavenly Father and with Zachary by his side. We, prayed, we cried, we shared of our memories. Zachary was carried to his graveside by 4 individuals that mean a great deal to our family and we are so thankful for their willingness to be a part of this time with us. As the cold breeze blew through the air I sat in front of his casket and did not feel a thing expect the warmth of my baby’s memory that will live on. We all filled out a card with a message to Zachary and sent it to the heavens’ with a balloon attached. It was a beautiful send off as 100 balloons filled the sky and were delivered to our little one. Thank you all for sharing in this time with us!

I rejoice in knowing that you are in the presence of Our Heavenly Father and that you will not endure anymore pain. My sweet, Zachary, until we meet again and I am able to hold you in my arms, I will close my eyes and I will hold you in my dreams!

I will be updating periodically to let you know how we are doing, but most importantly to let you know what exactly took place on those last days that Zachary was here with us. We have an autopsy report pending as well as many other tests. I am awaiting the full picture. I have my beliefs as to what happened, but I will reserve that until I get the final information. This journey is far from over. I have a lot to find out!

May God bless you and yours!

Max and I both spoke at Zachary’s funeral and I wanted to share with you what we said:

By Stacy:

Many are wondering how I am able to do this – it is because I am empowered by the love of a child.

July 21, 2003 at 12:30pm was a day that changed our life forever. We were gifted with a beautiful, loving baby boy. Zachary taught us quickly that you cannot always plan everything. We were looking forward to a natural birth and he chose an emergency C-section. As he became ill and we learned of the direction we would need to take to heal his precious body; he taught us that patience would be a virtue. He endured many struggles and many challenges, yet he always accepted them with a calmness, a smile, and a loving demeanor.

The many people; welcomed newcomers that came into our life: Doctors, nurses, the many branches of medical staff that we encountered on a daily basis became our friends, Zachary’s playmates, our family.

Zachary had a gentle loving touch. He loved his little monkey, which comforted him during many difficult times. Cheerios were his favorite food. He enjoyed music, peek-a-boo, sharing, and naptime. He loved to smile, laugh, and he loved his big sister. Zachary’s eyes told a story from the day he was born to the day he passed. They told of love, truth, understanding, and patience.

Zachary taught us to live in the moment and love each other as though there were no tomorrows. He taught us to cherish the simple things that become overlooked in our hectic world: The wind in our face, the beauty of a smile, the innocence of a child.

Although his life was very isolated to all of the things a healthy toddler may experience, it became quite apparent to me in the past few days what a full life he had lived in his short time with us. He touched many people with his presence.

I am saddened that you will miss the silliness of puppy dog kisses, getting dirty with Sydney because you played so hard. I am sad that you will not experience the excitement of your first date, first kiss, or first love. I am sad that I will miss the man and father that you would have become.

By Max:

Sacrifice. By Webster’s definition sacrifice means “to suffer loss of or give up.”

Well, sacrifice is only one part of this journey we had with Zachary, but it is a part played by so many:

His Mother, Stacy, who gave every ounce of her love, devotion, and motherly instinct to care for Zachary – those oh so many months spent living in the hospital 24 hours per day to be there for every need or desire of Zachary’s.

His sister, Sydney, who not only sacrificed the present day so her Mommy and Daddy could give more of their time to Zachary; to a greater extent her future has been sacrificed. A future that should have brought hair pulling and fights, walks to school and swapping lunches, tears and laughter, and, maybe most importantly, having someone to share a life with that includes the same memories only siblings can have together.

Nana and Papa, who sacrificed many, many months of their life together so our lives would be easier. Stacy and I were at peace knowing Sydney was receiving the love and care from Nana she needed and deserved. For that, and so much more, we are eternally grateful.

His doctors and nurses sacrificed more than we could have asked. You gave us your time, your energy, and your minds. We knew what our path with you could include. You took us in and together we made a family.

Grandma Sally and Grandpa B, and many other aunts, uncles, cousins, and friends sacrificed truly knowing the boy whose life we celebrate today because to sacrifice knowing him was to protect him.

Zachary, you sacrificed your childhood, but you left behind a strength, a courage, a love, and a spirit that will live on forever.

In return, Zachary, you took our hearts!

Wednesday, November 10, 2004 1:54 AM CST

Day 223 (Written on the evening of November 9th. the site would not let us update.)

At 10:47am EST. our prayers for Zachary were answered. God held out his hand to release all the pain and suffering and Zachary took hold. He will forever be our precious angel.

The past few days he has struggled with many different things, all of which I cannot go into right now. He had a restful night and awoke this morning with a calm temperament, unless he was disturbed. I held him, sang to him, and changed his diaper. Minutes later he began to struggle; his eyes told the story. His doctor and nurse happened to be in the room minutes before everything happened. His heart stopped, as we called out to him to please hold on, he fought to stay with us but his precious body simply was not strong enough. I called Max at work to come to the hospital immediately; he was there within minutes. As we watched the medical teams work on him for over an hour I knew in my heart that this was it: no more pain and no more medicines. He is now running free among the flowers and all of God’s children. Enjoy sweet baby!

We spent the time after his passing holding him, singing to him, bathing him, and thanking him for all the time we had together. Mom came to the hospital to hold him and be with us. He was surrounded by so many people who loved him. We spoke of his accomplishments and of the many lives he has touched. He taught us to cherish every moment, to live life as though tomorrow did not exist. He taught us what is important.

Sydney is handling this amazingly well at this moment. We were able to bring her to the hospital where we could explain what had happened and allow her to see him, hold him, and touch him how ever she saw appropriate. We answered her questions and allowed her to take the lead. We had a child life specialist with us that gave us our direction and stayed with us throughout the day. Heather, thank you so much for your guidance, support, and helping us to do what was right for Sydney.

On July 21st, 2003, God granted us with the gift of a very precious life, and although we were only able to have a short time together I am thankful that we were entrusted with the opportunity to be touched by the most amazing little boy I have ever met.

I long to feel his touch on my face, to see the brightness in his eyes, to hear his short puffs of air, and to know what his future may have been. My heart breaks that Sydney will not have him to pal around with as they grow old. I miss my baby boy!

There are so many of you who have taken this journey with us. We asked that God’s will be done. We prayed for him to be with us, but not at the risk of him struggling. You have all been by our side and we thank you from the depths of our hearts. Zachary’s memorial service will be a reflection of his life. We will celebrate the time we had together. I hope that those who are able to attend will join us in this celebration. Those who cannot, we know you are with us in spirit.

Viewing will be held on Friday from 6-8pm at Woody’s Funeral Home, 1771 Parham Road, Richmond. Services will be at Three Chopt Presbyterian Church, 9315 Three Chopt Road, Richmond, VA, at 12:00pm on Saturday.

Never good byes, only, until we meet again.

May God continue to bless you and yours as He has blessed us!

Monday, November 8, 2004 10:48 AM CST

Day 222

The past 12 hours have been emotional. Max and I have shed many tears, said continual prayers and we continue to feel angry that Zachary is faced with so many challenges in his short life with us.

We were hoping for reasonable concerns as it related to the vomiting and discomfort that Zachary had last night. We were hoping for a simple solution. But as we have learned there is not an easy path for us to take. Each piece of information is a new blow to the emotions this week. After Max journaled last night, the issues multiplied, Zachary’s fussiness became high pitch screams that filled the room and cut through my heart like blades. His vomiting continued until there was not anything left on his stomach and then he proceeded to dry heave. He has had fevers throughout the night that would come and go. Because there was a fever his lines were cultured. As the night progressed the intensity of his cries/screams became scary and he became unable to stabilize his head. I knew in my gut something else was happening. Zachary’s doctor came in, evaluated him and decided that we needed to do a head Ct-scan to rule out a lot of concerns. At the same time we received a call from the lab stating that he was growing back a positive culture. He was immediately started on I.V. antibiotics, but this was not the only concern we were witnessing. After doing the scan we came back to the transplant floor and there was a call a few minutes later from radiology. We were informed that Zachary is building fluid up on his brain. Of course, this is not to mention all the other issues that I have journaled about over the past week that we continue to watch. He will have an MRI later today and we will consult with Neurology to determine how they feel about what they are seeing.

He deserves better than this; he deserves to run and feel the wind against his face, to make snowmen and get bruises from doing things that he really shouldn’t. He has fought so hard and to see him continue to suffer is so very difficult. As a parent you are suppose to help ease the burden for your children and to protect them from the evil. I am sad and even angry that I am not able to make this better for him. This little one has brought so much joy, love, awareness and insight to our lives and I want to be able to do all of this for him in return. God please place your healing hands on his body and rid him of all of his ailments. I also pray that you heal him here on earth with us, we still have so many things to see and experience together as a family.

I want to thank all of you who continue to rally around us. I ask that you flood the heavens with your prayers for Zachary’s recovery. You are our prayer warriors and we thank you for taking this journey with us.

May God continue to bless you and yours!

Sunday, November 7, 2004 8:56 PM CST

Day + 221

(Max journaling)

We wanted to provide a very quick journal to the many of you who so faithfully watch for updates.

Not much new to report at this time, although this evening has brought some potentially new challenges. We’ve been given the “green light” to expand Zachary’s diet, so we have begun to introduce different milks/formulas. For the past 3+ months his only milk source has been Nutramigen. So over the past couple of days we have been slowly mixing in other types of milk: evaporated milk and lactose free milk. The past two nights he has reacted with an upset stomach and a hurtful cry. Tonight he added vomit and a low-grade fever. We pray they were both related to the lactose milk and not a flare-up of the GVH. We wonder if he has an allergy to milk products.

He has responded to the Zofran and Maalox, both to settle his stomach, so this eases our worries (a little). Plus, the fever came down after Tylenol. His gums are puffy, so that also eases our worries regarding the fever – we can handle teething.

So, tomorrow we will either go back to the Nutramigen 100% or try something else. We’ll wait to talk with his dietician before doing anything. In the meantime only Nutramigen.

Zachary had another echocardiogram today; the results of which are not yet known. His cardiologist didn’t see enough “blue states” on Tuesday/Wednesday, so his depression may be limiting his focus. Actually, he is a very good doctor and he has our trust. We expect to hear some results tomorrow.

Please continue to keep us in your prayers. They lift us up.

May God continue to bless you and yours!

Friday, November 5, 2004 6:50 PM CST

Day +219

I apologize for the delay in journaling, I feel as though I left everyone hanging at a very crucial time. It was not intentional. I got a virus on the laptop that I use to journal when we are at the hospital. Thankfully, my brother is a wiz at fixing computers so we sent it to him and he got it back to me quickly. Dustin, thank you so much for jumping in to help, you are a terrific brother.

I would love to be able to journal and tell everyone that we are out of the hospital and things have improved dramatically. Unfortunately, that is not what is happening. We are still in-patient. Things have not gotten worse, things have just changed: more decisions to make, more areas to watch, more medical terminology to learn.

First let me say that Zachary continues to be in good spirits, the temperament of this child continues to amaze me in every way. In the last week, he has had multiple echocardiograms, an endoscope, an EKG, and they have all been done without any sedation. The typical 15 month is sedated for the majority of these procedures; he sits back and watches all that is being done. This is not to mention all the other many exams, blood draws and vital checks, you name it and this week if feels like it has been done. He also had to go 27 hours without any formula or solids prior to his endoscope to make sure his body was empty of food. This was not easy to watch. He was hungry and with his motions he begged anyone that came into the room to get him a bottle. It was heart wrenching and difficult to watch your little one so hungry. When he got his bottle his hands started to shake at the sight of food, and this brought tears to my eyes.

I will try to let you know what is going on without losing anyone in the process. We are looking at many different issues that are happening; all of which link to each other in one way or another. In the last week, our issues have been blood counts that are dropping or not holding stable, gut gvhd, skin gvhd, immunosuppressant medications that we are having a hard time stabilizing, cardiomyopathy, Secondary HLH, and he is weak from everything he has been battling. The blood counts are concerning, but I pray that we are going to see them recover soon, which will be an indicator that we are headed in the right direction. Many things can affect your blood counts, viral illness, infections, medications, and so much more. The gvhd issues have come just in the past few days, Zachary had an endoscope done on Wednesday to rule out graft vs. host disease. This test was done primarily to make sure we would be safe to start tapering his steroids without any implications. The initial thought was that everything looked really good. But of course pathologically we found out yesterday that he was stage 1 to 2. This was a shock because clinically he was not showing any signs whatsoever. Then later yesterday afternoon his skin started to flare and shows signs of the gvhd also. In my mind I thought this can not be happening, in my gut I knew something else was brewing. We believe that with the change in medications and adding new cardiac medicines, this has played a role in his in his immunosuppresion medications not being therapeutic. This can add to the flare-up of gvhd. Zachary’s heart issues continue to be a grand concern. We have had to increase his medications because the initial dose that he was placed on was not making the change that the doctors wanted to see. Although his heart rate has slowed down, the blood is still not pumping through the heart the way it should or with the ease that it should. Because of this he was put on a third medication yesterday that they eluded to as being a “poison” to slow the heart even more and get it to stop working so hard. I cringed to hear them reference a medication in this way. In essence that is what the chemotherapy that he was on was and now we are using a cardiac medication that is being looked at in those terms. Then we deal with the fact that we are still unsure of the nature of what was seen in the fluid that was taken from around his heart. There is still a possibility that this is secondary HLH, now, the other thought is that what was seen was Hemophagositosis, and this is a process in which the cells destroy the red cells, or eat them if you may. This is very similar to HLH, the difference is that anyone at a given time with a viral illness can have blood drawn and see this exact thing and once the virus is gone everything returns to normal. Our situation as it relates to this is still unsure, we are waiting for many different tests that have been sent out. There are so many different things that are going on that at times you truly feel as though your mind cannot slow down to take in anymore information and, yet, I want all the facts. We are also faced with finding an alternative to steroids to treat his gvhd issues. This has raised many concerns, worries and fears, because with each new medication there is also an issue that could arise from it. Our doctor decided on a treatment after discussing it with us this morning and I pray that it is successful in getting him off the steroids and that it comes without complications. We need to do this and we need it to work for his safety, to help his heart and to get us over this mountain we can’t seem to reach the top of. I feel comfortable with what we need to do and it gives me so much reassurance to know that our doctor has looked into this from every angle and with the help of others. As I have said many times in the past I am thankful for our options. We did not enter into this with a blind eye we knew this would be a difficult journey. But as we saw it, it was the only way to go to save our little one and give him more time with us.

Sydney is doing okay; she has had a few instances where she has been around children her age that have siblings that are Zachary’s age this past week. This has had a huge affect on her, she seems to close herself off and get very sad. She wants to show others that she too has a sweet little brother that she loves very much and that, unfortunately, can’t happen. He cannot be exposed to others in that way. She is so loving and incredibly proud of her family. It breaks my heart to see her so sad when she encounters times like these. She is my little cuddle bug and I am so proud of her.

Max and I are leaning on our Heavenly Father for strength, support and guidance. This has been a rough week, but it has not stopped us from feeling determined to achieve our ultimate goal, which is to overcome this horrible disease and give Zachary and Sydney the life that we all long for. We know that as we take each day, one moment at a time, we will get through this.

Now for all of you who have rallied around us, we feel your prayers, your loving presence and your support. I know our prayers are being heard and they will see us through this. This is a journey that not all people prefer to travel and those of you who have chosen to be there for the good times and the bad is very apparent. You are our prayer warriors and we are grateful to you all.

May God continue to bless you and yours!

Sunday, October 31, 2004 11:04 PM CST

Day +214

I am wondering when someone is going to shake me out of this nightmare that seems to be continuing to add chapters day by day. But each time I open my eyes I am faced with the reality of what we are faced with. This is a journey where the roads are becoming steeper and lately I feel as though we are having boulders thrown at us while we make our path.

Zachary is on the transplant floor and is being taken care of by wonderful people who we have grown to love and we would be happy to call family. They always have all of our best interests in mind. Unfortunately, that has not made the information that we received today any easier. We received the results of the tests from the fluid that was building from around his heart. It is showing signs of active HLH. So now we deal with fluid around the heart, cardiomyopathy, active HLH, GVHD issues, blood counts dropping and medication concerns. I believe this is quite enough! Right now his heart is considered stable; we will have another echocardiogram done in the morning to verify this. He does not seem to be in any discomfort at this time. His blood counts have started to take a pretty severe hit, so we will watch them very carefully. As for the active HLH we have sent off many blood tests to determine if this is viral induced which would be a secondary form of HLH or if it is primary and the disease that he initially had has reactivated or was dormant in his organs. Zachary’s doctor is in touch with many different specialists to find the best way to approach this and how to get all the answers that are needed to make the best informed decision as to what our next step is. At this time we will get his cyclosporine levels therapeutic and increase his steroids on I.V., while keeping a close watch on his little heart. I know that one thought is that we may need to start chemotherapy again to get on top of the HLH. It is a very fine line that must be monitored very closely with all that is going on and what medicines will best treat the situation without opening up another issue. I am sure that I am missing something but as things occur I will try to update and keep you informed. Again, to all the wonderful people on the transplant floor, you bring us comfort in knowing that you are looking for the right answers to make our journey more bearable. We thank God for placing you in our lives and for your knowledge and compassion.

Over the past few days I have been asked how we can continue to keep up the pace that we have had over the past year, while constantly being hit with difficult news. My answer is easy I have a gentle hand on my shoulder from above guiding my thoughts my fears, and giving me direction and I have the most precious little boy that deserves nothing but the best. When I look into those eyes all I want is healing, love, happiness and normalcy for him. The only way I can do that is to put all my burdens aside when I am with him and focus on the items that I mentioned above. He derserves that and so much more.

I want to thank my Mom and Dad for all of their support and willingness again to drop everything and adjust to what our needs are. We will not ever be able to thank you enough for all of the sacrifices that you have made on our behalf. Daddy will be leaving tomorrow and Mom is going to stay a little longer to help us with everything.

Sydney overall is doing pretty well. She is struggling a little and I know that she is scared based upon comments that she has made lately. But we will try to keep everything as normal as possible for her and inform her as best we can without giving her too much information. She also been very sensitive lately; which is perfectly acceptable.

Max and I are hanging in there. We are scared, fearful, angry, and our minds do not seem to rest even when our eyes our closed. You have so many questions that are unanswered. The biggest one is why?

I know that I continue to ask you for your prayers. I am not only asking for your prayers, but I am asking that you spread the word, churches, work, prayer group, neighbors. Your dedication and constant support is a blessing and we are continually thankful.

Fearful, but taking this one day at a time from Virginia.

May God continue to bless you and yours!

Saturday, October 30, 2004 9:08 PM CDT

Day 213

I have thought of so many different ways to journal this particular entry, but honestly I am having trouble finding the right words.

The fact is the past few days have been very difficult for all of us. Zachary has been having a lot of trouble with his breathing and has been very irritable. On Thursday it was determined that he had an extremely bad heart murmur, with giving him fluids and monitoring him everything seemed to improve some. We were to return on Friday for more I.V. Fluids. After talking with his doctor we decided to go ahead with an echocardiogram (which I am proud to say that Zachary did without sedation). The results came back immediately; we were admitted to the Pediatric Intensive Care Unit because Zachary had fluid that was rapidly developing in the sac around his heart and if this was not enough he also was diagnosed with Cardiomyopathy (sp?). We are not sure yet what the exact reason is for the fluid, they immediately sedated him and did a procedure to drain the fluid. We are still waiting for the results from the tests that are being performed on the fluid. The Cardiomyopathy is a result of the steroids that we have needed to use to keep his life threatening GVHD issues under control. This heart condition is often what athletes have when they collapse during sporting events. We pray that we have caught this in time and that the medications that they have placed him on to allow his heart to slow down will work and that we are able to get him off the steroids successfully. There is so much more that is taking place. Please forgive me; I do not have the emotions to journal details at this time. This is another aggressive turn in the road that we must face and I pray that our journey from this point forward is completely a healing one.

Zachary’s temperament has, as always been amazing. While the Cardiologist was informing us of the procedure I was holding him in my arms; he took his sweet little hands and placed them on my face and started giving me hugs and kisses while smiling, laughing and patting me. I believe that this was his was of reassuring me of his outcome. He is one precious special little boy.

He was transferred back to the transplant floor this afternoon where he will be monitored very closely over the next while. So far we are seeing improvement and he is tolerating the new medications. But at this point our outcome is unknown.

At this time I ask that you please pray for Zachary’s heart, his health and for strength. This adds to our long road to recovery and your prayers make an incredible difference.
I know with God by our side and with each of you in our corner we will again overcome a very difficult turn.

May God continue to bless you and yours!

Sunday, October 17, 2004 11:21 AM CDT

Day +200 (Hooray, up, up, up)

*NOTE: This was written on 10/16, but the website would not allow the update.

It is a blessing to be 200 days out from transplant and at home together. I am thankful for each moment that God has blessed us with, each breath, each kiss and each hug that we share.

There is a lot that has happened with Zachary since I last journaled. Let me start by saying we only had one week of successfully going to the hospital once a week. Since I last journaled we have been there on a regular basis. The Friday after his bone marrow aspirate I received a call from his doctor saying that they needed him in clinic due to a positive blood culture that grew over night out of his line. So I quickly loaded up the little ones and headed for clinic. We decided that since he was not showing any signs that we would re-culture the lines before treating anything. We did this again two more times over the next two days and each culture came back positive. It was then determined that he would have to be put back on a Vancomycin infusion, which we do at home and he is hooked up around the clock. It made me feel queasy to start this antibiotic again, but after many prayers and a lot of trust in our doctors we moved forward. Since the start of the antibiotic we have also been having problems regulating his Cyclosporine levels. They have been extremely elevated and this can also cause a lot of problems, he has been squinting a lot this afternoon, shaking some and acting as though he is having headaches. We will go in tomorrow and have blood drawn to see if we need to lower his dose. We have also had issues with the Vancomycin levels being elevated. So we stopped the continuous infusion for 24 hours to allow the levels to lower slightly and we started individual infusions that we will do every 8 hours( this will free him up from being hooked up constantly). So we are doing a lot of monitoring of levels, adjusting meds and a lot of blood draws lately. As if this all was not enough, we had to take him in this morning because his needle had shifted and it was leaking fluid into his tissue when we would infuse anything, causing a lot of discomfort and swelling. We have not received all the information back on his bone marrow aspirate, but the information that we do have is that he is still showing signs of the hlh in his marrow. It looks better than the last aspirate; when we asked for a comparison we were told that 3 months ago he had approximately 30% of the hlh present and this time it was 15 to 20 %. It is improving, but I must say I was disappointed that it was not all gone. As he gets off the immunosuppression medications we should see these numbers improve, because the donor cells will be able to take over and do there job fully. But for now with the high dose steroids that we are giving him to keep the GVHD under control we are slowing the donor cells down. It is a very fine line and something that must be done with a very delicate balance. I thank God for Zachary’s Doctors and Nurses and the knowledge that they have to take care of our precious little boy.

Zachary has been in good spirits for the most part. He has wanted to be held a lot and is frustrated when he has not been able to get down and go. He has also become quite the Mommy’s boy lately; I can’t leave the room without getting a sad little face that just melts my heart. He continues to give the smiles that just heat you up from the inside out. My goodness how he has opened my eyes to all that we have and to what is truly important.

Sydney is doing well; she is continuing to battle her allergies. She loves school and all that is has to offer. She is quite the little drama queen. She is constantly dancing and singing. She can put her emotions into a song that she makes up and you know exactly what she is thinking. Sydney and I went to see Disney’s Nemo on Ice. This was the first time that we have taken her to something like this and she loved it. Then her and Max went to the Pumpkin Patch to pick Pumpkins with some very dear friends of ours. This too put a smile on her face that makes you know she is happy.

Max is staying extremely busy. He has had been out of town on business some this past week and will be gone a few days next week as well. I am impressed at how well he balances his career and all the responsibilities that he has at home as well. Max, you complete me and knowing that you are by my side makes life’s difficulties more bearable. I love you, sweetheart!

I am doing pretty good. We are halfway through the month and as I should not ever wish days away, I am ready for November. This month has placed many emotions on me that sometimes I can’t seem to control. Not to mention, that I have been battling my own allergy/sinus infection demons. I am feeling much better, after starting antibiotics. I am planning a trip to Atlanta next week to attend a Histiocyte conference. I need to hear first hand what our future may hold, talk with others that have been through this and hopefully get some answers that will put my mind at ease; if that is possible. Plus, my Mom is coming to visit for 2 weeks. She’ll be here tomorrow to help while Max is away for work next week. This has certainly helped me relax given all the Clinic visits we’ve had lately and Sydney’s needs for school and attention. Nana’s arrival will be a surprise for Sydney.

I have a prayer request if I may: Max’s uncle, whom I will not name because he is a private man, was in a motorcycle accident 2 weeks ago and was seriously injured. This man has been there for both Max and myself throughout Zachary’s illness to provide emotional support, he lent a shoulder and a listening ear, and many other things that he and his family have done. He is a strong man with a very loving family and I have no doubt that he will make a full recovery. But it is going to take time, a lot of patience and strength. Please pray for him, his recovery, and for his loved ones that so dutifully stay by his side to support him. We love you all. You are in our thoughts and prayers! Without prompting, Sydney says a special prayer for your recovery each night!

Thank you, to those of you who have been there for us and continue to keep us in your thoughts and prayers. It is you and our Heavenly Father who help us through each day.

May God bless you and yours!

Monday, October 4, 2004 7:56 AM CDT

Day 187

It’s beginning to look a lot like fall out here on the East Coast. Nice crisp morning weather and the beautiful fall colors are starting to show their presence. As much as I enjoy this time of year I must say I went into this month extremely guarded. This weekend last year we spent outside as a family, doing the American Heart association heart walk, a birthday party and a picnic. That was the last time we have been outside to enjoy these types of events as a family. Because the following weekend was when Zachary was hospitalized and our lives were forever changed. So with that in mind, I am so very thankful for where we are today as I look back on the year that we have been through.

Zachary is now over 6 months post-transplant! Hooray baby boy, look at how much you have already accomplished in your short life with us. In the transplant world, this is “BIG” because the farther out you get from transplant day the higher the survival rate. He is scheduled for his bone marrow aspirate Thursday which will give us a better idea of how things are really doing on the inside in the school of Zachary. This is the way one of Zachary’s doctors explains the process of what his new stem cells are doing, which is going to Zachary College to see exactly how he works and how they can work together. Pretty nifty huh!

Zachary is doing extremely well; he is active, happy and into everything. We actually were able to start our once a week visits successfully this week. His doctor was very happy with how he looked and the progress that he continues to make. We are continuing the steroid taper on the evening doses, which so far is going well, thank goodness. He is still on a number of oral medications, IV steroids in the morning and IV magnesium every other day, which we do from home. His red blood count is still showing some abnormalities, but we are hoping that as we successfully get him off the steroids this will all become more regular. I continue to be amazed at his temperament as he so graciously takes life by the hand and enjoys each moment. He continues to keep his little monkey close at hand; that little animal can put a smile on his face that is absolutely priceless. I can’t seem to give him enough love and appreciation for blessing us with his presence in our life.

Sydney is doing pretty well, other than the awful allergies that she has been hit with this year. She continues to enjoy school, her new friends and her lovely teachers. Sydney and I spent the afternoon together on Saturday having a girl’s lunch and doing a little shopping for some school items. We had a ball and she was an absolute delight. That day and the discussions that we had will be forever etched in my memory. In the past week, she has bought her first pack of gum with her own money and she can spell Mississippi, it is part of a song she sings, but nevertheless it is spelled (Aunt Connie aren’t you so proud). She too is a blessing and I am so very thankful for each moment we have with each other.

Max and I are both doing well. Max is staying extremely busy with work, family, bible study and many other things that seem to continue to fill his plate. I am staying busy with the little ones (clinic visits, school, OT/PT), work, and you know me always organizing the house.

As many memories of the past year flood my mind, I want to recognize the generosity of a stranger that got us to where we are today. Our Angel Donor, wherever you are, I pray you are safe and that you know how very important you are to us, and how very thankful we are to you for your precious gift of a second chance at life. God Bless you!

I also want to thank those of you who signed the guest books of Jembug and Jordan. Jembug continues to progress, but has hit a few bumps in the road as he is having GVHD issues. Please check on their site and let them know they are in your prayers. I am sad to report that Jordan has earned his angel wings, fly free sweet baby, fly free. I cannot begin to imagine the heartache that his parents must feel, as he was their shining star and now he is forever their special angel. They could also use some supportive prayers.

To each and every one of you who have been with us through the hard times and the good times. Thank you! You have cried with us, laughed with us, and prayed with us. You are a continued blessing and we are so thankful for your continued support and prayers for the days ahead.

May God bless you and yours always!

Saturday, September 18, 2004 9:00 PM CDT

Day 171

As many people have experienced the devastating weather from the hurricanes lately
I pray that this entry finds all of you safe wherever you may be.

Although you are unable to see it there is bounce in my step as I journal today because as each day progresses for Zachary, life is starting to feel a little more normal. Who knows anymore what normal is, all I know is that we have been able to keep Zachary at home and life is pretty good at this point. We take each day as it comes and I am so very thankful for each and every moment that we have with each other.

There has been a lot take place since the last time I journaled. Let me start by saying that Zachary is doing much better. He only had to be on the antibiotic for the line infection for three days because the second culture came back negative for an infection. Thankfully, the gut GVHD is getting better and the antibiotic didn’t seem to have an affect one way or the other. Thank you, thank you, thank you for all of your prayers regarding this matter! We have actually started to taper his evening dose of steroids and I pray that this time we are able to get him off the steroids successfully without anymore GVHD flare-ups of the skin or gut. The blood test that we were waiting for, which we hoped would give us more information about what was going on with his red blood cells, showed that his cholesterol and triglycerides were elevated. After reviewing his diet, which has not changed (because of the gut GVHD he is only allowed certain foods), it was determined that the levels were high due to the high doses of steroids. We are in hopes that once we are able to get him off the steroids that these levels will become normal again. This is one more reason to pray that we are able to successfully get him off the steroids.

Zachary continues to be one active little guy and all of the little bumps and bruises are a grand indicator of this. He has found all of the things that he is not supposed to be in and finds great pleasure in pulling everything over on himself. He simply amazes me as he takes everything that life has dealt him with a smile and he forges on to embrace each new moment. I truly am in awe of being his Mom and am blessed with the life that we have all been given together.

Sydney started preschool this week and I must say our baby girl is definitely growing up into a lovely little girl. She loves school, her teachers and the interaction with all of the children. The first day she was so excited as Max walked her to class that she actually dismissed him and told him she would be just fine as they entered the building. We were the ones that were having a hard time letting her go. She has come home with beautiful art projects, singing the songs that she has learned from school and talking about the activities that she enjoyed. It is a true pleasure to see her so happy. She is a nurturing little one and I know that it brings her great joy to be back in the midst of interaction with her peers and giving of herself to others. She will always be my little doll baby!!!

Max is doing well. He has started a new bible study class that meets on Monday evenings that he is thoroughly enjoying. He is also staying extremely busy with work as he has recently accepted a new position and received a promotion to Senior Vice President. Sweetheart, thank you so much for all that you provide for our family and giving me the ability to be home with our children to take care of them. We are so very proud of you and the man that you are.

