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Wednesday, November 26, 2007 2:40 PM CST Hi my heart, my love,
I miss you every day. It will be 3 years on December 12, your smile and your joy of life are still in my heart. So is the incredible sadness and lack of belief that things turn out OK. It breaks my heart that this happened to you and I will always miss you. Holidays are hard when everyone is happy and you aren't here.
Andrei is doing well. Catching up with others his age,gaining confidence and many abilities and skills. I know he would love to have you as a big brother to teach and show him things. He could learn so much from you.
We gave to CureSearch in your memory. I find that the publicity that say we are making progress in the fight against childhood cancer are still only for the lucky few and only for a few certain types of cancer. The rest of us will do what little we can to try to make it come true for others since the federal government cutback on pediatric research funding.
I love you so much and you will always be my heart. I will always be your mommy.
July 29, 2006 Your 10th birthday was Saturday. Daddy and I donated in your memory to CureSearch. We went to your grave and placed a small silver heart and a funny little yellow bird. I wish you were here so I could tell you again what you mean to me. Grandma and Grandpa Norm met us and we sprinkled some rose petals. Paige stopped on her way from Houston. The Hughen's sent a blue heart and some silk petals to put on your grave.
I wouldn't have traded our time for anything. I loved you just the way you were, even when I was angry I never didn't love you just the way you were. I can't tell you how much I miss you and wish you were here.
I know I told you how brilliant you were. Your sunshine of a smile, your funny sense of humor, your bounce, your fearlessness, and your joyful personality. You will always be my heart. Daddy and Mommy love you so much, and always will. You are my heart. You always will be.
Friday, November 26, 2005 8:19 PM CDT Another of our friends Sean Mack has relapsed and is going through chemo to try to put him in remission.
Our friend Jennfer Wilks lost her fight November 25, 2005. Our hearts go out to her family. Her website can be found at http://www3.caringbridge.org/tx/jenniferw
Monday, April 11, 2005 8:18 PM CDT Dear family and friends of Sheila, Doug, and Alex Dierking,
Sheila and Doug invite you to attend "A Celebration of Life and Tree Dedication" in memory of Alex Dierking on Saturday, April 23, 2005, 10:00 a.m. at *Laurel Mountain Elementary School in Austin, Texas (see attachment for invitation). Sheila and Doug will be dedicating a Monterey Oak tree which will be planted in the middle of the front circular entrance at Alex's elementary school. The leaves on these trees turn beautiful colors in the fall. Students, teachers and staff will be able to watch Alex's oak tree grow and change everyday!
Doug and Sheila invite all those in attendance who would like to speak at this celebration to please do so and they ask specifically that you tell a happy story or memory of Alex. Also, you may bring photos of Alex to share. If you have any questions regarding this event, feel free to call Charisse Hughen at (512)257-2976.
If you can, Doug and Sheila would like for you to RSVP, to Doug at doug.dierking@mccombs.utexas.edu.
With happy memories of Alex,
Charisse Hughen
*Laurel Mountain Elementary is located in northwest Austin (10111 D.K. Ranch Rd). A Mapquest link is below--
http://www.mapquest.com/maps/map.adp?searchtype=address&country=US&addtohist
ory=&searchtab=home&address=10111+D.K.+Ranch+Road&city=Austin&state=TX&zipco
de=78759
Thursday, April 7, 2005 8:54 AM CDT Dear family and friends of the Dierkings,
Sheila has provided me with an update on a friend of Alex's, Jennifer Wilks, who was diagnosed with Acute Myeloid Leukemia in September 2002. Jennifer was at Texas Children's Hospital in Houston at the same time as Alex and they both had bone marrow transplants there. Since May 2003, Jennifer has been in remission twice and just a week ago relapsed a second time. She now is preparing for yet another stem cell transplant (stem cells to be provided by a family member) to be performed at Texas Children's Hospital in about 3 weeks.
Sheila has always said that Jennifer was such a sweet girl who took the time to play cards with Alex in the hospital. Alex thought she was so nice and pretty too! I believe Jennifer is about 18 years old now and you can see how beautiful she is on her website
http://www3.caringbridge.org/tx/jenniferw/index.htm! I love her smile! I think this is a new caringbridge website set up for Jennifer and I am sure she and her family would appreciate Alex's friends and family signing her guestbook and sending them your love and prayers. She and her family need that very much right now and I know Sheila and Doug would really appreciate your outreach and support to the Wilk's family.
Jennifer's mother and father had rushed to Austin Children's Hospital within 1 hour after Alex's death so that they could be with Sheila and Doug. That tells you how special they are and how much they mean to Doug and Sheila. God's blessings to Jennifer and family,
Charisse Hughen
Monday, April 4, 2005 10:30 PM CDT Dear family and friends of Sheila, Doug, and Alex,
Sheila and Doug Dierking wanted you to know about an important fundraiser coming up in Houston, Texas. On Monday, April 4, 2005 at 11:00 am, the 7th Annual Energize Houston Charitable Golf Tournament will be held and a big poster-size photo of Alex as well as smaller photos of him playing baseball and taking golf lessons when he was sick will be displayed at the 9th hole. At each hole, a different child's photo was chosen to be displayed for this tournament. All proceeds from this Golf Tournament will go to His Grace Foundation and will be used to provide financial assistance and emotional support to pediatric cancer patients and their families in the Bone Marrow Transplant Unit at Texas Children's Hospital in Houston, where Alex had his bone marrow transplant in September 2003.
Here are Sheila's words about His Grace Foundation: "This group was wonderful when we were in Houston. It would be great if something like this could happen to the cancer unit here in Austin. They provided a laundry basket of essentials; toothpaste, shampoo, laundry detergent, snacks and a video for the kids on the day you arrive. They provided parking passes for stays over 2 days in the hospital (at 9 dollars a day for parking and a bone marrow transplant time of approximately 100 days, not to mention the times you wind up back in the hospital for week due to a fever, it was significant). They shopped for the families once a week ($25.00 a week limit) so the kids could have a toy, snacks, or underwear when they were going through them so quickly. They also had a massage therapist who donated his time once a week for the kids, parents, and nurses. They outfitted the family room and once a month would either provide a catered dinner or a brunch."
Sheila and Doug do not expect people to give but they do want others to know that His Grace Foundation is a wonderful volunteer organization that should be remembered.
The Golf Tournament:
Monday, April 4, 2005 (11:00 AM - Shotgun Start)
Northgate Country Club, 17110 Northgate Forest Drive, Houston, TX 77068 /
(281) 444-5302
Dinner, raffle, and auction following
Go to www.hisgracefoundation.org/our_founders.htm for more information on His Grace Foundation and this Golf Tournament.
Grace and Peace,
Charisse Hughen
Thursday, March 10, 2005 8:06 PM CST Dear friends and family of Doug and Sheila Dierking,
Hopefully you have read the update on Sheila and Doug which was entered February 7th onto Alex's website (www.caringbridge.org/tx/alexdierking), written by Lisa Cowan (Alex's website designer and manager and the Dierking's next door neighbor). I greatly appreciate Lisa updating the website since it has been so difficult for me to sit at my computer since Alex's memorial service December 16, 2004. Sitting and writing anything of importance has seemed impossible and I deeply apologize for the lack of correspondence. I am amazed at the strength it took Sheila to write her entry into the Alex's website guestbook on February 8th. It was a very touching letter to the mother of Amanda Barrington from Virginia Beach who understands Sheila's pain all too well, having lost her daughter to complications from leukemia August 23, 2004.
It is quite moving and heartwarming to read the guestbook entries on Alex's caringbridge website. If you have not done so, click on "Sign and View Guestbook" at the bottom of Alex's caringbridge homepage and there you may also write your own message to Sheila and Doug. There are entries from mothers and fathers whose children have died from leukemia or whose children are currently in treatment or presently in remission. There are entries from parents whose children played with Alex while both were receiving treatment and whose children continue receiving treatment at Austin Children's Hospital or elsewhere. Other entries are from parents of children who did not survive, expressing to Doug and Sheila that they are sure their child was there in Heaven with open arms welcoming Alex. There are the messages from the nurses and hospital volunteers who lovingly remember Alex's smile, sense of humor, and courage. Then there are the very sweet entries from Doug's UT students who show great affection and respect for their much-loved professor.
Doug and Sheila are grateful for all the beautiful poems, prayers, passages and words of love and support on the website from Alex's donor and her family, friends they know and friends they have never met. They appreciate your calls, your letters, your invitations to take a walk, work out, get a massage, come over to your home, or go out for a meal. They are thankful to the friends and neighbors who have been so generous bringing scheduled meals to them for the past two months. The thoughtfulness and understanding from Doug's and Sheila's colleagues at work has made this very difficult time more bearable for them. And, of course, most importantly, Sheila and Doug's families, who were by their side every step of their journey with Alex continue to be there for them and with them while they all grieve together.
Sheila and Doug appreciate the very generous donations made to CureSearch for AML research and for the assistance with medical expenses received through the Alex Dierking Fund at Any Baby Can/Candlelighters. They believe that they have resolved all of the major medical bills at this time and request that any further donations go to CureSearch in Alex's name.
Sheila and Doug can attest there is no greater pain than the loss of one's child. Sheila has said that each day or even each moment for them is unknown as to how they will feel, respond, or function. She said they are "muddling through and trying to put one foot in front of the other". Two years ago, when I experienced my mother's sudden and tragic death, I took an 8 week grieving class called "Walking the Mourner's Path" where I learned that the emotional, mental, physical and spiritual responses to grieving are varied, personal, and intertwined. Feelings of sadness, anger, lack of initiative, irritability, anxiety, guilt, fear, blame, indecisiveness, depression, etc. can come and go, last for undetermined lengths of time and can return unexpectedly. I learned it is important that we give ourselves permission to go through whatever stages of grieving we are in.
A beautiful memorial page for Alex has been designed and written by Sheila, Doug, and the yearbook editor for the Laurel Mountain Elementary 2004-2005 school yearbook, which will come out in May. Doug and Sheila are in the thinking and planning stages for a Celebration of Life in honor of Alex. We will let you know when there is a definite place, date and time.
Peace be with all of us who miss Alex so very much,
Charisse Hughen
Monday, February 7, 2005 1:48 PM CST Almost 2 months have passed now since Alex left us. This morning, Sheila asked me to update this page to let you know how they are doing. First of all, I would like to give you a link to Alex's obituary in the Austin American Statesman.
Alex was buried on Dec. 16 at Fairview Cemetery in Bastrop right below the white gazebo. Sheila and Doug hung wind chimes (the chime holder has a hummingbird), and when they go to visit the grave site, they always take a momento to leave. In early summer a marker will be placed when the ground has settled. It will reflect that Alex died from AML. It is Doug & Sheila's hope that some day someone will walk by the grave and say “I can’t believe anyone ever died of this.”
They would like you to know how much they appreciate everyone's support. They, "have a deep appreciation for the kindness and generosity of friends, family, acquaintances, and the strangers who we never met but showed such support to the love of my heart and us."
There were many people who were kind enough to take the time for Alex, arranging special outings for him to enjoy, keeping the Dierkings' lawn while they were away, bringing food, and just in general letting them know they were cared for. The terminal illness of a child touched many people and brought out the generosity of so many.
Finally, the money that was collected in lieu of flowers will be given to CureSearch. CureSearch represents the combined efforts of the Children’s Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF), two organizations united by a common goal: finding a cure for childhood cancer. Money given to CureSearch in Alex’s memory will be directed specifically to AML research.
I would like to add that my admiration for Doug and Sheila's grace, dignity and compassion in one of the most difficult ordeals parents can experience grows daily. I am honored to have known Alex. He taught me a lot, and I'm still learning from him.
Sheila & Doug are beginning to plan a celebration of Alex's life. We will keep you informed of the details through Charisse's email list and this web page.
Wednesday, December 15, 2004 8:55 PM CST Dear friends and family of Alex,
Here are the directions from Austin to Fairview Cemetary in Bastrop where Alex's Graveside Service will be held at 2:00 pm Thursday, December 16th: From Austin, take 71 East into Bastrop. Once in Bastrop, cross the Colorado River and then make a left (going north) onto Highway 95. After Hwy 95 narrows to two lanes, look for the Fairview Cemetary sign on the right. Take the first entrance into the cemetary on your right (Fairview Street) and at the top of a hill, look for the white gazebo. The service will be held by the white gazebo.
Sheila said that the Graveside Service will be about 20 minutes in length. There will not be seating available except for immediate family.
The Open House at Doug's sister's, Debbie Fox's house in Austin, that is to take place AFTER the Graveside Service will begin at 4:00 pm, Thursday, Dec. 16th. There was an email sent out from Lisa Cowan today asking for certain food and paper products to be brought to this Open House. Please be in touch with her as soon as possible at cowan@austin.rr.com to tell her what you can bring.
This morning, Rita Gonzalez (Sheila and Doug's dear friend), picked up Tabitha Welch, Alex's "blood sister", at the Austin airport and Tabitha spent the morning with me. I was so happy to be able to talk with her since I was unable to meet her this past Saturday at the hospital when she met Alex for the first time. Tabitha is an absolutely wonderful 23 year old woman, full of love and life. I talked with Tabitha for quite a while about her life, her decision to donate bone marrow and then her experience of donating bone marrow. I hope that some of you will be able to meet her at either the Visitation at Harrell Funeral Home tonight from 6:00 pm-8:00 pm or at the Graveside Service tomorrow at 2:00 pm or at the Open House at Debbie Fox's home tomorrow at 4:00 pm. She will be staying with Debbie Fox until she leaves for Oklahoma City Friday, Dec. 17th at 11:00 am.