As for myself I am doing much better. I want to thank all of you that so graciously called, emailed or sent cards of encouragement and support. I apologize if I worried any of you after my last journal entry. The fact of the matter is, when you are dealing with the illness of a child you spin your wheels to try and do everything you can to help them get better and while still trying to give your other child some since of normalcy. While doing all of this, you forget about yourself, you put yourself on hold and the concern for everything, even the smallest of things builds. Max says that I am to hard on myself, I will not deny this. But I am who I am and I love my family with all that I am and I will do anything in my power to protect them. With this in mind, it gets overwhelming at times. I think that is normal regardless of your situation, it is just life. As each day passes and Zachary continues to improve, and we now have a plan in place for Sydney as it relates to preschool and what we need to do to keep both her and Zachary safe. Thanks to wonderful neighbors and a great school director for helping in providing me with that relief. I am feeling better and as we move toward each day I gain more comfort. Please do not worry, I am going to be just fine.

I feel we are all given many trials and tribulations in life and it is how we deals with those that allows us to look at the world from a different perspective. We have been given the opportunity to see just how precious life is and how fortunate we are to have each other. The past year has opened our eyes to many things and we are thankful for that awakening. Thank you God for hearing our prayers, for guiding us and giving us comfort.

We thank each and everyone of you for your dedication to our family. Please continue to pray for complete recovery for Zachary, that he is able to come off the steroids successfully and that he does not have any future complications from the actually treatment protocol for his transplant.

We have added a few new links to our website, Jembug and Jordan. Please vistit their sites. They each have a story and they could use encouragement and prayers as they are both in the hospital facing their own battles. They are precious little ones!

May God Bless you and yours!

Sunday, September 5, 2004 9:27 PM CDT

Day 158

I pray that this entry finds all of our devoted friends and family safe and enjoying this Labor Day weekend. We are happy to report that we have survived the torrential floods that hit the Richmond area this past week; it was definitely quite the experience. We pray that those of you in the path of Hurricane Frances are safe, as well.

It has been awhile since we last journaled and I apologize for the delay. You can safely assume that if I do not journal life is busy and things are status quo on the home front, and we are managing to stay out of the hospital. Thank goodness!

Zachary continues to bless us with his beautiful smile, sweet laugh, engaging eyes and the best disposition a child could possess. He is extremely active and trying to make up for lost time. To look at him you would never know the battle that his little body has been through over the last 11 months and continues to fight on.

Zachary continues to have the Gut GVHD issues. Thankfully the diapers are less, there is very little blood and they are starting to look a little more normal. Unfortunately, we had another positive blood culture that came back today, so we were called into clinic to redo the culture and we were started on Vancomyacin again. I pray that this does not set us back again. Our history seems to be that the extreme bowel movements and the GVHD of the gut follow the start of this antibiotic. Is it a coincidence, probably, but it still makes us very apprehensive every time we need to use this particular antibiotic. I guess only time will tell; this is the story of our life. The I.V. steroids seem to be doing their job. Zachary’s blood counts for the most part are looking good with the exception of low magnesium, which we continue to do by home I.V. every other day and misformed red blood cells that are being produce in large quantities. We have another blood test pending that may give us a greater insight to what is happening. In the meantime, we wait, we enjoy each day and I try not to less the stress get the best of me.

Sydney is my ray of sunshine, her imagination continues to blossom and her personality is a true blessing. She has found a sense of calmness lately and it is so nice to see. She has been preparing for preschool and seems to be looking forward to it. She has also been going with Zachary and myself to clinic on Fridays. The transplant team felt as though it would be okay for her to come for the short visits when we are doing blood counts and leaving. Then on the days when we are there longer she spends time with some friends. She has enjoyed both of these immensely. When she is with Zachary she feels as though she is a part of what is happening.

Max and I are proud parents and thankful for each and every moment that we have with our little ones. Time is precious. We have learned that and much, much more over the past 11 months.

Max has been extremely busy with work lately. He is a man of character, loyalty, love and true dedication to our children and myself. I am so very thankful for having him in my life and I cannot imagine walking this journey with anyone else by my side. Max, thank you for being the person that you are, I love you sweetheart.

As for myself, I am tired and weary. It is one thing to be physically exhausted, but it is an entirely different ballgame to be mentally exhausted. I feel as though I am constantly tense; as hard as I try to relax it just doesn’t happen. My concerns stem around Zachary, his gvhd, his blood counts, the complications that can occur for many years to come from the actual transplant protocol and the medicines that were needed for treatment, i.e., organ damage, leukemia, etc. I worry about Sydney and if this disease will affect her in a direct way. There are so many unanswered questions about this disease. I wonder when the time is where I feel as though I can comfortably breathe again and take the weight off my shoulders that I seem to always carry with me. Please do not get me wrong, I am thankful for both of our children, they have enhanced our lives beyond belief. I also am thankful that we had a choice for treatment for Zachary’s disease, I am just nervous for what our future may hold. Simply stated, I want to put this behind us and I look forward to “too much of a good thing”! Only time will allow this to happen, so in the meantime I try to stay calm and place my concerns in God’s hands and pray that He will see us through.

To each and every one of you, you inspire us with your words, your prayers and all of your generous contributions of yourself. Thank you always!

We have added new pictures that are a small history of what Zachary has been through, from transplant, gvhd/pneumonia and today!

May God continue to bless you and yours!

Saturday, August 21, 2004 9:22 PM CDT

Day +143

This has been a very long and trying week. I am looking forward to a fresh start tomorrow and I believe all good things are on our horizon as we push through the difficult times.

The results of Zachary’s endoscope biopsy revealed that the issue we are dealing with is graft vs. host disease of the gut, stage 2 (out of 5, lower # the better). Yes, this will be our second go around with this and it was my fear and instinct that this is what the results would be. Therefore, we have started Zachary back on high dose steroids, which is giving him the steroid moans. He was also placed on another medication that will help to enhance the effects of the steroids as well as to help get him off of the steroids successfully, which we were obviously unable to do this time around. I am saddened that this is affecting him again and yet I know that without a doubt he will again overcome. He has had fewer bowel movements today than he has had in two weeks with less blood, which makes me feel even more positive. I pray that this treatment works and we do not need to go to the next level. I am also pleased that we are able to treat him from home. Because we are unable to determine how much of his medicines he is absorbing it is necessary that we do the steroids by IV, which we are becoming quite comfortable with doing ourselves. He is also still getting infusion of IV magnesium every other day from home that we will start tomorrow. Zachary’s doctors have also been in touch with other transplant specialist to make sure we are doing the very best for Zachary; this gives me comfort and pleases me. I have said all along that we are in the right hands and I continue to feel that way.

Zachary takes a medication to help prevent his body from rejecting the new stem cells (cyclosporine). On Thursday evening I started noticing that he was shaking with slight tremors, what looked like very mild little seizures, and constantly blinking and squinting as though he either couldn’t see or he was having headaches. This continued on Friday while we were in clinic. After receiving a blood test that determines the levels of the drug in his system it was determined that he was toxic and the levels were too high. We skipped the two doses on Friday and lowered his dose starting this morning. The symptoms still continue but are definitely less. This was scary and I was thankful that we had an answer to what was going on and how to fix it. Now, we have to wait for his body to adjust.

Through all of this he continues to eat well, sleep well and smile through all the moans, although he is making us work for them a little more lately. He has taught me so much about life, about myself and what is important. Each moment, each breath we take is a gift.

The emotions in the house have been on high today as we all prepare for Mom and Dad to go home in the morning. Mom has given us the ability to be there for Zachary and know that Sydney was always in good hands. Mom, during such a difficult time, you gave me the comfort of knowing that my sweet Sydney was in good hands and that eased my mind more than you will ever know and allowed me to focus on Zachary’s fight. Thank you both so very much, I pray that you return home safely and know how very much we love you and will miss you.

Sydney is doing well. She has had a few meltdowns today in regards to Nana leaving and the concern that she will be alone. As we discuss how very special she is and how we will always be here or have someone here that will take very good care of her, I find myself afraid. She feels as though Kiska left her (she continues to be unaware of his passing) and now Nana is leaving. I want to be able to take care of both of my children and be there for both of them. Unfortunately, she is not able to go to the transplant clinic with us so we will find someone to watch her on these days. We went to get some crafts that we can enjoy doing together while Zachary naps; this will give us special time together as well as keep her quiet for him to get his rest.

I continue to miss our sweet Kiska and have been brought to tears many times this week as I have heard stories about him from people that he touched. He had a very special personality and he will be very deeply missed. He taught Max and I what it was going to be like to love our children so deeply it hurt, how to be patient, be proud, and what it was going to be like to be a parent. He is part of the reason we are who we are today.

My heart is full of appreciation for all that everyone has done and continues to do for us. We have been touched by so many people on our journey and I am so very thankful for that. There are things in life that show you who you can count on and who will be by your side regardless of the situation. I believe this journey has taught us that and much much more. God bless you for walking the roads of our journey with us through all the bumps and the turns. Your dedication, prayer, and support have helped us through so many dark times and continue to help give us the courage to fight forward.

We will win this battle, but it will take perseverance, determination, courage, and one step at a time.

May God bless you and yours always!

Wednesday, August 18, 2004 7:35 PM CDT

Day+140

(Stacy's legion of fans will have to wait, Max is writing tonight)

Zachary continues to amaze us with his calm demeanor and open spirit.

He went through 24+ hours of no food (other than pedialyte), magnesium-sulfate, IVIG, an enema, and an endoscope with a smile and a laugh. The doctors commented that they probably didn't need to use anistesia for the endoscope, but gave him just a little to be safe. He had his monkey, so he was happy. Our doctors were there to support us and make sure Zachary got everything he needed to be cared for. Thank you Transplant Team - we love you.

The results from the scope are still in question. His colon was "friable" and bled easily from taking the biopsy sample. However, there was nothing evident enough from the camera to know if we are dealing with CMV or GVH. Results should be forthcoming by Friday or Saturday. In the meantime he keeps up with the increased doses of steroids (in case it is GVH), IV magnesium, and now 3 straight days of IV antibiotics to treat any possible infection that could have resulted from today's scope. On top of the oral medicines he takes.

Now for our beloved Kiska:

We bought him on April 19, 1995, in Albuquerque, New Mexico. He was our first dog/child and we treated him like one: sleeping indoors, his own bed and pillow, weekly trips to doggy day care (he was almost a straight A student), a favorite stuffed animal, hugs every morning, and even the occasional time-out.

He lived with us through 4 moves, 2 children, lost and found twice, trips to the beach, walks in the mountains and mesas, and a rattle snake bite.

Maybe self protection, but when I left him in St. Louis to return to NM with my mom and step-dad, I believed it would be the last time I would see him. I remember giving him an extra hug so I wouldn't want for it later. I'm mostly sad that I could not be there with him to hold him and guide him through his final moments. Thank you, Wilbur, for giving him the comfort and love he needed at that time. You and mom have been everything he needed during his last months of life. Thank you!

See the Photo Album for pictures of Kiska.

May God continue to bless you and yours!

Tuesday, August 17, 2004 4:03 PM CDT

Day +139

There are so many emotions that we have been dealing with the past week. Of course, Zachary’s condition which is always on our mind, my Mom leaving on Sunday and the one that weighs heaviest on my heart at this moment is the loss of our beloved Kiska (our dog/first child).

We have been spending a lot of time in clinic lately with Zachary; the bowel movements have not gotten any better despite all of our efforts. His temperament is absolutely amazing: he is happy, active and progressing forward. If it weren’t for the numerous bowel movements, a rash that would make anyone cry and the many hours that we spend at the hospital, everything would be good. His blood counts are also coming back looking good. To give the doctors, as well as ourselves, the answers that we are looking for, Zachary is going to have to have an endoscope done in the morning to rule out GVH (graft vs. host disease) and determine the nature of the problem as it relates to his gut and the numerous blood tinged bowel movements that he is having. We do not expect to have a definitive answer tomorrow, that will take a few days, but we do hope to have a good idea of what everything looks like. He is currently on clear liquids and has been since this morning, which he is tolerating quite well considering he has been given high doses of steroids the past few days to cover him for whatever may be going on. I pray that we have answers to help his body heal and continue on the road to recovery. Thankfully we have some of the best doctors and nurses looking after him and I know that he is in good hands.

My Dad will fly in this evening to take my Mom home on Sunday. I can’t ever thank them enough for all of their help. Emotionally they have been there to see us through the hard times and it has been a great comfort to know that Sydney is always in good hands when I am tending to Zachary’s needs. I am so very sad to know that they will be leaving on Sunday, but I am happy that Mom is able to go home and be with Daddy. I can’t imagine being away from home for as long as she has. Mom, you dropped everything for us to be here and I thank you from the very bottom of my heart. We will all miss you greatly.

Now for Kiska. Anyone who knows us knows that this dog was not just a dog, but was truly like our first child. He was a black and white Siberian husky with charming bright blue eyes and an upbeat personality. When Zachary got sick and it got closer to transplant we sent him to New Mexico to stay with Max’s Mom and Step-dad. There he was given the love and attention that he deserved and that he was lacking with us due to our pre-transplant clinic schedule. The concern of infection from animals to transplant patients was also a great concern. Max received a call from his Mom a few days ago stating that Kiska had eaten something and he wasn’t doing very well. We all thought it would pass, then he received another call from his Mom yesterday stating that she was going to take him in to see the vet because things had not changed. It was determined that he was dehydrated, his liver enzymes were elevated and he could have a possible tumor. I was devastated. They were going to keep him overnight, give him fluids and run the blood work again this morning. I guess after the vet spent some time with him this morning he felt like it was probably an intestinal blockage from what he ate that would require surgery. Max ok’d them to do the surgery to remove what they thought was a blockage. Then around 3:00 this afternoon while sitting in clinic with Zachary I received a phone call that turned my heart upside down. After the vet opened Kiska up it was determined that his liver was full of tumors and that we were going to have to make a decision as to what to do. They could close him up and he could have a little longer or they would put him to sleep. We chose for him to be out of discomfort and to allow him to run free in the heavens. Oh, what I wouldn’t give to turn back the clock of time, to hold him, to run through the mesa as we did when he was just a young pup. Our dearest Kiska how he touched and enlightened our lives, we will miss you so much, you will always hold a very special place in our hearts and never be forgotten. I want to thank Sally and Wilbur for taking such good care of our wonderful dog. We are sad that we could not be with him in his final moments, but we know that he was with someone that loved him and he loved you.

Sydney is doing well and keeping everyone on their toes lately. She has a very nurturing way about her. Her dedication and love for Zachary is quite impressive to me. She is also quite a Mommy’s girl lately, which I think has something to do with age and also the fact that I was gone for so long at the hospital with Zachary. She is afraid to let me out of her sight. We will wait to tell her about Kiska; she will not understand and I am afraid it will be more confusing for her. I pray we are making the right choice.

Thank you all for your love, your prayers and encouraging words. We could not keep our heads high without you all by our side and God in our corner.

I will try to update tomorrow night to let you all know the outcome of Zachary’s test.

May God continue to bless you and yours!

Thursday, August 12, 2004 7:57 PM CDT

Day +134

We have enjoyed the wet weather that has blessed us today with its presence. Rain seems to give a sense of peace and calmness and we appreciate each moment of that. We hope each and every one of you are enjoying the summer days, wherever you may be.

Zachary has been in a very loving cuddly mood lately. He has seemed to master a scream that Sydney has so proudly taught him and he is jabbering up a storm. We can’t quite understand him, but we know he has a lot to tell us and the sweet sound of his voice is music to our ears. He loves to hold your hands and walk across the room, his smile and the bounce in his walk tells you just how proud he is of himself and how excited he is to be moving forward with his accomplishments. His sweet smile and wonderful little hugs and kisses warms my heart and I am so proud and thankful for each and everyday that we have with each other.

Unfortunately we have not been able to stick with our once a week clinic schedule. Zachary has required close monitoring by the doctors this week due to low magnesium and numerous bowel movements that are now blood tinged at times. The low magnesium is a result of the multiple bowel movements and is requiring infusions of IV magnesium, which is a 3-hour infusion. The bowel movements, we thought, were from the antibiotic that he was on to treat the positive blood culture. Thankfully, we were able to stop that on Sunday because the second culture came back negative. We were hoping that once the antibiotic was out of his system that the bowel movements would slow down. This unfortunately has not happened. After speaking with Zachary’s doctor today regarding his situation, he let me know that we will be evaluating him very closely tomorrow with an exam followed by the necessary x-rays and tests. I know without a doubt that we are in good hands and that he will take excellent care of our precious baby boy. With that in mind, I am still concerned that the Gut GVH (graft vs. host) disease is going to show its ugly self again. I do not wish this upon anyone and we got through it once, with the grace of God, a wonderful team of doctors and nurses, and all the wonderful people who continue to keep Zachary and our family so close to their heart. I pray we do not have to go through it again.

Sydney is doing well. She is starting to become more and more involved in helping me with the preparation of dinner, which shows her maturing more and more each day. We are preparing her for preschool, which starts in September. She seems excited and yet nervous to be away from everyone. We have discussed our options on this with a lot of people, primarily because putting her in school puts her at risk for getting sick, which then puts Zachary at risk. Through a lot of information, evaluating Sydney’s needs. We have decided to put her in a small church preschool program. We will discuss our situation with the teachers, administrator, and everyone that will be involved in her care, and ask that they keep us informed as to what health issues are going through the school. Then if there is any concern that she may be sick we will try to isolate the two of them from each other, no contact, hugging, kissing, sharing toys, that type of thing. I am so nervous. The easy thing to do would be to keep her at home and have someone come into the house and watch her while we are at clinic. But, when talking with a lot of people and looking at it from Sydney’s situation, she needs this. She needs to be around other children and in an environment away from Mommy & Daddy. I pray that we are doing the right thing and that I am able to give Sydney what she needs while still keeping Zachary safe and healthy.

The adults in the house are doing well. We all seem to stay busy from the time we wake up to the time we go to bed at night. With work, housework, the needs of little ones, clinic visits and the everyday things that need to be accomplished.

I want to mention our Angle donor. I pray that you are aware of how very important you are to us and what a wonderful man I think you are for giving so unselfishly of yourself. Wherever you are, please know that as I watch our sweet baby grow that I think of you and how you helped make his accomplishments possible. God Bless you!

I hope you are all doing well, and I must say I miss hearing from each of you! You have all been so true to us throughout our journey from the beginning; we are so very thankful to you. Please continue to pray that Zachary will recover from whatever is ailing his little body at the present time, that he will not suffer from the treatments necessary from transplant, and that he will be blessed with a long healthy life ahead of him. Thank you!

May God bless you and yours!

Saturday, August 7, 2004 5:17 PM CDT

Day +129

We have had some changes since I last journaled on Wednesday. I received a call from Zachary’s doctor on Thursday morning stating that he had a positive blood culture and that the transplant team was making arrangements to get his Hickman Line removed right away. This led to a trip into the clinic so that they could get another blood culture (to verify the accuracy of the first culture), check his counts for the surgery on Friday morning and start him back on an antibiotic to treat the positive culture that grew back. Although we were excited about having the line removed, I was extremely frustrated that it was being removed because of another infection and that we had to start antibiotics again. He will be somewhat restricted because this is an I.V. antibiotic that is running 24 hours a day for a 14 day course. We change the pump once a day at home. But he is still hooked up to lines around the clock. Not to mention the antibiotic alters his eating somewhat and he has been a little fussy lately. He wants to go and do things, roll over, play with his toys and now he has another apparatus attached. I was hoping that when we removed the Hickman it was going to be under different circumstances and that the port-a-cath would only need to be accessed for clinic visits. This obviously was not the course that was meant for us, so we will wait, pray that the infection clears and enjoy the fact that there is only one line instead of three.

Surgery went well on Friday. He tolerated the procedure without any complications and we were back home around noon. We will hopefully resume the once a week schedule next week without any unplanned interruptions. Now that there is an obvious sign of infection, it makes sense why some of his numbers were dropping. Hopefully, now we will see the infection clear up and his counts become normal again. As I sit and journal he is playing Leapfrog basketball with his Nana, which is one of his favorite past times. This little one continues to impress me and I see a very bright future ahead of him.

Sydney is doing pretty well. She had gym class with Max this morning and then I helped her ride her bike this afternoon. The busier she is, the happier she is. I wish I had an ounce of her energy.

The adults in the house are doing well too; you know how it is, if the kiddos are happy the adults are happy. We are happy!!!

God Bless you all and thank you so much for all of your loving support, kind words, and prayers!

May God continue to bless you and yours!

Wednesday, August 4, 2004 9:01 PM CDT

Day +126

I apologize for the delay in journaling. The honest truth is I am not sure where the time in the day goes lately.

Zachary is doing well, we had a little scare this morning but all is well now. When I went to flush Zachary’s hickman lines, which I do everyday, the area became red and swollen. This led to an immediate call to the clinic followed by a trip in for an evaluation. It was decided that the line was not infected but that it did need to be removed due to the fact the line does not flush and we cannot draw blood from it anymore. Zachary is scheduled in three weeks to have the hickman line removed (the surgeon that placed his lines is currently out of the country and it is preferred that the doctor that placed the lines remove the lines). We will still have the port-a-cath to allow for blood draws and any I.V. medicines he may need in the future, so I am thrilled that we will be rid of two lines that do not work the way they should. Plus, the port-a-cath is only exposed when accessed by a needle, while the hickman line is always evident.

On a day to day basis, Zachary is doing absolutely beautifully. We are going to clinic once a week, which was supposed to start this week, but our trip in today messed that schedule up. So we will start fresh next week. His labs are looking pretty good, there are a couple of things that we are keeping a close eye on, but as long as they stay the same (or improve) we are happy. He currently has five teeth and one more on the way. He is trying to get around on his own and has a very determined attitude, which I am sure is part of the reason he has come so far and done so well. He has learned to cough to get my attention then as soon as I look at him to assure that he is okay he laughs. He continues to progress with hand gestures and sign language, which we do only to enhance communication not because of any concerns around his ability to hear. I told his nurse yesterday that if it weren’t for the lines hanging out of his chest, the visits to the hospital, the many medicines that he receives daily and the fact that we keep him isolated from the outside world we would feel completely normal. He is happy and doing all the things that a growing healthy child should be doing and that is a true blessing in itself.

Sydney is giving Max and I a run for our money. She is a shining star in our eyes and yet there are days when we aren’t quite sure how to handle her. She is on the go 24/7 and has been somewhat aggressive towards us lately. This keeps our emotions on edge, for we only want to do what is best for her. I know some of it is age, other is our situation and the fact that she seems extremely frustrated lately. We are on the road to finding the right answers for all of us and I pray that she knows how very much she is loved. She is one smart little cookie and we really must handle her emotions very carefully.

Max and I are doing well. I stay busy with the kids, the house and work (which I do from home). Max has been extremely busy with work lately, he was gone to California for a few days, and since he has been back he has had a few business dinners to attend. We are both still trying to catch up on the lack of sleep from the past months. It seems like as much as you would like to slow down, relax and take a deep breath, life gets a little crazier. Please do not get me wrong, we are so very thankful for what we have and where we are today. I just feel like we just ran a marathon that we weren’t really in shape for and now it will just take a little time to recover. But I am thankful for the time!

My Mom is still here and I am so very thankful for all of her help. She will be headed back to New Mexico the third week of the month. She has been here for 6 months straight and I do not know how we would have done this without her help emotionally, physically and spiritually. When God granted me a Mom he definitely picked an angel for me. I will miss her greatly when she leaves and yet I know it is time and that we will all be okay. Thank you Mom for everything.

One last thing before I go, my heart has been saddened this past week by the news of a very dear person whom I have known for a long time and who is very dear to my heart. He was recently diagnosed with a brain tumor and it showed as being cancerous. He has had surgery, which removed 70% of the tumor, and they have opted to do chemotherapy and radiation treatment to get rid of the rest. Your many prayers have lifted us up and given us much support during the hard times. I ask that you please pray for my friend and his family. Pray for strength, healing and support as they embark on a very challenging time in their life.

Last, but not least, we thank you for all of your support, your dedication to our family through prayer and through friendship. We are so very blessed to have each of you in our life.

May God bless you and yours!

Thursday, July 22, 2004 9:36 PM CDT

Day +113

We started the morning with an unexpected phone call from Zachary’s Doctor. It was nice to pick up the phone and hear his voice on the other end of the line. He is a sincere, genuine man and I am so thankful that he is one of Zachary’s doctors. I have a great amount of respect for him. He called to check on Zachary, wish him a belated Happy Birthday and to give me the results of the bone marrow aspirate. The news was music to my ears;

Chimerism 99.3% ideal: 100% (previously: 99%)
Cellularity 50% ideal: 60 to 70%

*3 to 1 white cells to red cells
*There are still signs of the HLH being present, but when compared to the last aspirate there is slightly less HLH activity and when compared to the first aspirate he said there is a definite difference.

He felt very positive that as we taper the medications that these numbers will improve. As I told him, this was the best news I could have heard today. We are definitely moving in the right direction.

I feel as though things have turned a corner, Zachary is doing beautifully, Sydney is getting back into a routine of having us at home, and most of all we are feeling a little more like a normal family.

Zachary is just amazing: his determination, his independent spirit and excitement for life is enough to make anyone smile. He wakes up in the morning with a big warm smile when you walk in the room, lying in his bed he starts kicking and laughing with cheer that you are with him. The rest of the day only gets better, watching the love between him and Sydney, the amazement and excitement shown by each of them with each new accomplishment. Zachary has started to give kisses; you know the ones, the wet, juicy and never ending slobbery ones. I wouldn’t trade them for anything. He has also started to have a high pitch shrill when Sydney has one of his toys or she is eating cheerios. Thankfully, Sydney is a very generous little girl and she loves to make her baby brother happy.

Does life get better than this? I’m not sure, but right now I know that I am so very thankful for where we are today and what we have conquered as a family over the past 10 months. Thank you God for being there to show us our direction, for holding our precious baby in your arms when we were unable to, and for continuing to hold our hand and lead us to victory.

A huge thanks to all of you, we love you and are grateful to you.

We have added new pictures from Sydney’s Big Sister Day and from Zachary’s Birthday. We hope you enjoy them as much as we have.

May God continue to bless you and yours!

Wednesday, July 21, 2004 8:57 PM CDT

Day+112

As I woke up this morning and reflected on the past year, I felt a great sense of accomplishment for our family and most of all for Zachary. It has been a year of perseverance, struggle, enlightenment and love; I would not want to relive these moments and yet I would not trade them for anything. It has opened our eyes to so many things and given us strength that we never knew existed, not to mention all the wonderful people that have come into our lives. Thank you all from the bottom of my heart for being there with us through each and every moment, having your breath taken away as I wrote about Zachary’s struggles, accomplishments and most of all his milestones on his journey.

Today Zachary turned one year old and I am in awe at the child that he is and the love that he has for everyone. He is a true miracle in every sense of the word and I am extremely honored that we were the chosen ones to see him through this journey.

We spent the day as a family enjoying decorating the house with birthday ornaments and cooking a very special meal. My Dad flew in last night to celebrate this wonderful day with us and, of course, to see Nana. After Zachary took a long midday nap he woke up in a wonderful mood and ready to celebrate the day. We had a wonderful dinner, cake and opened presents. Sydney and I made Zachary a special birthday cake last night that our nutritionist found for him. He was interested in touching it, placed a little in his mouth but was not overly impressed and really preferred not to have his little hands dirty. He actually preferred his cheerios to his cake. The way I looked at it is whatever he wanted, I feel like he has earned it. He received many nice gifts and got some great little toys for boys. He tried to open them and enjoy the toys himself, but he had a little more help from his big sister than I think he really wanted. He tried to move her out of the way a couple of times to get to what he wanted. It will be interesting to see who ends up being the dominant between the two of them. It was nice to watch him and see his excitement with the different things that he was experiencing. If only all of us could look at things as a child does, boy wouldn’t the world be a different place.

Zachary had a clinic visit yesterday and I am feeling more and more at ease with each visit. He is off the IV nutrition and we are continuing to taper his medication so far without any problems, Amen! When speaking with the nutritionist, she said Zachary is the size and length of an averaged size 6 month old. This is not a concern because he is properly proportioned and is taking in all the calories that he needs. His body will start to catch up as he is off his medications and continues to eat. He continues to learn some sign language and is progressing in every way necessary. We still do not have any reports of the bone marrow aspirate, I am in hopes we will have something in the next week or so.

Sydney is showng so many signs of maturing and it makes me so proud. I was holding her and Zachary last night in the rocking chair before bed and it was as though they were the only ones in the room. As she held his face in her hands and as they looked into each others eyes she proceeded to tell him that he was going to be just fine, because they have a lot of things that they still need to do together. He gave her a little smile as though to agree with her statement. Of course I am sitting in the chair rocking the two of them with tears in my eyes and my heart just melting.

Nana has been helping me with some projects that I have fallen behind on in the house. Mom, thank you so much for all you have done and continue to do. I love you and Daddy so very much and I am so thankful that you are my parents.

We have been touched by the continued generosity that everyone continues to show to Zachary and the rest of us. Your love, prayers, support, and gifts are very much appreciated. You have all been so diligent in your dedication to us on this journey; I ask that you please continue to pray for the continued recovery and health of our precious baby.

One last thing: I want to mention Zachary’s donor and what a remarkable man I feel you are. You gave of yourself in order to give our baby a second chance at life; words will not ever be able to adequately show our genuine appreciation. But whoever you are and wherever you are, please know that you hold a very special place in our hearts and I pray that God is watching over you and your family.

Happy First Birthday sweet little one, may you have many wonderful days, months, then years ahead of you.

May God continue to bless you and yours!

Thursday, July 15, 2004 10:35 PM CDT

Day +106

Life is starting to feel a little more normal and that is a refreshing statement in this house. Everyone has their summer smiles :) and is enjoying being under one roof.

Zachary is doing amazingly well. He is growing by leaps and bounds, so much so that we are looking to be able to get him off the I.V. nutrition next Tuesday; the day before his one year birthday. He is happy, sleeping well, and absolutely loves his big sister. There isn’t anything I enjoy more than to watch the love that the two of them share and the fun that they have together. We have been making plans for a family Birthday party for Zachary’s first birthday. I can’t believe that he is going to be a year old and all of the amazing things that he has accomplished in his little life already. Looking at him and thinking about how we have spent the better part of his baby years in the hospital makes me sad, and yet I am so very proud of what we have overcome thus far. I look forward to many wonderful years of watching him grow and challenge the world.

We will have been in clinic 3 times this week, including tomorrow, doing blood draws, exams, routine chest films, and lasex to help with the fluid overload that he has been dealing with. We have started to taper off the steroids (this will be a very long process that will take months) and he will be off the antibiotic on Saturday for the infection that we have been treating. I pray that everything is well and he does not spike another fever. Zachary is continuing to go through the teething process; he currently has 4 teeth and is in the process of getting two more any day. He is definitely playing catch up. We have been working with him on baby sign language. So far he has learned “more” and it is usually when he is eating cheerios. He is definitely finding his voice and it is a joy to my ears to hear his fun little screeches and silly little laughs. When I look into his eyes I feel so honored to be his Mommy and to be touched by the true miracle that he is.

Sydney is doing beautifully; she is starting to adjust again to our schedule and having us at home. It hasn’t stopped the 3 ½ year old tantrums that seem to occur out of the blue, but at least I know that she is developmentally doing what is appropriate or, at least, that is what I have been told. We had some very dear friends over today to play in the backyard, this made Sydney’s day and it was nice for me as well. The children played and then had a picnic. It was such a wonderful treat. Meanwhile Zachary was in the house having quality Nana time. They know that we cannot have anyone in the house because of Zachary’s situation and the importance of everyone being healthy that we are around. Thank you for being such supportive friends for all of us. Sydney was so endearing tonight with Zachary while I was getting him ready for bed, she kept hugging him and telling him how much she loved him and misses him when he is gone. Meanwhile, Zachary is smiling through and through and loving every minute of his sister’s attention.

I am doing okay. I have been very emotional lately; I think the past few months and being so on top of everything is starting to catch up with me. When I look back on all that we have had to endure as individuals as well as a family it is overwhelming. I worry at times about what our future holds and if I should be concerned about HLH as it may or may not relate to Sydney. When you deal with something like this you are watching every move, every bruise, you react to every fever even if it is slight. I have a lot of questions and being the person that I am, I look for the answers to my questions which can sometimes be a little overwhelming. I pray God will continue to bless us with his presence and I know whatever we are dealt in our life he will be there to guide us in the right direction. In the meantime, I am thankful for where we are and I am thankful for the love that continues to surround us.

Thank you for walking this journey with us and being so diligent in your prayers for our family and our precious baby boy. Please continue to pray for Zachary’s continued recovery, that he will tolerate the decrease in medications without the GVH reoccurring and that he will not have any of the side effects that are a risk of the transplant and the medications that were used.

May God continue to bless you and yours!

Saturday, July 10, 2004 7:58 PM CDT

Day 101

July 10th, Big Sister Day

What a wonderful day for everyone. It started with our typical Saturday morning, which is taking Sydney to her Gymboree play day. Unfortunately her best-friend, Matthew, was not there to play chase with. I did my best to impersonate Matthew; it was a valiant effort, but I think Sydney was left a bit dissatisfied. We still had fun.

By the time we got home Stacy and Zachary had returned from Zachary's clinic visit where they were really only there long enough to get his blood drawn. I've found that the less attention you get from the doctors the better: it means you are doing well. We all look forward to strictly social visits.

Stacy and Nana had the kitchen decorated in bright and soft pink colors in balloons, table clothes, plates, and general decorations for Sydney's arrival. It looked beautiful. The phone began to ring with many people calling to wish Sydney a Happy Big Sister Day. Sydney got a dress, a necklace from Zachary with "BIG SIS" imprinted on it, and her first bicycle. She hasn't stopped talking about riding the bike and she was a natural. Many of our neighbors saw Sydney today, wished her a happy day and gave her gifts and cards, which made her feel even more special.

We finished the afternoon with a trip to the ice cream store where Sydney got her favorite, Rainbow Sherbert.

Thank you for being a part of Sydney's special day!

We have added new photos. Story behind the Monkeys: Before Zachary was born Stacy found the Ty Monkey at the mall and knew if we had a boy she would buy it for him. Leading up to his transplant he loved to cuddle his monkey putting it right into his face; he couldn't sleep without it as it replaced his binkie for consolability. As you know, entering transplant he couldn't be exposed to anything dirty, so we obtained 8 matching monkeys and traded them out once to twice a day replacing with a newly washed monkey. We're not sure how we would have made it without them.

I hope you are enjoying your summer and that God is shining brightly in your life.

May God continue to bless you and yours!

Friday, July 9, 2004 9:43 PM CDT

Day +100 (It is so refreshing to see this number progress to triple digits, Hooray!)

We are home and enjoying every minute of it. We were released from the hospital on Wednesday late afternoon after Zachary’s sinus ct-scan and bone marrow aspirate. The ct-scan was done to see if his sinus cavity continues to be blocked and the bone marrow aspirate is the 100 day aspirate that is done to check a number off different things; including % of engraftment and hystiocyte activity. He did beautifully through everything, he did the ct-scan without any sedation and then we went to the Pediatric Intensive Care Unit where they sedated him for the bone marrow aspirate. We were then sent home that afternoon.

Zachary is doing well. I say that with my fingers crossed because the last thing I want to do is jinx us. He is also enjoying being at home and back in his bed. We came home on one IV antibiotic that I change out daily and we were able to reduce the TPN (nutrition in a bag) to 18 hours a day from 20. Everything so far has been very manageable. He decided at 2:30 this morning that he wanted a bottle and he has not stopped. I felt like all we did today was feed him. The bottle is a big thing for him because ever since he was intubated he had stopped taking a bottle and we were giving him this special formula with a syringe or a straw. He is a determined little one and he knows what he does and does not want, and thankfully today he wanted to eat. He must be ready to get rid of the IV nutrition as much as we are. He has enjoyed playing with Sydney, eating cheerios and long morning naps at home. We will have a clinic visit tomorrow morning where we will get the results of the ct-scan and Zachary will have his blood drawn to check his counts. I pray everything will look good!

As for Sydney, I am enjoying seeing her sweet little face everyday and hearing what it is she is coming up with today. She has shared with us recently how much she loves Zachary when he is at home, but that she does not love him when he is in the hospital. When discussing this with her and explaining that she should love him just as much when he is in the hospital than when he is at home she replied “well isn’t that when God should be loving him more.” Her little mind is always working and I am glad that she is able to express her feelings. I believe I had mentioned that we were going to be picking a special big sister day for Sydney to celebrate every year, as we will celebrate Zachary’s transplant day every year. We have chosen July 10 as “Big Sister Day”; Sydney will receive a special surprise (her first bike), we will decorate, and have a nice dinner and cake, all in her honor. Tomorrow will be all about her and she is so excited!

We are all enjoying being together. God has blessed our life with many loving and supportive people who have been in our corner through good and bad. I am so very thankful for each breath we take, for every hug we are able to give each other and for each beautiful day.

May God continue to bless you and yours!

Monday, July 5, 2004 10:21 AM CDT

Day + 96

We feel like we are a yo-yo on a string. Zachary was admitted to the hospital on Thursday then discharged on Friday. But, apparently there is something about the hospital that Zachary just can’t stay away from (I think it’s the attention from all the pretty nurses) because we were readmitted yesterday (Sunday).

Yesterday morning his legs looked a little more pale than normal, which can be an indication of low hemoglobin (red blood cells), plus he spiked another fever (101). The fever could have been explained as teething, but the combination made us a little nervous. To be proactive we brought him to the transplant clinic for a once over by the professionals. Upon arrival it was learned that overnight his blood cultures from last Thursday had grown positive for a staff infection. A staff infection of the blood when treated quickly can be relatively simple because it only requires the antibiotic Vancomyocin (sp?). Here’s the tricky part: because it’s a blood infection the logic is that the infection sourced through one of his three permanent ports (double-line hickman and a portacath), so the vanc. is rotated every 6 hours through each port over potentially 14 days. We could treat the vanc at home, but our schedule would be something like this: meropinim (sp?) antibiotic (for sinus infection) every 8 hours, TPN and lipids (fluid nutrition) 20 hours each day, and vanc every 6 hours rotating to each port. So, considering all the support required, coupled with Zachary’s prior negative reaction to vanc, it was safer and smarter to have Zachary admitted.

While Stacy was confident that the hospital was the place that Zachary should be when starting the vanc. antibiotics, I must admit this was not as easy for me even though I know it was the right decision. I am so anxious to start seeing the signs that life is progressing toward normalcy that with each setback I feel frustration and disappointment; not just for me, but mainly for Sydney. She is missing out on so much that makes being a 3 year old fun: running with friends, getting dirty, going to the beach, and having a runny nose without feeling like the Center for Disease Control is spiraling down on her. But, this is not the path that God has chosen for us today. I believe our, and her, day will come but we will follow His path as we know it and do our best to provide for Zachary and Sydney.

The good news is that I am off from work this week. It is a much needed break and I am glad to have it. The people that work for me are probably glad as well. Many of them read these journal entries, so if you work for me and are reading this – get back to work!!!! :)

Last night I left the hospital early and took Sydney to see the fireworks. We got some ice cream and celebrated the day with a few hundred fellow Richmonders at a public fireworks show. It was nice to spend time with her and I think she enjoyed it as well. She even remembered when we went last year; wow, what a memory she has. When she becomes an adult I’m sure she’ll remind me of all my goof-ups and bad habits. I look forward to that day!

Today Zachary is doing well. The fever has not returned, he slept pretty well last night, and he is getting the medicines and care he may need. So, we will watch him for the next few days and if he continues on a positive path, we may be able to switch antibiotics that could be easier to treat from home. Plus, he is scheduled for a CT scan on Wednesday to get a better look at his sinuses.

Here’s hoping you have a great day.

May God continue to bless you and yours.

Thursday, July 1, 2004 9:33 PM CDT

Day +92

WBC 25

It has been a long time since I have journaled, I apologize for that. The truth of the matter is that home and out-patient clinic life has been extremely hectic and I am ready for bed when the little ones go to bed. Unfortunately, the reason I am able to journal right now is because Zachary was readmitted into the hospital today with 102.5 fever that spiked this morning.

Our time at home although busy was wonderful: watching the love between Sydney and Zachary; seeing Max walk through the door in the evening looking relaxed and happy; having my Mom here to continue to help make our life more manageable and to cuddle the little ones when one is jealous of the attention that he/she feels they are lacking; being together to love, laugh, cry and scream (which Zachary is learning to do) is what family is all about.

Zachary was doing great up until this morning, how quickly things can change in this situation, and with a little one. He has been eating, sleeping, playing and teething just as he should. Then, after breakfast this morning and after saying Nana for the first time (my Mom melted to hear those sweet words from his mouth), he became lethargic and felt hot. I took his temperature and headed straight to clinic (we were already scheduled to be there for a blood check and exam, so we just came in a little earlier). Zachary’s outpatient primary nurse is excellent and was on top of everything that he needed. It has been determined that his sinusitis has crept up again. We were admitted to start the antibiotics and monitor him to ensure his safety and health before we start the 6-8 week course of antibiotics through IV at home. We pray that this will be a short, uneventful stay.

Sydney, so far, is handling the transition back to the hospital pretty well. I think she is happy to have her Nana back to herself for a little while. She is so much fun and has such a fun sense of humor. I have enjoyed being able to see her smiling face and get her warm little hugs daily. Her motherly instincts have definitely shown through the past week while Zachary has been at home; she lets us know what he does and does not want. Unfortunately some of the things he doesn’t want he needs and that adds to an explanation to her as to why he must take his medicines, which follows with her explaining to Zachary how important it is that he takes his medicine so that he will get better. She is just an amazing little girl in my eyes.

Eleven years ago today Max and I were doing our bachelor party and bridal shower before our wedding on the 3rd of July. I knew that I was embarking on a remarkable and amazing life with the most wonderful man that I had ever met. What I didn’t know was the direction life would take us on, and I am thankful for every moment, happy, sad challenging and frustrating; I truly believe that we are very fortunate to have been given such a blessed time together and I look forward to what our future holds for us with our children. I look forward to growing old with the man who is always there to be a wonderful Dad, loving husband and support us in our journeys of life. Sweetheart thanks for standing by my side, holding my hand and choosing me as your wife. I love you!!

Last, but not least, to all of you who continue to pray for us, keep us in your thoughts and cheer us on, you continue to inspire us. When I read your journal entries it brings me to tears to think of how many people keep our precious baby and his family so close to their hearts. I want to thank you from the bottom of my heart for taking this journey with us and staying steadfast in your prayers for us.

One last thought, Zachary’s doctor said today that the last time we were in we hit the guard rail, this time we have just hit a pot hole and my thought was what doesn’t break us only makes us stronger. With your prayers and God in our corner we will continue to overcome and win this battle. Thanks again for cheering us on!

May God continue to bless you and yours!

Sunday, June 27, 2004 8:35 AM CDT

Day + 88

WBC 7.4

A very quick note to let you all know that we got home on June 24th. We told the doctors that we weren't going to stay a day over 7 weeks, so they were forced to release Zachary. :)

The return home has been remarkable. Sydney has adapted very well (only a few big meltdowns); Zachary continues to smile and play; and Stacy is relaxed and happy. The most important people in my life are back under one roof, and this makes me very happy.

There are new pictures in the photo album. Take a look and say a prayer of thanks to God for placing these wonderful people in our lives. God blessed them with the abilities to give us and Zachary another chance at life. We will never forget you!

May God continue to bless you and yours!

Wednesday, June 23, 2004 4:27 PM CDT

Day +84
WBC 6.6

It looks like we are homeward bound tomorrow; as long as nothing unforeseen takes place. So needless to say, we are all planning and preparing to make our transition to home as smooth as possible for everyone. We have asked that the home health needs be set up tomorrow while we are still in the hospital, instead of when we get home, which was a nightmare last time we went home on IV’s. I am so ready to be at home and back into somewhat of a normal life, or at least what is normal for us and yet I am scared at the prospect of leaving the security of the hospital environment and the concern of Zachary getting sick again, and us having to be readmitted.

We received wonderful news yesterday regarding the chimerism test that was done on Zachary’s last bone marrow aspirate (about 10 days ago): Zachary is 99% engrafted with donor cells, which is excellent news for obvious reasons. The aspirate is much more accurate than the blood test that was done a few weeks ago that showed 100% engraftment because it has a +/-7% margin of error. Hooray, Yippee, cluck, cluck moo moo and a cock a doodle doo! Can you tell we are a little bit excited?

Zachary is doing great; despite the fact that he has 3 teeth all fighting their way in at the same time. He has stopped taking the bottle for the time being, but this does not seem to be something that the doctors are concerned about; due to the back up nutrition that he has with the IV. Max and I have been concerned that the GVH of the gut is going to creep up again, but we continue to be reassured that it more than likely is only his teeth and once that is better he will start eating again. I feel like I am a first time Mom, dealing with teething, but I nursed Sydney the entire time she was teething and she always nursed more so the whole bottle thing is new to me. Zachary has also been somewhat fussy lately, but that is also to be expected considering what his little gums look like. Despite all of this he still manages to give that loving smile and gentle touch of affection. His blood counts are also looking really good, but despite all of this you cannot help but worry about all of the “what ifs” and watch for every little sign of what could be. He has come so far and the last thing we want to do is take a step back

He currently has about 4 hours where he is off IV’s all together in the afternoon. We spent yesterday afternoon playing on a play mat on the floor and then I placed him in a little lego wagon and pulled him around the room. We had a great time and that excited little smile just made my day. He has started to raise his hand and say hi with a big gleaming open mouth grin (showing 2 little teeth on the bottom). He is such a playful little one and just a blessing each and every moment. I have taken a lot of pictures the past few days with the hopes that we can add them for everyone’s viewing pleasure soon.

Sydney is doing beautifully; she is becoming quite the little lady. There are times when you are talking with her that you feel as though you are talking to an older child. She is taking on the definite girl traits ie., my hair isn’t pretty, wanting certain clothes and certain shoes. God help us all when she hits her teenage years. Mom said they were in the backyard yesterday and she was standing on a tree stump in the back singing as though she was performing for a group of people. She is our little sweetheart who brightens our days, and makes us strive to be better parents.

I feel a great sense of peace, comfort, thankfulness and enlightenment as I write this journal. Peace, because of where we have come from, where we are today and the miracles that I have witnessed along the way. Comfort, for the continued support that we receive regardless of the news that we have given. Thankfulness, for all the wonderful people that have shared in our journey, prayed with us, cried with us and rejoiced with us. Enlightened, because this journey has opened our eyes for many reasons: it has taught us who we can always count on to be there with us through the difficult times and rejoice with us in the best of times; friends and family; and who is always in your corner. You learn how very precious life is, as Max’s cousin Sally wrote in our guestbook at one time “Life is not measured by the number of breaths we take but by the moments that take our breath away”. We are a witness to how true this very statement is.

Thank you, many times over for all that each and every one of you do in devoting your precious time to share in our journey with us.

May God bless you and yours!

Monday, June 21, 2004 12:46 AM CDT

Day +82

Zachary is 11 months old today!

I hope everyone enjoyed a wonderful weekend and enjoyed the day with the Father in your life. Well, for ourselves, we enjoyed time at the hospital with Zachary and then Max and myself took Sydney to an amusement park for a few hours yesterday afternoon while Zachary had quality Nana time. It was exactly what we all needed, especially Sydney. She had a glow and smile that was delightful to see, she had an afternoon without worry and that is what we all needed to witness.

Zachary is doing amazingly well. He has started taking the specialized formula that they have placed him on and is actually starting to like it as long as we get the temperature just right (not to hot and not to cold, one would think he is taking after Goldilocks in the Three Bears). We are striving for 34 ounces a day and right now he is taking anywhere from 11 to 14 ounces a day, as you can see we have a ways to go but every ounce is progress for him. He is still gleaming with smiles and full of excitement. We are working on crawling and he thinks it is the best thing to stand up (with help) and bounce up and down. I feel so much joy and a true appreciation when I watch the delight and amazement in his eyes, especially knowing what he has had to endure to get to this point. God has blessed us with this “little miracle” and I do not take one minute that I am with him for granted. We are still making strides to try to get out of the hospital and home by the end of the week. It will depend on how well he continues to eat and how well he adjusts to taking all his medicines orally. We are ready to be at home, but I want to do this in the right time for him. As we have said all along: slow and steady, slow and steady!

Zachary and I did an interview with Channel 12 News here in Richmond last Thursday that will air some time in July. He loved being in front of the camera and having all of the attention. It is a news piece that is being done about umbilical cord blood donation and how it can be of help to many. Although we did not use Zachary’s cord blood for his transplant due to the nature of his disease, we have saved it. We discussed the transplant benefits as it would have related to Zachary if he would have had a cord blood match and also the fact that we would save it again if we had another child. Donating the cord blood is another way to help save a life if you are not going to store and save it for your loved ones. Many people are not aware of this and this news piece (and journal) is a way to bring awareness to the public. Although Zachary could have benefited from a cord blood donation, God blessed us with a wonderful man who gave of himself in order to give our precious baby more time in the world and for that we are forever thankful.

I want to thank each of you who so dutifully check in on us and continue the uplifting prayers. We are thankful to have you all with us on this remarkable journey. I also want to thank those of you who have made donations on Zachary’s behalf to us and to Caringbridge; the many uplifting cards, gifts, calls of encouragement, and offers to help in any way necessary. You have all helped us through a very challenging time and we can not thank you enough for all that you have done and continue to do.

May God Bless you and yours always!

Tuesday, June 15, 2004 5:51 PM CDT

Day +76

WBC 10.4

We are still here, I am sure you were beginning to wonder where we have been. Well, Zachary and I talk about the beach and the fun we will have playing in the sand with Daddy and Sydney one day. Unfortunately, a vacation is not going to be happening for us any time soon. So instead we sit up high on the 10th floor of the hospital and we talk, we laugh, we dance, give each other lots of love and we enjoy every moment that God has granted us with. Because we know that as we spend each moment together it is heaven sent and it is not anything that should be taken for granted.

There is really no other way to describe Zachary other than to say he is simply amazing in my eyes. As I journal he is sitting in his swing and doing everything in his power to sit himself up. He has attempted crawling this afternoon and does it all with a huge smile as he looks at me for approval and the applause he so rightfully deserves. He is trying to talk; he is constantly expressing himself which is music to our ears. I believe I have said before that when you look into his eyes they tell a story and he is now trying to express that story to us. I look forward to hearing his opinion; he is a baby with a mature soul. For a normal baby that has not spent 3 months of his life in the hospital, had chemotherapy, a stem cell transplant, GVHD and been on a ventilator for 12 days just a week ago, these accomplishments would be normal but for Zachary they are huge because he has turned around so quickly and is making strides with determination to do all the normal baby accomplishments. To top it off he now has 2 teeth and 4 that are trying to come in, and yes he is also doing all of this with a smile.

Just when we get so wrapped up in how well he is doing, he gives us a reality check that brings us back to the fears of all that he has gone through. He gave us a slight scare last night, his oxygen levels dropped and he was screaming in discomfort. Crying is not his temperament let alone screaming. The nurses came in to evaluate him, and determined that he was fluid overloaded. With the help of suctioning, medicines to rid him of extra fluid and aggressive respiratory physical therapy he calmed down and settled for a long nights sleep. This is the reason that we are still in the hospital, although over all he is doing well. There are still issues that we are dealing with that can change everything so very quickly. He is still requiring oxygen support and close monitoring.

We were also told yesterday that the bone marrow aspirate came back showing less hystiocytes present, over the course of the next few months we pray the donor cells will take over killing off all of the bad cells. This was excellent news and definitely another step in the right direction toward health. Amen!

Sydney is doing okay; she is struggling somewhat. We have been in the hospital for 6 weeks this time and she is beginning to think that this is going to be her life. I am sure in her little mind this feels like a lifetime and all she wants is her family back together. We talks about what is going on and I ask her to be patient with us, but let’s be realistic, I am asking a 3 ½ year old to do what sometimes is hard for adults to do. She has had to endure and understand so much at such a young age and I pray that it will only make her a more understanding and compassionate person in the long run. She is such a little sweetheart and I love her and miss her so very much when we are apart.

The adults are all doing well. We continue to accept all the challenges that we are faced with and appreciate all the uplifting news that has come our way the past week. We are starting to again prepare the house for when Zachary is able to come home. A huge thanks to Mom for all of her hard work and love in preparing for that day. We are tired and feel like we have ran a marathon at full sprint. We are ready for some relaxing family time at home.

Your love and support are appreciated more than you will all ever know. Having family and friends in your corner during such a challenging time gives you strength and courage that you never knew existed. Thank you, thank you for your friendship, your love, and your prayers.

May God continue to bless you and yours!

Thursday, June 10, 2004 9:46 PM CDT

Day 71

It has been a wet and rainy day here in Virginia and yet all the rain in the world could not dampen my spirits today.

Zachary was released from the Pediatric Intensive Care Unit this afternoon. So it is with comfort and many smiles that I type this entry. Looking at him you would never know all he has been through the past month. His smile is as bright as ever, his temperament is absolutely remarkable, and his strength is extremely amazing. He is still on oxygen and he is being weaned off some of his medicines. He has started taking the formula that they have placed him and is doing great with it. I continue to pump with the hope that I will be able to nurse him again, but the way he was biting the bottle tonight with his new little teeth I was quite relieved that it was the bottle and not me that he was biting. OUCH!

While we were in the PICU we came into contact with some amazing people who took care of us. They were very diligent in their care for Zachary and I will be forever thankful to them for getting us through such a rough time during our journey. We have met so many amazing people through all this; people who have inspired us, given us strength when we were feeling weak, a hug just at the right time and more compassion than I ever knew existed. We were so happy to be back on the transplant floor with all the people we have grown to love and yet we were sad to leave some of the wonderful people who have cared for us and have opened their heart to us the past 12 days.

As I spoke with Zachary’s doctor this morning, he was pleased with how well Zachary is doing and said that our goal is to get us out of the hospital sooner rather than later. This was music to my ears since I thought that we would be in here at least 3 more weeks. I am sure it will probably be another week at least but, hey, I am happy with the fact that we are doing well enough to talk about it at this point.

Sydney is doing pretty good. She seems to be struggling with allergies quite a bit this season. Anyone who has ever had allergies knows how miserable it can make you; she has been a little moody lately. I will plan on spending some time with her on Saturday, I can hardly wait. I have not seen her since last Friday and I miss her greatly.

We are honored to be surrounded by such loving and caring people. You have all touched our lives in a very special way. Thanks for taking this journey with us and praying for us so faithfully. We know that with all of your prayers and God by our side we will overcome and win this battle. Thank you so much!

May God continue to bless you and yours!

Tuesday, June 8, 2004 10:19 PM CDT

Day +69

I want to apologize for the delay in jounaling lately; I know what it can feel like to continually check in and not see an update.

It has been a busy few days and so far we are continually taking small steps forward towards health. Zachary was removed from the ventilator yesterday afternoon and is being weaned off the sedation medicines. It took my breath away as I saw the tube removed from his sweet little body. As I stood and watched, I found myself praying that he would do fine on his own, that God would protect him, guide him and give him the strength needed to again overcome all the obstacles that he is faced with. To be able to hold him in my arms again gave me a warm feeling all over, then to be blessed with his sweet smile and to see those big beautiful blue eyes, well words cannot describe my emotions. We will be in the PICU for a few more days so that they can watch him and make sure he is not going to regress. We were told today by his nutritionist that despite everything that he has gone through he is continuing to improve nutritionally. He is not yet on the growth chart but we are getting closer. We thank you Heavenly Father for watching over our precious baby, hearing our many prayers and blessing us with your presence in our lives.

We are all feeling rejuvenated with all of the positive news, and ready to face whatever our challenges may be. It has been a blessing to have Max’s Mom and Step-dad here as well as my parents. Everyone has been able to get a break, enjoy time together and get some projects done around the house. To our loving family, we are so thankful for your support, your love and willingness to help in any way that is needed.

Sydney is doing wonderful; she has enjoyed time the past few days with Grandma Sally and Grandpa B. Her imagination is in full bloom and is a joy to watch. She has a love for helping to cook in the kitchen lately. She is a little gem and true gift, we are so very fortunate that she is in our life and is our little girl.

I wanted to mention briefly our Angel Donor and the fact that this genuine man is never far from my heart or my thoughts. He gave us gift of a second chance, of life. I pray that you are safe and that God continues to watch over you and your family.

It is late and I am feeling really tired lately. Although this entry is short it is sent with much love and appreciation for all of your dedicated prayers on our behalf.

May God continue to bless you and yours!

Saturday, June 5, 2004 2:27 PM CDT

Day +66

It is a cool, wet day here in Virginia and I am finding it hard to believe that it is actually summertime.

I am hesitant to say it but it seems as though we are progressing in the right direction. Zachary is fighting with all that he is and doing an amazing job. The chest x-rays continue to come back showing signs of improvement each day. Although the x-ray this morning showed that there were air sacs in the left lung that had collapsed. This can happen in his situation and when he is in one position for too long. This was taken care of by placing him on his stomach and the Respiratory therapist used a device called a thumper to open them back up; thankfully it worked. The change in antibiotics has seemed to start to work because he has not had a fever in over 24 hours. I am so very thankful for the progress we are making. We started taking baby steps to wean Zachary off the ventilator yesterday. So far he is doing great with it. The goal is to take him off the paralytic medicines this evening and start him breathing on his own. I have been told to prepare myself for when he wakes up because he may fight the ventilator and be extremely agitated. This will be hard to watch but I pray that Zachary will have God’s comforting hand guiding him through this process to allow him a sense of calmness. They have also started to feed him through a feeding tube to allow his stomach the opportunity to adjust to formula and see how he does. It is a very small amount every hour, but it is a start in the right direction. His lab work the past 24 hours has also been coming back really good. Our prayers are being answered, thank you God!

As hard as this was I went home to stay the night last night. I was informed that I needed to get a break before they started weaning him off the ventilator and he started breathing on his own. Because it would be a long hard process and they knew at that point I would not leave him. So Mom was kind enough to watch over Zachary while I went home with Max and Sydney. I knew he was in the best of hands and that she would protect him with all that she is. Trying to enjoy my time with Sydney and Max I continued to wonder how he was doing, what his oxygen level was, how his heart rate was. I found myself longing to touch him and to see his beautiful little face. Do not get me wrong, when I am with him I am missing my sweet little girl as well and wondering what and how she is doing. Thankfully with my Mom here I always know that between her and Max our little ones are always in good hands. As I walked into his room after being gone I was so happy to see his tiny little body and know that we are finally progressing forward. Mom and Dad thank you so much for the love, care and concern that you always show us, I am so very thankful for all the sacrifices that you and daddy have made on our behalf.

As I am journaling the nurse came in to turn the paralytic medicines off. Please pray that this will be a smooth transition and Zachary will tolerate the changes.

Max’s Mom and Step-Dad will be here this evening to spend a week with us. We are looking forward to seeing them. The extra support from family will be a great comfort to us all.

We are also being visited by a very dear and kind friend tomorrow morning who is in the area from New Mexico. We look forward to his visit and we are so very thankful for all of the support that we continue to receive from everyone that is so very dear to us all.

During this journey I am continually humbled by all that we encounter. The support that we are shown from everyone is an amazing and comforting feeling. We know that with all of you in our corner and with God guiding us we will overcome and will win this challenging battle and in the end be thankful for the experiences that we have been given.

Please continue to keep us in your prayers.

May God Bless you and yours always!

Thursday, June 3, 2004 7:27 AM CDT

Day + 64

WBC ?

Quick updates for our team of prayer givers. You have been so diligent in watching over us and asking God to guide us through; we don't like to go long periods without some update.

Zachary is stable again relative to his breathing. Yesterday (starting about 2am) he began to fight the ventilator, so his lungs had to be paralyzed again, his manufactured oxygen was increased to 100% (had been about 40%), and lots and lots of pain medicine to get him calm. So, basically, all of his prior accomplishments were washed away and we started over again. Plus, he spiked a 102 degree fever. Anytime you’re dealing with artificial breathing any change causes significant concern.

Fortunately, I work for a great company and have a supportive team of associates and boss that provide me some flexibility to be with Stacy and Zachary when needed. Thank you!!!!

This whole situation feels like a roller coaster ride that we can’t stop riding.

Proven by yesterday afternoon after a tough night and morning, one of our friends from the transplant team came to give us some good news. On March 31st, we asked all of you to pray for Zachary’s new stem cells to engraft. Through a blood check (called a chimerism (sp?)) it has been confirmed that Zachary is engrafted at 100% donor cells!!!!!

Thank you, God. You heard our prayers and they were answered.

How does this relate to the potential that the HLH is still present? Confusing, I know. Over time, and a few more bone marrow aspirates, we will watch for the new stem cells to overtake the bad hystiocytes officially killing off the HLH. That is the best case and the one we ask all of you to pray for right along with us.

This is our world and our roller coaster and we thank you for riding it with us. We couldn’t make it without you.

May God continue to bless you and yours!

Wednesday, June 2, 2004 7:58 AM CDT

Day 62

WBC 12.0

I continue to hope that someone will pinch me, I will wake up and this will have all been a bad dream. Unfortunately I know this is not a possibility, so I have been doing the only thing I know to do which is a lot of praying.

Zachary has been through so much and continues to show signs of such strength and fight. We have had so many ups and downs the past few days. Just when we think we may be moving in the right direction something else happens to knock us back down. He has proven to be the most courageous and determined child I have ever known and I am so proud that I have been blessed with his presence.

As I sit and journal this morning the tears are pouring from a long and rough night that no parent or child should have to continually experience and yet we are. Let me start by saying that we have had blood tests run, biopsies done, scopes of the lungs, nasal passages and many different types of x-rays. The only definitive test that has come back so far is the CT-Scan of the sinuses; which is showing signs of acute sinusitis. This led to a consult yesterday with an Ears, Nose and Throat doctor. They used a scope to look up into his nasal passages and to do a flush to determine exactly what we are dealing with. All we know right now is that it is not fungal, which in Zachary’s immunosuppressed situation is a good thing because a fungal infection is much harder to treat. He was taken off the paralysis medicines yesterday afternoon to help with some fluid retention issues that we were having and then as the day progressed he was able to do all of his breathing on his own with the respirator used as a back up if he needed help. He did great the rest of the day until early this morning when I felt as though we took many steps back after moving forward yesterday. Again, his temperature spiked, his respirations elevated, his heart rate elevated, and his oxygen levels dipped. As I watched them work on him for over 2 ½ hours trying to give medicines after medicines to help him relax it was decided that his lungs would need to be paralyzed again, placed elevated on his stomach to take the pressure of his lungs, and placed back on the respirator to allow it to do all of his breathing. As I sit and watch him I am thankful that he is comfortable and yet I wish we could consistently move forward. There is so much more that has happened since we last journaled, but I honestly do not have the energy to relive the details right now. All of the steps back we take are draining our energy and causing havoc on our emotions. I want to scream, he deserves better than this and why can’t I do that for him.