I had called Tabitha on Monday telling her that if she could get here from Oklahoma City for these services, friends of the Dierkings would come up with the funds to pay for her flight. Many of you have asked how you might be of help to the Dierkings right now and they so wanted Tabitha to be here, so if you would like to contribute to the $300 cost for Tabitha's flight here, please email me right away and tell me the amount you would like to give and when I get $300 worth of contributions, I will stop any further offers. I will confirm with you that I am needing your specific contribution and then you can send a check to: Charisse Hughen, 10507 Tweedsmuir Drive, Austin, TX 78750 once I have told you to send it. Thank you.
May you be granted the strength and peace to give and receive comfort today and tomorrow,
Charisse Hughen
Tuesday, December 14, 2004 8:28 AM CST To Alex's family and friends,
I spoke with Sheila and Doug tonight and these are some of the decisions they have made regarding Alex's funeral arrangements:
Visitation on Wednesday, Dec. 15th from 6:00 pm-8:00 pm at Harrell Funeral Home, 4435 Frontier Trail near South Lamar and Ben White Blvd. (443-1366). This will be closed casket and will be an opportunity for friends and family to visit with Sheila and Doug and to remember Alex.
Graveside Service On Thursday, Dec. 16th at 2:00 pm at Fairview Cemetary in Bastrop (directions to follow). Father Hoster from St. Georges Episcopalian Church will be officiating at this service. Sheila and Doug liked Fairview Cemetary because it is an old country, historic landmark cemetary, founded in the 1830's and it is a cemetary that allows them to do whatever they want with the gravesite area. They liked that Alex will be buried by a tree and beside a white gazebo.
A Celebration of Alex's Life Service will be in the future but there are no plans on this event yet. Sheila and Doug realize that it will be difficult for most to attend the graveside service on Thursday and their hopes are that most friends will be able to come to this Celebration of Life service.
A small notice will appear in the Austin American Statesman this Tuesday and a larger notice with Alex's picture will be in Wednesday's paper.
Doug and Sheila have not yet decided where they want donations to be made in honor of Alex but I will let you know when they know. They are asking that this be your expression of sympathy and remembrance in lieu of sending
flowers.
Thank you, once again, Alex, for touching all of our hearts,
"Miss Charisse" (as Alex would call me)
Monday, December 13, 2004 3:50 PM CST Dear Alex's friends and family,
I know each of you are grieving the loss of our dear little soldier, Alex, who fought his battle over leukemia so hard over the past 19 months. My heart feels so heavy and my gut aches today, mostly knowing the pain that Sheila and Doug are going through as they plan for their son's funeral arrangements. I will never forget watching the Dierking family last night as they so lovingly guided Alex through the last few hours of his life in his hospital bed in PICU. Alex's breathing was very labored as his heart and lungs were shutting down but we were all assured that he was not in pain due to the regular administering of morphine and Versed (anti-anxiety medication). Sheila and Doug never stopped holding Alex's hands and gently rubbing his head and face. They continually spoke to Alex telling him that they loved him, that he can relax and sleep and that he doesn't have to fight anymore. They told him that mommy and daddy will be fine and that he can let go. Their words and actions were the most selfless gifts of love. Alex was able to die peacefully and as pain free as possible due to the
grace and wisdom of his parents.
My husband, David, mentioned in his email last night that Alex had stopped breathing at a moment when the room seemed to be lighter with a bit of levity. We were laughing at some kidding that was going on between one of Sheila and Doug's friends and Dr. Wells and our attention was off of Alex for a very brief second and that is the moment Alex took his last breath. It was as if Alex waited for us to be distracted and even waited for some laughter and then he knew it was OK to go. Brave to the end.
There was such wonderful support for the Dierkings in the hospital room yesterday. Doug's sisters, brother-in-laws, father, and niece were there as well as Sheila's mother, Norm, Sheila's half brother and his girlfriend, Sheila's father, 7-8 close friends, and health care professionals and social workers who have been through much of this journey with the Dierkings. Alex, Sheila and Doug were surrounded by so much love and support there and they felt all of the thoughts and prayers coming from all of you.
I have not yet heard from Sheila and Doug today. Last night, Sheila and Doug and Sheila's mother stayed at a local hotel not wanting to go back to the house. I understand they slept pretty well, got up and had breakfast (which I am glad since yesterday they ate nothing at all) and then went to the funeral home. Doug's sisters, Debbie and Angie, along with the Dierking's housekeeper cleaned up the house this morning for their return home.
As soon as I know any details about the funeral arrangements or the decision regarding memorial gifts of donation, I will send out an email. I will also let you know of other ways you might be of help and support as I learn of them.
The Dierking family have requested that no meals be brought to Sheila and Doug until after January 1st. The extended family know they will want to be cooking and gathering together for meals through the holidays.
Love to all of you who share in this time of sadness,
Charisse Hughen
Sunday, December 12, 2004 9:22 PM CST It is with great sadness that I report Alex's long, courageous battle with leukemia ended tonight at 7:20pm. He was surrounded by approximately 12 close friends and family. An hour earlier an Episcopalian priest had stopped by the room to administer a prayer of peace for Alex.
During a time when this loving group of people who'd surrounded his bedside throughout the day had started to fondly, warmly, humorously reminisce about the fun times with Alex, that Sheila noticed he'd simply stopped breathing.
Charisse remains at the hospital and, in all likelihood, will give a more detailed account tomorrow.
Of course, much more information will come regarding the formalities of memorializing his life. Sheila and Doug are obviously grief-stricken at the moment.
A prayer to our sweet angel...
David Hughen
Sunday, December 12, 2004 6:59 PM CST All,
My wife (Charisse, your regular correspondent) called me from Children's ICU just now to state that, since her arrival around 1:00pm, Alex has remained in a fairly constant condition. His breathing is labored. He's on oxygen, morphine drip and other medications to minimize pain. No attempt is being made to treat the disease at this point and he does not appear to be aware of his surroundings.
A small group of family and friends have attended the vigil at his bedside throughout the day. Doug and Sheila are constantly, gently sharing their quiet moments with him. At certain points they get on the bed and curl up beside his weak little body. They assure him he can let go, that he no longer needs to fight this dreaded disease, they tell him to relax, be calm and know they'll always love him.
Though the ICU floor is kept in a cold condition, Alex's body remains hot---reflecting this little boy's fight for life. As a tribute to so many who care, Alex is wearing one of his favorite "Any Baby Can" t-shirts.
We wait...
We'll send out at least one more update before day's end.
With a heavy heart,
David Hughen
Sunday, December 12, 2004 12:33 AM CST Dear all of Alex's friends and family,
Sheila and Doug were told this morning that Alex has only a day or two to live. They are keeping him in the PICU room and he is on oxygen and a morphine drip. He comes in and out of sleep and is experiencing some hallucinations, happy ones I understand. They have opened the room up a bit so that Alex can be surrounded by his mom, dad, aunts, uncles, cousins, grandparents, and dear friends. The pastor from Hyde Park Baptist is there as well.
As these family members and friends hold vigil beside our sweet little Alex, may we all close our eyes and say a prayer of peace as God carries Alex in his arms from this world into Heaven. May we all find the strength to help this family today, tomorrow and for the months and years to come.
Our love is with you, Alex,
Charisse, David, Kelsey and Christopher Hughen
Saturday, December 11, 2004 4:28 PM CST To Alex Dierking's fan club,
Sheila called me at 2:00 pm to tell me that Alex seems to be holding his own. She said that he fades in and out of sleep and that he did not sleep well last night. His temperature is starting to come down with Tylenol, his face is not as puffy, and his color is a bit better. Alex's left collapsed lung has reinflated but fluids are still being pulled out of the lungs via a tube that was inserted into his chest cavity during the draining procedure yesterday. Sheila was pleased to report that Alex's kidney counts seem to be coming down to normal range. He does continue to have diarrhea and vomiting but it is not as severe as it was.
Yesterday, Alex was moved to a bigger room in ICU so that allowed a cot to be brought in for Doug to sleep on last night. The hospital also was able to provide a room upstairs on the green unit (cancer floor) for the Dierkings to use so Sheila got to sleep there for about 6 hours last night. There is also a shower in that room for Sheila and Doug to use.
Tabitha (Alex's blood donor) and her friend, Jean, came back to the hospital this morning. Alex has been sleeping a lot so he has not been able to talk much with Tabitha. Debbie (Doug's sister) did take Tabitha and Jean to Alex's favorite lunch spot, Top Notch Hamburgers, so they could bring lunch back for everyone. Sheila shared with me that Tabitha's interest in donating bone marrow came about after Jean's husband died of AML 2 years ago. What special friendships these will be. Tabitha and Jean will be driving back to Oklahoma City tomorrow morning.
Sheila and Doug are so touched by the outpouring of love and support that they feel from all of you, whether you are in the waiting room, bringing them food and water, emailing me, writing a note to Alex on his caringbridge website (www.caringbridge.org/tx/alexdierking), calling or praying. They send their love right back.
God bless you all,
Charisse Hughen
Friday, December 10, 2004 10:43 PM CST Dear all,
Rita Gonzalez is a dear old friend of Sheila's and she was at the hospital today for most of the day. She just sent me this email tonight so I will let you read it as she wrote it:
I just left Brackenridge and Alex is still holding his own. The doctors said that it would take between 6 and 8 hours to tell if the procedure to drain the liquid around his lungs was going to help his heart and kidney to function properly again. A special guest arrived tonight. She is Tabatha, the wonderful young lady who donated bone marrow to Alex. She is his true blood sister. Alex was able to chat a bit with her as he moved in and out of sleep. Alex's family, relatives, and friends have been holding vigil at the hospital. Tonight Doug and Sheila did get to get a bit of a break to eat some food and meet with waiting visitors. Thankfully, a room is available tonight that Sheila and Doug will use to sleep. They plan 4 hour sleep shifts. No one knows what will happen next. The reality is that Alex is still with us, still fighting, and is very aware of his surroundings although he is a bit woozy. As he drifted in and out of sleep, he spoke to his Dad about Rudolph (reindeer) and making sure they got a Menorrah. Last night he woke up and told Sheila he had been dreaming about being at home and playing with his friends. Doug and Sheila's goal is to bring Alex home for Christmas. This may require hospice assistance, which is being arranged just in case.
Peace and hope to you.
Rita Gonzalez
The only other news that I can add, after having spoken to Sheila on the phone at about 10:00 pm tonight, is that Tabitha did drive here from Oklahoma City with a friend of hers named Jean and when Alex met Tabitha he got the biggest smile on his face! Apparently, Alex and Tabitha talked about their favorite movies briefly and then Alex said he was tired and wanted to go to sleep. Tabitha and Jean will be staying at Debbie Fox's home tonight.
Pray for rest,
Charisse Hughen
Friday, December 10, 2004 9:47 PM CST To all those who love Alex,
I just received a phone call from Clare Dyer who had been in the waiting room while Alex had the procedure to drain fluid from his lungs. She said that Doug came out into the waiting room to give the good news that Alex survived the procedure, is alert and that he has more color than he has had! He is currently doing a breathing treatment and they are trying to reinflate one lung that is still slightly collapsed.
Once again, this miracle child proves to everyone that he is a fighter not to be reckoned with! Alex, you make us all smile with pure amazement.
With a grateful heart,
Charisse Hughen
Friday, December 10, 2004 5:34 PM CST Dear family and friends of Alex,
Clare Dyer, a dear friend and co-worker of Sheila's, just called me from the waiting room of PICU at Austin Children's Hospital. She said that Alex has gone into congestive heart failure and that a procedure to drain fluid from the lungs must be performed immediately. Three doctors (Dr. Wells, the heart specialist and the PICU doctor) are recommending that this be done. Alex's heart is not pumping properly because of so much fluid in the lungs. He will be heavily sedated. This procedure is risky but there is not another option at this time to get him out of congestive heart failure.
Sheila, Doug and Sheilas' mom and Norm will be there with Alex. The minister from Hyde Park Baptist church is present as well. This procedure will be done in the same PICU room where Alex has been since Wednesday. They expect the procedure to begin around 4:00-4:30 pm and she did not know
the length of time that it would take.
Sitting in the PICU waiting room are three dear friends of the Dierkings. Doug's family have all been in Fort Worth for the graduation of Doug's niece from Seminary today and they are all driving back here now to be with Sheila, Doug and Alex.
Sheila has asked that there be NO PHONE CALLS please at this time. Sheila and Doug need to be very present with their little boy right now.
Alex, we love you.
Charisse Hughen
Friday, December 10, 2004 12:17 AM CST To Alex's friends and family,
I just spoke to Sheila on the phone and Alex is having more serious complications now. They are hearing fluid on his lungs, his breathing is more labored, and his kidney function is off. Alex has continued to have severe diarrhea and vomiting through last night and this morning. He had to get platelets last night because his gums were bleeding. All oral medications are on hold now since he cannot keep anything down. The cultures are still not growing anything so there is nothing specifically to treat, just symptoms.
Sheila said the doctors were making their rounds so they would be seeing the cardiologist and the Pediatric Intensive Care doctor soon. I am sure that wait for the doctor to come in and talk with you about your child feels like an eternity.
Alex was sleeping when I called. Sheila had stayed in the room with him last night and Doug slept in the waiting room. Sheila's mother will be coming today from San Antonio just for the day and they are expecting Tabitha, Alex's blood donor, to arrive tonight. Alex has been so wanting to meet his "blood sister".
Please keep Alex, Sheila and Doug on your hearts and in your prayers today. If you choose to call Sheila on her cell phone (773-0828), do not call before 9:00 am or after 9:00 pm and be prepared that they may be unable to talk at that moment. Remember not to send live plants and flowers because Alex cannot have them around him. There also is a limit on the numbers of visitors to the PICU at Austin Children's Hospital, so if you wish to visit, please call Sheila ahead of time to ask if it is a good time or not.
If you would like to send a card or letter to the Dierkings, send it to their home and Doug's brother, Walt or Doug's sister, Debbie, both of whom live within a mile from Alex, can deliver it to them in the hospital.
Here is their home address:
9101 Caira Cove
Austin, TX 78750
Blessings,
Charisse Hughen
Thursday, December 9, 2004 8:31 PM CST Dear family and friends of Alex,
Alex has not been feeling well today and is extremely weak. Throughout the night and today, he has been throwing up and had diarrhea. When I went to the hospital to visit him this morning, he was sound asleep and did not know I was there. Doug had stayed in the room with Alex all night and had not been to sleep at all. Sheila, however, was able to get some sleep last night while laying in the waiting room.
They are thinking that the vomiting and diarrhea are due to the multiple medications he is on and not being able to eat, although, cultures are being run to see if it might be due to something else.
Do try to be gentle on yourselves. I know this journey can be very stressful for the family and friends who so dearly love Alex, Sheila and Doug. I will let you know more when I know more,
Charisse Hughen
Thursday, December 9, 2004 8:41 AM CST Dear friends and family of Alex,
I spoke to Sheila around 9:00 last night and she said that Alex was awake and alert. He wanted to watch TV and even got himself to the bathroom. The heart medications they were able to get him on in PICU were definitely working. Sheila said the doctors think he will be in PICU for 24-48 hours and then they would move Alex back to the Cancer floor. Sheila was going to sleep in the room with Alex last night and Doug would be sleeping in the waiting room (with very little sleep occurring for them, I am sure.)
I plan on going to the hospital this morning and then I will send out another update.
Blessings to all of you,
Charisse Hughen
Wednesday, December 8, 2004 9:34 PM CST Dear Alex's friends and family,
Sheila called me at 4:45 pm and said that Alex was being taken from the Cancer Unit at Austin Children's Hospital to the Pediatric Intensive Care Unit at that time. Alex's heart has been shocked by the fever and it is not functioning properly. He is needing special heart medications and that has to be done in PICU. Sheila said that Alex continues to have fever and has been sleeping most of the day.
I know Sheila and Doug are terrified and feeling this is all too familiar. Those of us who are parents ask, "How have they been able to so bravely endure caring for and watching their child go through so many serious ups and downs for the past 19 months?" Sheila's response to me when I asked her this several months ago was simply, "It's not about me. It's about him." I told her those words will be etched in my mind forever.
May we honor a very courageous family by holding Alex, Sheila and Doug deeply in our hearts tonight,
Charisse Hughen
Wednesday, December 8, 2004 12:04 AM CST To Alex's family and friends,
Sheila just called to tell me that Alex had to be admitted to Austin Children's Hospital last night around 9:30 pm because he had a fever of 103 degrees. She said he was rather listless yesterday, took a nap and threw up after having dinner. Dr. Shaeffer was on call last night and Dr. Wells will be seeing Alex this morning. When Sheila called, Alex was asleep and she said none of them (Sheila nor Doug nor Alex) had slept well last night - with medical staff needing to come in and out of the room frequently. They ran a variety of blood tests but those results are not back yet. They also did a nose wash to make sure is wasn't flu, even though all three of them did get flu shots this fall.
Alex is still running a low grade fever this a.m. and cannot be discharged from the hospital until his fever is gone without tylenol. He is currently receiving two types of broad spectrum antibiotics, a medication to calm his stomach, and hydroxyurea. Alex has been taken off of the Gleevic chemo because it has been ineffective.
Sheila had just called me two days ago to say that the results from that day's clinic were that Alex's kidney functions were back to normal and that his blasts were down. Although, when I saw Alex Monday, Dec. 6th, I thought he looked like he did not feel well at all. There was not the "Alex sparkle" in his eyes, his hair seemed more sparse, his skin so white, his face very full, and he was very clingy to his mom. He had spent a full day at clinic and he was tired.
This weekend, Alex's bone marrow donor, 23 year old Tabitha from Oklahoma City, will be coming to Austin to meet Alex for the FIRST TIME! Sheila, Doug and Alex were to go to Dallas and meet her and drive back down to Austin with her but they do not know if they can make that trip yet. They were to head to Dallas on Friday, Dec. 10th to attend Doug's niece's graduation from Seminary and therefore offered to lead Tabitha to Austin. If the Dierkings are unable to make the trip to Dallas, Tabitha will come anyway, knowing that it is important to see Alex sooner rather than later. Alex and Tabitha talked on the phone for a half hour last week and they are so looking forward to finally meeting each other. What a blessing that meeting will be.
For a post-Thanksgiving update on Alex: They had a wonderful Thanksgiving at Debbie Fox's home here in Austin! Alex's pancreatitis had gone away and his stomach was feeling so much better so he could enjoy his Thanksgiving dinner! The Dierkings all went to Elgin, Texas a couple of weekends ago to cut down their own 12 foot Christmas tree in the forest where they have gone traditionally every year. Alex's home is beautifully decorated for Christmas inside and out! They so have been looking forward to being at home for Christmas with Alex this year. Let us pray hard that they can do that.
As soon as I receive news from the hospital I will let you all know,
Charisse Hughen
Wednesday, November 24, 2004 7:11 AM CST Dear friends and family of Alex,
The Dierkings had a bit of a scare this weekend with Alex. Starting last Thursday, Nov. 18th, Alex began vomiting after he would eat. The vomiting continued intermittently through Saturday so on Sunday, they admitted Alex into the oncology unit at Austin Children's Hospital where he had some tests run and received platelets. The hospital did not keep him overnight but asked that he return the next morning. On Monday, Alex went back in and had a heart sonogram, received red blood and they drew blood and looked at his counts. The doctors did say that Alex's kidney counts were going up and there was concern about his kidneys again. After being at the hospital for 9 hours yesterday, Alex was diagnosed with pancreatitis (inflammation of the pancreas) which has to go away on its own. What can cause it is a diet heavy in fats and Alex has been craving and eating fatty foods such as cheeses, dips, salami, breads, etc. Dr. Wells hopes that the pancreatitis will go away with a better diet. In addition, they took him off of some of his heart meds which can be toxic to the kidneys to see if that helps the kidneys.
Today, Alex went back in again for further testing, and Sheila and Doug were unsure as to whether the doctors would require that Alex stay in the hospital over the Thanksgiving holidays or not. But the good news they were told today was that the counts seem to be moving in the right direction and that Alex would not have to stay in the hospital!! That was such good news for the Dierkings especially with the memories from last Thanksgiving when they had to be in the hospital in Houston instead of home.
The Dierkings will be able to celebrate Thanksgiving with Debbie and Tommy Fox (Doug's sister) and much of their family here in Austin. Sheila said they are truly grateful for that. And while the Dierkings count their blessings around their Thanksgiving table this Thursday, let us all include Alex Dierking as one of our very best blessings for which we have to be thankful this Thanksgiving 2004.
With a grateful and thankful heart,
Charisse Hughen
Monday, November 15, 2004 10:59 PM CST Dear family and friends of Alex,
We all know that there was a very special angel who donated her bone marrow to Alex 14 months ago on September 5, 2003 so that he could receive the bone marrow transplant he needed. You may remember that the donor policy is that neither the donor's nor the recipient's identity can be released until one year after transplant. Last week, the Dierkings received a letter from Tabitha, Alex's angel, or as she calls herself, "Alex's blood sister"! They came to know Tabitha through her three page letter and her photo. She is 23 years old, lives in Oklahoma City, and is a receptionist at her Baptist church. When I asked Alex about her, he said, "She writes very pretty. She looks like she would be nice!" I saw her picture and indeed, she is beautiful. Tabitha was unaware that Alex had relapsed last May so Sheila had to share that tough news with her. Tabitha and Alex hope to meet each other soon.
Alex received platelets today and his blast was at 13%. About a week and a half ago, Alex had a very bad nose bleed which went on for 45 minutes so Sheila took him into the hospital where he received platelets since clotting did not seem to be occurring. The severity of that nose bleed was quite frightening to Sheila and Alex.
On October 30th, on the University of Texas Intramural fields, Alex attended a party in his honor. Delta Sigma Pi, the Professional Business Fraternity at UT, gathered a few of Alex's friends and family and threw him a party! There was pizza, cake, and lots of baseball playing! Thirty UT students of the 70 total members of Delta Sigma Pi came to honor Alex and played ball with him and all the other kids. Alex's dad, Dr. Doug Dierking, was chosen as Faculty Initiate two years ago by Delta Sigma Pi and the members there told me that Doug is their absolute favorite professor!
If any of you Austinites are eating your lunch at Top Notch Hamburgers on Burnet Road (Alex's favorite burger spot), look up on the wall by the soft drinks and you will now see a picture of Alex! You can point to that picture with a big smile on your face and say, "I know him!"
Last week, Alex was given the OK from his doctor (much to the chagrin of Alex's mother) to go roller blading! So on a weekday afternoon, Doug took Alex to SkateWorld and decked out in wristguards, knee pads, elbow pads and a new bright, sparkly, red helmet Alex enjoyed skating for the first time since he was diagnosed with leukemia 18 months ago! Wouldn't we all have loved seeing that?!
Sheila was very happy to have a dear old friend of hers, Susan Miller, from North Carolina, come to Austin after they had not seen each other in 23 years. Sheila said it meant so much to her to have Susan visit and meet Alex.
This weekend Alex came and spent the night at our home. He had not spent the night away from his family since he became ill so we did not know if he would be willing to stay the night. But after dinner and watching a TV movie, Alex snuggled down into his sleeping bag next to my son, Christopher, on the den floor in front of the fireplace and the two of them fell quickly asleep. It was a sweet sight.
We wish for you, Alex, lots of sweet dreams,
Charisse
Sunday, October 24, 2004 9:22 AM CDT Dear family and friends of Alex,
I sincerely apologize for my delayed updates on Alex. Our family is nearing the end of an 8 month renovation project to our home and it has consumed me. However, I do continue to get frequent updates from Sheila. Alex has pretty much maintained status quo in the past few weeks. His recent leukemia blasts have fluctuated between 40% to 10%, while the dosages of his 2 chemos (Hydroxyurea and Gleevic) continue to be evaluated and adjusted. There was a need for Alex to receive red blood cells in mid-October (a four hour procedure to receive 2 units) and then last weekend he went to Austin Children's Hospital on an emergency visit in order to get platelets because his gums and lips were beginning to bleed and subsequently he had some bruising on his body. Recently, he has also started to occasionally take a nap during the day.
Alex continues to receive at-home schooling during the week and is doing well with his academics. He can play with friends and he even helped his buddy, William (who is in remission from leukemia), with his T-ball skills at the neighborhood playground. In early October, Alex had a dream come true...he loves cars (especially Lamborghinis) so the owner of Top Notch Hamburgers (Alex's favorite lunch spot) and our neighborhood police detective, John Nelson, got the owner of a white Lamborghini to pull up to Alex's house and offer Alex a ride in his dream car! What a happy boy Alex was!
You may remember that in my last email, the Dierkings asked for your prayers for their friend, Jennifer Wilkes, who has been having some health complications related to her leukemia. The good news to report is that Jennifer is back in Austin from Houston, her lungs have cleared from the pneumonia and her leg, which had been broken, is doing better. However, she continues to experience some nerve and kidney damage.
The Dierkings are very grateful to those of you who have given blood and platelets here in Austin or wherever you may be. Sheila told me that everyone in the office at Hyde Park Baptist Church went to give blood in honor of Alex and we know of many other friends and family who generously helped Alex and others with their gift of blood donation.
Blessings to each of you,
Charisse Hughen
Sunday, October 3, 2004 8:51 PM CDT Dear family and friends of Alex,
Sheila received some bad news yesterday, Thursday, Sept. 30th. The Dierkings went into clinic at Austin Children's Hospital yesterday because they had received a phone call from the doctor the previous evening saying that Alex's culture was growing something but that it was (and still is) unknown. So blood was drawn and the results were not good. Alex's white blood cell count has doubled since Tuesday and his leukemia blast is at 55% (one and a half weeks ago it was only 10%). What this is telling them is that the hydroxyurea (oral chemo which has been keeping the leukemia blast low) has stopped working at this dosage level. Therefore, Alex's hydroxyurea and the Gleevic (another oral chemo) are both being increased and soon will be at the highest dosages allowable. This, of course, has Sheila and Doug sick with worry.
Alex is experiencing a nonspecific rash all over his body right now but fortunately does not have a fever. He feels good, Sheila said, and had even gone to see "Sky Captain" for the second time last night with his dad. Two nights ago, Alex, Sheila and Doug went with my son, Christopher and me to see the fascinating IMAX movie, BUGS 3D, at The Bob Bullock Museum. It was wonderful sitting near Alex with his big 3D glasses on and listening to him comment and question the activities of each bugs! He seemed to really enjoy himself and his curiousity is endless. The Dierkings have asked that we also pray for Jennifer Wilkes, a 16 year old friend of Alex's who lives in a nearby town, Leander. They met her a year ago at Texas Children's Hospital in Houston. Jennifer was receiving her bone marrow transplant two months after Alex. She also went into remission immediately after her transplant but after breaking her leg recently, she had to be airflighted back to Houston for leg surgery since it was suspected that it might be infected. In addition, she has now developed pneumonia. The Dierkings share and understand all too well the Wilkes' family's heartache and frightened emotions.