The doctors continually tell us to take this all one day at a time. When you know your direction and what you are treating this is not a hard thing to do, but in our current situation that is so extremely volatile it is hard. We would just like a direction, an answer to the reason for his discomfort and most of all a cure.

Sydney is doing pretty okay. She is struggling with not getting to see Zachary and being away from Max and myself. We are trying to be there for her as well as be at the hospital. Thankfully she has her Nana and Papa to give her hugs and lots of love when she is feeling down. Mom and Dad helped Sydney do a recording of her singing and talking to Zachary. I brought it back to the hospital last night for him to listen to. He started to move his head and tried to open his eyes. He knows that it was his sister talking to him and it was so touching to see him respond to her voice on tape. She will be spending some quality time with some very dear friends of ours this afternoon and I am sure she will have a good time. I pray she always knows how very much we love her and how proud we are of her strength and love through all of this.

I long to hold my precious baby, cradle him, cuddle him and make him feel better. That is what a Mom should be able to do, unfortunately at this time I cannot. So I pray that God will comfort him, cradle him and place his loving arms and healing hands on his tired little body. I pray he feels the outpouring of love that surrounds him on this journey. This battle is far from over, I know that, so please pray for Zachary’s healing, for his comfort, and guidance for the doctors to find the answers that will send us in the right direction.

Feeling rather weary and wanting healing for our precious baby we find our strength in prayer and the strength that Zachary continues to put forth.

Thank you for continually keeping up with us and keeping us in your prayers.

May God bless you and yours!

Sunday, May 30, 2004 10:07 AM CDT

Day + 60

WBC 19.1

It’s been 2 days since our last journal entry and things have not improved.

Friday night was my first night to have a sleep over with Zachary while Stacy went home for a much deserved break and opportunity to spend an early evening with Sydney and her mom. It was long in coming and I am so grateful for that night. We listened to music, danced, watched a little tv, and had a few moments just staring at one another while he lovingly rubbed my face and stared at me. I so enjoyed kissing his cute little mouth. I will always remember that moment with him and long for it so deeply.

During the later part of this week he began to show some slight difficulty in obtaining a sufficient oxygen level, which had not been a problem at all thus far. Saturday morning (day + 59) about 2am his oxygen level dropped to the high 70s versus high 90s that was his norm. He was immediately placed on oxygen with a mask and the nurses called for the Pediatric Intensive Care Unit to come examine him. The respiratory therapists were pleased with what they saw and felt the oxygen mask was sufficient to supplement his breathing. Coupled with his low oxygen level was what appeared to be severe cramping in his abdomen, which gave him awful pains and worked against his ability to breathe normally. Pain medicine eased his discomfort and allowed his oxygen to improve. He and I both relaxed and rested again for a couple hours. His cramping and drop in oxygen would appear about every 2-3 hours.

The PICU was called again mid-morning because we could no longer control his pain and his breathing. He was transferred to the PICU floor soon after.

His respirations were ranging in the 80s, 90s, and even 100s and some point, his heart rate reached the 190s and 200s, and his oxygen was not sufficient for his needs. They placed him on a sophisticated ventilator using a mask, but he is so strong and so accustom to fighting that he would not allow the machine to do the work. It was trying to establish a normal breathing rate for him but he was breathing over it, which is when his respiration reached the 100s. There was no option for him other than to intubate and force him to stop breathing on his own with a medication to “paralyze” his lungs. Through all of this we have continually asked Zachary to keep fighting, stay strong, don’t give up, which is what he’s been doing. By intubating, we just asked him to stop fighting and let something else do the work for him.

Of all the difficult days and ranges of emotions, I compare yesterday to the day he was diagnosed with HLH. I pray for the best but the worst creeps into my mind and buckles my knees.

Complicating our emotions is that we don’t know for sure what the problem is. There are some initial signs in his right lung that pneumonia may be building, or there may be viral or bacterial infection. A lumbar puncture (spinal tap), thankfully, all but ruled out spinal meningitis and there were no signs of histiocytes within the spinal fluid, which could have created or caused neurological problems.

As Stacy and I told Zachary’s doctor yesterday, we understand that we have to rule out all possibilities before we can effectively manage/cure what ails Zachary, but we are tired, scared, and anxious for answers. It is unbelievable how draining physically and mentally these past eight months have been. Everyday brings new possibilities; many of them good (like his first tooth, which came in today), but these dark moments take the life out of you. We’ve not been able to really plan our day (or life) because we don’t know what the next moment will bring. For those of you that really know us, we have planned almost everything.

We know that God is guiding us and will provide the answers when the time is right.

May God continue to bless you and yours!

Friday, May 28, 2004 11:40 AM CDT

Day +58

WBC ??

It is a dreary day outside with overcast skies. It is similar to the feelings that we are struggling with on the inside.

Zachary had a really rough night, after vomiting for a period of time he proceeded to have severe stomach cramps that pain medicines did not touch. The only thing that seemed to comfort him was me holding him up close to my face and holding on tight. He then hit a point of low oxygen levels, high respirations and an elevated fever of 103 degrees. This brought my concerns of the day to an all time high. The doctor was called, medicines were given to bring his fever down; thankfully it worked. Once the fever came down, the respirations did as well. We did blow by oxygen for him all night which brought his oxygen to 100%. There was also an x ray of his stomach which was done at 2:00 this morning to make sure the cramping was not from a blockage. Thankfully everything on the x-ray looked fine. He will have an ultrasound done this afternoon to check everything out and see why his bowel sounds are silent again and to also check for enlargement of the spleen and liver. This will help to determine if the HLH is coming back in full force. He seems to be feeling a bit better today. We played for a little while and he is now taking his morning nap while I journal. I am still all about trying to have some sort of schedule; although, it has not been working out well lately.

The doctors have received some information back on what direction we should take. Thus far it has been recommended that if he is relapsing that really our best choice is a second transplant. We are still waiting for responses from a couple of doctors before we sit down and determine what direction we will take on this part of our journey. The hard thing is that for the time being he does not show any clinical signs of HLH other than the biopsy. His liver enzymes look good and his spleen and liver do not seem to be enlarged when palpated by the doctors. The ultrasound will confirm this. I have to admit I am scared, I am tired and this takes a huge hit to your emotions. To watch someone you love more than life itself, suffer so much and battle so much at such an early age is devastating. I feel as though the wind has been taken out of our sails.

So our goal is to fight, fight harder than ever before. We will come up with a plan of action and move forward as the doctors direct us. We will strengthen ourselves over the next few days to do whatever is necessary of us. We will find the wind that will allow us to sail like never before. I have the utmost faith in this.

Sydney is doing pretty good. I thank God for her resilience and for the fact that she has Mom to lean on and trust when we cannot be there for her. I will go home tonight and spend the evening with her and get some much needed rest. I have been told by the doctors that if I do not go home, they will kick me out. You see, in the past few weeks I have gotten very little sleep. My days and my nights are starting to run together. It is time for me to get rejuvenated and spend some much needed quality time with Sydney. As much as I hate to be away from Zachary I know he is in great hands with his Daddy. We will work something out this weekend so that we all get a break and yet Zachary still has someone by his side at all times.

As we feel our spirits lifted from Zachary’s smiling face and through the presence of our Heavenly Father; we regain our strength and we continue to fight forward for healing for our precious baby boy.

Taking every moment we are given as a gift, we move forward slow and steady with our heads held high.

Many thank you’s for your love, genuine support and prayers.

May God continue to bless you and yours!

Thursday, May 27, 2004 9:56 PM CDT

Day +57

WBC 8.1

There is quite a bit that I have to journal about and it is hard to know where to begin and how to say it. So sit back, take a deep breath and grab a box of kleenex because there is definitely news to report.

Our day started out pretty good after getting a fairly good night sleep which we had not had in the two days. We have continued to deal with dehydration vs. swelling from too much fluid. There is a very fine line and we are trying to find that balance for Zachary. They both include there own discomforts and needs and we have had to deal with them both this week. He has also needed many types of transfusions: blood, albumin, platelets and others that help with his clotting factors. The stools seem to be getting less, and there is less blood present. This is a great thing. He continues to take the formula and the pedialyte that he is given; he takes minimal amounts, but right now every little bit counts.

I woke up this morning determined to have a good day, playing on the mat on the floor, dancing together with Zachary and getting some smiles and laughs from his precious little face(which by the way is growing by leaps and bounds from the steroids) . We were definitely headed in the right direction until around 4:30 this afternoon when our doctor and nurse came in and sat down. It was at that point that I knew something was wrong; simply because it is rare for both our nurse and doctor to come in and sit down with a serious demeanor. As I sat in the chair holding Zachary (just prior to them coming in we were having a grand time playing peek-a-boo) I felt my heart start to race and my face began to become flush. Our doctor, who we trust implicitly, delivered some very uncomfortable news. The bone marrow aspiration results came back and showed that the histiocytosis was still present. I felt as though my heart was sinking, my eyes tearing up, meanwhile trying to hold it together to ask what our direction for the future would be. The thought I continued to have was this cannot be happening, he is doing better, maybe the results are wrong. At the present time the doctors here are pulling information from many other transplant centers (Switzerland, Japan, Boston, Duke, Cincinnati, Seattle and many others) to determine the best approach to take. Many factors weigh into this, because of the acute GVHD, which he has experienced, there is a fine line with what we can do without getting back into the same situation that we just got out of (which was extremely serious). We still do not have the exact percentage of donor cells vs. Zachary’s original cells. Either way, we have yet another hard decision and road ahead of us.

The next hardest part of the day to deal with was how I was going to break the news to Max. He was happy walking in and was looking forward to going home early, seeing Sydney and taking Nana and Sydney to dinner. When telling him this news I felt as though I had just shattered his world. It broke my heart to see him so upset and yet try to keep a positive approach for Zachary. Who, by the way, was smiling and still interested in playing peek-a-boo. Thankfully, our nurse was in the room with us and offered so much support and comfort for both Max and myself. She gave the hugs that we needed and shed tears with us as well. Thank you for being our rock to lean on when we felt so very weak. ?

Our emotions are running wild: why us, what is the lesson we must learn from this? and how much more can one family take? We have been angry, we have shed many tears over the past few hours, and we have prayed and prayed and prayed. At the present time we are tired, but determined to overcome this horrible disease that will not let my baby be. Zachary is a fighter and we will be here with him, we will be his strength when he feels weary, we will encourage, love and support him every step of the way.

I ask that everyone pray for Zachary’s success in this fight like you have never prayed before. We ask that the prayer chains flourish more now than ever. We continue to believe that with God in our corner we will get through this. He will guide us and lift us up in our weak moments.

Thank you for standing in our corner and cheering us on, praying for us, and supporting us. We are forever grateful!

May God continue to bless you and yours!

Monday, May 24, 2004 6:18 PM CDT

Day +54

WBC 13.2

We hope you are all having a wonderful day and enjoying the weather wherever you are. As I sit and journal I have a view of Interstate 95 that is lined with plush green trees and it makes me wish we were outside enjoying long walks and watermelon on the porch. I am in hopes that that will come soon.

Zachary had a much needed restful night, which allowed me to get some sleep. I am grateful for every ounce of rest that we get these days. Zachary has been pretty fussy and tired today. We are continuing to hold off on the feedings, I find it so hard not to nurse him and give him that comfort. But I know it is necessary that we allow his gut to heal properly before it can digest breast milk or any other type of food for that matter. His stools seem to be coming less frequently and have very little blood in them. This is definitely a step in the right direction. He has been extremely swollen the past few days, between all the maintenance fluids, blood transfusions, albumin transfusions, antibiotics therapy and platelet transfusions we are trying to help his body find a balance. This is requiring very close monitoring of his input and output and some lasex (sp?) to help him discard the extra fluids his body does not need. He continues to amaze me and I am so very thankful to have him in our life. I am pretty biased since he is my child, but what a strong and amazing baby.

Sydney is doing well. She misses her family and thinks if she could take care of Zachary that would help him feel better. I am inclined to think that there is some truth to that as much as they love each other and enjoy each others company. Max spent some quality time with her last night. It is hard to feel so divided between two children that you love so much. I hope she always knows how very much we love her and that we are doing everything in our power to get our family back together. Her personality continues to blossom; she has a great sense of humor, she is a little leader (this will benefit her greatly in the future but offers a lot of challenges for us right now) and she has a heart of gold. She has been talking about how she is going to marry her daddy when she gets older and that Zachary can marry me. I think this is the sweetest thing ever and we discussed if when she gets older and finds a man as wonderful as her daddy she will be a very lucky little lady. She then follows with the fact that she is going to have two baby boys, one named Boy and one named Zachary. She is so much fun and I love spending time cuddling together and talking with her.

We are so very blessed to have each and every one of you in our lives. Thank you so much for traveling this journey with us, your prayers and inspirational thoughts are greatly appreciated.

Holding our heads high and taking things one day at a time we know with God in our corner we will overcome this obstacle in our life.

May God bless you and yours always!

Sunday, May 23, 2004 6:44 PM CDT

Day + 53

WBC 13.2

First I must apologize for the delay in giving an update. I know we left our last entry at an important point for Zachary. Thank you for checking the website regularly to get updates and thanks for the phone calls brought on by your concern (got your message, Pete, thank you).

The endoscopy performed on Thursday was a success. Zachary has a slight tear (called a fissure) on the inside of his rectum; we will use creams and suppositories to heal it over the next 4-6 weeks. The biopsies from his GI Tract and colon showed no visible signs of the GVHD. Collective sigh of relief here. So, while it appears to be gone we are dealing with the aftereffects, and it could come back. The aftereffects include having to retrain his stomach how to work as it has been dormant for the past 3 weeks. It’s like his stomach has a severe burn and only time will heal.

Unfortunately feeding him is not as simple as breastfeeding. Instead we will feed him a special formula that does contain “high proteins”, which are more difficult for him to digest. The lactose in breast milk is considered a high protein. We began to feed him the formula with a bottle on Friday, 1 ounce at a time every 3 hours. He took the first ounce, and kept it down, very well. But the next ounce was more of a struggle. It seemed to give him a stomach ache and made him very fussy. So, we have stopped feeding him again, for now. He has found a love for ice chips, which gives him some comfort. I believe we will try the formula again tomorrow or the day after. Stacy continues to pump and our freezer is being overrun by milk bottles. Stacy’s commitment to her children’s well being is inspiring.

All in all this has been a very good weekend. Sydney and I went to her Gymboree class Saturday morning, which is always a big hit. She and Matthew, her “best friend”, as Sydney puts it, enjoy playing together and are very compatible. Sydney and Matthew were born one day apart in the same hospital. In the afternoon Dianne stayed with Zachary while Stacy, Sydney, and I had lunch together and then bought a plastic swimming pool and we all got wet in the back yard. It was a wonderful day.

The evening did end with a twisted ankle. Stacy forgot there are four front steps at the house. She took the first 2 just fine. The 3rd step was a doozy as she missed the 4th. We can laugh about it now as she seems to be getting better. Well, I can laugh about it, just not around Stacy, she doesn’t think it’s too funny.

I spent most of today at the hospital while Stacy spent the afternoon at home. Zachary sat up and played with his toys and even smiled and laughed a little bit. Overall uneventful, which is what we like.

Thank you for checking in on us. We appreciate it more than you will ever know.

May God continue to bless you and yours!

Thursday, May 20, 2004 7:02 AM CDT

Day +50

It has been a long few days since I last journaled; filled with frustration, anger, pain and appreciation. A journey like this definitely allows you to evaluate life from many perspectives and gives you a definite sense of what is really important.

I have vented my frustration this week at the nurses and the doctors in regards to the discomfort that Zachary continues to endure. The feeling and need of a definite direction and timeframe for what we are dealing with. Lack of sleep and watching your baby cry from discomfort, exhaustion and hunger will do this to a Mom. Everyone was very understanding of my concerns and did their best to reassure me of our direction and what we are watching for. One of the doctors stated we are walking in the right direction, but we would like to be running. I could not agree more with this statement.

After calming down and taking some time to reevaluate my emotions I was humbled with the gifts we have been given. Let me explain, although this is a hard journey to travel, it ours, filled with love, faith, courage and a strong will to overcome whatever challenges we are face with. We have been given options to help in Zachary’s healing process, not everyone has options and some are only given a short time together after being diagnosed with whatever may ail them. What some parents wouldn’t do to be in our situation and have our choices. I am thankful for what we have been given, our options for a cure, the medical team who care so diligently for our precious baby, and our Heavenly Father who continues to provide us the strength and comfort that we have needed to stay steadfast on our journey.

Okay, now for the Zachary update, he is still passing some bloody stool but they are getting less, he has discomfort from stomach cramps and spasms. He has to have platelet and blood transfusion pretty regularly. He continues to also do the normal baby things by teething, can you believe four teeth at one time. This poor little one needs a break. The best news I have is that we had our last dose of ATG yesterday, I was thrilled to see that it was done and I am in hopes that things will start to turn around now. We are scheduled at 1:00 EST to have the endoscope done as well as the bone marrow aspiration today. I am anxious and nervous to get the results, and I pray that Zachary does well with the procedure and does not have any complications. He is such a little angel and my heart melts watching all that he has had to endure. I know his life will be filled with amazing things, look what he has accomplished this far.

Sydney is doing good, I went home last night for dinner and to make a run to target for more diapers for Zachary. She is so sweet and full of imagination, energy and love. Within the first 5 minutes that she sees me she always expresses how much she misses me. It breaks my heart that she has to experience this at such a young age, but thankfully she is handling everything pretty well and expresses her feeling about everything beautifully. I cherish the time I spend with her and I can’t wait until we are home again.

Thank you for all the encouraging words, the uplifting prayers and forever cherished friendships. We are honored that you have chosen to take this journey with us.

Praying for strength, healing for Zachary, protection during the procedure this afternoon and guidance for the doctors we hold our heads high and find peace that God will see us through this.

May God bless you and yours!

Monday, May 17, 2004 8:14 PM CDT

Day +46

WBC 19.5

We started the morning with a relatively good night sleep in comparison to previous nights. I have always been one who enjoys my sleep and now I not only enjoy it but I am grateful for it.

Zachary is being infused with his 4th dose of ATG; I pray this dose goes as well as the previous three. There was some concern during rounds this morning that Zachary had a few red patches in various areas of his body. This could be a sign that the GVHD of the skin is not entirely gone or that he is having a reaction to one of the medicines. We will watch him carefully and see what the day brings. He has also spiked a low grade fever; this is concern because it may be an infection brewing, teething or any number of different things. The bigger concern with the fever is that he already has one and the ATG can cause you to also spike a fever. So as he sleeps I have placed a cool cloth on his head and he has been given a dose of Tylenol. I pray that the fever is a result of teething, but only time will tell.

We were hoping to meet with the Pediatric Gastrointestinal Doctor this afternoon for an evaluation and to determine if we should do the scope. Unfortunately he was out of the office today; we are hoping to see him tomorrow. If he feels it would be beneficial, hopefully everything will be done this week so we can have some answers as to where we are in this process. I feel confident that things are getting better; it is just a slow process that requires a lot of patience.

One of the hardest parts of this is that Zachary’s smiles are very limited and his face is extremely puffy from the steroids. With all the crazy things we do to try and get a smile he keeps a very serious look about him. He has become quite the Mommy’s boy, watching every move I make and crying when I leave. He is the sweetest little thing and has become even more of a little cuddle bug, if that is possible.

Sydney is doing really well. She continues to keep her baby in the foremost of her thoughts; always asking how Zachary is doing. Mom will call during the day and Sydney will frequently ask to speak with Zachary; she talks to him and sings him songs. His eyes light up at the sound of her voice. She is becoming so independent and it saddens me to think I have missed so much of this time in her life. My brother has been in town the past few days so she has been quite entertained with him. It is fun to watch them together. She definitely loves her Uncle D.

As I finish my journal entry for the day, I am sitting here typing while Max and Zachary (and of course monkey) are cuddled up together in the recliner. They look so peaceful and Zachary couldn’t be in better hands. The security of your father’s arms around you seems to take the worries away and Zachary is a sign of that comfort.
I pray that we are headed toward health and that God continues to place his healing hands on Zachary’s little body.

Thank you for all of your continued love and support, we are inspired on a daily basis by all the love, support and prayers that are sent our way.

May God continue to bless you and yours!

Sunday, May 16, 2004 9:26 PM CDT

Day + 45

WBC 18.9

Let me start by saying thank you for all of your continued support, prayers and inspirational journal entries. We feel your love, hugs and prayers each and every day.

It has been a long week and we feel as though we are headed in the right direction. It has been a week of minimal sleep, a lot of walking and comforting, continued bloody stools (which are starting to become less and have a little more normal color) and some vomiting which seems to be mainly thick mucous that he chokes on and then proceeds to gag and throw up. We completed our third dose of ATG yesterday and he did wonderfully. We have two more ATG infusions this week to complete the protocol therapy. We pray for continued healing, comfort, and strength for Zachary to overcome.

Because the blood continues to appear in Zachary’s stools we may need to have a scope of Zachary’s gastro-intestinal tract performed early this week. Mixed emotions as the need demonstrates there may be more going on than what we understand, but it also provides the opportunity to show nothing else is wrong. Since this procedure will require sedation they are will try to complete the long-awaited bone marrow aspiration (originally planned for Day+30) at the same time, which would show the percentage of engraftment thus far.

This journal entry does not demonstrate the range of emotions and efforts that have been put forth over the last few weeks. We have been moved to tears many times, fear has set in over and over, exhaustion, frustration, and empowered by the generous thoughtfulness of the human spirit.

As I sat and had my lunch one day this week I watched as a Mom came in with her 3 year old and baby in a stroller. They were all enjoying the beautiful day and having an ice cream treat together. I found myself envious of this Mom as she was able to enjoy her two children and the beautiful day all together. Then as the day progressed I continued to think about what I had seen and realized that although right now we are faced with challenges in our life I would not trade what I have for anything. I have been blessed with an absolutely wonderful loving and supportive husband, two absolutely incredible children that are little gifts from God, a loving and supportive family and the best friends in the world. I am one lucky woman. Everyone has something in their life that they must overcome or a challenge they must face. This is ours, and although I would love to spare my sweet baby boy from all he has had to endure, we have learned so much about the kindness of the human spirit and we have had so many people that have come into our lives that we would not have met otherwise. I continue to believe that God only gives us what we can handle; I am honored that He has entrusted us with this little bundle of joy. We will overcome; it will take a lot of patience, trust, and prayers. This is our journey, it is our life and we will do whatever is necessary to overcome.

Each and everyday is a gift, enjoy every moment you have with your loved ones. Thank you for the time and interest in our lives.

Staying strong and feeling rejuvenated; we hold our head high and continue to battle toward health for our precious baby.

May God continue to bless you and yours!

Wednesday, May 12, 2004 9:47 PM CDT

Day + 42

WBC 40.5

Well, we are very pleased to report that the ATG infusion went well. Zachary experienced a pretty good bought of vomiting most of the night, but did not experience the side-effects we and the doctors feared. Thank you, God.

The vomiting could have been a result of a number of things, most of which are perfectly normal considering his condition. But we know it caused a lack of sleep for me, Zachary, and, especially, Stacy. What a Mother Stacy is. She stayed by Zachary all night, holding, singing, humming, and praying with him. They were transferred out of Pediatric Intensive Care early this morning. Because he did so well, tomorrow’s infusion will take place in his normal room on the transplant floor. We feel so much better about that. As good as the PICU is, they seemed a little uncertain about the ATG and may not have appreciated Zachary’s need for constant and consistent monitoring.

Today started with a positive exam by the doctors and some occasional sleep. Meanwhile an x-ray of Zachary’s stomach has shown a lot of gas bubbles, which is creating some pretty significant discomfort. I keep pulling his thumb, but it just isn’t working (ha ha). He’s getting some pain medicine on board, so we pray it takes effect and gives him and Stacy a quiet, restful evening.

During the doctor’s exam this morning, around Zachary in his bed was his doctor, the nurse practitioner, and one of his nurses, so Zachary chose to throw up and then make a diaper. The 3 professionals with about 30+ years of combined medical education and work experience felt obliged to clean him up and change his diaper. It was quite a sight watching 6 experienced hands trying to avoid the poop, clean the bottom, and replace the diaper before another gift came passing through. This medical staff does it all!

Please pray for Zachary that the ATG works to rid Zachary of the Graft Versus Host Disease, his discomfort is lifted, and that the stem cells engraft safely.

May God continue to bless you and yours.

Monday, May 10, 2004 11:04 PM CDT

Day 40

WBC 40.9 (this is extremely elevated from the steroid treatments)

The question of the day for us has been WHY? The reason for the question is that we are continually being challenged with road blocks that are testing our strength.

It is with a heavy heart and many more shed tears today that I write about Zachary’s condition. It has been determined that the GVHD of the gut is not responding as we had hoped to the steroid treatments. This was determined this afternoon after Zachary had a bowel movement that consisted only of blood. My emotions became more burdened with fear after I changed bloody diaper after bloody diaper. The remainder of the afternoon was spent having labs drawn to try and see exactly what was taking place. This was when it was determined that we were going to have to change our treatment direction and become a little more aggressive. Okay, this is when the tears began to flow.

He has also continued to throw up periodically, but thankfully it has lessened some. The plan of action right now is to do an infusion of Rabbit ATG every other day for 10 days. ATG is an immunosuppressant drug that also helps treat GVHD. The concern with this is that there can be very serious reactions and side effects from this drug. Therefore, we will be transferred back to the Pediatric Intensive Care Unit in the morning; unless, of course, we have a miracle overnight.

His temperament for the most part has been pretty good. He sleeps a lot and then this afternoon he spent quite awhile playing, cooing and enjoying awake time. It was a blessing to see him smile and it served as a reassurance that he is going to be just fine. I just wish he didn’t have to go through all of this.

Max was in meeting the entire day so Mom and Dad brought Sydney down to give me a break and allow Sydney and I to have lunch outside. This was the best part of my day. We sat outside, fed the birds and enjoyed each others company. When we were done she came upstairs with me to see Zachary before they went home. The smile on his face when she walked in the room and the glow in her eyes as she told him how much she loved him just melted my heart. They are connected; there is not a better way to describe the bond that they have.

To end my day on an even sadder note, my Mom called to let me know that my Great Grandmother passed away this morning. She was 99 years old and lived a long, full life, but it still does not discount the sadness that we all feel at her passing. She was a woman of great strength who loved her family. She will be greatly missed. What wonderful angels we have watching over him.

When it rains, it pours and I am ready for some sunshine on a daily basis in our life. As we look beyond the clouds we know that God will give us the strength to overcome.

Thank you all for your continued prayers.

May God bless you and yours!

Sunday, May 9, 2004 9:21 PM CDT

Day +39

To all the Mothers in our life, we hope you all had a very special day with your loved ones.

The past few days have been very emotional and draining, but happy to report that Zachary is doing pretty good right now. He has been dealing with nausea, bloody diarrhea, dehydration and swelling over the past 48 hours. But with the adjustments of some I.V. fluids, some pain medications, and some different medicines we are hoping to see a change for the better - only time will tell. I find myself praying everywhere; at his bedside, in the elevator, the shower, for his complete recovery and his discomfort to be removed from his tiny little body. I prayed this morning for God to give me a sign that he was going to be okay. I feel as though the laugh and sweet little smile that I got this afternoon was just that. It definitely gave me the endurance to be steadfast on our journey.

Max and I spent the afternoon with Sydney for Mother’s Day. While Mom and Dad spent time with Zachary at the hospital. It was wonderful to be with Max and Sydney and yet I continued to feel as though something was missing, my sweet baby boy. We had a nice early dinner and got a few things that we needed at the hospital. Sydney couldn’t seem to be close enough to me; she sat in my lap while I ate my dinner and squirmed around trying to find a spot where she felt she couldn’t get any closer, and continued to express how much she loved me. Her love and sweet little heart is such a blessing and I am so thankful she is our little girl.

We are continually reminded of what a gift we are given with the love and never ending support of our friends and family. Your prayers and uplifting messages are very much appreciated.

Staying strong, holding our heads high, and keeping our faith strong we take each moment as it comes and know that with God in our corner we will overcome.

May God bless you and yours!

Thursday, May 6, 2004 9:02 PM CDT

Day +36

WBC 9.0

I want to apologize to everyone who has been checking in and waiting for an update. We have been extremely busy and this is the first chance I have gotten.

As of last night we were transferred back to N10, the transplant floor. It was nice to be back in the comforts of all the transplant doctors and nurses.

Zachary is staying strong. His little body has a nasty battle going on inside him and he is handling it better than I ever would. We were told today that he has stage 3 GVHD (graft vs. host disease) of the skin. When I was talking to his nurse today she said that she has been told that it feels like a bad skin burn. So if you have ever burned yourself, then imagine it on your head, torso, hands and feet and that is an idea of how Zachary’s skin is feeling. My heart broke when I was told this; I wish I could take this all away and do this for him. Unfortunately, that is not what God had in mind, therefore I must remain patient and believe that our Heavenly Father will continue to protect him and give him the strength to overcome. The GVHD of the gut is still stage 2. The heavy doses of steroids seem to be calming the GVHD so far, but it is going to be a long hard road. His doctor described the feeling that he is having inside from the steroids like going on a long trip in the car, drinking massive doses of caffeine to stay awake and then you get where you are going, lay down to sleep, your body exhausted and your insides still rushing from all the caffeine. This is an awful feeling and I feel so bad that he feels this way and he has no idea why. He has spent the majority of the day sleeping, moaning from the feelings that he is having and wanting to be held up close and comforted. This is something Max and I are happy to do for him. He is alert, but just looks and acts like he just feels really cruddy.

I spend a lot of time talking with Zachary about all the lives he has touched and what a difference he has made in this world so far. We talk about the many things that he will do when he gets older and all the wonderful experiences that he will have in his life. As parents you are the one that is suppose to be the teacher, but if you think about it for a moment it is actually the children that are teaching us about ourselves. If I do not experience anything else in my life, I have been given the most amazing experience by being Zachary and Sydney’s Mom.

I want to thank everyone for all the wonderful inspirational thoughts and prayers. The guestbook entries are uplifting and I feel overwhelmed with emotion every time I read them. We are so very fortunate to have such loving and supportive friends and family. Thank you all!

May God continue to bless you and yours

Tuesday, May 4, 2004 9:39 PM CDT

Day +34

WBC 5.0

I have continually journaled after transplant that our journey was far from over; the previous days and nights are definitely proving this statement to be true. We are still in the pediatric intensive care unit and will probably be here for a while longer. I will explain why later in the journal.

Let me start by asking for all of our prayer warriors to begin the prayer chains and keep them coming. We have been lifted up by all of your inspirational thoughts and prayers from the beginning of our journey and we believe that with all of you and God in our corner we will WIN this challenging battle that we are facing. We have had our moments of weakness the past few days and I continually find myself in prayer to give us the strength to help us through all of this. We are extremely thankful for all of your support on this journey in our life.

We are honored to have such a wonderful group of people caring for us. The transplant doctors have been absolutely wonderful through all of this; checking in on us throughout the day as well as calling to ensure that we are handling everything okay at night. They do not care for only the patient, but they care for the family and that is what I call a true gift of human kindness. They take patient care to a new level. This also includes the entire Transplant team and Hematology and Oncology team which have come in to check on us throughout the days. Their support and care continue to help us through all of this and reassure us that we have chosen the best place to be for treatment. We thank God for placing each of these individuals in our life. You have each been there in one way or another and touched us in a very special way.