Thank you all for your collective prayers,
Charisse Hughen
Monday, September 13, 2004 2:43 PM CDT Dear friends and family of Alex,
Alex seems to be holding his own and says that he feels good. He goes to Austin Children's Hospital several times a week for bloodwork and Dr. Ken Schaeffer (Alex's heart doctor), Dr. Wells, and Dr. Krance continue to consult about Alex's current status and future care. The doctors are slowly adding some medications that he had been taken off of and are in the process of checking out alternative treatments for Alex. Good news has been that Alex's counts have been coming back in the normal ranges.
However, Alex has been needing to receive blood and platelets sometimes a couple times a week because he is not making his own. Yesterday, Saturday, Sept. 11th, Sheila took Alex in to receive platelets but there were not enough platelets available at that time and they had to come back that afternooon to receive Alex's infusion. So I am sending out a plea for those of you who live in Austin to consider donating platelets as soon as possible. I do not know the reason for the low surplus of platelets at this time but this city is obviously in need. You may contact the Blood Center (4300 N. Lamar Blvd.) at 206-1266 to schedule a time for the donation procedure.
Thank you in advance to those of you who may be able to help in this way,
Charisse Hughen
For more information about donating platlets, go to http://www.bloodandtissue.org/html/types.htm and scroll down to Apheresis Donation.
Tuesday, August 31, 2004 11:31 PM CDT Dear Alex's friends and family,
Alex and family went to Austin Children's Hospital yesterday and the tests they ran showed that Alex's kidneys are now functioning normally! Therefore, they can deduce that Alex's kidney failure was chemically-induced (caused by some of the many medications he had been on). Alex's next doctor's appointment will be on Thursday, Sept. 2nd and they will then decide which medications he should now be put on.
Yesterday, Alex also had an echocardiogram done and the results they received from that today show that the heart function has not changed. So the fact that the heart is doing OK or the same after being taken off of some of the heart meds this weekend is a good thing.
We are thankful for the good days and yesterday and today were relatively good days for Alex, Sheila and Doug. We wish for them many more of those good days together,
Charisse Hughen
P.S. Sheila's mom, Marie, will be staying here in Austin until Friday and I know the family is so happy to have her close by this week.
Sunday, August 29, 2004 9:42 PM CDT To Alex's friends and family,
The Dierkings received some very hard news yesterday that Alex is now in renal failure (acute kidney failure). Test results came in on Thursday and yesterday, when Alex was at clinic to receive platelets and blood, Dr. Wells confirmed these results. Doug, Sheila and Alex were at Austin Children's Hospital for the majority of the day yesterday while Dr. Wells consulted with them as well as a heart doctor and a renal doctor. There is some question as to whether the kidney failure is due to some of the medications Alex is on so the doctors decided to take Alex off of 70% of his meds immediately. Sheila said that everyone will know more on Monday. Alex has been taken off of the hydroxyurea (the oral chemo) but is being kept on two heart medications.
This is such difficult news for all of us to hear. Please continue your prayers for strength and peace for Alex, Sheila, Doug and their extended families. Sheila's mom is arriving today from San Antonio. I am grateful that Alex and his mom and dad have their relatives so close by to gather around them for support.
With lots of love for our dear little Alex,
Charisse
Wednesday, August 25, 2004 8:02 PM CDT To all of Alex's friends and family,
Remember Alex's favorite restaurant, Top-Notch Burgers, and how he requested food from there while he was in the ICU last month? Well, day before yesterday, I was able to experience Alex's "top-notch" burger hangout with him and Sheila! I will never forget Alex's big smiles, the very satisfied look on his face while he sat and savored each bite, and him saying to me, "Oh, Miss Charisse, they have the best grilled cheese sandwiches, french fries, and chocolate milk shakes!" Seeing Alex enjoy this small "slice of heaven" while wearing his Top-Notch Burgers T-shirt, will be pictured in my mind forever. He also met the owner, "Nana", who knew of Alex and was very happy to finally meet him. She told him that she also has cancer and has had chemo and radiation and that she has to take pills everyday too. There seemed to be an immediate bond of understanding between the two of them.
Alex continues to feel well, even though he had to go to Austin Children's Hospital on Saturday, August 21st, to receive an infusion of an antibiotic due to the positive results of a culture. He was not feeling badly nor did he have a fever. He received the infusion and was back home the same day to enjoy his visitors, Liz Casagrande from Houston and her family, and Sheila's mom and Norm from San Antonio.
Alex has been experiencing good energy for playing and has even begun golf lessons with a pro at Balcones Country Club, 2 miles away from his house! His lessons are 1/2 hour in length and Sheila said that he is really loving it!
Cindy Tripp, Alex's homebound teacher, comes to their house Monday, Tuesday, and Thursday mornings for a total of 4 hours per week. Even though Sheila would like Alex to receive more time with a homebound teacher, that is the minimum required. Sheila is pleased that Alex has been working so beautifully with Mrs. Tripp and Cindy reports that Alex does not seem to have forgotten anything from last year and that he is right on track!
Doug and Sheila told me some very sad news last night which they asked me to share with all of you. A very special young woman, Amanda Barrington, age 20, who befriended Alex in Texas Children's Hospital in Houston last fall, died Monday, August 23rd, after her battle with AML (Acute Myeloid Leukemia). She was there last year receiving her bone marrow transplant as well, which did put her in 100% remission, like Alex. While they were in the hospital together, she really reached out to Alex and even persuaded him to "swish with the mouthwash every hour" when Alex's mouth was filled with sores from the radiation and chemo. Amanda's home is Virginia Beach, where she had returned after her bone marrow transplant, and had re-enrolled in
college and was going to start a job as well. She had also gone to the cancer floor at her local hospital and visited the small children, ages 10 and under, bringing them each a gift and a smile. In mid-July, Amanda was admitted into the ICU in Virginia Beach because of a staph infection. She experienced kidney, liver and lung failure as her system began to shut down. Amanda's leukemia had never returned but it was this graft-vs-host disease that eventually caused her death. Sheila and Doug want to express tribute to this very strong and positive young woman, who reached out with such compassion to Alex and others with cancer. I encourage you to go to Amanda's website at www.caringbridge.org/va/amandabarrington. For many months, I have been so moved by the emails that have been sent to Alex on his website from Amanda and her family and friends, most of whom have never met Alex. Sheila and Doug have asked that our prayers be with the Barrington family.
Grace and peace,
Charisse
Tuesday, August 17, 2004 8:09 PM CDT Dear family and friends of Alex,
I spoke with Sheila this morning and Alex was downstairs working with the Round Rock ISD homebound school teacher, Cindy Tripp, for the first time this academic year. She had worked some with Alex last year as well. Alex's current 3rd grade teacher at Laurel Mountain Elementary, Pam Jackson, came by yesterday to meet with Alex, Sheila and Doug. Cindy Tripp will receive direction/assignments from Pam Jackson so that Alex keeps up with the learning in Mrs. Jackson's classroom. My son, Christopher, is so happy that he, once again, has the same teacher as Alex!
Sheila expressed that this was a "good morning". Alex had slept about 11 hours last night, had eaten well at breakfast, had taken all of his medications on his own, and had a good attitude about his homebound schooling. She did say though that it makes Alex very sad to know that all of his friends are heading off to school each morning and he is not. Bless his sweet heart.
Alex had clinic yesterday morning, Monday, August 16th, at Austin Children's Hospital. He received another infusion of Pentamidine, an antibiotic used as a preventative for pneumonia, which is administered to him every two weeks. He has his next clinic appointment Friday, August 20th. Dr. Wells feels that Alex is doing well. Alex continues to take Hydroxyurea, an oral chemo, which has definately been working to control his counts and the leukemia blast. Sheila said that they look for the red blood cell count to be optimally between 10 and 12 for his heart and Alex's is 12.5 now so that is OK and Alex's white blood cell count of 2.1 is good and that his leukemia blasts are at 4%, which seemed amazing to me when I can remember that they had once reached 85% in mid-June. The Hydroxyurea has really been doing its job, however, it does have a limited timeframe to its effectiveness.
Since Hydroxyurea is not a curative chemo, Sheila told me that the doctors are looking at possibly starting Alex on Gleevic, a type of chemo that is not very toxic and is considered in the curative category of chemos. This approach to battling Alex's leukemia is supported by Sheila and Doug at this time. I know we all pray for the best results in whatever their decision is to use for Alex.
The Dierkings were thrilled to have a visit from their very dear friend from Switzerland, Doreen Olson, last week. Sheila and Doug met Doreen and her husband, Jim, in Russia when they were adopting two boys from the same Russian orphanage that Sheila and Doug were adopting Alex. Understandably, there is a strong bond that connects these families.
Thank you all for the many ways you've shown your love and support to the Dierking family,
Charisse Hughen
Tuesday, August 10, 2004 9:58 AM CDT Dear family and friends of Alex,
Alex and family did arrive safely into Austin (from San Diego) last Wednesday, August 4th and then went on to Austin Children's Hospital that night to receive his Vancomycin antibiotic. Since that day, Alex has not been back to the hospital although he does have an appointment at 10:30 this morning to get blood counts at Austin Children's Hospital. Sheila told me that she did not think that Alex's color was looking good last night so she assumes that they will need to give him blood this a.m.
Alex has had a pretty busy social life these past 5 days! He has had friends over to play and gone black-light bowling at UT, where he proceeded to bowl 2 games over 100! He came to my son, Christopher's, 8th birthday party which was at a local pool. Unfortunately, he cannot swim at this time, so his visit was brief but it meant a lot to all of us that he was able to come at all. Alex also received a visit from Officer John Nelson, our Austin Police Officer who patrols our neighborhood. He gave Alex a apecial ride in his police car and even turned on the siren in front of our house! Officer Nelson also brought Alex t-shirts, caps, and gift certificates from Top Notch (Alex's very favorite local hamburger joint)! Alex was thrilled! The Dierkings are grateful for the many, many random acts of kindness that friends and strangers continue to show them.
Sheila told me that she is working on setting up home-bound schooling once again for Alex. She does not know who the teacher will be and is hoping that he can start his 3rd grade learning at the same time as his friends return to school which is this next Monday, August 16th.
Alex is planning on a family belated birthday celebration tonight and we once again offer up a true gratefulness for Alex's 8th birthday July 29th. What an amazing child you are, Alex. We all love you so very much.
Peace,
Charisse Hughen
Wednesday, August 4, 2004 8:56 PM CDT Dear friends and family of Alex,
I spoke with Sheila briefly this afternoon and she said that they were heading home from San Diego today. They were getting on an American West flight at 12:30 pm and planning on arriving in Austin at 7:30 pm. She said that as soon as they arrive tonight they will go to Austin Children's Hospital for Alex to receive an infusion of Vancomycin antibiotic.
Sheila reported that they had a very good time at Legoland on Monday, August 2nd and even ran into Dr. Wells and his children there!!! Yesterday, they had a fantastic time at Sea World (for 8 hours!). They were able to go behind the scenes everywhere in Sea World, thanks to Dennis Quaid and they even got to eat dinner with Shamu!
It sounds like Alex really got his wishes granted, thanks to the Make-A-Wish Foundation! I know that is what we were all hoping and praying for.
We welcome Alex, Sheila and Doug back to Austin with grateful hearts,
Charisse
Sunday, August 1, 2004 2:20 PM CDT To Alex's friends and family,
I just got off the phone (Sunday at 12:30 pm) with Sheila and she told me that Alex was released from the San Diego Children's Hospital Friday, July 30th in the late afternoon. That evening they rode a large steam paddleboat across Mission Bay to a sister hotel and watched the Sea World fireworks from the boat. Yesterday, they drove to La Jolla to see the sea lions which have taken over a children's beach and then Alex played in the sand and water at a nearby beach. She said both activities were enjoyable.
They were on their way today to Children's Hospital for Alex to receive his IV Vancomycin antibiotic. After this 2 hour procedure this morning they were hoping to go to the Cabrillo National Monument at Point Loma, San Diego and look in the beautiful tidepools there. After that they were planning on walking along the boardwalk at San Diego's Embarcadero.
Since the Make-A-Wish Foundation office closed Friday afternoon for the weekend, no plans were able to be made for Sea World or Legoland until Monday. Alex will be needing to return to Children's Hospital tomorrow morning for a clinic appointment to check his blood levels. This may require him getting blood and platelets and therefore, they may be at clinic for quite a while tomorrow. Thankfully, Make-A-Wish is used to accommodating spur of the moment changes and delays for their kids being granted a wish. Sheila said that Make-A-Wish has done a wonderful job of "working with a moving target"!
Thank you all for keeping Alex, Sheila and Doug in your thoughts and prayers,
Charisse Hughen
Saturday, July 31, 2004 10:50 AM CDT To Alex's family and friends,
As of yesterday, Friday, July 30th, Alex was still in the San Diego Children's Hospital but had been moved out of PICU and onto the oncology floor as of 7:00 pm Thursday. Doug said that the doctors were working to get Alex out of the hospital but Doug did not know when that would happen. They were hoping that with a release from Children's Hospital, they would just need to come back to that hospital each morning for a 2 hour period for Alex to receive an IV of Vancomycin antibiotic and then be on their way enjoying San Diego, Legoland, or Sea World.
Yesterday afternoon, there was a fire within the hospital somewhere and Doug said that they were in a lock-down situation where no one could go anywhere. He joked that after their plane fiasco and now a fire event, they wondered if their next surprise would be an earthquake!
Make A Wish was trying to arrange an extended stay for the Dierkings since Alex's wishes have not yet been fulfilled. Sheila or Doug were to call me when they get out of the hospital and they will hopefully know soon what Make A Wish has been able to work out for them. My hope for them is that the rest of their trip is uneventful both from a logistics and health perspective and that they ALL can have lots of FUN.
Doug did report that Alex received a birthday cake and a gift on Thursday, July 29th from the hospital staff!