There is no perfect way to say this except to say that Zachary is fighting with all that he has and all that he knows. The past few days have been extremely difficult for him. He is in quite a bit of discomfort with stomach spasms, diarrhea, fever, skin irritations, and vomiting. The gastrointestinal doctor came in this morning to do a biopsy of his stomach to determine if he has GVH (graft vs. host) disease of the gut and if so to what degree. While we waited for the results to come back this afternoon, we spent the morning managing his discomfort, changing diaper after diaper, and suctioning the heavy secretions of vomit/mucous that he continued to gag and throw up. The afternoon was a little better as he was more alert and playful for a short period of time. Then we both laid down for a much needed nap. The results of a few tests came back late this afternoon. He tested positive for CDiff (short for a long, unprouncable medical term), which is an infection in the stomach that can occur because of the antibiotics. Zachary was immediately started on a medication to treat the problem. A little later in the afternoon the biopsy results also came back positive for Stage 2 GVH disease of the gut. As you can imagine this was not the news that we wanted to hear. He also has GVH of the skin, which has him very red and irritable from the itching. The treatment will be very close observation, heavy doses of steroids to try and combat the problem before it gets worse, and, of course, the other many medications that he is currently on to prevent other problems. The steroids will be tapered as the GVH lessens day by day. He will then be monitored very closely for future bouts of GVH, because he will be more vulnerable to future outbreaks. This is the new demon that he is faced with. The doctors say that the silver lining to this is that it will lessen the possibility of the HLH coming back. I pray that the HLH is gone and we get through the tough stages of GVH without it getting worse.

I find myself touching his little hands and trying to embrace every smile, every look and each moment. Zachary’s eyes tell a story: one of strength, endured pain, love, and the gift of life. When watching him you get the sense of an old wise sole. He is a true blessing, who teaches me more and more about myself.

Sydney is being a sweetheart and is handling our return to the hospital rather well. She entertains Nana with her loving personality and constant gift of love to each of us. She is my little sweetness and I am so very proud of her strength and understanding of everything that is taking place.

Max and I are doing okay. It is difficult to watch your child in so much discomfort and feel so helpless and then to be away from Sydney whom we both love and miss so very much. Our strength truly comes from the hand of God and we continually feel his presence guiding us on our journey.

Taking each moment that we are dealt as a learning experience and trying to remember that God only gives us what we can handle, we hold our heads high and are thankful for all the gifts of life that we are given.

May God continue to bless you and yours!

Monday, May 3, 2004 6:59 PM CDT

Day + 33

WBC 14.0

Last night and the early morning hours were filled with vomiting, diarrhea, and consistent discomfort. Fortunately, as the day has progressed his mood has improved to include a few smiles and a desire to play with objects. The vomiting has lessened, but the diarrhea continues.

The unofficial diagnosis is Stage 1 of Graft Versus Host Disease (GVH) in his gut and on his skin. There are 5 stages to GVH with the higher stages indicating severity. Tomorrow morning a gastro-intestinal doctor will obtain a biopsy from Zachary’s stomach to study and officially diagnose his condition. GVH is very common among people that undergo transplants when the stem cell match is not 6 of 6; Zachary’s was 5 of 6. So, the key now is to treat as if GVH is the cause with fluids, steroids, cyclosporine and antibiotics, which he has been undergoing since yesterday. Ironically, light signs of GVH are a good thing because it shows the new cells are engrafting. Soon after transplant Zachary showed some manageable signs of GVH. GVH of the gut is not light and can be difficult to manage, but I feel we have got a jump on it. This will be about a 1 to 3 week process. First, we need to stop the GVH progression, and then let his stomach heal, and then watch how his body processes food by his stools. Once his stools return to normal he can begin to take food orally rather than by IV. So, of course, Stacy’s ability to maintain her breast milk has been a concern for her. We were visited by a lactation consultant today who helped put her mind at ease by reassuring her that proper and consistent breast pumping will keep her milk in and give Zachary the time he needs to start feeding again. The hospital has loaned Stacy a high grade breast pump that looks like it could produce electricity for a small city.

A bright spot is that his blood counts continue to hold their own and the cultures taken last evening are continuing to read negative for infection. It is early, but the infection that started to show last Thursday may be gone (but not forgotten).

We have found our doctors and nurses to show true compassion for Zachary and our family. It touches our heart and disproves the stereotype that doctors are insensitive to the lives they save. Our doctors have been anything but insensitive and have been providers of great care and psychological support. They have earned our trust and respect, and Zachary could not be in better hands. We trusted God to put us in the right place and believe He has done so.

Sydney has maintained a pretty good spirit with our sudden departure from home. I saw her briefly this morning and she was cheery, although she does not want to talk about Zachary. However, Sydney spent some time at her play kitchen set today and told Nana she was making medicine for Zachary to feel better.

We feel lifted up by your prayers to God. Thank you!

May God continue to bless you and yours!

Sunday, May 2, 2004 6:50 PM CDT

Day +32

WBC 21.7

It has been a whirlwind of a weekend and I am saddened to say our journey has hit a bump in the road. We are back in the hospital as of 2:00 this morning.

We came to clinic on Friday prepared for a bone marrow aspiration and found out that some of the cultures that were drawn on Thursday came back Friday morning positive for a bacterial infection. This changed the plans on Friday. We went from doing a bone marrow aspirate (this shows the percentage of new stem cell engraftment thus far), to starting IV antibiotics in the hospital, and then getting trained to do them every 6 hours at home to treat the infection. Things went downhill from there.

It is still early, but it appears that Zachary has had a pretty severe reaction to the antibiotic (Vancomycin). The reactions began with redness on his skin (called Red Man’s Syndrome) and itching; the addition of Benadryl seemed to ease the discomfort. He had also thrown up a few times, but nothing that really caused alarm for us. Starting last night between 8pm and midnight he began to throw up relatively consistently, coupled with a lack of wet diapers and a rise in his temperature (although never feverish) caused a call to the hospital where Zachary had his transplant. He was admitted soon after.

My heart is breaking watching him go through this and look so completely lethargic. He has lost that beautiful smile for the time being, but I have great confidence that we will find it soon.

The concerns at this point are Zachary’s ability to recover from the usage of Vancomycin, his inability to pass much stool even though x-rays show no blockage and the constant vomiting throughout the day. Now, he is at the point of dry heaving and is starting to show some signs of dehydration even though he his getting proper fluids. At this time he will be admitted to the Pediatric Intensive Care Unit to watch him more closely and continue the hydration. I pray he will pull out of this as quickly as this happened.

When I asked Zachary’s doctor if we should be worried, he paused and said not worried but definitely concerned. Our eyes, hearts and entire body filled with concern and even worry. We need your prayers now as much as ever.

We will try to inform everyone as frequently as we can to what exactly is going on. But for right now, we are crying, praying and finding our strength that God will continue to bless our lives with his presence and carry us through.

We are holding our heads high, but finding our eyes full of tears as we sit and wait.

May God Bless you and yours!

Wednesday, April 28, 2004 8:24 PM CDT

Day +28

WBC 5.7

Hooray! Today has been a day of rest for Zachary and myself. We were given the day off because he is showing signs of needing less clinic time.

Zachary is doing great! His smiles and laughter keeps all of us on top of the world. He is eating wonderfully and has started to slowly show more interest in his fruits and vegetables. He enjoyed a long three hour nap in his own bed today and woke up ready to play.

Medically he is doing everything he should be doing. His hemoglobin has started to come up on its own, which pleases us. He is starting to need less platelet transfusions and nutritionally he is progressing beautifully. We couldn't be happier with how everything is going. God continues to place his healing hands on our precious baby boy and answer our prayers.

Our days and nights keep us busy and at times I feel as though I am walking around in a fog. There is so much to do between home and clinic that it is overwhelming at times. Then you realize that this is not forever, you take a deep breath and you pray for strength for each day and what we may be faced with. Please do not get me wrong, I am happy to be home and be all together. Having my family back together is like a dream come true.

Today was spent catching up on a few things, attending to Zachary's medical needs. Then the best part of my day was some much needed pampering. We had a quality girl afternoon where my sister gave all the girls in the house a pedicure. We relaxed, laughed and enjoyed each others company. It was exactly what I needed and it was fun to have everyone show off their pretty toes to Max when he got in from work. Kimmie, thank you so much for everything that you do and for the quality pampering that you provided to all of us. We love you!

Through our journey we have had many ups and downs and you have all continued to stand by our side. We have a grand appreciation for all the generous things that everyone has done for us. I hope you all know how very thankful that we are to each and everyone of you. Your continued prayers and inspirational thoughts continue to lift us up.

May God continue to bless you and yours!

Sunday, April 25, 2004 8:59 PM CDT

Day +25

WBC ??? (We did not get the lab results for the white count before we left the clinic on Saturday.)

It has been a wonderful weekend. The weather has been absolutely beautiful and we have loved being home to enjoy it.

Zachary is doing great. He is in wonderful spirits and is enjoying being at home. He is eating more of his cereals, taking great naps and loves to be the center of attention. We were in clinic for half the day on Saturday and we were able to take today off. Zachary had a platelet transfusion on Saturday and his hemoglobin has started to come up on its own. HOORAY! The transplant team felt as though he was doing well enough that we could have a day off. This was music to my ears. We will be back in clinic tomorrow to see how he is doing with everything.

My aunt went home this evening; we will miss her. She is the comic of the family and added humor to our days, which has been exactly what we have all needed. I can’t remember when I have laughed so hard. She is a wonderful tribute to our family. We thank you for all of your support.

Sydney is doing great; she has been dancing and enjoying time with her cousin Jordan. It is so nice to see her smiling. She is still struggling with the concern that I may leave and be gone for awhile. We try to focus on the positive and the time we are together right now. She has such a mature soul for a three-year-old.

I am doing well; adjusting to being back home and trying to get everything organized for Zachary’s medical needs. I think the day off has definitely helped me to relax some.

We want to thank you all for your kind words, generosity and prayers during this journey in our life. We will not ever forget the continued support that we have had by many of our friends, family and welcomed newcomers. We feel very blessed. We ask that you please continue to keep Zachary in your prayers his battle is far from over.

May God bless you and yours always!

Friday, April 23, 2004 7:32 PM CDT

Day + 23

WBC 8.0

Let me first offer an apology for not journaling the past few days. Needless to say, since we've been home life has been extremely hectic - I need more hours in my day.

Our homecoming was wonderful. It was great to see the sparkle in Sydney and Zachary's eyes when they saw each other. I am continually impressed by the bond these two have at such a young age. It will be exciting to see what the future has in store for them.

Since we have been home, out days consist of clinic visits, which start first thing in the morning and have been lasting until around 1-2pm. Wen are giving upwards of seven different types of medicines, some of which are 3 times/day, breathing treatments, and administering 16 hours of I.V. nutrition through Zachary's line, which Max and I have been trained to do ourselves. Then there are the things like family time, eating, sleeping, and the routine daily things that need to be accomplished, like giving Sydney the attention she needs and deserves. Did I say I need more time in my day?

My reasoning for explaining this is two-fold: some are interested in what is going on; others appear frustrated because we are not calling or doing what would be appropriate in a "normal" setting. Unfortunately our life is far from normal. Well, I can only hope everyone will understand when calls aren't made or are delayed, or when journals are not as frequent as before.

Now for some information about our Little Guy. He is doing remarkable!! He is eating well, taking his medicines, and sleeping all night. His hair and eyelashes have thinned out from the chemo and his cheeks are getting bigger from the steroids that help contain and control the Graft vs. Host Disease. We are still battling the teething issues, but he is handling the discomfort quite well. He will be evaluated again next week by the nutritionist to determine if we can taper the I.V. nutrition to 12 hours instead of 16. It would be nice to have him "line free" for at least 12 hours per day. He will have a bone marrow test and spinal tap next Friday. The marrow test will determine how well the donor stem cells are engrafting to his body by seeing what % of the marrow is the donors and what % is his. We are praying for 100% of donor cell engraftment. He will have a test about every 30 days for next 6 months or so.

Sydney is doing wonderful. She has her family back together and that makes her a very happy little girl. She can't seem to tell me enough how much she has missed me. This little one warms my heart and makes me so happy to be her Mommy.

My sister, niece, and aunt are in town visiting. They have been a huge help to us all and it has been great for my Mom to have help with Sydney. I feel so very blessed to have such a loving and supportive family.

Max and I are hanging in there. There are times you feel like your head is spinning with everything that you need to do. It simply has been a matter of prioritizing things. We are both tired and, yet, we find the energy to do what is necessary. God provides many things to us and we are extremely grateful.

Mom took everyone yesterday afternoon to dinner, a movie, and a night at a hotel to give Max and I some much needed quiet time. Zachary stayed at home with us, of course. Max took the day off, so we had a short nap in the afternoon, had dinner, and watched a movie. It was a nice evening and exactly what the doctor ordered. Mom, thank you very much.

I am touched by all the generosity that continues to be shown to us. We are very blessed to be surrounded by such loving, caring, and genuine friends and family. Please continue to keep Zachary in your prayers. Our journey is far from over and it is one that we will continue to pace ourselves slow and steady. We have been fortunate enough to come in contact with some wonderful people over the past 7 months and they have all helped to shape us in a more appreciative, positive manner. You never know how you will handle a life situation until you are faced with something like this that reminds you just how precious each moment is.

May God continue to bless you and yours.

The poem below is something that was given to us on a music CD and sang to Zachary. We wanted to share it with you.

He's My Son ~
by Mark Schultz

I'm down on my knees again tonight
I'm hope'n this prayer will turn out right
See, there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries
Not to cry
As the tears fill her eyes

Can you hear me
Am I getting through tonight
Can you see him
Can you make him feel all right
If you can hear me
Let me take his place somehow
See, he's not just anyone, he's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God, who he needs right now is you
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired
And he's scared
Let him know that you're there

Can you hear me
Am I getting through tonight
Can you see him
Can you make him feel all right
If you can hear me
Let me take his place somehow
See, he's not just anyone, he's my son

Tuesday, April 20, 2004 7:36 PM CDT

Day + 20

WBC 9.1 (Day + 19)

WBC 5.0

It's a day late to announce, but we are home!!!!

Since Zachary's discharge it has been hectic, as you can imagine. We were discharged about 4pm yesterday, which was followed by an hour getting home medications, 3 hours of training by a home health nurse (Zachary has a home IV for nutritional supplements), a few hours of trying to reorganize our home for all of his medicines, machines, etc. and all day today Stacy and Zachary were at clinic. So, unfortunately journaling got last priority and will not get much attention tonight.

Stacy's sister, Kim, and her daughter, Jordan, are here to help and visit. When their visit was planned we expected Zachary to be in the hospital for a couple more weeks. So rather than Kim helping by providing relief at the hospital and Jordan and Sydney keeping one another company, Kim was put to work helping Dianne (Nana) clean and organize the house. Thank you to Dianne and Kim for their help in our frantic pace to get the house ready.

I'll wrap up by saying it is great to have all the Virginia Germans back under the same roof. Sydney can't get enough attention from me and Stacy, and Zachary was so excited last night when Stacy put him in his room - he felt right at home. As Sydney put it so well yesterday, "my family is home."

May God continue to bless you and yours!

Sunday, April 18, 2004 7:33 PM CDT

Day +18

WBC 2.1

Today was a relatively good day. It seems as though we have been busy doing something all day. So please understand when this message is short and sweet…..I’m tired.

Zachary is doing pretty good; we have had a few issues with nose bleeds and bruising all of which is normal according to the transplant team. This is a pretty good indication that his platelets are low. He has had two transfusions and we are waiting for him to have his third for the day. He has also started the notorious steroid moan. He has finally begun to settle enough to feed and, hopefully go to sleep.

I believe that God does not give us more than we can handle. We had to believe that today because we started the day with Sydney at the doctor’s office for a sick visit. She slept with Max last night and he said she awoke about 1am and was wheezing, coughing, and distraught with her longing to see me. In fact, he thought about taking her to the emergency room, but she calmed enough to go back to sleep. While Max was bringing me my morning decaf coffee and a bagel, my Mom called and said Sydney sounded croupy. So shortly after, Sydney was at her doctor’s office for a sick visit. The doctor’s conclusion was streap (sp?) throat based upon redness in her throat and ears and he has seen a lot of children with it. The doctor wanted to be preventive and proactive given our situation with Zachary. She got a shot and is on 10 days of antibiotics. She is eating, drinking, talking, and no fever, so we don’t believe she is ill, but better safe than sorry. They are thinking more along the lines of severe allergies since we had the windows open for a little while last night. Given a 24+ hour difference between her beginning meds and Zachary’s potential return home, the transplant doctors do not seem concerned. We were only told to take the obvious precautions of hand-washing, minimal contact, and no face kissing.

Since everyone got home it has been a combination of house cleaning, organizing, and shopping for cleaning products, house supplies, and Nana’s favorite, clothes shopping for her grandkids – Zachary was in need of summer clothes. I feel helpless in my desire to get everything ready for his return home. I keep running through my mind all I want done, and yet all I can do is make lists for Mom and Max. I’m thankful for all their efforts.

We are grateful for making it to Day +18 and moving slow and steady toward tomorrow.

May God continue to bless you and yours.

Saturday, April 17, 2004 12:19 AM CDT

Day +17

WBC 2.1

It is a beautiful day here in Richmond, with the sun shining and the flowers in full bloom. The weekend is supposed to be in the low 80’s; we are thrilled to have some much needed sunshine.

Zachary had a pretty good night once I finally got him to sleep. He was pretty irritable late into the evening. It is hard to say exactly what it may have been from; he seems to be having gas pains, his poor little bottom is just raw, and to complicate matters his teething is also in full force. I personally think that he should not have to go through the discomforts of teething with everything else he has had to deal with, but I think this one is definitely out of my hands.

He is continuing to hold down all the oral medications without any problems. I am so very thankful for this, because some of them taste pretty nasty. Yes, I have tried them. I figure if he has to take them, I should at least know what they taste like and what he must tolerate.

When he woke up this morning his skin was showing more signs of graft vs. host. They have decided to place him on oral steroids to help calm the skin irritation down. He is red from his head to his toes. We were told to be ready for him to get a little puffy from being on the steroids. This is old hat to us since he had to be on them prior to transplant for the HLH pretransplant protocol. We will see how he does, hopefully the steroids will calm the effects of the GVH and it won’t get any worse.

Sydney is doing great. She spent some quality time with her daddy last night which I know they both enjoyed. Mom and I were talking this morning about what a sweet disposition she has and how loving she is of others. She is my sweetness and she makes me so proud to be her Mommy.

I am starting to get anxious to get home and yet I am afraid if I start to get too excited about it, something will happen and we will be in here longer. You have to mentally prepare yourself for the long haul when you are admitted in order to make it through this. I feel like we have handled things pretty well and when I felt as though I was faltering I prayed for strength to make it through the hard times. I know that God has been by our side through all of this and I feel blessed to have his presence surround us.

I wanted to mention our angel donor, he is not ever far from our mind and we will forever be thankful for his kind and unselfish gift of himself. I pray that God will watch over him and his family. I hope he knows what a great man we think he is for what he has provided Zachary with; his second chance at life.

I hope you all enjoy this lovely April Saturday. Please continue to keep Zachary in your prayers, for strength, endurance to overcome all that he is faced with. Your prayers, love and support are very much appreciated. You all raise our spirits on high.

May God bless you and yours!

Friday, April 16, 2004 8:36 PM CDT

Day +16

WBC 1.6

There is really not a lot to report, thankfully.

Zachary is doing great; he is eating and keeping everything down. He has also started taking new oral medications which he has done beautifully with. He has been taken off some of his I.V. meds and will be starting them orally tonight. I hold my breath every time we give him something new with the fear that he is going to bring it back up. But so far he has not had any problems with it. They will take him of the rest of the I.V. meds tomorrow and we will see how he does. We should know if he is going to have any reactions or spike a fever before we are dismissed. We pray that everything continues to go well.

He spent the majority of the afternoon playing. He loves to watch out the door at all the people that walk by in hopes that they will stop and talk to him. The more attention he has the happier he is.

I am doing pretty good; I am finding myself in constant worry about all of the what ifs
lately. I am sure it is all the anticipation of going home. There are so many things that can keep us here or readmit us and it can all happen so quickly. I also feel helpless in getting all the things done for the house. The list of to dos seems to keep getting longer and longer for Mom and Max. I am so thankful for all that they are doing to take care of everything.

Sydney is being a little doll, she has been helping Mom with things at the house. I spoke with her this afternoon and she heard Zachary in the background, so of course she asked about him and I told her he was starting to feel a little better. I asked her if she would like to talk to him. She did and when I listened to what she was doing, she was singing him Twinkle Twinkle Little Star, which is a song that she has sang to him since he was born. She then told him that she wanted him to come home. She is so sweet and Zachary thinks she is the best. He loved hearing her sing on the phone to him.

When Sydney was born I joined a Mom’s group to become involved with other stay at home moms. It has been a great asset to me over the past few years and during this time in our life they have all been very supportive and I feel very fortunate to be part of such a quality group of people. They have recently supplied us with a large quantity of items that I usually send Max to the store for. Although, we will hopefully be discharged on monday, these things will be a huge help with our daily clinic visits as well as at home. I am also very thankful for the meals that have been provided as well as all of the offers to help in any way. You have all opened your hearts and devoted time to helping out my family and I am so very grateful to each and every one of you. Please accept my sincere appreciation

Thank you so much for all the prayers that are all being sent our way.

May God Bless you and yours!

Thursday, April 15, 2004 5:17 PM CDT

Day +15

WBC 1.2

NORMAL BLOOD COUNT RANGES
WHITE BLOOD CELLS (WBC) = 6.0 – 17.5
HEMOGLOBIN (HGB) = 9.5 - 14.5
PLATELET (PLT) = 165 - 350
IMMUNE SYSTEM (ANC) = 1500

In my mind I continue to replay the events of my evening with my Mom and Sydney. It was exactly what I needed. Mom had told Sydney that she had a surprise coming, when I arrived at the house they were in the vehicle ready to go to dinner. I walked up next to her window to surprise her and if only I could have framed the sheer delight in her face and the glow of her smile. I was thrilled that she was so happy to see me, I felt light on my feet and for the time being I was giving her exactly what she needed. We headed to dinner and after that we went to The Build a Bear workshop where she got a little horse that she clothed with pink silk pajamas. Then to end a perfect evening we got ice cream for dessert. This has become Sydney’s favorite treat. I found myself watching her expressions and being proud of the happiness that illuminated from her. Children are a true gift from above.

Zachary had a pretty good night, I felt as though I was up continually throughout the night for one reason or another. He didn’t go to bed until late, and then he was awake at 3:00a.m to eat and then again at 6:00a.m. At 3:00a.m he also decided that it was time to play and give me those big smiles that can make you feel like the most special person in the world. It was nice; we had about three other nurses in the room with us, talking and helping entertain. He enjoys having an audience and having everyone’s undivided attention.

His day has been pretty good; he has had some good naps, nursed well and we have played quite a bit. We are having a few issues with vomiting after he has cereal or if he gags on the thick mucous from the mucositis. His doctor is not concerned, this is all part of the process and we will need to retrain his body to accept the foods. The fact that he is still nursing without any problems is a good sign. He is progressing wonderfully and is doing everything as he should be and some thing’s maybe even a little better. That’s our boy!

Okay, now I hope everyone is sitting down for this because I know I should have been when I heard the news. We are looking to be discharged on Monday, yes you read right, Monday, April 19th we will be heading home. We are thrilled and pray that everything will happen accordingly over the next 4 days to allow this to happen. He will obviously need to be doing as good as he is now and hopefully better. The transition to oral meds from I.V. meds will take place over the next few days and hopefully he will tolerate them and be able to hold them down. We will also need to see exactly how much of the I.V. nutrition he will need to be on at home. There are a lot of things that need to fall into place for this to happen, but we are excited even at the thought of it. The other side of the coin, is fear, fear, fear, that something will happen when he is at home: fear of having to be readmitted (which we are told is a high probability) and having to explain all of this to Sydney again. I am concerned about the transition from the hospital to home as far as keeping him safe until his body is strong enough to fight off things on its own. The worrying about all of this could send you into a tail spin, so instead I will remain positive that it all works out and I will continue to pray for the strength to do what is needed of me.

Thankfully, I have Mom here who has already started doing everything necessary to get the house in tip top shape for our arrival home. I have no doubt that between my Mom and Max they will have everything taken care of. You see, on strict instructions from the doctor, the house has to be extremely clean and dust free at all times. All of theses things if left undone could impact Zachary’s health. Obviously, we are going to do whatever is necessary to keep him safe. I feel like we keep our house pretty clean, but this takes it to a new level.

Although we may be going home, we will continue to come to the transplant floor for clinic visits everyday for quite awhile. They will be monitoring Zachary’s progress and watching for any concerns that may arise. These will be long, busy days, but we are ready for whatever we need to do.

Okay, now that I have shocked all of you, let me express my appreciation to you for all of the support, the many prayers, love and friendship along our journey. Our journey is far from over; some could say it is only starting. Many things can happen throughout the process, so we continue to ask that you lift us up in prayer. It will be weeks, months and even a couple of years before we know for sure that the transplant has been a complete success.

We continue to thank God for the time that he has given us together and we always remember what a gift we have been given with our children, family and friends.

May God Bless you and yours!

Wednesday, April 14, 2004 4:28 PM CDT

Day +14

WBC 0.3

Zachary and I had a great night. He was up only one time and that was because he decided he needed to eat at 2:30 this morning. I guess he is taking the nutritionist serious when she said to let him eat whatever he wants, whenever he wants. I am all for it, whatever it takes to get him healthy and home.

Zachary is taking a nap as I journal. He had a busy morning, doing things that he would prefer not to do. Bathing has become a time that neither one of us look forward to. He hates having sponge baths and I hate him getting so upset. We also had to change the dressing on his chest. His poor little chest looks so extremely sore, and it looks as though the skin around the new suture is starting to fold over the line again. This has me concerned because we cannot risk it becoming infected and losing the line. It will be so nice when my discussions with people do not have to do with lines that are hanging out of my baby’s chest. It just is not natural.

We are still battling some skin concerns. It is not anything that has the doctors concerned since it is not getting any worse. The irritation on his bottom is also still pretty nasty. We are trying some new medicines on it to see if we can keep him comfortable and help it to heal. His poor little bottom!

I am doing great. I have decided to take some time away from the hospital later this afternoon. Max is going to stay with Zachary and have some quality Daddy time and I am going to go home for a few hours and surprise Sydney. I can hardly wait to see the look on her face. I am sure we will come up with something special to do.

We have added some links of other children and families that are dealing with different types of illnesses. If you get a moment to read their stories you will find that all of these children are blessings and offer so much to their families. I am sure they would love to see that you stopped by to check on them.

We are very thankful to all of you for touching our lives in so many positive ways. Please continue to keep Zachary in your prayers for continued recovery with minimal discomfort, engraftment, and a life that will flourish more than it already has.

Staying strong, we take things slow and steady.

May God continue to bless you and yours!

Tuesday, April 13, 2004 8:18 PM CDT

Day +13

WBC 0.2

As I sit in our room that is decorated to reflect happiness, love, and faith; I am proud to say we are doing great. The ceiling of our room has pastel lights hanging from it which were given to us by a very special person on Easter morning. Our walls have poems that were written by my Dad to Zachary and myself. Then throughout the rest of the room are pictures of loved ones and many uplifting cards that have been sent to us during our hospital stay. There is also a bouquet of purple balloons that my dad had brought to the hospital the day of transplant. We have made it feel as close to home as we can get.

Zachary is doing remarkably well; his counts are starting to show signs that good things are headed our way. He had physical and occupational therapy this afternoon and I was delighted to here that he is progressing forward as he should be. He is not interested in placing weight on his legs, but that could have to do with some of the medicines that he is on. They say that it causes you to feel as though you are having growing pains. I am sure that he will catch up very quickly with standing once we are off the medicines and he is at home. Everything will happen in due time.

His social skills continue to shine. His personality is just blossoming. I was told by one of the nurses this weekend that if cloning were possible he would be the baby to clone. With everyone he meets and everything that he has had to endure he stills greets everyone with a warm and loving smile. He simply amazes me and I am so very thankful that God has blessed us with this wonderful and loving little boy.

I also met with the nutritionalist this evening. There was a concern about Zachary being so small when we came into transplant because typically you lose weight during transplant and he really didn’t have the weight to lose. When he was placed on the growth chart for a child his age, he wasn’t even registering. Well now with the help of the I.V. nutrition and the fact that he has started eating so well after transplant he is actually showing that he is above the 90th percentile. Can you believe it, he didn’t lose at all he actually gained and did better than they expected. I was thrilled to hear this; I am hoping to be able to get him off the I.V. nutrition before we go home. I am going to be weighing him before and after every feeding and keeping records of it all for the next 48 hours. Then we will evaluate what he is getting when nursing and determine how much if any I.V. nutrition he will need. I pray he can come off of it, but I will do whatever is best for him.

I am doing good. I am continually being told the past few days how tired I look. This is what every woman wants to hear when trying to keep her spirits high. I guess when you are primarily inside for three weeks it can start to have effects on your looks. So with this in mind and from my perspective I am doing good, emotionally, physically I am a little tired but I will continue to stand by my little guy. I take each moment as it comes and I pray that God will continue to bless us with his presence.

To all the wonderful people in our lives that touch us in so many ways, we thank you from the bottom of our hearts.

Taking things slow and steady from Virginia, we continue to hold our heads high and thank God for every moment we have with each other.

May God continue to bless you and yours!

Monday, April 12, 2004 7:51 PM CDT

Day+12

WBC 0.4

As the Jefferson’s say, “Movin On Up!”

However, we do expect the counts to drop down again as a typical part of transplant. In the next 5 days or so his white cells should become more predictable.

In the time that I have spent with Zachary today he has been the definition of happy. He wants everybody’s full attention and seems a bit ornery in his desire to pull Stacy’s hair and tug on her lip. He is also showing improved strength and balance. He is able to lift himself up when lying upon his boppy pillow and Stacy says he sat upright without support for quite a while today. He has physical therapy tomorrow and we believe they will be impressed with his progress.

Zachary does have a slight diaper rash, which is also to be expected.

He continues to avoid the heavy pain medications. Benadryl seems to satisfy his needs. The doctors continue to watch signs of Graft vs. Host Disease, but do not seem concerned by his slight rash, which is a common indicator of the 1st stage. Another odd part of this cure is that a small version of GVH is actually good.

Rice cereal is part of his diet as of this morning. He’s holding it down. Tomorrow we will re-introduce #1 fruits.

It is bedtime now, so goodnight. Thank you for your prayers and watching our site to hear how our family is doing.

May God continue to bless you and yours.

Sunday, April 11, 2004 8:33 PM CDT

Day+11

WBC 0.1

Happy Easter to everyone.

Today we celebrate the resurrection of Jesus Christ and watch His work as he heals Zachary and continues to touch all our lives.

No platelets, blood transfusions, or irritated mouth sores in the last day. He even went about 12 hours without any pain medicine. Most importantly he has begun to breast feed again....this pleases all of us, most especially Stacy. It is in small quantities relative to pre-transplant amounts, but he is holding the milk down and hasn’t lost his love for the breast (a man after my own heart) :).