With best regards,
Charisse
Thursday, July 29, 2004 7:53 PM CDT Dear family and friends of Alex,
I just received a phone call (around 1:00 today) from Sheila saying that Alex is back in the hospital in San Diego. They went to the ER at San Diego Children's Hospital at 8:30 pm last night and now he is in the PICU there. Alex is in the hospital for two reasons: he developed a fever of 101.4 degrees late yesterday (and then after he got to the hospital it went up to 103 degrees) and they also were told that a blood culture came back late Tuesday from Austin Children's Hospital which was positive (positive for what Sheila did not know ). So they have him on antibiotics right now and a heart monitor. What a disappointing way to spend Alex's 8th birthday. Sheila said he is being a trooper about it. Today was the day they were supposed to be going to Sea World and had gotten the backstage passes from Dennis Quaid. Sheila has been in touch with the Make a Wish Foundation and they know everything that is going on. We are hoping they can just change days but it is unknown when Alex would be out of the hospital and ready to enjoy his wishes.
Sheila also told me that they had a terrible flying experience to San Diego yesterday. The flight was to be direct from Austin to San Diego but for still an unknown reason the plane stopped in Phoenix, everyone had to get off and then find their own transportation to San Diego! Someone eventually helped the Dierkings get a flight that left two hours later for San Diego. They eventually arrived at 2:30 pm into San Diego after leaving Austin at 6:15 am! Sheila has renamed the airlines America West to "America Worst"!
The hotel they checked into is the Catamaran Hotel overlooking Mission Bay and she said it is beautiful. Alex did get to walk on the beach yesterday and played in the hotel arcade for a couple of hours before his fever spiked. Thank God Alex was able to do something fun.
Sheila said cell phones cannot be used in the hospital room. She will call me later with any changes. She was able to speak with Dr. Krance in Houston and Dr. Wells from Austin happens to be vacationing in San Diego at this time so Dr. Krance was going to call him there.
I know we all have been thinking of Alex today on his 8th birthday. I hope he finds many things to make him smile today and many more smiles and laughter in the days ahead in San Diego.
Love to you all,
Charisse Hughen
P.S. Thank you so much to Clare Dyer for doing such a great job on the email updates while I was in D.C. for my 30th high school reunion.
Thursday, July 29, 2004 7:52 PM CDT Wednesday, July 28, 2004
Dear Friends -
I am very happy to report that Alex, Sheila, and Doug were able to go to San Diego this morning for Alex's Make-a-Wish to see LEGOLAND and SEA WORLD. Dennis Quaid contacted them again on Monday and used his "connections" to get them a special back-stage pass to Sea World. What a nice gift for them for Alex's birthday tomorrow! They left early this morning (leaving home at 4:00 a.m.) and were to arrive in San Diego around 8:30 a.m. Pacific Time. They will return to Austin on Saturday evening. Make-a-Wish takes care of all the expenses so that the family can just relax and enjoy themselves. I know we all hope they have a completely wonderful adventure in sunny California.
Alex had his two exams this week and received blood and platelets yesterday, as well as antibiotics. Monday night he had a fever for a little while, but the doctor advised taking Tylenol, and the fever had subsided by his scheduled exam Tuesday. They were sent packing with two antibiotics and a case of other medicines and all the contact information they would need were Alex to start feeling bad in San Diego. He will go for another scheduled exam next Monday, when any options for further treatment will be decided.
Before they left, they had lots of visitors and Alex got to play with a number of his friends and cousins. I know he was excited to get to go, and that Sheila and Doug had been holding their breath hoping that nothing would prevent taking the trip this time.
I'm so glad they got this wish!
Take care, Clare Dyer
Thursday, July 29, 2004 7:51 PM CDT Sunday, July 25, 2004
Just a quick update to let everyone know the good news that Alex got to go home yesterday afternoon. Sheila and Doug are enjoying doing more normal things like having dinner at Doug's sister Debbie's house where Alex got to play with his cousins and having a few friends of Alex's drop by to play. A very nice call came from Dennis Quaid, who has kept up with Alex since he meant him last year at Austin's Children's Hospital during a fund-raiser for Any Baby Can. Doug said that Dennis talked to Alex for a little while, encouraging him and just chatting.
The current plan is to see the cardiologist on Monday and the oncologist on Tuesday and, if both sign off, to head for LEGOLAND Wednesday! I know we all are pulling for this trip for the three of them.
Another Alex joke: A panda walks into a bar made of bamboo. He orders a drink and then procedes to start eating the bar. The bartender tells him to stop. The panda shoots the bartender and walks out. Everyone says "what was that?" They look up "panda" in the dictionary and find that it is a large mammal that "Eats shoots and leaves."
Take care - Clare Dyer
Thursday, July 29, 2004 7:47 PM CDT Greetings to the family and friends of the Dierkings-
Charisse is on a short vacation and asked me to keep everyone up-to-date over the weekend.
Alex is continuing to amaze us with his ability to bounce back after last week. On Wednesday, he WALKED out of ICU carrying his pump, something the ICU doctors say rarely happens. He and his parents were in a room on the heart wing for two nights, and today were moved to Room 307 in the oncology (green) wing of the third floor of Austin Children's Hospital. The cardiologist continues to be very pleased with Alex's progress. His heart has recovered some from last week, and his lungs are clear. The infectious disease specialist could not find anything growing in the cultures from the bronchoscopy last week, so the doctors have reduced the antibiotics Alex is taking. If all continues to go well this weekend, Alex, Doug, and Sheila may get to go home, which is very exciting, and even possibly get their make-a-wish early next week, to go to Legoland in San Diego.
Alex is feeling good and is in good spirits. It was such a delight to see him telling jokes to the nurse and giggling and laughing yesterday. He has had some visitors and can have more again now, including friends his age. Sheila asked that people please call first (773-0828) and she can let you know a good time to visit.
His grandmother Marie and Norm were here from San Antonio Monday through Friday, and yesterday his grandfather Al (Sheila's father) and his uncle Alan came to visit from San Antonio. Alan brought Alex a very special deck of Yugio cards, including five cards of Exodia, the Forbidden One, which makes Alex Unbeatable! Last night, Alex played poker and then Yugio with his family friend Melissa Goodwin. Today his aunt Debbie and cousins, the Dierkings' friend Marina, who was so helpful and supportive when Sheila and Doug first went to Russia seven and half years ago to get Alex, and Melissa's three children all came to visit. I could hear lots of excited happy children in the background when I spoke to Sheila just now.
Next Thursday, the 29th, is Alex's 8th birthday. Any cards should still go to his home address, since we all hope he will be home, if not off to even greater adventures in San Diego. Their home address is:
9101 Caira Cove, Austin, TX 78750
I know we all delighted to know Alex is doing so well. I wish the Dierkings and all of you a wonderful weekend! Clare Dyer
Wednesday, July 21, 2004 9:40 PM CDT
To Alex's friends and family,
Yes, there is a reason to celebrate today! I spoke with Doug, Sheila, and ALEX (YES, ALEX!) last night at about 9:00 pm! The wonderfully joyous news from yesterday is that Alex felt so good that he was talkative, feeling playful and telling jokes to the hospital staff! Doug said, "Today, Alex is acting like his old self again!" He had all tubes removed by the afternoon...no more tube to his chest to drain fluids, no catheter, no monitoring equipment, no breathing treatments and no feeding tube! Alex had been told that the caveat to removing the feeding tube was that he would have to be able to take his medicines orally and eat and drink well too.
Well, Alex enjoyed a grilled cheese sandwich and a chocolate milk shake that he requested his dad go and get from Top Notch restaurant for lunch, some cereal, and a pizza from Schlotzsky's Deli for dinner! Also, Sheila was working with Alex to get the oral meds down when I spoke with them.
Alex felt well enough yesterday and got the OK from the doctors to be taken around the hospital by Doug in a wheelchair without a mask! He was able to get up and go to the bathroom on his own and apparently was even doing the touchdown victory dance beside his bed!!! And amazingly, the echocardiograms have even been showing a steady decrease in the size of Alex's enlarged heart! Sheila and Doug said that if all continues to go well, he was to be moved up to the green oncology floor today!
There was great levity in Alex's ICU room as I spoke with Sheila and Doug! To hear Doug and Sheila laughing with such joy was heartwarming. And to hear Alex's voice with all the personality, spirit and quick sense of humor that is "so Alex" felt like a miraculous gift from God to Alex and his family. Sheila said to me, "We are grateful for the little increments going in the right direction." Yesterday seemed like a monumental one for Alex.
Regarding visitors, Sheila felt that one or two friends a day could start visiting but still no children yet. Please call her first to make sure that it will be a good time for them (cell #773-0828) and so that she can tell you whether they have moved up to the green oncology floor or whether they are still in PICU at Austin Children's Hospital.
As I end this email, I want to give each of you more to smile about...here are the jokes that Alex was sharing with the doctors and the nurses...
Q. Why did the cowboy get a weiner dog?
A. Someone told him to get "along little doggie"!
Q. Why did the cookie go to the hospital?
A. He felt a little crummy.
Q. Why wouldn't the skeleton cross the road?
A. He had no guts!
"Two men walk into a bar. The third one ducks." (This one may require an explanation from Alex, Sheila or Doug!)
Rejoicefully,
Charisse Hughen
Saturday, July 17, 2004 10:13 PM CDT Dear friends and family of Alex,
At 5:00 pm today, I spoke with Melissa Goodwin, a dear family friend of the Dierkings, who had spent much of the day at Austin Children's Hospital, although she never saw Alex. She reports that Alex is currently in stable condition. Yesterday one lung collapsed and he is currently still on a breathing treatment for that. Alex's breathing and oxygen levels are holding their own at this time. He even stood up for a little bit today. He has not been sedated, has talked some, but seems to get irritated very easily which is highly understandable feeling as sick as he does.
Alex has not been able to hold any food, liquids or oral medicine down so Sheila and Doug had just made the decision to put a feeding tube through his nose and into his stomach so that foods, liquids and medicines could be administered easily through that. At the time of this call, the doctors were then needing to heavily sedate Alex so that the feeding tube could be put in.
Family has been gathered there all day, including Danny, MaryAnn and their daughter, Leah (Doug's brother and family from Houston). Debbie Fox, Doug's sister from Austin, has kept vigil at night, allowing Doug and Sheila to alternate sleeping for 4 hours in their other hospital room upstairs on the oncology floor. Walt (Doug's brother-in-law from Austin) will be performing that role tonight to give Debbie a break. Clare Dyer, Sheila's long-time co-worker, has also stayed in the room overnight during the past week to allow Sheila and Doug to sleep some or take a break. Only 3 people are allowed in Alex's ICU room at a time and family members are still the only ones entering the room at this critical time. No calls are being allowed into the Dierkings now except from family.
My prayer today seems to be this...Dear God, I ask that you continue to give Doug and Sheila just what they need in order to sustain them through each minute, hour, and day. Please help them feel supported and at peace through the life and death decisions that they are having to make for their son, Alex. And may Alex feel your loving presence always. Amen.
Prayerfully,
Charisse Hughen
Saturday, July 17, 2004 1:04 PM CDT Dear family and friends of Alex,
I spoke with Sheila last night (Thursday) around 6:00 pm and she said that Alex's ventilator has now been removed and he is breathing on his own but that his breathing is labored. They cut his morphine way down so that he is not sedated but he is receiving an anti-anxiety medication. Sheila said that Alex is talking a little bit, asking for water to drink, for the TV to be turned on, and to play a video game. Apparently right after asking to play a video game, he fell asleep so he does go in and out of sleep. Alex did tell Sheila and Doug that he dreamed he was at home.
At 4:30 pm yesterday, visitors were prohibited. Alex was (and may still be) needing quiet and rest so that his heart can efficiently start to do its job again. Sheila reported that Alex's throat is pretty sore because of the ventilator removal, he has a low grade fever, and the last chest X-ray showed no more fluid in his chest. The doctors told Sheila and Doug that the leukemia levels have not gone up but Sheila did not know the current percentage of blast.
All are pleased that Alex is showing some signs of improvement. What a trooper he is. My prayer is for Alex to be as comfortable as possible and for the family to experience peace,
Charisse
Thursday, July 15, 2004 3:15 PM CDT To Alex's friends and family,
I visited Alex yesterday at Austin Children's Hospital between 5:00-6:30 pm and he was very heavily sedated. He had been through a lot yesterday starting with the chest X-ray and the draining of fluids from the chest cavity as well as the lungs. Surrounding his bed are lots of IV bags, monitoring equipment and a continual air/fluid suctioning sound from the machine that has a tube that is inserted into Alex's side to pull out fluids. Alex never opened his eyes while I was there but he did raise his eyebrow when I whispered to him that I was leaving yet another one of "Miss Charisse's lipstick kisses" on his forehead. His ventilator tubing is being dutifully held up by his stuffed brown teddy bear, a lifetime friend who remains true as he lays on Alex's chest. Alex looks very little and frail in his big hospital bed but obviously he has an inner strength that has taken him far along this journey.
Sheila said that they plan on starting to wean Alex from the ventilator to see how his heart will function on its own and that the doctors are working to get Alex out of ICU and back onto the pediatric cancer floor. Dr. Wells and Dr. Krance are talking with each other and Sheila had planned on speaking directly with Dr. Krance from Houston last night. Sheila did tell me that the doctors are discussing different chemo treatments for Alex at this point so my last email stating that there will be no further chemo treatments for Alex was an error.
Doug and Sheila are holding up remarkably well. I am amazed at their strength to handle so much stress and to keep on top of every detail of Alex's care. Yesterday when I was there, they had family and good friends by their side to give much appreciated assistance and support, although taking turns in Alex's room is needed in order for only 3 people to be in there at a time. I am waiting to hear from them this morning to see how their night was and how some test results have turned out.
Please pray for continued strength for Sheila, Doug and Alex,
Charisse Hughen
Wednesday, July 14, 2004 12:48 AM CDT Dear Alex's friends and family,
Doug just called me from Austin Children's Hospital around 11:00 am and he said that Alex's condition was stabilized through the night, that he is still in Pediatric ICU, and that he continues to be heavily sedated. Alex goes in and out of sleep, has opened his eyes for a moment or two, moves his feet a bit but remains restrained since he is connected to so many tubes. They have been draining fluids from his chest cavity and inserting tubes in his lungs to help the lungs stay clear. They continue to check his blood gases and took another chest X-Ray early this morning. No results had been given to Doug yet and Doug says that Alex's other organs are still doing OK. Doug did say that they were currently trying to wean Alex off of the ventilator.
Sheila and Doug have been extremely pleased with the team of doctors, the nurses and all staff and their attentiveness to Alex. Dr. Wells told them that Alex's heart malfunctioning has been a long-term thing caused by the leukemia or the chemo since both of those weaken the heart. Doug did say that no more chemo will be given to Alex.
I am going now to the hospital to see Alex, Sheila and Doug and I will share more information with you after my visit.
God's peace be with you,
Charisse Hughen
Wednesday, July 14, 2004 12:42 AM CDT Dear all of Alex's friends and family,
It is with a very sad heart that I share this news with you from tonight. Alex experienced cardiac arrest this evening at 7:15 pm while he was in Austin Children's Hospital and as of 10:30 pm tonight when I spoke with Doug, Alex is currently in the Pediatric ICU at Austin Children's Hospital. After Alex's heart stopped at 7:15 pm, they had to intubate him in order to get the heart going again. He is currently unconscious and being supported by a ventilator to try to get the heart functioning on its own. Doug says that Alex is heavily sedated and that tubes are everywhere. Dr. Wells had just been with them and felt that Alex has been stabilized. I asked if any organs had stopped functioning and Doug said no. For those of you who are getting this news for the first time, I share in your tears of extreme sadness, shock, and worry for Alex, Sheila, and Doug.
I asked Doug who was there at the hospital with them and he said all of Doug's sisters, Sheila's mom, Marie and Norm from San Antonio, Melissa and Grant Goodwin from south Austin, and Clare Dyer, Sheila's long time college friend, who lives in Austin. I was glad to know that family and close friends had gathered there immediately. Doug was at UT teaching tonight when this occurred but I believe that Sheila had at least one of Doug's sisters there with her. And I regret that I was out this evening and did not receive the news myself until 10:30 pm or I would have sent this out
sooner.
I have asked Doug to please call me anytime during the night with any further updates so I will proceed with this email since I know I will not sleep at all tonight.
When Alex was taken into Austin Children's Hospital yesterday to receive blood and platelets, they also were concerned about a cough that Sheila said Alex had at home during the nights of Saturday, July 10th and Sunday, July 11th. Along with that cough were grunting sounds like Alex was trying to clear his air passages. So a chest X-Ray was taken yesterday, Monday, July 12th and he was started on a Pentamidine breathing treatment and IV injection in order to ward off pneumonia. The true diagnosis of what was causing the coughing and the fluid that the X-Ray showed around the heart was not to be known until they could do an echocardiogram today. When I spoke with Sheila at around 12:00 noon today, they were still waiting for the echocardiogram to be performed and said she would call me with the results. The doctor had told them that possible causes could be heart failure which could be caused by the leukemia or the chemo or that it could be viral pneumonia or something completely different.
We all can be comforted to know that Alex had a really wonderful time with his 10-year old half-brother, Dennis, this past week. Dennis, his mother, Niki, and father, Brent, flew into Houston on Tuesday, July 6th, rented a car and drove up to Austin. They stayed with Sheila and Doug and they all had a really wonderful time together. Alex felt well enough so the families experienced a lot of activities together...Bob Bullock Museum in Austin, Alamo in San Antonio, Fiesta Texas in San Antonio(where Alex, and sometimes Dennis, rode the Boomerang and Road Runner rollercoaster over and over and over again!), took a ride in a cabin boat on Lake Travis that belonged to the Dierking's neighbors, Keith and Sheila Powell, and shopped at the James
Avery store where Alex and Dennis each bought identical cross necklaces to wear. Doug said that Alex and Dennis bonded quickly while they played, slept, woke up together for 4 days. Christopher (my 8 year old son) and I went on Wednesday to the Dierking's house to meet Dennis and family and everyone seemed to be family already. I was able to take some good photos of Alex and Dennis as well as both families and I promise to get those up on the website soon (www.caringbridge.org/tx/alexdierking). Doug did say that Alex got very sad and cried on Friday night knowing that the next morning his "big brother" would be returning home to Canada.
You may remember Sheila and Doug had planned on starting the full-blown chemo for Alex yesterday, July 12th, but the Make A Wish Foundation approached Alex last week and asked him what his wish might be and he said to go to San Diego to walk on the beach and to visit Legoland (about an hour outside of San Diego). So with the doctors' approval to postpone the full-blown chemo one week, Make A Wish secured all arrangements for Alex, Sheila and Doug to make this trip July 14-17. Yesterday, Monday, July 12th, Dr. Wells thought they still might be able to go as planned and today, Tuesday, July 13, Sheila said that Dr. Wells pushed it out to maybe Friday. Now, very suddenly, everything has changed.
Dear God, please keep holding Alex tight in your arms tonight, for all of us. Amen.
Sunday, July 11, 2004 8:20 PM CDT Dear family and friends of Alex,
As of 5:00 pm yesterday, Alex came home from Austin Children's Hospital and they are all very happy to be home. On Thursday, while Alex was in the hospital, he received a catscan to look closer at his swollen jaw to see if maybe the leukemia had gone into his lymph nodes or bones. The good news is that the results showed no bone deterioration. Alex was sent home with an IV medicine that has to be administered through his central line every 8 hours for 10 days. It is another form of antibiotic. The process of administering it takes 1 1/2 hours.
Alex will need to go back to Austin Children's Hospital next Wednesday, July 7th in the morning for counts and maybe to receive more blood. The last count showed a 50% blast of leukemia in Alex's blood. Sheila said that Alex is looking very pale but that he continues to say he feels ok. I know he has got to feel better now that his mouth sores are gone.
They are all looking forward to Dennis' family coming July 6-10 and the plans are feor the family to stay in the Dierking's home. Dr. Wells has said that Alex can do whatever he feels like doing as far as activities and traveling with Dennis and his mother and father.
Sheila said that she and Doug have made the decision to go with the full-blown chemo treatment for Alex starting in about 10 days. As you may recall from my previous email, this has a 10% chance of getting him into full remission then and only then would they perform another bone marrow transplant. They are all counting on that 10% chance. We all will pray very hard for that as well.
God's Blessings to each of you on this 4th of July weekend,
Charisse Hughen
Wednesday, June 30, 2004 9:27 PM CDT Dear family and friends of Alex,
Sheila was called by Dr. Lockhart from Austin Children's Hospital last night and told that Alex's culture that had been taken earlier this week was positive and that she saw something growing which could be a bacteria or infection. Dr. Lockhart told Sheila to admit him right away so they could give him an antibiotic. Alex also had a low grade fever of 100.3, a swollen spot on his jaw, and some bad mouth and gum sores. So Sheila took Alex in last night after 9:00 pm and he was admitted straight to the ward, instead of having to go through the Emergency Room like they have had to do in Houston. He is receiving an antibiotic through his central line every 6 hours. They have also drawn more blood tests to see again what might be growing. Sheila said that Alex feels good and that they do not know when he will be able to come home. Both Sheila and Doug were with him in the hospital today.
As you recall from my June 19th email, Sheila and Doug were told by Dr. Krance that there were a couple of treatment choices that they could consider for Alex. Doug and Sheila have researched several and have asked Dr. Krance and Dr. Wells to give them their opinions on them. Therefore, as of today, no decision has been made yet about further treatments. Alex has just been continuing the oral chemo that he started on June 18th. Also, Doug and Sheila were hoping to wait until after the visit from Dennis, Alex's half brother, to start him on anything new or different. The plan is still to have Dennis' family here in Austin from July 6-10 and the Dierking's hope was to take Dennis' family to San Antonio to see the Alamo, the Riverwalk, the Mercado shopping area, etc.
Thank God Alex has felt well enough since his return to Austin June 18th to do some fun things with friends and family. Some of the activities he has really enjoyed include going to Dave and Busters, seeing several movies, playing with his cousins and friends, and going to Fiesta Texas in San Antonio! Yes, Alex, Sheila and Doug went with their dear friends, the Goodwins, for a full 8 1/2 hour day of rides and shows! It rained a lot that day but that meant fewer crowds. Alex's favorite ride was The Boomerang which apparently moves in a figure 8 motion while turning you upside down a lot! His favorite show was the Chinese Acrobats, which he loved. I am sure you are thinking the same thing I am...how wonderful that Alex felt well enough to do fun kids' stuff like riding the rides at an amusement park! For that we remain grateful.
Let's all hope and pray that Alex has many more fun days ahead of him. And please continue to keep Sheila and Doug close to your hearts,
Charisse Hughen
P.S. For those of you who might have sent me emails in the past 6-7 days, I apologize for not responding back. I have not even had the chance to look at them but hope to soon.
Thursday, June 24, 2004 2:44 PM CDT To the dear ones who love Alex,
I saw Sheila and Alex yesterday (Tuesday, June 22) for the first time since visiting them in Houston 10 days ago. Alex came over and played with Christopher, my 8 year old son, yesterday. They played GameCube, pretended to fight with swords, and spied on Sheila and me (one of their favorite things to do). After about 2 hours, Alex got tired and wanted to go home. His color was a bit gray and his energy limited. He just did not look like he felt well. He had been at Austin Children's Hospital for 3 hours that morning doing bloodwork and Sheila and Doug spoke with Dr. Wells then too. While there Alex's temperature went up to 100.7 and so they started him on an antiobiotic in hopes of bringing down the fever and fighting off any bacterial infection that might be present. I just spoke with Sheila this morning and she said that, fortunately, the fever has stayed down and they did not have to take him back to the hospital last night.
Since the Dierkings returned to Austin last Friday, these are some of the ways their time has been spent: Friday night, they enjoyed family dinner and time with Doug's sister, Debbie, and her family. Saturday, they went to their dear friends', the Goodwin's, home in south Austin, where Alex enjoyed "driving" a grandmother's very old pink cadillac and watching fireworks! On Sunday, Father's Day meal was at Debbie Fox's again and then Alex, Doug and Sheila went to go see the movie, "Around the World in 80 Days", which Alex loved (anything with Jackie Chan is high on his list)! Monday, they went to Houston for bloodwork and to speak with Dr. Krance again, visited with the Casagrande family and went to see the movie, "Garfield". On Tuesday, Doug spent some of the day at UT and was teaching until 10:00 pm.
Also, some news that the Dierkings are very pleased about is that Dennis, Alex's half brother who lives in Canada, and his mother and father will be coming to Austin to visit Alex July 6-10. Dennis' family has worked diligently to get him a visa to enter the U.S. and have had to take out a loan to make the trip. They may be needing a ride to and from Houston if they cannot fly into Austin and they may be staying in a hotel near the Dierking's home.
So many of you have called or emailed asking how can you be of help to the Dierkings at this time. Here are some suggestions of what is helpful and what is not helpful:
1. If you have a child who is one of Alex's playmates, plan something fun for your child and Alex to do together. This cannot include swimming (because he still has and will continue to have his central line), nor roller blading, skateboarding, biking (because of concern of falling and internal bleeding), nor spending time in the sun, nor going to the zoo or the circus (because of possible exposure to animal feces). Alex CAN go to movies, theatres, museums. He CAN go to video arcade types of places, like Chuck E. Cheese, Peter Piper Pizza, Gattiland, Dave and Busters. He CAN play Putt-Putt Golf in the evening when the sun is low. He could possibly go on a boat in the lake if the conditions are right but mom and dad have to give OK, obviously. Also, as long as Alex is feeling well, he does seem to have an affinity for talking on the telephone!
2. Preparation and delivery of meals is NOT needed at this time. Sheila is a very good cook and I know she is enjoying making meals for her son and family now, especially being back in her own home. There will be a time when this will be a needed gesture of love to the family and at that time, meals will be coordinated once again through Kim Camardo, who did such a good job of orchestrating this last summer.
3. Be patient with responses back from the Dierkings to your phone calls. Sheila said that on some days, there can be 20 or more phone calls on their answering machine. They do appreciate words of love and support and specific offers to play with Alex. Please be careful with your words left on the answering machine because Alex often hears them. And do not be offended if you do not hear back from them at all. Their days are so unpredictable and their energies have to be focused in very specific ways now.
4. You can make financial contributions to the Dierking family through the Any Baby Can/Alex Dierking Fund. Many of you have wanted to help with the expenses of Dennis' trip to see Alex and the Dierkings will use monies in this account to help Dennis' family as well as Sheila and Doug can use these monies for any needs they have. For the address to send checks directly to Any Baby Can or to make donations on-line with your charge card, go to Alex's website at www.caringbridge.org/tx/alexdierking and look at the very
first paragraph on his webpage.
5. You are encouraged to donate blood and platelets, which Alex will be continuing to need as well as all other cancer patients. Locally, you would contact the Central Texas Regional Blood Center on North Lamar Bvld. at (512) 206-1266. The Dierkings no longer need the donation coupons that are offered to you after you give blood - please just put them in the basket at the front counter so they are available to others who do not have the insurance to cover the expense of receiving blood and platelets.