The day was great. Sydney, Stacy, and I went to lunch together while her Mom watched Zachary. We had a great time. When Sydney came into the hospital room for a very brief visit with Zachary, she walked in and announced, “Mommy, here I am!” She adds such great joy to our lives and we are blessed with her warmth and love for us and life.

Stacy’s brother, Dustin, and his girlfriend, Jenae, helped me with some room rearrangement this afternoon while watching Phil Mickelson win his first golf Major. Stacy called the house just before he sunk that incredible putt, so we all enjoyed the moment together. Dustin also added a light to Zachary’s room and fixed a speaker issue we’ve had on our computer for a few months. Thank you, Dustin.

My Mom and Wilbur may be coming to visit sometime in May. I’m already coming up with some good yard projects that Wilbur can help me with. For those of you that know me, I need all the help I can get with handy work.

We are holding strong and taking this slow and steady.

May God continue to bless you and yours.

Saturday, April 10, 2004 9:04 PM CDT

Day 10

WBC 0.1, hopefully we will start seeing some changes with this over the next week.

I hope everyone is having a happy and safe Easter weekend. We are all enjoying ours immensely.

Zachary had a great day; it was spent playing, laughing and loving. The best part of the day for both of us was when he was able to start nursing again. Hooray! I was absolutely thrilled when the nurse and doctor said that we could try and see how he would do with it. He had not nursed since a couple of days after transplant. He did great; it was as though we had never stopped. He did not have any nausea, cramping or discomfort. We will take it slow and try to get him back to eating what he was before transplant, but so far so good. If everything goes well over the next few days we may be able to start adding his cereal. He continues to impress me with his strength, courage and determination.

Zachary is also becoming a little mischievous; pulling hair, tugging on his lines, and taking his blood pressure cuff off. When you say anything to him about what he is doing he smiles with pride at his accomplishment to get attention. This also makes me proud; it is a sign he is feeling good.

He also has had less pain medication today, which thrills me as long as he is comfortable. The fewer things that he has going through his body the better in my opinion. The Tylenol and Benedryl seem to be helping enough that we do not need the stronger stuff as often.

Mom spent the afternoon at the hospital with me, while Max, Sydney, Dustin and Jenae all went to tour Washington (Sydney calls it “the big city”) for the day. It was nice having Mom here to talk with and I loved watching how happy Zachary was to see her. I thank God that she is my Mom and that she is so dedicated to her family.

I am looking forward to spending some quality time with Sydney tomorrow. I am not sure what we will do, but it really doesn’t matter as long as we are together. I have not seen her in 2 weeks and it feels like forever.

We hope you all have a very Happy Easter. We ask that you continue to pray for Zachary’s health to restore, the stem cells to engraft and for him to have minimal if any graft vs. host disease. Your prayers continue to lift us up.

We are taking things one moment at a time and slow and steady in Virginia.

Max has added new pictures of Transplant Day. We hope you enjoy!

May God bless you and yours always!

Friday, April 9, 2004 5:55 PM CDT

Day +9

WBC <0.1

This will be a quick update, because there really isn’t anything to report. I believe the saying is, "no news is good news."

Zachary is doing great, he is sleeping well and his temperament is absolutely pleasant. He spent the majority of the morning playing, and being entertained by all of us. The mucositis is still present and will be for awhile until his white blood counts start to come up. But with the pain medicine he tolerates the discomfort quite well. He is my little hero and he has taught me so much about life and about myself in the short time that he has been with us.

I am doing pretty well; I have felt a little down today. I am really missing Sydney and can’t wait to hold her in my arms. I am hoping to be able to spend some time together on Sunday. Other than that the hospital life is not bad. The transplant team makes you feel like you are part of a very special family. They are a very special group of people.

We are continually thankful for all the generosity that you have all shown us over the past
Six months. Your prayers and words of encouragement are forever appreciated.

Dancing like monkeys in room 10-005, we continue to take things slow and steady.

May God bless you and yours this wonderful Easter weekend!

Thursday, April 8, 2004 2:45 PM CDT

Day +8

WBC <0.1

It has been a crazy 24 hours and I am ready for a little bit of calmness in our day. As I sit and journal Zachary is taking a much needed and deserved afternoon nap.

I had a wonderful birthday, thanks to everyone for the kind words, gifts, cards and special treats that were left on the door. Max and I had a nice evening with take-out from Olive Garden and a movie. It was nice to be together, I truly enjoyed his company.

Our evening ended at around 10:30 when the nurse came in to give him his pre-meds prior to his transfusion and noticed that Zachary had a moderated amount of bleeding coming from his mouth. Although this is not completely unusual considering the mucositis and low blood and platelet counts; it is not something that a parent ever wants to see happening to their child. Max and I were both concerned, but the nurse was very calm and handled the situation beautifully. After a little while the bleeding stopped. Zachary had a rough time with the thick mucous secretions and coughing, so we were up a good portion of the night. He also received platelet and blood transfusions to give him a boost. Needless to say when morning came I was not quite ready for it. Thankfully I received a big morning smile that continues to take all the stress away from a day.

Today has also been pretty eventful. Zachary’s Hickman line needed to be evaluated by the pediatric surgeons. One of the sutures that were holding it in place got pulled and the tissue was puling over the top of the line. This is not normal, and the tissue was not responding well to the trauma. Thankfully, Max was here when they came up to look at it, because the surgeon was a little more aggressive than what I am comfortable with considering everything that we have gone through to keep this line healthy. Between Max and I both expressing our concern at the need to keep the line uncompromised, the surgeon removed the suture that was pulling and causing problems with the tissue and placed 2 more sutures around the area. His nurse was also very supportive and protective of the situation. Again, thank goodness for good nurses. Zachary’s poor little chest looks like a little battle field. It is a good thing he is already on pain medication because his little chest looks so sore.

I want to express our gratitude for all your kind words, uplifting prayers and support thus far on our journey. We appreciate each and every one of you and ask that the prayer chains continue. We need them now more than ever.

Staying strong and holding our head high we continue to take things slow and steady.

May God be with you and yours always!

Wednesday, April 7, 2004 2:32 PM CDT

Day +7 HOORAY 1 WEEK OUT! :O) :O) :o) :o)

WBC <0.1

First of all let me thank all of you for the birthday wishes. I have been given many great gifts today; a great nights sleep, a morning smile from the most precious baby boy ever, and a special happy birthday from my sweet Sydney. What more could a Mom ask for on her birthday. I feel very blessed to be where I am in my life and to be surrounded by such loving and caring people. To celebrate, Max has taken the day off and we are going to spend time together this afternoon and watch a movie in the hospital room while Zachary sleeps. I am so looking forward to our time together, I miss him greatly.

Zachary had a good nights sleep and is taking his nap while I am journaling.
We seem to have his pain under control. He seems to have more mucous that he has been gagging on quite a bit today and there really isn’t anything that we can do for that other than suction and help him get it up. Through all of that, he still continues to smile and play. Zachary’s day consists of medicine, sleep, play, medicine, sleep, medicine, play, medicine, sleep, medicine, play, sleep and did I mention more medicine (there is more to it, but that is the bulk of his day). There are so many different things going through his tiny little body. I continue to pray that HLH is a thing of the past and that he will not have any organ damage or other side effects as it relates to all the different medicines and chemotherapy that have been needed for transplant. It will take time before we know exactly what the outcome of everything is to be. So we take a sigh of relief with each milestone, we are delighted with every little bit of good news and relish in all the smiles that Zachary gives us. When Zachary was diagnosed back in October one of his Doctors said that a baby that smiles is a baby that is feeling pretty good. So, we are thankful and appreciate all his smiles, it leads us to believe that he is feeling good and that we are headed in the right direction.

Sydney is doing well; her allergies and cough seem to be calming down some. She has been testing her boundaries quite a bit lately. I guess that is a good sign that she is truly three years old. My brother and his girlfriend will be here tomorrow, so that will give her more entertainment. She talks about her Uncle D. all the time, so it will be interesting to see what kind of bond they form. I hope they all enjoy each other.

The love, prayers and continued offers to help are very much appreciated. There isn’t a day that goes by that we don’t thank God for the blessing of family, friends, and the many welcomed newcomers that have come into our life to pray and cheer for us on our journey.

As we stay steadfast on our journey of slow and steady we continue to pray the donor cells engraft, Zachary’s health continues to improve and that are bond with God only grows stronger.

May God continue to bless you and yours always!

Tuesday, April 6, 2004 12:40 AM CDT

Day +6

WBC <0.1

First of all let me thank you all for your prayers and kind words. We have definitely felt the loving arms of our family, friends and heavenly father around us.

I am relieved and happy to report that the antibiotics are working, Zachary has not spiked a fever since yesterday morning and his heart rate and respirations are much better. We actually both got quite a bit of sleep last night which I am so thankful for. We are now working towards getting his pain under control. He has been getting morphine, but he is having a slight reaction to it with a lot of itching. So the doctors have called the pain management team to determine the best way to keep him comfortable through the mucositis. We are looking at another week to ten days before the mucositis will start to heal. Everything relies on his white counts going up and that takes time. So for now, we keep him comfortable and happy. His temperament is still just amazing to me considering what he is going through and how painful his mouth looks. We spent brief moments this morning playing with blocks, balls and I even got a few laughs after I jumped around the room like a monkey. It is amazing what people will do to see their child happy. I am thankful none of the nurses walked in during our silly moments. I am sure that they would have been a little concerned about me; they probably would have recommended that I get out of the room a little more.

Sydney is still doing pretty well. She is still battling her allergies, but as mom had said it isn’t slowing her down any. I have pictures all over the room of her and it warms my heart to see her sweet smiling face. I miss her tremendously and love her more than words could ever express, she is my little sweetness. Mom, thanks for taking such good care of her.

One quick note, as I walked through the hospital this morning for my morning break, which I get every morning while Max comes in before work to sit with Zachary. I witnessed a woman in the lobby who was crying and talking with someone from the hospital. She said she had been asking all the churches in the area to pray for her family’s situation. I felt so bad for her and wanted her to know that God will watch over her. I pray she will find comfort in her times of need. We all have those moments when we need that extra support, and as I watched this lady it reminded me how fortunate we are to have all of you praying, supporting and cheering us on. We feel blessed to have all of you in our lives.

We ask that you continue to surround Zachary with uplifting prayers. He is a little fighter, with a personality and smile that can take your breath away. I am so very proud to be his Mommy.

Holding our heads high and taking each moment slow and steady. We pray that God will bless you and yours today and always!

Monday, April 5, 2004 5:41 PM CDT

Day +5

WBC 0.2

My heart is heavy as I journal with concern about the many things that Zachary is faced with and the discomfort that he is having. Our days are beginning to run into our nights; Zachary had another rough night last night. We may have got about 2 hours of sleep and that is being generous. He had a slight fever off and on most of the night, diarrhea and was very uncomfortable. Just when I would think I would have him calmed down he would start moaning and cry out. I knew when Monkey wasn’t comforting to him and when walking and singing with him didn’t seem to make him feel better that it was time to give him something stronger to help ease the discomfort. I called the nurse in about 4:15 a.m. and she gave him a small dose of morphine which seemed to take the edge off. He still wanted to be held and I was happy to oblige. His breathing, moaning, and over all discomfort seemed to lessen for the time being. I can’t tell you how much it pains me to see him go through this. He is my sweet baby and to see those big blues eyes look up at me with a look of discomfort just breaks my heart. Oh how I wish we were not in this situation and we were planning our summer vacation together instead.

As the day has progressed Zachary has had times of comfort and times of discomfort. He has been watched very carefully by his doctor today. In fact they called in the PICU (pediatric intensive care unit) team in case they are needed and the need arises to transfer him then they have seen him before hand. Zachary’s doctor said it is like an insurance policy, you get everyone on board in hopes that you don’t need them but if you do they are already aware of the situation. This has me concerned, I appreciate them being cautious but as a parent you can’t help but have some fear. They are concerned about the fevers, the high respiratory rate and high heart rate. His heart is working harder than it needs to and we are in hopes that a change in the antibiotics will cover whatever is going on. The thought is that there is an infection somewhere and the broad spectrum of antibiotics will cover it. We pray that it does, we have a great amount of confidence in the doctors and I know that they have his best interest at hand.

Max and I are nervous, this is a hard thing to sit and watch your child endure. The mucous is so thick that he is continually gagging on it and his tissue from his mouth to his bottom is raw from the effects of the chemotherapy. At times you want to scream, but what good would that do. You continue to ask yourself why, but the complete answer cannot be seen at this time and may not ever be seen by us. So we wait, endure the pain of your child suffering, we pray more than we ever have in our life and we cry.

Heavenly Father, as we sit here today we ask that you place Zachary’s little body in your healing hands, we ask that you give him comfort, and strength to win the battle against this horrible disease. We pray that you guide us to do the right things for our baby, that you stand in our corner to pick us up when we are feeling weak. We ask these things in Thy Name. Amen.

We continue to ask for your prayers for healing, that the fevers stop and the antibiotics start working. We are continually grateful to all of you who so faithfully check in and leave inspirational, touching messages.

Continuing to take things slow and steady in Virginia.

May God continue to bless you and yours!

Sunday, April 4, 2004 6:00 PM CDT

Day +4

WBC <0.1

There really has not been much change since I journaled yesterday. Zachary has spent the majority of his day sleeping. He has moments of being uncomfortable and is able to comfort himself by rocking side to side and holding on to his little monkey. After speaking with the doctor this morning the general consensus is that we hold off on anything strong, like morphine, until he is not able to comfort himself. The last thing I want him to be is uncomfortable, but I am also hesitant for him to have more medicines unless it is necessary. So while he continues to comfort himself, and be relaxed enough with the Tylenol that he can sleep, we will wait.

We noticed last night that he has started spitting up a little blood when he coughs. We have been told that this is normal. The mucositis is in full swing and we are seeing all the signs. Zachary has also had to have two platelet infusions in the last 12 hours. This is also to be expected, with wiping his system out with the chemotherapy. It will be awhile before his body is able to produce platelets on its own so we are expecting quite a few infusions over the next few weeks. He has started to nurse some for comfort; this pleases me, I feel like I am contributing to his comfort. We have been told that our journey will only get worse before it will get better. So we prepare mentally and physically the best we can, praying for the strength that will be needed and the guidance to do the right things to help Zachary heal.

Max spent the day at the hospital with Zachary while I left for a little while, my first time away in a car in 2 weeks. My time away was bitter sweet. As it was nice to be outside, I was not able to do what I really wanted, which was spend time with my sweet little girl. She has been struggling with allergies and started having a cough last night. I can’t risk getting sick or getting Zachary sick since he has no immune system to fight anything off. So, instead I went to work and got some things taken care of that were going to come up this week. I also went to get a goody bag to hang on the door for Sydney. It was hard to go to the house and know that I couldn’t go in. I am definitely torn between the two of them; I love both of them immensely but I need to keep everyone’s health a top priority. So I drove down the street with my eyes full of tears hoping that she will understand this is for the good of everyone. Max, thanks for always being by my side and knowing exactly what I need to hear. I love you!

Please keep Zachary in your prayers that he will continue to heal and that the donor cells will engraft. Slow and steady, slow and steady!

We continue to hold our head high knowing that we are being lifted up in prayer by so many wonderful people. Thank you always!

May God continue to bless you and yours!

Saturday, April 3, 2004 5:00 PM CST

Day +3

WBC 0.1

As I sit here today, I am journaling to ask for your prayers, prayers that give Zachary strength, comfort him in his time of pain and allow him a calmness to be able to sleep and help him to heal.

We have hit some of the rough roads of our journey. Zachary was up all but maybe 2 hours last night. His discomfort started with the mucositis, then he spiked a high fever, had diarrhea, and then if this wasn’t enough he started vomiting. At one point in the night I was actually standing amidst a pile of vomit holding Zachary waiting for the nurse to get towels to help me clean everything up. I am sure that was more information than anyone really cared for. Oh ,I for got to mention on top of all the medical things going on he has started to try and cut 4 teeth, they are ready to come through at any time. Bless his heart, when it hits, it hits heavy. Thank God for great nurses because we kept ours hopping last night. At all times she had Zachary’s best interest at hand and for that I am so very thankful. Not to mention the doctor was being called quite regularly, for a constant update on his changes. He had slowed down on his eating last night; he nursed more out of comfort and now as the day has progressed he doesn’t want to nurse at all. He is now getting TPN through an I.V. bag for the nutrients that he needs. This breaks my heart, I so want to comfort him and there really isn’t much I can do other than just be here for him. He is also having a hard time relaxing to get some really good sleep. My heart breaks for him, what I wouldn’t do to step in to his little shoes and do this all for him. He is most comfortable lying in his bed holding his little monkey. Thank God for the little monkey! As hard as it is to watch him go through this I know that it is necessary, and it is the only viable option that we have. Through all of this I continue to find comfort knowing that this is the path that God has chosen for us. We will continue to walk this path in our journey hand in hand with God guiding us.

Through all of this Sydney continues to shine. She had a great time at her music class. Mom said she was a little reserved at first but then came out of her shell after a little while. She has spent some much needed quality time with her daddy the past couple of days. I know this makes both her and Max happy. She is such a little sweetheart, I miss her greatly; everything from the tight hugs, to the constant questions.

Tomorrow will be two weeks that we have been in the hospital and to be honest we are handling it rather well. We take each moment as it comes and continue to pace ourselves slow and steady.

Please continue to pray that the donor cells engraft, we will not know this for sure until day +30. But we will continue to pray and cheer them in the right direction.
We are continually thankful for your heartfelt offers to help, your prayers and the outpouring of love that everyone continues to show. Thank you all from the bottom of our hearts.

Holding our head high in Virginia, we pray that God continues to bless you and yours!

Friday, April 2, 2004 10:51 AM CST

Day +2

WBC 0.1

As I sit and journal today I am overcome with emotion for the love and support that everyone has shown us on this journey. Zachary is taking his morning nap and I decided to read the guestbook entries. Wow, what an outpouring of love and faith we are feeling. Max and I feel so blessed to be surrounded by such loving and supportive people. Thank you for being in our corner and continually cheering us on.

Zachary is doing pretty well. He had a rough night last night, the mucositis has started to kick in and it causes him to cough and gag which wakes him up and scares him a little. So I soothe, cradle and give him the love he needs to calm him down. He has slept the majority of the morning which is exactly what he needs right now. He is currently receiving his last dose of ATG, “Hooray”.

We are continuing to take things one moment at a time and keeping our head held high for we know that is the only way to be.

Slow and steady continues to be the pace that we are hoping to set.

Please continue to lift Zachary up in your prayers and pray that the donor cells engraft.

May God Bless you and yours!

Thursday, April 1, 2004 5:22 PM CST

Day +1

WBC .4

Today is the day we get to starting counting up. What a blessing it is to wake up and know that we are moving forward. I continue to look back on the events of yesterday in awe. I feel as though I witnessed the greatest given gift and a miracle all in the same moment. Max compared the excitement to a labor and delivery, but we already knew what the goods looked like.

Zachary is doing great today. He has spent the majority of the day sleeping, which is exactly what he needs. When he is awake he is either eating or we are playing. He is so sweet and is becoming extremely nosey about everything. He does not miss a beat. He has had his first dose of ATG after transplant and has done wonderfully. Sweet baby boy you are mommy’s little hero and I continue to admire your strength and determination. Hold God’s hand, baby, and He will see you through this.

Sydney is doing well; she is being loved and entertained by her Nana and Papa. She started her music classes back up today. It is nice to see her be able to do the things that she loves. We stopped a lot of these things after Zachary was diagnosed with the fear that if she was around other children she could get sick and this would hinder Zachary’s health and ability to make it to transplant if he got sick as well. That is behind us now, so she can enjoy her time with her friends and do the activities that she loves. We will probably need to make a few adjustments to things when we are able to bring Zachary home, but for now we take each moment as is comes and enjoy life’s little pleasures. Sydney, we are thankful to you for being so flexible and patient with us. We love you sweetness.

I wanted to answer a question for one of our guestbook entries. Zachary is currently 8 months old. He was born on July 21, 2003. He was diagnosed with HLH when he was 3 months old and he continues to be a child that teaches his parents how fortunate we are to be alive and have the love that surrounds a family. I am grateful for your interest, support and prayers.

There are many things in life that we should be thankful for. Max and I have been blessed with many wonderful treasures in our life, the ones that stand out the most are our children and finding each other. In life things can change in an instant, so we enjoy each moment, hug a little longer, enjoy that extra book at bedtime because your child wants to be with you, and count every moment with your family as a day you were again blessed with.

We continue to strive for slow and steady. Or, as a friend referenced in the guestbook, we are running a marathon, not a sprint.

Thank you so much for your love, support and uplifting prayers.

May God continue to bless you and yours!

Wednesday, March 31, 2004 6:06 PM CST

Day 0

Transplant Day

What a blessed day it has been as we all came together in our purple to support the fight that Zachary is winning. We made it, was the overwhelming feeling that was felt as the stem cell transplant began. Transplant started at 2:00p.m. est and we were finished at approximately 2:30p.m.

Zachary and I were greeted this morning by many happy and friendly faces. Everyone checked in, wished their best, and was sporting their best purple attire. I felt so proud walking in the halls of the 10th floor today seeing the number of people that were wearing purple and doing it in honor of Zachary’s special day. The support on this unit and the feeling of family is a blessing. We thank you all from the bottom of our hearts.

Before the transplant began Max asked Dad to lead us in prayer. We all gathered around the crib held hands and prayed for God’s will to be done, for protection and strength for Zachary, protection of the donor, strength for the family and guidance for the transplant team. As the stem cells infused into his little body I had a great sense of peace. It was as though someone had lifted the stress from my shoulders and reassured me things would be fine. My worries, for the time being, diminished as I watched Zachary getting his second chance. Don’t get me wrong, I know we have some rough roads ahead, but I also know I have a hand from above always guiding us on our journey. Max was filled with emotion and overcome that we made it to this point. There is a sense of peace and gratitude for the generous donation of the donor and yet we still have a mountain to climb. The remaining portion of the day was relaxing and peaceful. Zachary was not at all interested in what was happening, as he grabbed his monkey, tucked and rolled over to go to sleep. If he only knew the milestone that he hit today. One day he will know and we will share with him all that took place and the wishes and prayers that everyone had for him. After he woke up, we spent time playing with and enjoying the excitement that fills his eyes as you come near to be with him.

We were also blessed today with a very special gift and card to Zachary from his donor and his family. It was a beautiful off-white bear with a gold bow. He is named Pecan. Zachary couldn’t get his hands on it fast enough. We took a few pictures so hopefully we can post them for everyone to see soon. We, again, want to thank our donor for the contribution that he has made, your kind heart, generous spirit and willingness to give of yourself. I am sure you have earned a special place in heaven. God be with you and keep you and your family safe wherever you are.

Our motto from here on out is slow and steady, just like in the story about the tortoise and the hare. We wait and pray for the donor cells to grow and engraft. We may start seeing signs as early as 14 days, but for the time being we take one moment at a time and thank God for every opportunity that he has given us.

Thank you to everyone who has shown their support through your guestbook entries, your prayers, the color of your clothing today, or all of the above.

May God continue to bless you and yours!

Tuesday, March 30, 2004 6:52 PM CST

Day –1

Again I awake this morning with a great appreciation for the generosity of a stranger, a stranger who is so unselfishly giving of himself so that our precious baby will have all the opportunities in life. I pray that you know what kind gift you are giving and how special you are to our family and to the many others that are following Zachary. You will always hold a very dear place in my heart. Hopefully one day we will be able to meet you and tell you in person what a gem you are, but until then may God protect you, keep you safe and watch over you.

I wanted to let everyone know that Zachary’s illness has also found its way to help others who are in need. So far from all the people who joined the bone marrow registry on Zachary’s behalf there have been atleast two people who have been called as potential matches for others. This is one more way that God has chosen to use us as a tool for others. We are happy and honored to help on His behalf.

Zachary had a pretty rough night after the first ATG infusion. At around 7pm he started throwing up, running a very high fever and having labored breathing. The nurses were very diligent in their work and responded to his symptoms quickly. After the appropriate medications were given to treat his symptoms he seemed to start feeling a little better. I continue to be impressed by the transplant teams’ intelligence and the care they give their patients. They are a quality group of people. He has now had 3 infusions of the ATG and is due to have 1 more before transplant tomorrow. This morning he was fussy and wanted to be held more and seemed to just have a cry of someone who just feels pretty cruddy. When talking with the nurses about his reactions, they said it is very normal to have side effects. They have seen very few, if any, that have not ever had some type of reaction. I was just informed that Zachary’s blood counts have started to drop. His white blood count (WBC) is 1.6, which could also be the cause for his temperament, he may be feeling a little achy. By tomorrow his WBC will probably be non-existent, which is exactly want we are wanting before transplant. Zachary had a great afternoon. He entertained Nana and Papa by continually calling out to them to keep their attention. We also played a lot of peek-a-boo. What the baby wants, the baby gets. His smile and laughter lifted my spirits; his resilience is simply amazing to me.

I have been on edge all day that something was going to go wrong with the stem cell donation by our Angel Donor. Thankfully Zachary’s doctor came to evaluate him and eased my mind when he said that we (the transplant team) had the donation in hand and it would arrive in Richmond around 9:00 this evening. A loud cheer rang out throughout the room and a large sigh of relief on my part. Zachary even raised his hands and gave an appropriate “YEAH” when we were told. We were also told that transplant will take place tomorrow at about 10:00am and will last approximately 30 minutes.

I want to offer a special thank you to all of you who have sent a gift, money, cards, quilts, provided meals, and most importantly prayers our way over the past week, and since Zachary was diagnosed. We are continually touched by all of your generosity and willingness to help in any way that is needed. We feel truly blessed to have such wonderful people in our lives.

This is just a reminder of tomorrow:
In honor of Zachary and the fight he has put forth, we would like to ask each of you to share in this day with us by placing the color purple on your person or workstation. We have chosen the color purple because it is the color for the month of March and denotes healing, power, and religion. In the Native American Culture it also represents gratitude.

Thank you gain for all the love, support and prayers you continue to send our way. Please continue to keep Zachary in your prayers tomorrow and for the upcoming weeks for we have a hard road ahead, but it is one that we are ready to travel with God in the lead.

May God continue to bless you and yours!

Monday, March 29, 2004 4:56 PM CST

Day -2

As I woke up this morning I had an overwhelming feeling of gratitude for the many things that God has touched us with thus far; children, family, good friends and most of all a guided hand by Him, for without that we would be lost, but instead we are empowered by strength and love. Thank you God for holding our hand and walking along this journey with us.

Today we will hit our first milestone on our journey. Zachary has now finished his last dose of chemotherapy (finished at 1:25pm EST). When trying to calculate the approximate amount of time that he has had chemotherapy this week it came out to around 50 hours. It seems like so much for a small little body and yet he continues to overcome all the hurdles that are placed in front of him. With this journey there are many milestones that we will come to and with each one it will bring a greater appreciation for each breath we take and each day we are given to love, hold and hug one another. Through this, Max and I have learned just how precious life is, how fortunate we are to be blessed with two happy and loving children. This journey in our life has only and will only make us stronger, more appreciative people, and for that I am thankful.

Zachary is maintaining his happy temperament for the most part. His mornings lately have been better than his afternoons. The chemotherapy, over stimulation and lack of naps in the afternoons starts to take its toll. He will have his first dose of ATG today. This medicine is used to help his body accept the transplant on Wednesday. He will have two infusions two days prior to transplant and two infusions two days after transplant. During these infusions he is monitored very closely, because he can have many different types of reactions. So far he is half way through the first infusion and is doing well. He wants to be held, nursed and consoled more, but that is fine by me. He is the best baby. His strength and happy personality makes me so proud.

Sweet, Sweet Sydney and Zachary thank you so much for touching our life in a way that we never knew existed. You both have made Mommy and Daddy better people. You are truly Gods gifts to us.

In honor of Zachary and the fight he has put forth, we would like to ask each of you to share in this day with us by placing the color purple on your person or workstation. We have chosen the color purple because it is the color for the month of March and denotes healing, power, and religion. In the Native American Culture it also represents gratitude. It also has a special meaning to me, it was my grandfather’s favorite color and I know as I sit here today he is one of our special angels who watches over us. Grandpa you are never far from my thoughts.

Thank you so much for the wonderful messages, continued support and prayers. They mean everything to us and sustain us during the difficult and challenging times.

May God continue to bless you and yours!

Sunday, March 28, 2004 7:56 PM CST

Day -3

Maybe it is time for a Father’s perspective.

On October 24, 2003, at 11:35pm EST we began a new journey: a journey that would provide a bond for our family, a direction for the foreseeable future, and a renewed realization of life and the role that God plays; especially if you open your heart to Him. That was the time that Zachary started chemotherapy to begin treating his disease. I mention this time and date because tomorrow, March 29, 2004, marks the end of that road as he will be taking his final dose of chemotherapy. (raise your glass in celebration here).

Could I have imagined he would have done as well as he has? NO. Could I have imagined Stacy nurturing him the way she has while staying above the fray of our daughter and myself? YES, but I’m sorry we had to find out. Could I have imagined the outpouring of love, concern, and generosity of family and friends, much less complete strangers? I am not surprised (and sincerely grateful) having witnessed the outpouring of support the citizens of this country (and others) have always provided during times of need; 9-11 certainly comes to mind, but there are many, many others.

Our mission was clear last October: find a donor for our son and keep him “healthy” until our Angel Donor was found. With the support of an intelligent and caring medical staff, and the willingness of one man to provide a part of himself to save Zachary, come Wednesday we will have completed this mission. We will then begin to prepare for the next mission and the many months it will take to accomplish. This is our mission and we gladly accept it.

Today was highlighted by Sydney and I going to Lewis Ginter Botanical Gardens, which is a local garden center that was hosting a Peter Rabbit Tea Party. Sydney kept asking this morning, “when are we going to MY party?” There were many activities for the children, but there were only 3 things that interested Sydney; running around outside, eating treats, and watching a puppet show (we saw the same show twice). She is becoming more and more independent and I find myself wanting her to spread her wings and not be dependent of me and Stacy. Not that she has a problem with independence, I do. But we are working on it together.

Dianne (Nana) spent the afternoon with Stacy and Zachary as I had come to the hospital during the morning. I think I got the better deal because this afternoon, while not bad considering this is his third straight day of heavy chemo, was not as good as his morning. To hear Stacy and Nana tell it, he just seemed uncomfortable. He wanted to nurse constantly, yet that provided little to no comfort. So, there were no naps to ease him. Late this afternoon the nurses gave him some benedryl, which seemed to relax him. By the time I got back to the hospital (about 6:30) he was eating and ready for bed. He’s been sleeping ever since. As Stacy and I discussed while eating our first meal together in a week, we can only take this one moment at a time: the sun has set on today, so we prepare for the night; in the morning we will prepare for the daytime. We cannot look beyond the current moment because his needs and mood can change so quickly. So, Day 0 is what we are striving toward, but we do not look beyond right now.

May God continue to bless you and yours!

Saturday, March 27, 2004 3:44 PM CST

Day -4

First of all, I want to thank my sweet husband for sneaking in his little message at the bottom of my journal last night. What a very kind and thoughtful thing to say. I believe we are very blessed to have each other.

Zachary and I had a really good night last night, he went to sleep around 8:30 and pretty much slept through the night. That includes during diaper changes and vital sign checks and everything. Bless his little heart he was so tired from yesterday afternoon and from not getting a nap. He was so sweet last night, while I was feeding him to put him down for the night, he not only wanted to nurse but he wanted to have Max right behind him so that he would be able to hold on to us both. It was as though he wanted to reassure both of us that he was feeling better and that he would be okay. This little one with his big blue eyes can just break your heart when he looks at you with the question of why in his eyes. Baby, Mommy wishes she had an answer for you.

The day has been pretty good, he tolerated the first chemo pretty well and we are about 3 hours into the second one (it is a 6 hour infusion). He has been a little fussy and wants to be held and walked with. The way I look at it, it is the least we can do considering what he has to go through. His face is getting pretty puffy from the steroids they have him on and all the fluids that are running through him. He continues to shine those beautiful blues eyes and give us that sweet smile we all know and love.

Sydney is doing better. She had a rough night Thursday night; she told Nana that she didn’t have a Mommy anymore. You can imagine how this broke my heart. After Mom talked to her and we arranged a time for her to come spend some time with me she seemed to feel better. She also wanted to know details of what was wrong with Zachary. Mom had a dream of how to discuss this with her in a way that a child would understand. Thank God for Nana because it worked and she is much more at ease about the entire situation as it relates to Zachary. I think my Mom needs to write a children’s book to help other siblings understand this. She still wants her Mommy home, but that is something we will continue to have to work through. She came to the hospital today with Max and Nana for a brief visit with Zachary. It was neat to see their eyes shine as they saw each other. I feel so blessed that my children love each other so very much. While Zachary got his Nana fix, Max and I took Sydney to have a picnic breakfast on the grounds of the Capitol building (it is within walking distance of the hospital). We had a great time having our breakfast, blowing bubbles and playing chase. It was exactly what we all needed. The best part of today was the big smile and hug I got when Sydney walked into the room and watching her run around in the grass with her beautiful curls blowing in the wind. She looked so happy, carefree and innocent. I wish I could frame that moment.

I want to express my gratitude to all the nurses for your devotion, concern and empathy of our situation yesterday. The kind words, the hugs that were given and the laughter at the end of the day were very much appreciated. Thanks for caring so much and being such genuine people. This is not an easy process, but your care and concern makes it more tolerable.

I want to continue to thank everyone for your entrys in the guestbook. When I am having a rough moment I read those for a pick me up. I know that there are many people that come by, but do not write anything because you are unsure of what to say or afraid you may say the wrong thing. A simple hello, we are thinking of you is sufficient. Trust me you will not say the wrong thing. Every word means a lot to each of us. But if you choose not to sign we understand and appreciate you keeping us in your prayers and taking time out of your busy days to check in on us. We want to thank you for your continued support and the prayers that are being sent our way.

May God continue to bless you and yours!

Friday, March 26, 2004 5:44 PM CST

Day -5

Our day started off great with big smiles, lots of laughter, and a long morning nap, unfortunately it did not continue down path. As I sit here and ponder how to describe the day and the emotions that we have dealt with my mind and heart are heavy with concern of what the days to come have in store for us.

Zachary had a rough afternoon, he had three different chemotherapies and two of them were new to him. With the chemotherapy, comes a lot of fluid to flush everything out of his system. We spent the bulk of the afternoon with both of us crying; Zachary because he was uncomfortable (nauseous and swollen) and myself because the last thing a mother and father ever want to do is see there child battle a disease like this. After they gave him lasix for the swelling and he threw up some, he seemed to feel a little better. I know this is only the beginning of what is to come. I pray that God will watch over and hold his hand in his time of discomfort. Days -5, -4, and -3 are very similar in their regiment. Obviously we look toward Day 0 (March 31), but know that the worst of his reaction will probably follow transplant.

I continue to ask myself why this is happening. I do not have an answer and may not ever find one.

We continue to find our strength through the guidance and support of our friends and family. Thank you so much for keeping us in your prayers. We ask that you continue to keep Zachary in your prayers and ask that the prayer chains flourish.

We keep our heads high for it is the only way to be.

Stacy is the ship that keeps us afloat during this time. Her focus, discipline, and unquestionable love and support for her children is a model of Motherhood. I love you, Stacy.

Scott, thank you for your friendship, encouragement, and fulfilling on-the-spot prayer requests. I have found God through you!

May God continue to bless you and yours!

Thursday, March 25, 2004 8:45 PM CST

Day -6

We experienced a beautiful warm Virginia spring day. The trees are starting to bloom and the temperature was an exquisite 72 degrees. Yeah, springtime is starting to shine through.

Today was pretty uneventful here at the hospital: a lot of medicines, chemotherapy, checking of his vital signs, and meeting more new people. Zachary’s temperament continues to amaze me with his sweet disposition considering all that he has had to go through. He smiles and allows the nurses to do what is necessary, unless of course he has been abruptly awakened. We all have our limits. Zachary tolerates the chemotherapy and the other medicines pretty well. The only thing that he is having a problem with right now is constipation and they really don’t want to give him anything for it because the chemotherapies will soon start causing him to have diarrhea. His blood counts that they did yesterday came back fine, his hemoglobin was slightly down from admission but it isn’t anything to be concerned about at this time. Zachary will start his second type of chemotherapy tomorrow. Please keep him in your thoughts and prayers that he tolerates them and is in very little discomfort.

Sydney had a great day; Max took off work to spend some time with her. They spent most of their day playing in the yard and enjoying each others company. They will have a special date together on Saturday at the botanical gardens for a children’s tea party with Peter Rabbit. I hope she has a good time and, as for Max, what a great sport he is...

Mom came down to spend the day at the hospital with Zachary and myself. Zachary was thrilled to see her, as was I. It was nice to sit and talk and have her here with us. Then Max came down this evening and Mom was home with Sydney. It was nice to see Max so relaxed after his day off with Sydney. I know it was something that they both needed, although we loved having him here with us for awhile tonight. Zachary is always thrilled to see Max walk through the door.

I am doing good. We are starting to get into our own little routine fitting in our needs (bathing, eating, sleeping, craft time, play time), with the medical needs and routines that is needed at the hospital. The one issue that seems to keep coming up that I am continuing to address is nursing Zachary through transplant. They are concerned about his intake and if he is getting what he is going to need during this time. I feel very strongly about continuing to nurse him. With that in mind, I am willing to feed him more often or discuss other options to get him what he is going to need. I just feel like it would be very cruel to take nursing away from him during such an already trying time. The last thing I want to ever do is add stress to his life. Zachary has had a nurse who has the nicest disposition, caring, sweet, and genuine personality. Pam Z., every time I see her she reminds me of you and it gives me great comfort when she is around. You are a great person and I wanted you to know that you have been in my thoughts a lot lately. All in all I feel as though our dance is coming together beautifully.

I want to continue to thank you all for keeping our precious little ones in your prayers. It means more to us than you will ever know.

May God continue to bless you and yours!

Thursday, March 25, 2004 8:45 PM CST

Wednesday, March 24, 2004 4:27 PM CST

Day -7

I want to apologize to everyone for the delay in journaling lately. I have had a few computer problems that I was trying to work through. Thanks to one of Zachary’s transplant doctors I am now up and running. He came in last night and looked everything over for me and made a few adjustments that have now made my life a little easier. Thank you so much!

Zachary is doing pretty good he is continuing to tolerate the chemotherapy, anti-nausea, anti-fungal, steroids and the many other things that he is on. He has made a lot of new friends on the floor and is continuing to love the attention. He is quite the little social butterfly. The one thing that we are still struggling with some is sleep. He isn’t going down until 10:00p.m. or later and waking up around 5:30a.m., give or take. He started taking little cat naps throughout the day yesterday and has continued that today as well. He has also started to get a little fussy, constantly wanting to be held. I can’t complain, he is so cute and cuddly. It is hard to know exactly what he is fussing about, being that he is on so many different medications, he is teething, and he is sleep deprived. They probably all work hand in hand to some degree. He has been a little pale this afternoon, so they are going to check his counts and see what his levels are. There are so many different things that factor into the equation when watching him. Thank God for brilliant doctors and their teams.

As for myself I feel I am adjusting quite well considering the situation. All the people on the transplant floor have been very welcoming and that makes it all a little easier. I am trying to get us on some kind of a schedule in order to feel somewhat normal. You know me, I am all about schedules. So far I have not shed another tear, since my outpouring of them two days ago. I just get a little watery eyed and emotional watching all the different things Zachary’s little body is having to go through and all the different things that are to come. But what gives me strength is knowing that God would not have placed this in our hands if he didn’t feel as though we could handle it. I also know this is a journey where we are not walking alone; between all the wonderful family and friends, and God lifting us up all the time.

Sydney is still keeping Nana busy. She has had a hard time adjusting to us being gone and it doesn’t help that her allergies have started to act up. The understanding and strength of a child watching their sibling sick is amazing. I was told by a friend when this all started that although Zachary will impress us and show us a great amount of strength it would be Sydney that would be our hero in all of this. I truly believe that will be the case. Thank goodness for the resilience of children, especially under these circumstances.

Mom continues to offer me support during the day when I need an outlet to talk about other things. Thanks for being there for me.

Again, thank you to everyone who so thoughtfully continues to add us to your prayers and send positive thoughts our way.

May God continue to bless you and yours!

Tuesday, March 23, 2004 7:08 PM CST

Day -9

March 22, 2004

Zachary and I are trying to adjust to our new home away from home. I believe we are both adjusting in our own way, each one of us better than the other at times.

Zachary is doing pretty well. So far he is handling all the medications really well. His temperament has been incredible considering that we are in a different environment. Personally, I think he likes all the attention from everyone. The only thing he is struggling with right now is sleep. He is having a hard time relaxing and getting back on schedule. I am in hopes that will change and he will be able to relax enough to take his regular naps and go to bed at a normal time. I am probably dreaming, but it doesn't hurt to dream.

I am working through all of my emotions in regard to everything that is happening. This is a huge adjustment for all of us to handle. There is a time where you break down and let the tears flow. I have been letting the tears flow for the past two days now. As everyone has experienced at one time or another in their life, individuals all do things differently and in this setting it is necessary to adjust to that as best you can. The best way for me to describe it is to say we learning a dance, Zachary, myself and the transplant team. As our goal is all the same, we must all find the steps to allow our dance to flow together. With this in mind it will take a little time to flow as one. Each moment is getting better as we all become more comfortable with each other.

Max, I want to thank you for being always by my side. I could not do this without you. You offer me more strength than you will ever know. I love you, sweetheart.

Sydney is doing okay. She is a little sad, but Mom says she is being a little angel. She is so sweet, when we left the hospital to take her out to eat; she was worried about leaving Nana and Zachary at the hospital. She was concerned that they would be scared without her. She is so thoughtful of others. When she was in the hospital room yesterday she placed stars on the ceiling. We also did this in her room at home. This way when we lay down for bed at night, we can each know we are looking at the stars. My sweet, sweet girl, I love you very much.

Mom, thanks for taking such good care of our sweetness and being there to support us. I am so thankful you are always in my corner.

We are very thankful for all the messages on the guestbook. They are a great comfort to me and the rest of the family more now than ever. Please continue sending all the wonderful prayers and positive thoughts our way.

May God continue to bless you and yours.

Tuesday, March 23, 2004 7:08 PM CST

Saturday, March 20, 2004 10:28 PM CST

Today has been a day of getting organized , enjoying the kids, and trying to prepare mentally for what is to come.

I said I would not journal again until we were at the hospital unless something happened. Well here I sit, writing to let everyone know that we received a call later this afternoon from Zachary's transplant doctor letting us know that they wanted to admit him tomorrow. As I heard this news I felt my heart sink. I thought I would have another day to prepare, relax and spend some time with Sydney. But it is in Zachary's best interest and that is what this is all about. We were informed that in the middle of his chemotherapy days, there is a day where he is to receive a high volume of chemotherapy. So, in combination with his normal liquid intake they were concerned about his bodies ability to absorb so much so soon. Therefore, we are going to be adding a day in order to spread it out a little and give him all the chemotherapy that he will need. This will postpone his transplant date, also called "Day O", to March 31.

As I watched him sleep so innocently tonight, it was reassuring to know that he has know idea what is coming and that he could be so relaxed. Max, myself, and Nana on the other hand are not quite as relaxed. We are all nervous. I find myself praying constantly that everything will go well, that Zachary's discomfort will be minimal, and that he will guide the doctors and nurses to help us battle this nasty disease and win. What I would't do to step into his little body and take this on for him. But I guess it is meant for me to be by his side and protect him, love him, and care for him the only way I know how, with everything that I am.

Zachary will be admitted tomorrow at noon and Sydney and Nana will come with us so Sydney can help prepare his room. Then Max and I will try to take Sydney for a little while to spend some time with her and explain what is happening. We have purchased her a little Musical globe that we will give her tomorrow to watch and listen to when she misses Zachary and myself. We will let her know that it is to remind her of how very much we love her. Oh, My precious, precious girl it deeply saddens me that this is all happening and you are having to try to understand things like this at such a young age. You are Mommy's sweet girl and I love you and will miss you so very much.

Please continue to keep us in your prayers as we are admitted tomorrow and we start the transplant process. We continue to draw our strength from the power of your prayers and the knowledge that God is always walking with us.

May God continue to bless you and yours.

Thursday, March 18, 2004 6:42 PM CST

It has been a nice calm day or at least as calm as a day at the German house can be. Zachary and I went to clinic first thing this morning to ensure that his hickman line was not infected and was doing okay. After his nurse and the doctor looked at it, they felt as though everything was fine. We will take a few extra precautions to make sure the sight stays healthy. But as far as I can tell we are good to go for Monday.

Zachary had his last day of steroids for awhile. HOORAY!
He has done pretty good with them, or maybe we are just getting used to them. Either way we are on to bigger things. He started eating cheerios today and loved everyone of them. It was the sweetest thing to watch his eyes shine with delight as he got to try something new.

Sydney is doing great, her social skills continue to amaze me. We were at a store today where there was another little girl her age. As I looked for what I went in there for I listened to her explain to another little girl that she had a little brother named Zachary. She stated "he is my baby and he is very sick you know, he has boo boo's on his tummy and has to go the doctor a lot." She then followed up with telling the little girl how much she loved her baby. I am so proud of her and yet it broke my heart to hear her talking to a three year old about such an adult topic. She has had to grow up and handle hard things at such a young age. I can only think this will make her an even more compassionate human being. It is going to be hard to be away from her so much when Zachary is in transplant. But I know she is in the best of hands. Thank you Mom!

The adults in the house are continually trying to keep our emotions in check. As well as getting everything in order before admission to the hospital on Monday. Anyone who knows me knows I like to have all my i's dotted and my t's crossed. We will see if I succeed.

As we are approaching transplant day, Max's sister is in New Mexico preparing for a life change as well, marriage to the one she loves. We are so sorry we will miss this wonderful day. Jeanne, I pray that your life with Chris brings you everything that you deserve and happiness together forever. I hope that the two of you find a Love that will endure all of life's goods and bads. We will miss being there for you and being part of your special day. Always know you will be in our thoughts. We love you!

A huge thank you to everyone who so faithfully checks in on us and continues to keep us in your prayers. We are inspired by your many blessings and all the support that everyone continues to offer.

As we approach admission day on Monday we have a lot to get done, therefore, I will not be journaling again until Monday unless something happens between now and then.

We have added some new pictures. I hope you all enjoy them.

May God continue to bless you and yours.

Wednesday, March 17, 2004 8:10 PM CST

First of all let me wish you all a very Happy St. Patrick's Day. I hope everyone was able to get out and enjoy themselves.

Zachary had a pretty good day considering it is his second day on steroids. He had an excellent nap this morning and a pretty good nap this afternoon. He is happiest on steroid days when he is able to eat or he is being walked. When changing his dressing for his hickman line today, I noticed there was a little bit of drainage as well as reddening around the site and sutured areas. I placed a call in to the clinic and we will be going in tomorrow for them to look at it and make sure that everything is okay. I am sure it is probably fine, but I would hate to be admitted on Monday and find out at that time there is a concern. We are at a point where you watch every little sneeze, cough, reddened area on the skin in hopes that it isn't anything and we will make it to transplant healthy. This is a very uneasy way to feel and yet it is our life.

Max and I met with the transplant doctor and his team to get answers to any questions that we had and to sign all the final paperwork. We are very appreciative for all the time that was spent with answering our questions. It gave us a perspective on what we can possibly expect on the good side of treatment and the rough side of treatment. As I sit here writing this I feel numb and somewhat in shock that our precious little one that is fast asleep in his bed is having a battle inside his little body. It is so hard to believe that we are at a point that we will be moving to the next level of treatment with him and although we are ready, we are scared of putting him through all of this. But the outcome of not doing tranplant gives us very little chance at long term survival. So ahead we move with a positive feeling that we are in the right place, with the right people to take care of our little one and with God's arms and strength to carry us through.

We are so very thankful to all of you for all you do and all the many prayers, scripture, and love that you provide to our family. Please pray for all the little ones and their families going through similar situations in their life.

May God bless you and yours always.

Tuesday, March 16, 2004 6:44 PM CST

It is official, we have been given a date for transplant. We will be admitted into the hospital on Monday, March 22nd and after a week of high doses of chemotherapy to wipe out Zachary's immune system (his bone marrow), he will have his stem cell transplant on March 30th. This will be a week that will forever be engraved in our hearts and memories. March 30th will then be a day to start fresh, to give our little guy what he needs to beat this horrific disease. May God bless our donor and watch over him and protect him always. What a genuine blessing this man is to our family. Thank you, wherever you are.

We had blood drawn this morning for counts, which, by the way, came back very good. We then went to the 7th floor for physical therapy. Therapy went well although he was tired and a little weak. With two doses of chemotherapy last week and a sore back from the spinal tap and marrow draw, it is to be expected. We started steroids today, they seem to be taking effect faster. While I was getting Zachary ready for bed tonight, I couldn't help but wonder if the cries/moans from the irritability is God's way of getting us ready for the crying during transplant from the discomfort. I continue to pray for God's strength and his loving arms to carry us through this trying time in our lives.

Sydney is doing wonderful. Everything is still thumbs up in her little world. She has fully entered the "pretend" stage of childhood. It is a joy to watch her develop and grow.

As for the adults in the house, we are filled with more emotions than we know what to do with. Thankfully we are all together to handle them.

I want to thank everyone in clinic for your genuine care of our precious little guy. Your patience and dedication on his behalf is, and will always be, very much appreciated. Kathy, always know Zachary will hold a special place in his heart for you. Your care and dedication has helped bring him to this point. Thank you!

We also want to continue to thank everyone for checking in on us and keeping us in your thoughts and prayers. We will take all the prayers that you have to offer.

May God continue to bless you and yours.

Monday, March 15, 2004 8:49 PM CST

I want to apologize to everyone who so faithfully checked in on us the past few days and didn't see a journal update. To be honest with you I truly needed a break. You see, when I journal, I also check in on all the other children with whom are going through really rough times; as well as those who are post transplant and doing great. I spend a lot of time comparing, analyzing, and preparing myself for what our story may one day be. I simply needed to focus on our own situation and distance myself for a short time from everything as best you can under the circumstances.

Let me start by saying, Max and I had a great evening on Thursday night. We enjoyed a nice dinner and talking about many different topics. It was extremely relaxing and exactly what we needed after a long day. I love this man with all my heart, his love and dedication to all of us is just remarkable.

Zachary is doing great! He had a wonderful weekend full of smiles, cuddles, and baby talk. Thankfully, his back didn't seem to affect him much at all from the spinal tap and marrow test. He is such a resiliant little guy, I continue to be amazed by his strength and determination to do things and to overcome all the obstacles that are placed in his way. We will be in clinic tomorrow for blood counts and physical therapy. Hopefully we will also get some of the results back from the tests that were ran on Thursday. We will also start steroids tomorrow for three days. YUK!

Sydney is a little doll. Her knew thing this week is to give everyone a thumbs up to let you know that things are good. She learned this from my dad while he was here. She continues to brighten our day with her singing, dancing and motherly instincts. The love and protection that she shows her Zachary is just so incredible. She makes us so very proud .

Mom and I spent the weekend running all over town trying to get everything that we will need when we go to transplant. Everytime I would get one list complete I felt like another one would start. I think we are as ready as we are going to be. Like I told Mom, I am someone who likes to be prepared for everything and I don't think I can ever do anything to completely prepare myself or my family for what we are about to do. In this case, we just have to do the best that we can and let God direct us.

To all of our family and friends who continue to keep us in your thoughts and prayers, we are forever grateful. We also want to thank you for signing the guestbook, it is something very special to us and something that we keep always for Zachary to one day read.

May God bless you and yours.

Thursday, March 11, 2004 5:21 PM CST

I am not quite sure how to express my emotions about the day we all had. I found myself at times wishing that someone would pinch me to wake me up and tell me my nightmare was over. But that didn't ever happen, so here I sit to give you the details of our day in clinic.

Zachary and I were up at 5:00 this morning so that I could feed him his solids and then he nursed at 7:00. Daddy and I headed to clinic at 9:00 for Zachary's spinal tap. When we got there they drew blood for counts and informed us that they were not only doing a spinal tap, but they were pulling bone marrow and injecting methotrexate (which is a chemotherapy that is injected directly into the spinal fluid). As you can imagine it was somewhat of a shock and yet it was what needed to be done for pretransplant. As we waited, Max showed up to join us at 11:30. We got the blood results back and were informed that his hemoglobin levels were down so he was also going to need a transfusion today. You can imagine our disappointment since he has not needed a transfusion since October. We were going along so well, then we were admitted with fever last week and now a blood transfusion. We are now concerned what may come back on the spinal tap and marrow aspirations. It is always going to be a worry we have, but it is so very important that we go to transplant with him in the best of health. Needless to say we expected to spend half our day in clinic and then Max was going to take the afternoon off so we could have a calm relaxing afternoon together. See what happens when you make plans for something, you jinx yourself. With this in mind, we continue to be thakful for all the care the doctors and nurses give to our wonderful, loving little guy. He came through all the procedures with a few band aids and a sore back. Nothing a little TLC can't take care of.

Max and I are headed out for a nice dinner together and a little peace and quiet after a crazy day. Many thanks to Mom and Dad for caring for and loving our children as we do.

We thank you all for keeping us in your thoughts and prayers. We continue to be lifted up in prayer by all of you.

May God bless you and yours.

Wednesday, March 10, 2004 7:32 PM CST

Today was a cold, wet, and dreary day outside. It made you want to crawl up on the sofa with a comfy blanket and read a good book. Unfortunately, this did not happen for any of us.

Zachary started off his day being pretty fussy. He is teething and he seemed to have a stomach ache. This led to a short nap and a long morning. This afternoon he had another short nap, but was in a better mood. He played and watched Sydney dance and sing. The numerous diapers have calmed down and his bottom is starting to look better. We will go in tomorrow for his spinal tap. It will be a rough morning because he won't be able to eat after 7:00am. Although he is small, this little guy does not miss a meal.

We received good news from the insurance company this afternoon that Zachary has been approved for transplant. There are so many things that need to be in order and go according to schedule. It can sometimes be overwhelming all the different things that need to fall into place. The donor, Zachary's health, our health, all the insurance authorizations, and all the other things to get ready. This was just one more thing that brings us closer to transplant.

To all our family and friends, we are so very blessed to have you in our lives. It is times like these when it makes you aware of who will always be there for you. We continue to feel your positive thoughts and your loving arms surrounding us. Thanks for being in our corner and continuing to cheer us on.

May God bless you and yours always.

Tuesday, March 9, 2004 8:25 PM CST

We are thankful again for a healthy day. Each day without fevers brings that much closer to transplant and what we are trying to achieve.

Zachary had an excellent day at physical and occupational therapy. He continues to improve and gain more strength in all areas. We also did chemotherapy, he spent that couple of hours playing and sleeping. I find so much joy in my day watching the amazement in his eyes and the smile on his face when he is doing something new. So far, all the labs continue to come back negative. We are still thinking that the numerous loose stools is from all the antibiotics. Meanwhile, we are now dealing with a rash on his bottom that looks and is extremely uncomfortable. He spent the afternoon without a diaper, which he thought was just great.
Hopefully, it will all clear up soon.

Sydney spent her day with her Nana and Papa. When we asked her this morning if she was happy she said, "I am now". She enjoys knowing where everyone is and that they are all with her. That seems to ease her mind. Not to mention it gives her more people to entertain. She is becoming quite the little drama queen. Her personality is just expanding in all directions.

Max and I continue to be thankful to you all for your kind words, thoughtful gestures, and prayers.

May God bless you and yours.

Monday, March 8, 2004 3:01 PM CST

I hope everyone is having a wonderful day. We have had an interesting day and I am ready for a little bit of quiet time. I'm not sure as a Mom that is even allowed anymore. But it sure does sound good. I keep hoping someone will put me in time-out for a short time, wishful thinking.

We headed to clinic this morning to have blood drawn to get counts. Everything went well, until we started being questioned about how he was doing. He has had quite a few loose stools that I had been told in the hospital were because of all the antibiotics and it would calm down. Well I was told to watch him carefully. By the time we had got home and he had his nap, he had a total of 6 diapers that were not the usual. So we got a sample and headed back to the hospital. Sydney thought it was pretty funny that Daddy was going to carry Zachary's poo poo (as she calls it) into the hospital. We should have something back on that tomorrow as to what is going on. I would rather be safe than sorry. I am sure that was more information than you wanted or needed for that matter. After all that we got a call this afternoon that his counts look good and we will be able to do chemotherapy tomorrow. Amen! He continues to charm us with those big beautiful sky blue eyes and loving smile. I continued to be amazed at how fortunate we are to have him and Sydney in our lives.

Max and I were pretty tired this morning, Zachary has a little toy in his bed that he can kick and turn the music on. Which he has just recently learned to do. Well it went off quite a few times last night, at times Max and I thought it was the alarm going off. Zachary seemed to snooze through it all. I am sure one of us will make sure it is turned off tonight. It didn't seem to bother Sydney either, she said she didn't sleep well because she had bad dreams that her kiska has ran away. Poor thing, she has so many things on her little mind.

We continue to be thankful for all your positive thoughts and prayers. Your guestbook entries, emails and your touching phone calls are an inspiration to us all.

May God bless you and watch over you as he continues to bless us.

Sunday, March 7, 2004 6:25 PM CST

It has been a great weekend. My Dad arrived safely on Saturday night, we were all so happy to see his warm smiling face. He is a pilar of strength for us all.

Zachary is doing great. He has spent his weekend making up for the loss of sleep from his hospital stay. As well as smiling and enjoying watching Sydney entertain us. His sweet, calm nature continues to amaze me considering all that he has to endure. He loves hugs and kisses (especially in the sweet creases of his neck). His sweet little laugh and huge smile is the best way to start the day. We have a clinic visit tomorrow to check his blood counts, and if everything is good we will have chemotherapy on Tuesday. He will also have physical and occupational therapy on Tuesday. Please keep us in your prayers that the counts come back good.

Mom and Dad headed to Williamsburg, Virginia for a couple of days to spend some relaxing time together and
we spent the day getting some things that we are going to need for our hospital stay when we go to transplant. The more organized I can get the room the more comfortable we will be. I will be working on some informational signs for the room and some of the decorations this week.

The little ones have settled in for the evening and Max and I are looking forward to a couple of hours of peace and quiet, and quality time together before bed.

Thank you so much for your continued positive thoughts and prayers. They are a daily inspiration to us all.

May God bless you all.

Friday, March 5, 2004 7:23 PM CST

I am happy to report that Zachary and I are home. This was a trip to the hospital that was not at all expected but definately gave us a dry run for what is to come. It also gave me an idea of things that I need to do to get better prepared for transplant.

First of all, I want to thank Max for stepping in at the last minute to journal and keep everyone informed for me. I will actually be journaling from the hospital when we are in transplant. This will allow everyone to know what is going on, as well as give me an avenue to keep in touch with everyone.

Zachary is doing great. He has not had a fever since Wednesday night and has not ever shown any signs of anything else. The cultures that they are running are still coming back negative, so with this in mind they felt comfortable sending us home. The positive to the stay in the hospital was that it expedited getting the sinus Ct scan, which was done yesterday, and the appointment with the ENT doctor, which we had today. The ENT doctor looked at the Ct scan and Zachary and stated that everything looked perfectly fine. He didn't feel that there was anything to be concerned about. Then just when I thought we had cleared all the hurdles, I was told that Zachary will need another spinal tap sometime next week before transplant. Hopefully after the spinal tap he will be ready and he will be admitted sometime the following week. This is the rumor on the floor at the hospital, we do not have anything set in stone.

I have a great appreciation for life and everything that we all must face. But I seem to find a new appreciation for it on a daily basis. While we were in the hospital I had a deep conversation with one of Zachary's doctors regarding the options that some have for treatment, while others would give anything for just one treatment option. There are so many ailments that people are faced with and I believe we are all chosen for one reason or another to handle what we are dealt. I feel blessed that we are given each day to be together and that we have the option of transplant as a cure for Zachary's disease. There were other little ones in the hospital that do not have an option for a cure, as we do. My heart goes out to their parents and families as I am sure they are trying to handle their situation as best they can. We should all be thankful for each moment and remember how precious life is.

A little story about Sydney. As we were leaving for the hospital I was explaining to her that I needed to take Zachary to clinic because he was a little warm and they needed to look at him. She proceeded to tell me that she would see us later because we were not going to be back at home that night. Well, she was right. Then yesterday when I spoke to her on the phone she asked about Zachary and told me it would be okay because Zachary was going to be all better, she promised. I believe she is so right and God speaks to us in many different ways, I believe this time it has been through her. Thank you!

When we arrived at home tonight the delight in Zachary and Sydney's eyes were priceless. He was so happy to be home and could't wait to get his hands in Sydney's curls and she just wanted to give all the love she could as quickly as she could. This was a moment that I will cherish always.

Last but not least I want to thank Max for the love and support that he always has for us all. I also want to thank Mom for all the help she continues to provide with the kids: meals and keeping up the house as well as always being there for Max and myself. All of this makes it so much easier to be at the hospital concentrating on what Zachary needs, knowing that everything at home is fine. Many thank you's!

My Dad is arriving tomorrow for a week long visit. We are looking forward to seeing him and having him around. Fly safe Daddy!

I want to thank everyone for your continued support, positive thoughts and prayers. We will take them all and cherish each one.

Until I journal again, may God bless you and yours.

Thursday, March 4, 2004 9:00 PM CST

Don't count your eggs before they hatch, but we are ending this evening with some positive feelings.

Zachary's temperature has not gone above 99 since last night, which his doctor does not classify as a fever. If he can maintain these results then he could be coming home on Saturday. :):):) Also, we were able to get his CT Scan done today. The results came back positive, meaning his sinusitus is gone. Our appointment with the ENT doctor is set for tomorrow at 2pm. So, all in all we ended the day feeling great. Finally, the blood cultures that were taken yesterday have thus far come back as negative, which we take as positive news.

Stacy has not left Zachary's side since his admittance. I envy her devotion and commitment to everything she cherishes. I thank God for placing her in my life. I love her deeply.

Thank you all for helping to carry us through. We depend upon your prayers and support.

May God bless you and yours.

Wednesday, March 3, 2004 8:46 PM CST

The last time Zachary was discharged from the hospital it was October 31; one week after being diagnosed with HLH. We were told at that time that we would have repeat visits to the hospital leading up to transplant, usually spurred on by a fever. Our streak of no repeat visits came to an end today.