6. Send cards and letters to Alex and to Sheila and Doug letting them know you are thinking of them. As another reminder, they cannot have fresh flowers nor plants in their home. Also, if you are local, offer to go for a walk with Sheila or Doug. It is very difficult for them to get away to get any kind of exercise, which certainly helps all of us with stress.
7. Sheila has a real concern about the little boys in the bone marrow unit at Texas Children's Hospital in Houston. When they are needing to wear the hepafilter masks (kind of like a Darth Vadar mask), like Alex has had to wear, the boys are forced to wear masks that have bright PINK hepafilter covers over the 2 filters! Alex (as well as all the boys) was so upset by this that a kind soul made yellow covers for Alex. Sheila would love it if there are any of you, who are local and who have a sewing machine, would be
willing to do some simple sewing to make maybe camouflage or green or blue or yellow jersey filter covers to send to those boys in Houston. If so, please contact me and I will get you a sample so you can see exactly what we are talking about.
8. Lastly, but should remain first, pray.
There is so much kindness pouring out to this family. Thank you to each of you for offering to give so much amidst your own grief,
Charisse Hughen
Sunday, June 20, 2004 11:28 AM CDT To the dear friends and family of Alex,
Doug and Sheila spoke with Dr. Krance today (Friday, June 18th) at their scheduled morning meeting and in private, without Alex present. Alex had just had his blood drawn and the initial results showed the same 85 percent blast of leukemia. The subsequent news that Dr. Krance had to report was what Sheila and Doug dreaded ever hearing about their son. Dr. Krance explained that these AML cells had come back very aggressively and that the T-cell infusion performed 3 weeks ago had just not been successful at overcoming these insidious leukemia cells. He very candidly said that there is really not much else that can be done. He could not tell them how long Alex has, months or weeks, because at any point Alex could get a bacterial or viral infection which could change Alex's current status.
Dr. Krance stated that there were only a few treatments that Doug and Sheila could consider, but which, unfortunately, have very low success rates and can be high risk. One is to do the chemotherapy and radiation treatments again but Alex would have to be in full remission in order to perform another bone marrow transplant. The chance of Alex surviving the chemotherapy alone would be maybe 10
Thursday, June 17, 2004 10:31 PM CDT Dear Alex's family and friends,
I spoke with Sheila this evening and the news that Dr. Krance gave them today was not good. The blast of leukemia has now increased to 85%. Alex's white blood cell count has gone way up and the leukemia cells in his body are taking over. The bone marrow aspiration which was planned for tomorrow will not be done. There is no reason to do it now with these results showing what they show. Sheila said that they have put Alex on an oral chemotherapy.
Dr. Krance has asked the Dierkings to meet with him tomorrow at 8:30 am at the hospital. Sheila assumes that Dr. Krance will tell them what to expect and not to expect next. Sheila felt that Alex would be there as a part of that conversation.
Leading up to the terrible news of today, on Sunday, June 13th, Alex was admitted into the emergency room of Texas Children's Hospital with a fever of 100.6, some blood was found in his urine on Monday, June 14th but has subsequently gone away, and he needed to receive platelets on Tuesday, June 15th.
When my 8 year old son, Christopher, and I went to Houston this past Saturday and Sunday, he and Alex enjoyed a very special 24 hours together. Alex so appreciated having a playmate to be with. Alex did not have much energy and was experiencing severe pains in his neck so they played video games on the TV, created games with toys and cards on the floor and even pretended they were spys in our hotel rooms. On Saturday night, our friends in Houston, the Casagrandes, met us at a local park with a home-cooked steak dinner. We all gathered outside and Alex hit a few balls with his bat for a short game of baseball. Alex and Christopher ended up sleeping together in the same roll-out couch in Sheila and Doug's room at The Residence Inn, which was so sweet to see. Lisa Cowan, the Dierkings next-door neighbor and dear friend who set up and maintains Alex's website (www.caringbridge.org/tx/alexdierking), has entered in new photos of Alex that I took while in Houston this weekend. You will want to see these special shots of Alex with his mom and dad as well as with his buddy, Christopher.
The Dierkings are still in The Residence Inn, and having now stayed there, I can report first-hand that these are very nice accomodations. The Inn provides a well-appointed room with a fully stocked kitchen, cleaned everyday. It's safe and the management provides exemplary customer service (even demonstrating a special fondness for the Dierkings). Alex seems to like it there. It is also very close to Texas Children's Hospital.
I cannot imagine the nightmare that the Dierkings' have experienced in this year-long-plus journey and I expressed to Sheila that it seems like tonight will be especially difficult with this discouraging news and with the unknown of what Dr. Krance will tell them tomorrow. Sheila and Doug ask for your continued prayers. Christopher's bedtime prayer after returning home from Houston was, "Dear God...I hope Alex feels better and in hard times, help him be brave."
We share the heaviness you all feel in your hearts,
Charisse Hughen
Saturday, June 12, 2004 2:30 PM CDT Dear family and friends of Alex,
My 8 year old son, Christopher, and I are heading off to Houston this morning to spend the weekend with Alex, Sheila and Doug. We will be staying in a hotel room beside theirs at The Residence Inn so that Alex and Christopher can play together to their hearts' content. They are both really excited to see each other!
I spoke with Sheila last night and she said that Alex's white blood cell counts were pretty low yesterday when they took him into the hospital for his scheduled blood work so they gave Alex a blood transfusion, which was about a 2 hour process. The previous day, he had tired out easily at the
park and had a headache so this transfusion has made him feel much better. Dr. Krance said that there is still about a 40% blast of leukemia cells present but tells Sheila and Doug that sometimes it can take 5 weeks before the T-cell infusion takes full effect. Five weeks out from the T-cell infusion procedure would be July 2nd, however, the bone marrow aspiration is still currently scheduled for next Friday, June 18th.
Sheila's mother will be flying in to be with Sheila and Alex this Monday through Thursday while Doug is in Austin again teaching his classes at UT. Doug expresses that it is really hard being away from Alex overnight at this time. Please keep Doug in your prayers that he stays safe as he travels away from his family and of course, Sheila, that she continues to find strength for her continual vigilance.
Regards,
Charisse Hughen
Thursday, June 3, 2004 9:51 PM CDT Dear family and friends of Alex,
Sheila called yesterday afternoon to say that Alex had been released from Texas Children's Hospital and that they had moved into The Residence Inn, on Main Street, a couple of miles from the hospital in Houston. Should you need to contact them at The Residence Inn, their phone number is (713) 351-1126 (Suite 412). This is the hotel where they have stayed before. Their room has a queen size bed, a pullout couch, a full kitchen, and cable TV (all of which they greatly appreciate). There is a grocery store very conveniently right next door and the hotel environment allows them to go outside and take walks with Alex.
Dr. Krance says they could plan on maybe a couple of weeks there, unless Alex develops a fever, which would have them returning to Texas Children's Hospital immediately. Before they moved out of the hospital, Alex was diagnosed with a bacterial infection which they are currently treating with an oral antibiotic and an oral antifungal. The oral medications have allowed Alex to be free from being hooked up to a central line while out of the hospital! YEAH!
As of yesterday, there were no new reports on Alex's counts, but Alex will have another blood test done in the hospital tomorrow morning, Friday, June 4th.
This week, Doug returned to Austin on Tuesday and Thursday to teach his classes at UT, as he plans on doing each week. Therefore, the best place now for mail to be sent to them is their home in Austin. It is just too unpredictable for them to receive any mail at the hospital or The Residence Inn. And remember, they still cannot have any fresh flowers or plants around Alex. Please send cards, letters and packages to:
Alex, Sheila and Doug Dierking
9101 Caira Cove
Austin, TX 78750
And don't forget about sending an email to Alex via his website at www.caringbridge.org/tx/alexdierking.
Lastly, Dr. Krance says that Alex can now have children around to play with him! However, the caveat still remains that children must have no signs of illness. Let Sheila know if you are interested in bringing any of Alex's friends to Houston for a visit.
Positive thoughts for healing are being sent your way, Alex! We love you!
Charisse Hughen
P.S. Thank you to Doug's brother and sister-in-law in Houston (Danny and MaryAnn) who once again have loaned the Dierkings their extra car so that when Doug is in Austin, Sheila has transportation.
Tuesday, June 1, 2004 8:51 AM CDT Dear friends and family of Alex,
Sheila called me today to tell me that Dr. Krance had given her some news regarding Alex's white blood cell counts. Apparently, a preliminary look showed them to be low but that he did not want to alarm them too much because this is still early and they have the 3 weeks to get more results. He did say that with Alex feeling good now that they would probably be able to move out of the hospital for awhile and into a nearby hotel on Wednesday, June 2nd. I will let you all know when and where they relocate if they are able to do that.
Thank you all for letting the Dierkings feel lifted up by your love in so many ways,
Charisse Hughen
Saturday, May 29, 2004 8:33 PM CDT To Alex's friends and family,
I spoke to Sheila yesterday and Alex's T-cell infusion proceeded as planned around 9:00 am, Friday, May 28th. It was a procedure that was very similar to his bone marrow transplant performed last September and took a couple of hours as well. Alex slept through most of it, which was a good thing, although the procedure is not a painful one. They used the stem cells from Alex's donor, which have been kept frozen since September, introducing them into Alex's body through his central line. Apparently, the preservative used has quite a strong odor and Sheila says it smells like a can of opened creamed corn! Not only is the odor present when it is being infused into Alex's body, it is one that will stay with him for many days as it seeps through his pores. Sheila, Doug, and visitors say it is noticeable when
entering Alex's hospital room.
Alex was doing just fine last evening after this procedure and Sheila sounded in good spirits as well. Alex was able to talk on the phone yesterday with Dennis, his 10 year-old half brother, who was also blessed by being adopted from the Russian orphanage by a family in Canada. Alex and Dennis enjoy their chats!
Just to let you know how things went for Alex from Monday, May 24th through Thursday, May 27th: Chemo treatments were given to him every day until Thursday, when he had the day off. On Tuesday and Thursday, Alex received platelets to keep him from bruising and bleeding. The goal of his pre-infusion treatments was to lower Alex's white cell count as low as it could go. On Thursday, the white blood cell count was at .43 (normal range being 5.0 to 14.5). Obviously, now with Alex's immune system being so compromised, extreme care must be taken to not introduce any germs to Alex. The Dierkings and select visitors must do thorough hand washing, sometimes wear masks, and obviously, must not have any stage of illness.
Now is the "wait and see" period where the Dierkings wait for 3 weeks until a bone marrow aspiration is performed on June 18th telling them how successful this infusion was at getting rid of the leukemia. Our prayer is that Alex's body does just what it did last September and that the stem cells of his "Blood Sister" once again fight all of the leukemia cells present in Alex. Let's all envision this physiological transformation happening inside of Alex everyday.
Grace and Peace,
Charisse Hughen
Sunday, May 23, 2004 11:32 PM CDT Dear friends and family of Alex,
As of Saturday, May 22nd, Alex, Sheila and Doug have once again been admitted into Texas Children's Hospital in Houston, for an unknown length of time. They are back on the 8th floor which is exclusively for bone marrow transplant patients. I know they hoped they would never have to face seeing that floor again.
On the morning of Friday, May 21st, Alex had his second bone marrow aspiration of the week, this time performed by Dr. Krance in Houston, and these results showed an increased amount of leukemia blast in his blood (more than the 29% blast found 4 days previously). The Dierkings were then told to come back into Texas Children's Hospital early the morning of Saturday, May, 22nd to have a central line inserted into Alex's chest so that chemo could begin the following day. I understand that the incision for this central line is on the other side of Alex's chest from the previous one. Also on Saturday, an IV/IG was started to introduce fluids that would help "up" Alex's immune system. Sheila said that Alex had a rough evening last night.
This morning, his first dose of chemo was given through is central line, as well as Campath, which is given to deplete any B cells Alex has. The chemo given this time around is a milder form than the chemo given last summer but Alex did spike a 102.4 degree fever today after these treatments so Alex was then given some Demerol to help with these side effects. An antifungal and an antibiotic are being given to Alex now as well.
Alex will receive the chemo and Campath once a day for 5 days, then on Friday, May 28th, Dr. Krance will give Alex a T-cell infusion using the stem cells from Alex's original donor. These stem cells are the ones remaining after Alex's bone marrow transplant performed last September and they have been kept frozen for future needs for Alex such as this one. Then, 3 weeks later, on June 18th, another bone marrow aspiration will be done to see if the T-cell infusion is taking effect to lower the current level of leukemia blast in Alex's blood.
The Dierkings so appreciate Danny and Mary Ann (Doug's brother and sister-in-law who live in Houston) for inviting them into their home Thursday and Friday night and for continuing to provide them with meals in the hospital. Liz and Tom Casagrande (my dear friends) have once again opened up their hearts and kitchen to the Dierkings and were going to be bringing them dinner in the hospital tonight. Thank heaven you all are there in Houston to make it more bearable for Alex, Sheila and Doug.
This week, Doug will be coming back to Austin on Tuesday, May 25th to teach an MBA night class at UT. He will drive to Austin in the am, pick up some things at home, and return to Houston that night after teaching his class.
When I spoke to Alex at about 4:00 pm today, he said he felt "fine"! I told him I thought he was a real trooper. Sheila said that Alex, Sheila and Doug would love to receive phone calls, cards, letters, and emails and that information is below. They do ask that you DO NOT CALL BEFORE 9:30 am OR AFTER 9:00 pm. And please DO NOT SEND any flowers or plants because they are not allowed anywhere on the bone marrow transplant patient floor due to possible fungus. Many of you have inquired about how you can help by making a donation to the Dierkings' expenses. "Any Baby Can" still has an "Alex Dierking Fund" to receive contributions for Alex's family and that information is below too.