Zachary was a little warm last night, even leaving a puddle of sweat beneath his head where he slept, but seemed to cool relatively quickly, so we were not overly alarmed. Late this morning he again felt warmer than normal, so Stacy took his temperature. It was in the low 100's, so a call to the Clinic was quickly made, which lead to a visit. His temperature remained between 101 and 102 and his blood pressure was lower than what the doctor's liked. He was admitted this afternoon for at least 3 days of antibiotics and monitoring. Stacy is at the hospital with him now.

Speculation includes viral infection, which is what the doctors are treating. The fever has responded positively thus far to Tylenol and his mood continues to provide smiles and even outward laughter. The silver lining to his admittance is preferential treatment as it relates to completing his work-ups for transplant. He was scheduled for March 12th for his final CT Scan and a visit to the Ear, Nose, and Throat doctor. The CT is now scheduled for tomorrow and Zachary's doctors are working to get a sooner visit to the ENT doctor.

While we are obviously disappointed that he was admitted, we know that he is in the right place getting great care. Plus, this evening Sydney promised us that Zachary would be coming home soon, which lifted our spirits. God communicates in many ways....Sydney is just one of them.

May God bless you and yours!

Tuesday, March 2, 2004 7:58 PM CST

Good evening to everyone. This will be a brief journal entry, it has been a long day and I am looking forward to going to bed early.

Zachary had his Physical and Occupational Therapy appointment today. After spending 50 minutes in the parking garage and making my way onto the only elevator that was working, we made it 30 minutes late. I was stressed and not in the best of moods when I made it to the 7th floor of the hospital. I hate being late to appointments. Thankfully his therapists are wonderful and very understanding. While I sat in the corner and tried to gather myself Zachary welcomed everything with a big smile and cheer. Therapy went great. He is showing a lot of improvement and strength, which we are all pleased with. By the time we were done, he was fussy, tired, and ready to eat.

We will have a break tomorrow from the hospital and clinic. I look forward to staying home and relaxing a little.

We are continually thankful for all the prayers and positive thoughts that are sent our way.

May God bless you always!

Monday, March 1, 2004 7:40 PM CST

Well it is that time of night again, when I journal and expose myself from the depths of my feelings. I have so many feelings running through me about so many issues that I'm not sure where to start.

Let's begin with the weekend. It was a beautiful weekend. We were actually able to drive around with the windows down(Zachary was not in the car, of course). It was nice to feel the wind in your hair. Mom and I went to see the movie "The Passion of the Christ". This movie is a very touching movie that makes you think. It did not change my belief as I am a strong believer already. It did however give me a greater appreciation for Mary and what she went through as a Mother to see her son as she did. I was moved with an overwhelming amount of feelings. There is so much more that I could say, but I don't want to expose too much for the ones who are still waiting to see it.

Zachary is becoming quite a Mommy's boy. He follows me and watches every move I make. He has been in a wonderful mood the past few days, despite the fact that he is teething and will gnaw on anything that comes near him. We were in clinic this morning to have blood drawn. I also had them look at his ears again, because he has been tugging on his right ear. I was told that it was slightly red but there isn't anything that would be done different right now since he is still on antibiotics for the sinusitis. I pray it is not something that ends up needing to be treated 2 weeks from now. Every little thing is a delay and it always adds more risks and concern on our part. His counts had dropped slightly. We were suppose to go in for chemotherapy tomorrow, but will have to wait until the end of the week. We will go back in for blood counts on Thursday and if they are higher we will do Chemotherapy on Friday. They have scheduled the follow up CT scan on his sinusis for Friday, February 12. This will mean we will need to change his appointment with the Ear, Nose, and Threat Doctor. I am hoping and praying that they will be able to get us in soon. The waiting is what starts to wear on you.

Sydney is a little sweetheart. I often wonder some days who is running the show. She is definately a leader not a follower. Her strong will and determination will be a great strength for her one day. She has found her comical side as well, which keeps us smiling and on our toes.

We continue to believe from the bottom of our hearts that together with God in our corner and the knowledge of the Doctors we will overcome this nasty disease. We pray that our loved ones and friends abound us with only positive thoughts and beliefs from this point foreword. Your prayers, love, and concern continue to inspire us on a daily basis. Thanks so much for taking the time to sign the guestbook, it lets us know that you are visiting us and that means more that you will ever know.

God bless you all!

Saturday, February 28, 2004 8:45 PM CST

Today has been a wonderful day. It was beautiful outside. We are ready for the pretty weather so we can enjoy some outdoor activities with Sydney.

Sydney started her gymboree class back up today. She was thrilled to be back and enjoy all the children. I am afraid of all the germs that she will come in contact with, but she is at an age where she needs the interaction with other childern her age. Her temperment was a true testament of that today. She was on top of the world. That is exactly what we want for her. We just make sure that as soon as she comes in from playing she gets a good bath and changes her clothes before anything else is done in the house. This probably sounds extreme, but this is the life that we live and we are trying to do the best for both children.

Zachary was in the best spirits today. He took two long naps and the rest of his time was spent playing, and eating. That little laugh, huge smile, and gentle touch warms my heart and brings us all so much joy.

Max went to see "The Passion of the Christ" today. Mom and I will be going and seeing it tomorrow. We keep trying to get a little information out of him about it, but he is keeping his opinions to himself until we see it. Then we will all be able to discuss our thoughts and how it affected us.

I will not be journaling tomorrow, Zachary will be in clinic on Monday so I will journal again at that time.

I hope you all enjoy the rest of your weekend.

May God continue to bless you.

Thursday, February 26, 2004 7:31 PM CST

We received the phone call this afternoon that we have been awaiting. The donor has been medically cleared and has signed the papers agreeing to donate his bone marrow for Zachary. God bless this wonderful man for giving of himself so unselfishly. My emotions are unexplainable; I am grateful, blessed, overwhelmed, anxious, and yet these do not even begin to touch the depths of my constant thoughts. My heart will be forever touched by the action of a stranger "OUR ANGEL DONOR." Now we are waiting for Zachary to be cleared. He needs to complete the course of antibiotics for the sinusitis, have a follow-up CT-scan, and an appointment with a Pediatric ear, nose, and throat doctor, to rule out any other possible concerns.
Keep your positive thoughts coming, we need all good things to lift us up the next couple of weeks while we are waiting for the admission date.

Zachary had a clinic visit to receive his I.V. IG today as well as get blood counts again. We were all there, Sydney came, and Nana joined us to help me with keeping everyone happy and content. Max showed up around lunch time to have a surprise lunch date with Sydney. It didn't happen quite like we had hoped, there wasn't enough seating in the food area so they had to bring lunch back to clinic. Zachary did well with the I.V. IG, it causes him to be slightly fussy because it can cause body aches. He is also dealing with the steroids. Poor little one. There is so much for his body to take in and handle. I am so proud of his strength. By the way, his blood counts were up slightly.

We are thankful to you all for your continued good wishes, kind words, and supportive prayers.

May God bless you and yours as he continues to bless us.

Wednesday, February 25, 2004 8:22 PM CST

I have found so much appreciation for life and the turns and roads that it takes us down. Although Zachary's condition makes you view things, appreciate things, and love every moment with every breath you take I am so very thankful for every day we are given with each other and I say this primarily because I was very touched by a little elderly lady who I met briefly yesterday by witnessing a head on collision that she was part of. It was an accident between a large dump truck and a small Chevy malibu car. The lady touched my heart and remains on my mind often. She was so lucky to walk away from the accident, unfortunately the friend she had with her was going to need to be transported to the hospital. Life for all us can change in such moment, I realize this more and more on a daily basis. I pray that the two ladies in the accident are okay. Their gentle faces are etched in my mind.

Therapy went very well on Tuesday, he was in a great mood and was showing a lot of improvement. We came home with homework, but every small improvement is a wonderful one in my eyes. Zachary is on his second day of steroids and is having a rough time. I am so thankful that Mom has been here to help. The steroids make Zachary want to eat more and, therefore, since I am nursing it is not much of a comfort for me to hold him if it is not time to eat. He finds great comfort being cuddled by his Nana and I feel better knowing that he is comfortable. He has also been extremely pale today, thankfully we are going to be in clinic tomorrow so I can have them look at him and make sure there isn't anything else going on. We will be in clinic tomorrow for his I.V. IG. This is done once a month and it helps strengthen his immune system. It also makes him feel weak and slightly achy. We are looking forward to the weekend when he has these things behind him.

Sydney continues to challenge us and determine where she fits into all of this. She is such a shining star, and yet we are continually concerned at the outcome this will have on her. She did not go to dance class on Tuesday, she says "I am too scared to go." We will probably pull her from the class and try again in the summer time. She was so much fun tonight as she helped me get dinner ready. The more she is able to help the better she seems to feel. My precious girl we love you so much and only want to do right by you.

Max and I continue to draw strength from each other. I can't imagine facing lifes challenges with anyone else by my side. I feel like a very lucky wife and mommy. Thank you God for blessing my life in such an undescribeable way.

Thank you all so much for your positive thoughts and wonderful prayers. They continue to inspire us.

God bless you all!

Monday, February 23, 2004 7:11 PM CST

We spent part of the morning in clinic getting blood drawn. Max and Sydney came with us. It gave Sydney the opportunity to see that we are doing all the same things as before when she was coming, as well as the chance to play with another precious little girl that was there for treatment. Sydney seemed to enjoy coming with us and seeing all the familiar faces.

Zachary continues to keep his spirits high and continues to bless us all with his charm and sweet smiles. He was extremely vocal today, if I didn't know better I would think he was trying to compete with Sydney. His nurse called this afternoon to let us know that his counts were down slightly, but it is not anything to be concerned about considering that they always seem to dip slightly the week after chemotherapy. We have steroids this week and we will start those tomorrow and continue for three days. Yuk! Zachary has physical and occupational therapy tomorrow. I am looking forward to this appointment because he has had such a spurt of energy and strength lately.

We are hoping that we will hear something in regards to the results of the donors exam and the negotiated date for transplant this week. Going into something like this is like preparing for the biggest battle of your life. While the doctors prepare the ammunition and the soldiers (the bone marrow transplant team and Zachary), we prepare our bodies, our minds, and our souls for what is to come. This is a battle we are prepared for; we have the best soldiers, our spirit is high with God in our corner, and the multitude of family and friends new and old supporting us all the way. Zachary's health is staying strong and his determination is equally as impressive. We say bring it on, we are ready to wage war, and win this battle. This is the best way for me to describe our determination and some feelings regarding what we are faced with.

We continue to be lifted up by the many prayers and continual love and support from all of you. Thank you!

May God be with you and yours.

Saturday, February 21, 2004 6:22 PM CST

Zachary is seven months old today and has brought more love and joy to our family than we ever thought possible. He has big blue beautiful eyes, and a glowing smile. He woke up this morning with more strength and determination than ever. He is sitting more independantly and putting more weight on his legs. He is an extremely social child and takes in every compliment he is given with a big smile.

Max and I met with the Bone Marrow Transplant team on Friday. We have great confidence in the doctor and the team that works under him. He is a very smart, warm, understanding, and patient man. We know that we are going to be in the right place for this journey of our life. The meeting was one of questions and answers on our part to help prepare us for what is to come. We still do not have an exact date for transplant, we will need clearance that everything is okay with the sinus CT Scan before we can move forward.

We are still very concerned with Sydney's well-being and how she is going to handle Zachary being gone. She will be very loved and taken care of by her Nana and yet nothing replaces the love that her and Zachary share. This is by far the hardest thing to explain to her and not overload her with too much information. The transplant doctor recommended that we bring Sydney down to the hospital the night before Zachary is admitted to let her decorate/prepare his room for him. So we will start brainstorming on some ideas of what we can do on the walls. The brighter, more positive, more creative the better. It will be our home away from home for awhile.

As for all the adults in the house we are hanging in there. Trying to get things accomplished while still having time to ourselves (which doesn't happen often), and keep the little ones happy.

A huge thank you from the bottom of our hearts for the hard work my Dad has done in the donation efforts toward the drawing of the Arctic 4x4. To all the individuals who have helped with this effort and who have given donations toward the purchase of tickets, we are extremely grateful. Good luck to those who have tickets.

Many thank yous to all that continue to check in with us, we greatly appreciate all your inspirational words and prayers.

Until I journal again, May God bless you and yours.

Wednesday, February 18, 2004 9:14 PM CST

This day has brought many different emotions for all of us. We started out our day in the clinic to have chemotherapy done. We were pleased to have Zachary's primary nurse back in clinic today. It makes such a huge difference to have someone that cares and is concerned about all of our well being as she does. We were also scheduled for a doctors visit to evaluate Zachary's progress thus far.

We were given good news and bad news today. The good news is that they were very happy with the results of Zachary's blood counts. The bad news was that there were some areas of concern that were detected on the sinus and chest CT-scans that were done yesterday. The sinus CT showed that there was a build up of fluid in his sinus cavity. They labeled it as being Acute Sinusitis. They decided to place him on antibiotics for the next 15 days, then repeat the sinus CT. With all this in mind it will delay when we go to transplant. This was news that we were not expecting or wanting to hear today. We had prepared ourselves that we may start transplnat sometime next week and now we are back in the waiting mode. I can't fault any of this. In my mind I believe things happen for a reason. God has a plan, and that plan may be delaying transplant for one reason or another. This is something that we will never know or even understand. But I know that He walks with us along this journey in our life. There were also a couple of areas noted on his spleen in the CT-scan. We were able to have an ultrasound done after chemotherapy today to get a different look at the area as well as compare it to an ultrasound that was last October. The Radiologist informed me that he did not see anything to concern myself with at this time, but they will continue to watch the area. This relieved my mind some and yet there is always that concern in the bottom of your gut saying, but what if?? I just want him to be safe & I want to be able to make this all better for him.

Meanwhile, through all the stress that Max and I felt through all the different news of the day you could always look over at Zachary and see his big blue eyes and a smile that just melts your heart. Our sweet loving little boy, you touch so many hearts.

We look forward to a nice quiet day at home tomorrow.

Have a great day and may God bless you and yours.

Tuesday, February 17, 2004 7:09 PM CST

Today went extremely well. Zachary had blood drawn to check his counts before chemotherapy tomorrow. Then we all headed upstairs to prepare for the chest and sinus ct-scans to be done. Max was able to be there with us which I am always thankful for. The entire procedure, sedation and ct's, took approximately 15 minutes and we were on our way home. Thankfully this was our last procedure for Zachary's pretransplant work-up. It felt nice to walk out of the hospital today and know that it was all done for right now. He has had a very busy week for such a little guy.

Sydney is doing pretty good. She struggled a little bit at dance class today. She wasn't interested in dancing, she just wanted to be at home. I think she is having a hard time with Zachary being gone so much this week. She is very protective over her little brother. I pray we will prepare her the best we can for our time away during transplant.

Many thank you's for all your kind words, thoughts and prayers. They are all very much appreciated.

May God bless you and yours.

Monday, February 16, 2004 7:04 PM CST

We have a little hero on our hands. He endures and overcomes many things that are brought his way with such a presence of calmness and patience while constantly observing everything that is in his sight. To look at the world through his eyes I see a future of happiness, strength, determination, and love that is never ending.

Our prayers were answered when the doctor walked out to let us know that Zachary did wonderfully. The surgery went according to plan and they were able to add the Port-A-Cath (a semi-permanent implantable access system that allows the transplant doctors additional options for providing medicines) on the right side of his chest and leave the Hickman in the left side. He was in recovery for about an hour and a half. He had a hard time waking up, but I am not sure if it was from the medicine given to put him under or if it was from the fact that he had been up since 2:00 this morning wanting to play. I really wanted the sleep, but I couldn't resist staying up and enjoying every smile, coo, and laugh that I was given. I love this little guy with all that I am. He has taught us many things about ourselves, as well as life in his 6 1/2 months with us.

Sydney spent her day entertaining Nana with her singing, dancing, playing dress-up, and exercising. She has such a nurturing spirit about her that makes me so proud. When we came home from the hospital she smothered Zachary with hugs and kisses while continually saying "Oh, poor baby". She also told him that it was okay, he's going to be all better. She's our precious little girl.

Thanks again to all that sign the guest book. Keep the positive, inspirational prayers coming. We are so very thankful to all of you.

Until we meet again, may God bless you and yours.

Sunday, February 15, 2004 8:00 PM CST

I hope everyone had a wonderful Valentine's Day. We had a great weekend spending quality time together and got the house clean and ready for the crazy week to come.

I was curious what the difference was in growth between Zachary and Sydney. Zachary is weighed at every clinic visit we have (atleast once a week), but it is ususally with all of his clothes on. Then when we had the echo test done they had me take all of his clothes off for a more accurate weight. He weighed 12 pounds 3 ounces and was 24 inches long. To give a comparison, when Sydney was 6 1/2 months old she weighed 14 pounds 14 ounces and was 26 inches long. They do not feel this is anything to be concerned about, he is just very small. But, he is our small precious package of joy.

We have a busy week ahead of us. Max, Zachary and myself will head to the hospital at 5:30 in the morning for the surgery to have the second line placed in his chest. I pray that everything will go perfect and he will make it through this with flying colors. We will then have the CT-scans done under sedation on Tuesday as well as blood counts. Then Wednesday will be Chemotherapy and Physical Therapy. Finally, Friday we meet with the Bone Marrow Transplant Doctor to review everything and hopefully get an exact date for when we will be admitted.

Thanks again to everyone who signs the guestbook. It is such a treat for us to read what everyone has to say. I would also recommend that you read the link to Jeremy's website. This little boy also was diagnosed with HLH and is about 130 days post bone marrow transplant and doing well. He and his family are a great inspiration for us.

Thanks again and God Bless you all.

Friday, February 13, 2004 3:12 PM CST

Zachary and I had an appointment at clinic today to check his blood counts again. An appointment that was suppose to take only 15 minutes ended up taking around 2 1/2 hours. Zachary's lines decided they weren't going to draw. So we had to wait for the medicine that they put in the lines to work. Thankfully the medicine worked and they were able to get what they needed. We got a call from clinic this afternoon that his counts were much better. That was a tremendous relief heading into the weekend.

While we were in clinic, I watched as many children were getting chemotherapy or having blood drawn. These children amaze me, they take everything in stride and with such grace. We could all learn a lot from these little ones.

Zachary is doing good. We are finished with steroids for the next week and half. This makes everyone in the house happy :) including Zachary. He continues to have a slight cough, but I have had three doctors listen to him and they do not feel as though this will be a concern for Monday's surgery. We want him to be safe and you try to protect your children at all cost. Then something like this happens and it brings protecting your children at all cost to a new level.

Sydney is doing good. She continues to shower her little brother with all kinds of love. This little girl has more love and compassion than any child I know. She is also loving her special time with her Nana.

We are looking forward to the weekend and having Max at home. He is a wonderful loving man and father. I can't imagine sharing my life with anyone else. Sweetheart you complete me.

Enjoy every moment you have with your family. Take time to to give that special someone a hug and kiss. Have a very special Valentines Day.

To all the people who have signed the guestbook. We are so very grateful for all your loving and encouraging words of support. It means a lot to us that you are willing to take the time to share your thoughts and prayers.

Thank you and God Bless you all.

Wednesday, February 11, 2004 6:29 PM CST

I apologize to those who checked in on us yesterday and were hoping for an update. We spent our day recovering from a very hectic Monday.

Zachary is on his second day of steroids this week. It causes him to be somewhat irritable. He has to take them every other week. He wants to be held and walked with. He is usually just a calm little guy that watches everything that is going on around him, until steroid days hit of course. We had physical and occupational therapy today. It went pretty good. His therapists feel as though he is progressing well considering what he has to deal with, ie., steroids, chemotherapy, interrupted nap times due to doctors visits and the lines in his chest.

Zachary is blessed with having some wonderful people caring for him. But the one that stands out the most is his primary nurse in clinic. Not only is she the greatest to Zachary she also offers me a lot of support as well. She is a woman that makes a difference in our lives as well as others. We feel very fortunate to have her taking care of our precious little guy.

Today was a big day for our donor. He went to have all his testing completed. I found myself thinking of him often and longing to be able to give him our deepest thanks for his unselfish act of giving of himself. May God bless him and watch over him. He is making a huge difference in our lives. I hope he realizes how very much he is appreciated.

Zachary and I came home after being at the clinic today and we were greeted by Sydney and Nana. A question Sydney frequently asks when we come home from the clinic is if Zachary is all better now. Oh, how I long for the day when I can tell her yes. Those two children love each other so very much.

God Bless you all.

Monday, February 9, 2004 7:54 PM CST

Hello to everyone!!

Today has been a long day and a tiring one at that. It started at 5:00 this morning when I had to wake my sweet little boy. He was unable to eat 4 hours prior to his sedation so we chose to eat breakfast earlier than normal. He usually sleeps until 7:00 so he wasn't sure what to think of me actually waking him to eat for a change. Then at 8:30 we had blood drawn for his weekly count check. The counts came back a little low in some areas but it is to be expected the week after chemotherapy. Hopefully they will go up after doing his steroids this week. We then went in for our appointment for sedation and an echo test to evaluate his heart function. Zachary was a happy little guy until about 15 minutes after the medicine was given and he then turned into a child I have not ever seen. Let's just say the sedation medicine had the opposite effect for him and we were unable to successfully complete the test. We will try again next week. We then came home long enough to have lunch with Nana and Sydney and then we headed back to the hospital for our appointment with the pediatric surgeon. Our appointment was scheduled for 2:30 and after a long wait and being informed by the nurses that the doctor was tied up in surgery we waited patiently. My take on waiting for these doctors is that I want them to take there time and do the job right. It could be my little one that they spend that kind of time with next. You can't rush perfection. After waiting approximately 3 hours we were finally seen. The doctor informed us that we would be keeping the Hickman Line that Zachary currently has and placing a second line on the right side of his chest that will be under the skin. This will give the doctors and nurses more access to him if needed during transplant. I know these are necessary, but it is so hard seeing this perfect beautiful little body cut and scarred up at such a young age. Talk about battle scars! We will do this procedure this coming Monday along with a lot of other things that were already scheduled. My Dad was able to go with me today, it was so nice to have his support and company.

We got home about 6:30 this evening and were greeted by smiles and hugs from Sydney that could make a hard day seem to drift away for the time being. Our precious, precious little girl and boy, how very lucky your daddy and I are to have you in our lives.

Thanks again for all your prayers and support.

Sunday, February 8, 2004 8:26 PM CST

Today has been a glorious day. The weather today was beautiful, it makes us long for the spring weather to come.

My Mom and Dad came in on Saturday. Mom will stay for the time that Zachary is in transplant and after until our life calms down some. Daddy will fly out to head back to New Mexico on Tuesday. We are so very thankful for all the help and support that they give. It will be reassuring to know that Sydney always has her Nana to take care of her when we are in clinic for treatments or once we are in the hospital for transplant.

Max and I had an evening out together. It was so nice to be able to sit in a restaurant and enjoy each other for awhile. When faced with a situation like this it helps remind you to appreciate all the small things in life. Even if it is an evening out with the one you love.

Zachary has a big day tomorrow. He has blood counts, his echo test (which he will be sedated for) and physical and occupational therapy in the morning. Then we meet with the Pediatric surgeon for an evaluation to have his Hickman Line replaced and to discuss what are options are to have an additional line placed as well. This is all in preparing him for transplant and as I am ready to move forward, although I am also nervous to put him through all this.

I am touched in a way that is hard to properly express. The love of family and friends warms my heart and helps us through each moment. The kindness and prayer offerings of strangers brings our strength to a greater level. Thanks to all of you.

We will let you know how tomorrow goes. I will have my Dad to keep me company and Mom will be with Sydney.

May God bless you and yours as He continues to bless us.

Friday, February 6, 2004 7:34 PM CST

Hello to family and friends.

This web page is new to us and we are proud and happy with the responses received thus far.

We felt it was important for your sakes as well as for ours (including Zachary and Sydney as they grow older) to provide details around our journey thus far.

On October 10, 2003, Zachary was admitted to Henrico Doctors' Hospital following a visit to his pediatrician with a high fever. That same day I had flown to Phoenix for a "guys weekend." The initial thoughts certainly focused on short-term admittance and a quick return to health. Thus, I did not return until originally scheduled on Oct. 12. However, Stacy's Mom (Dianne Brewton) had Nana's-intuition and flew to Richmond to help with Sydney and Stacy. Also, Kim Tate was already here as she and Jordan (her daughter) had come to visit on the 9th to spend time with Stacy, Sydney and Zachary.

As each day passed and his health was not returning, our concerns grew. By my return on the 12th, I think we had begun to reach a point of valid concern. These concerns were cemented as the doctor's continued to evaluate, research, and try different tests/theories to determine the problem.

On the 13th of October, he was transferred to St. Mary's Hospital due to their accelerated PICU (Pediatric Intensive Care Unit). Again, doctor's began evaluating and testing. His platelets and blood counts (white and red) were dropping, so we began steady diets of transfusions. Furthering our situation was Sydney's admittance to St. Mary's with croup. At least we were all in the same hospital. Stacy staying with Zachary. I was staying with Sydney. Sydney was released the next day (14th).

Our focus was upon Zachary. Liver failure was the initial theory voiced to us. But we knew the doctors were perplexed. By the 5th day at St. Mary's and his 3rd doctor (due to rotation), we had some direction despite our displeasure with the newest theory. A Hemotologist, Dr. Cliff Russell from MCV (Medical College of Virginia at Virginia Commonwealth University) was called in to evaluate. He theorized that Zachary suffered from one of three conditions: a severe virus, Leukemia, or Hemophagacytic Lymphohistiocytosis (HLH). HLH was his suspected diagnosis based upon bloodwork and slides, but a spinal tap would need to be performed to rule out Leukemia.

We were shocked, scared, and sad. We had gone through the loss of our friend, Chris Corbalis, in 1989 to Leukemia, so we understood the potential. But, we were told that HLH could actually be a "worse" diagnosis given its smaller level of understanding and experience by the medical community. So, viral was our hope and prayer.

We were transferred to MCV that night (the 17th) so the spinal tap could be done the next morning. Initially Stacy and I were questioning our agreement to transfer. Partly because St. Mary's and the staff were so warm, caring, professional, and knowledgable, and partly because the facilities were top grade. But, mainly because MCV seemed so opposite initially. After being transported via ambulance, we waited in the hospital room for about an hour before being properly welcomed by the nurses. While listening to fellow children cough (croup sounding), cry, and whine about wanting candy before bed and tv. Stacy settled in for the night, finally, in the hospital (which she had done each of the previous 8 nights) and I returned home for a few hours of sleep. While the ammenities did not excel we grew in confidence with the level of care. The nurses were informed, involved, and cared for all of us with love and tenderness. Furthermore, the reputation of the hospital is excellent.

Dr. Dunn performed the spinal tap on the 18th. The tap could tell us in about an hour whether or not he had Leukemia, but it would take a number of days for any other results. Stacy and I ate breakfast that morning at a McDonalds in the hospital while the tap was performed. But, I can't say we ate much. We spent more time talking, staring at one another, and praying.

As Dr. Dunn put it, "he does not have Leukemia." Whew, I'd never felt more relieved in my life. The 2 hour nap I got at the hospital that day while Stacy came home to shower, etc., was the best I'd slept in 10 days. We felt positive and relieved, but knew that uncertainties still abound.

Zachary had trouble maintaining IV lines having pulled one out of his arm and both main lines that had been set. This kept us and the nurses hopping.

He was tranferred out of the intensive care unit on the 19th since his blood counts were somewhat stable, he had broken his fever, and continual observation was not necessary. His prognosis continued to improve and Dr. Russell was becoming more and more reliant upon a severe virus as the final diagnosis. Stacy and I, me especially, were anxious to get home and return to normalcy with our newest child. We were sent home on Oct. 23rd despite a slight return of a fever the night before.

The fever did not break overnight. We called Dr. Russell the morning of the 24th. We were asked to return to the MCV clinic that day. Dr. Massey greeted us. Our life was sent spiraling that day as she confirmed that Zachary had Hemophagacytic Lymphohistiocytosis (HLH). A rare blood disorder that causes his immune system to basically kill itself as well as other organs. The cure was a bone marrow transplant and the medicines included chemotherapy. Without treatment we were told his survival was limited from 2 to 12 months. What was our future? We didn't know for sure, but knew that together we would make it. Plus, we had a final diagnosis and direction, which was comforting.

We started chemotherapy that night, October 24th, at 11:35pm.

The uncertainties included the steps to a final cure (marrow transplant), reaction to chemotherapy (both positive blood counts and the negative side effects that are common (mouth sores, thrush, hair loss, nausea, etc.), hospital requirements, insurance coverage, and Sydney.

Zachary reacted positively to the chemotherapy and steroids, as well as many other preventative medications and was able to come home 7 days later, Oct. 31. Our parting words from Dr. Laver was that we could expect multiple hospital visits while we progressed toward finding a bone marrow match. Anytime a fever spiked we would be admitted. We could not hesitate with his health.

As a testament to Stacy's care and the love Zachary receives from us all he has not been readmitted once since Oct. 31.

Our days and weeks have been marked by day visits to the Clinic for chemotherapy treatments, blood counts, doctor and nursing observations, and even some physical therapy. During this time the doctors and nurses have been searching for a marrow match as none of the family members were acceptable matches. We have found our hero: a 38 year old male Caucasian. His full identity is a secret and we don't know if we will ever know who he is, but we are grateful to him for being willing to share a part of himself to save Zachary. We anticipate going to transplant near the end of February.

Stacy has carried us through this with strength. Together we have found God at a new level and drawn great strength from Him. The prayers that family, friends, and friends of friends have been felt by us. God has chosen us to care for Zachary during this time. All of the reasons may never be known, but we draw grace from the small signs He gives us to help us through.

Our time away from clinic has been spent primarily at home. We cannot risk Zachary being exposed to unnecessary and avoidable germs. Our weekend highlights are usually a drive to Williamsburg, VA to eat at the Sonic Drive-In for a cheeseburger.

To further assist Zachary pre-transplant, but mainly post, our dog, Kiska, whom Stacy and I have loved since 1995 is no longer with us. My mom and step-dad have taken him for the short-term future (12-18 months). We miss him and look forward to welcoming him back to all of our lives.

We are positive about the outcome and know that our family will look back at this as a learning experience, and an experience that brought further love to our family together and individually.

We will keep you informed as we are going through all the pretesting procedures for transplant. Until then, we appreciate your many prayers,concern and kind words. We are grateful to you all.

Wednesday, February 4, 2004 12:25 AM CST

Wednesday, February 4, 2004 12:13 AM CST

A Prayer for Papa's Little Man

There's a little man named Zachary
That's on everyone's prayer list.
From Virgina West to California,
Not a prayer for him is missed.

There are his nanas and his papa's
And his mom and dad of course
There's his sister, cousins, anuts and uncles
We've tapped into every source.

This child is very special Lord
He touches all of our hearts,
So please listen when we tell you
You can't take us apart

Be there with the doctors
In his mom and dads dispair
And touch them on the sholder
Just to let them know you're there

We know you don't make deals and things
By no means is the our request
But when it comes to Great Physician's
We know you are the best.

I'll Leave you with the business
Of all the miracles you do,
Saving souls, lives and everything
Won't you please heal Zachary too!

I'll Gladly take his place oh Lord
If that be in my test
I'll bear it and give you the Glory
Because we know that you're the best!

Wednesday, February 4, 2004 10:40 AM CST

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