Send cards and letters to: (no plants or flowers)
Texas Children's Hospital
6621 Fannin Street (8th floor-Room #48)
Houston, TX 77030
To call: (only between 9:30 am and 9:00 pm)
Hospital Room # (832) 826-0848
Sheila's cell # (512) 773-0828
Alex's personal email: phillies1st@aol.com
Alex's website: www.caringbridge.org/tx/alexdierking (he can receive email here too)
To make a tax-deductible contribution by check directly to the Alex Dierking
Fund, send it to:
Any Baby Can - The Alex Dierking Fund
1121 E. 7th Street
Austin, TX 78702
You may also make an on-line tax-deductible donation with your credit card (Visa, Mastercharge, or American Express) by going to Alex's website (see above) and click on the PayPal box.
THANK YOU FOR ALL THE MANY WAYS YOU ARE SHOWING THE DIERKINGS THEY ARE NOT ALONE DURING THIS NIGHTMARE OF A JOURNEY,
Charisse Hughen
Saturday, May 22, 2004 11:00 PM CDT Dear friends and family of Alex,
Sheila and Doug received a phone call from Dr. Krance in Houston last night at 7:30 pm and he told them that he wants to do another bone marrow aspiration on Alex in Houston at Texas Children's Hospital on Friday, May 21st at 8:30 am. Dr. Krance told them that there are different forms of blast found in bone marrow and he wants to look at the current molecular structure of Alex's. So Sheila, Doug and Alex are packed and should be leaving Austin about 3:00 pm today and will be staying at Doug's brother's and sister-in-law's house (Doug and Mary Ann) in Houston tonight.
Sheila said that they have no idea how long they will be in Houston. She did not know if they would be sent back home to Austin tomorrow or if they will need to stay in Houston for an extended period of time. Sheila will call me tomorrow when they know more and I will pass the update on to you.
Many of you have already put Alex and his family back on your prayer lists and I encourage those of you who have not to please do so. This is a frightening, new journey the Dierkings are now on. They will need to feel our support in many ways.
May Alex, Sheila, Doug and all of their extended family find strength and hope at this time,
Charisse Hughen
Saturday, May 22, 2004 10:53 PM CDT Dear Alex's family and friends,
I just got off the phone with Sheila tonight (they are all back home) and the results they received today from the bone marrow aspiration were not good. Alex has had a relapse and is no longer in remission. After the procedure was done around 2:00 pm today at Austin Children's Hospital, they went to Dr. Wells' office to receive the results and he told them that the test shows that 29 f his bone marrow has leukemia cells present (called a "29 last"). Alex was there as well to hear the news and he understands that his leukemia is back and that he will need to start some form of treatment again.
Dr. Wells has talked today with Dr. Krance in Houston and the Dierkings have been told that they will need to go back to Houston (either late this week or early next week) for, hopefully, a limited stay to begin a procedure called T-cell Infusion. What they will do is to take some of the original donor's stem cells (which they still have some of in Houston) and give Alex multiple infusions of her stem cells because sometimes that brings it under control and fights the leukemia. Doug and Sheila will be speaking with Dr. Krance tomorrow to get more details from him. In addition, Dr. Krance will be contacting the Dierkings' health insurance right away to help get things moving along on that end.
Sheila and Doug are obviously in shock, as we all are. It is almost to the day (May 15th) a year ago that Alex was given the initial diagnosis of Acute Myeloid Leukemia. What a roller coaster ride this year has been for Alex, Sheila and Doug.
With a heavy heart for them and for all of you who love Alex so much,
Charisse Hughen
Saturday, May 22, 2004 10:50 PM CDT Dear family and friends of Alex,
I met with Sheila last night and she told me that Alex had his regular blood test done Friday, May 14th, and that it showed Alex's blood platelets to be very low, however, all the other counts were OK. To be sure that the test results were accurate, another blood test was given to Alex yesterday, Monday, May 17th, and once again, the blood platelets showed to be extremely low. So a bone marrow aspiration is scheduled for today at 1:30 pm at Austin Children's Hospital and will be performed by Dr. Wells.
Alex did test positive for CMV, which is a virus that has been reoccurring in Alex since his bone marrow transplant last September. This could be the reason for the drop in platelets but the result of this bone marrow aspiration performed today will be able to tell them why his count has dropped so low. There may be initial results received today but it could be days before they have the true results from the aspiration.
Sheila and Doug are asking for your prayers for Alex today. Alex seemed to be doing so well and there was no indication that would have led Sheila or Doug to think that anything had changed. So this has taken the Dierkings by surprise and they are concerned. Please hold them up in your thoughts and prayers.
Sheila will be calling me today after the bone marrow aspiration and hopefully with some preliminary results. I will then let you all know by email anything that I learn from her.
Blessings to you as you offer your support,
Charisse Hughen
Tuesday, February 17, 2004 8:32 PM CST Dear family and friends of Alex,
My apologies for not updating everyone on dear, sweet Alex Dierking, for 3 weeks. It seems that my family's schedule and health got a little out of control but now everything is better again! Amidst all this, we definately did not lose communication with the Dierkings. I talk with and see Sheila often and we had Alex come over to play with my 7 year old son, Christopher, on February 7th and they had so much fun! In fact, two other 2nd grade buddies dropped by and they all enjoyed playing basketball, soccer, badminton, and tennis on our sportcourt in the backyard! Sheila and I loved seeing the big smile on Alex's face as he ran around with the friends he has longed to play with for 8 months! And as an added bonus for Alex, he nor his friends had to wear face masks that day!
Austinites woke up on Valentine's Day to snow everywhere so Alex was able to go out and throw snowballs and make snowmen and play with the neighborhood kids in the snow all morning! What a memorable day for Alex, Sheila and Doug!
The Dierking's weekly schedule of clinic visits, work, and homebound schooling has remained fairly close to what I described in the January 27th email. Alex's results from clinic have been very good with normal blood counts. Sheila shared something with me that made me realize how very far Alex has come in 9 months since his diagnosis of AML...Alex now only takes 3 medicines a day (Folic Acid, Flonase and Zyrtec) along with a multi-vitamin, which all sound so wonderfully common to me! Isn't that remarkable?!
Alex has once again received his celebrity status because TV Channel 13 News in Houston interviewed him, Doug and Sheila at Texas Children's Hospital a couple of weeks ago and aired that interview on TV in Houston this past Friday, February 13th! The station was promoting the big Bone Marrow Drive being held at Texas Children's Hospital and 13 other Houston locations on February 13th. Sheila showed pictures of baby Alex in the Russian orphanage, Doug talked about Alex's donor who gave the Dierkings so much hope, and Alex's Aunt Maryann was interviewed as well! Five hundred people showed up to donate at the main site at Texas Children's Hospital plus however many showed up at the other 13 locations so the event was considered quite a success!
Meanwhile, here in Austin, Sheila has reached out to yet another family whose 2 year old son has also been diagnosed with AML. This family will be heading to Texas Children's Hospital in Houston in 2 weeks for this little boy's bone marrow transplant. Dr. Wells, Alex's doctor here at Austin Children's Hospital, asked Sheila if she might talk with these parents to share with them their experiences at Texas Children's Hospital. It is sad when your expertise has become your child's journey with leukemia but how very important it is that each new unprepared parent has another to lean on. I know how much support, understanding and presence Sheila and Doug have received through their ordeal from their dear friends, Beth Myler and Erik Josowitz, whose lives were also turned upside down by the sudden and shocking news of their little boy, William, being diagnosed with leukemia 3 years ago. The really good news is that William's treatment time is over and that both Alex and William are in remission now.
With a thankful heart,
Charisse
Tuesday, January 27, 2004 8:39 PM CST Dear friends and family of Alex,
The Dierkings plan on being home now on more of a permanent basis! Hooray!!! Dr. Krance from Houston has been working with Dr. Wells in Austin so that the care given here will be just like what has been done for Alex in Houston over the past couple of months. Alex's clinic visits are now down to once a week...this Thursday, Jan. 29th clinic will be done here at Austin Children's Hospital and then the following week clinic will be on Friday, Feb. 6th in Houston. So their visits to Houston will now be once every two weeks and Alex's antibacterial and antiviral infusions will be once a month! Alex sure has come a long way, hasn't he?!
For those of you who have not seen Alex recently, he has a good amount of hair covering his entire head now and it is many shades darker than before. His hair is more brown now instead of blonde. When I saw him yesterday, he and Sheila were in Blockbusters choosing movies to rent (they had to leave the house while the housekeeper cleaned due to the dust, etc). He had his large filtered mask on, which I know he is accustumed to wearing when he is outside but it must be really uncomfortable. He is such a trooper, not complaining about having to wear it. If any of you need an opinion on a G, GP or GP-13 rated film, just ask Alex...he has become quite the cinema expert from watching lots of movies over the past 7-8 months!!
Alex's homebound schooling has been transferred once again to Round Rock ISD from Houston ISD and Alex started his homebound schooling here yesterday. The wonderful news is that Alex's newly assigned homebound teacher is Mrs. Dianne Henson, his current 2nd grade teacher at Laurel Mountain Elementary!!! This is the BEST news for all concerned...Alex can feel more connected into his classroom and schoolwork at LME; Mrs. Henson was having to put the work assignments together for the previous homebound teacher anyway so now she can prepare his studies and teach him too, which she so desperately wanted to do; and Sheila and Doug feel like Mrs. Henson, who has had a 17 year career in teaching and was voted "Teacher of the Year" this year at LME could make a real difference in Alex's learning and in his life right now! An additional update is that Alex will be receiving homebound teaching for the rest of this academic year because Dr. Krance moved the month back for Alex to be released to go back to school from March to May, 2004.
The Dierkings have begun to hope for even a small bit of normalcy in their lives now. Doug has resumed his teaching at UT on Mondays, Tuesdays and Wednesdays this Spring semester and Sheila was going to go into work today at the Office of the State Demographer for the first time since May 2003, however, this will not be a daily occurrence for her yet. Even Alex has a bit more freedom now and can once again go to see a movie in the theatre but only if a handful of people or less are in the theatre with him.
Well, I am so pleased to be able to share with you such positive news for the Dierkings...they so deserve this and more.
Grace and Peace,
Charisse
Monday, January 12, 2004 7:29 PM CST Alex, Sheila and Doug are on their way home from Houston! They should be home about 4:30 pm Monday, Jan. 12th and stay until the afternoon of Thursday, Jan. 15th. Today's clinic and long anti-bacterial infusion at Texas Children's Hospital went well for Alex and he is feeling good!
Joyfully,
Charisse
Sunday, January 11, 2004 8:21 PM CST Hello to all of Alex's friends and family,
As you know from the last email, the Dierking family had to return to Houston on Tuesday, Jan. 6th due to Alex's fever. Alex did not have to be admitted to Texas Children's Hospital so they stayed at the Radisson nearby Tuesday, Wednesday and Thursday while having tests run on Alex (bloodwork and cultures). All results are coming back negative. This week his fevers continue to be lowgrade and bounce around. Alex has not been eating well so the doctors are giving him vitamin and mineral supplements.
On Friday, the Dierkings decided to move to the Residence Inn where they have stayed before, even though it is more expensive for them. A night's stay at the Residence Inn is $89 per night versus $55 a night at the Radisson. The benefit of the Residence Inn is its kitchenette which allows Sheila to cook for Alex. Especially when Alex is not eating well, Sheila wants to be able to cook whatever Alex might be craving and remember that Alex cannot eat restaurant food nor fresh fruits and vegetables. The Dierkings expected to be at the Residence Inn Friday through today (Sunday, Jan. 11th) then check out tomorrow am.
Alex will go to clinic at Texas Children's Hospital as regularly scheduled tomorrow morning (Monday, Jan. 12th) and have an additional procedure done. He will receive one long anti-bacterial infusion which will take about 3-4 hours. Sheila and Doug are hoping that they will then be released after that to come home to Austin until Thursday, Jan. 15th when they would have to return for Friday clinic. During Friday's clinic, there will be yet another additional procedure done to Alex which is a long IVIG anti-bacterial infusion and will once again take about 3-4 hours.
I believe there is great power in each of us envisioning Alex's little body continuing to fight off these viruses and getting stronger and stronger each day,
Charisse
Tuesday, January 6, 2004 1:07 PM CST Dear Alex's family and friends,
The Dierkings are off to Houston's Texas Children's Hospital, this time to stay for at least a couple of days because Alex has developed a fever again. They left around 11:30 am today (Tuesday, Jan. 7th). What a rollercoaster they must feel like they are on.
Please keep them in your hearts,
Charisse
P.S. Sheila had asked me recently to mention two very important people to Alex and the kindness they showed him at Christmas. Alex's bone marrow donor sent Alex a stuffed moose, a Dr. Seuss book, and a card signed, "Your Donor"! You may remember that the Dierkings cannot know or have contact with his donor until one year after transplant so this meant a lot to them. Secondly, Dennis Alex's newly discovered 9-year old half brother from Russia who was adopted and is living now in western Canada) sent Alex a Christmas VHS tape, a board game called Frustration, and a hand-made card. This continued relationship with Dennis means so much to Alex. If either of you are reading this email, please know how dearly you are regarded and how much your thoughtfulness was appreciated by the Dierkings.
Sunday, January 4, 2004 10:34 PM CST To all the friends and relatives of Alex,
Alex was released from Austin Children's Hospital on Saturday, Jan. 3rd around 3:30 pm to go home after having been admitted with fever on New Year's Eve. All cultures came back negative and his fever is down. He will have clinic as scheduled in Houston at Texas Children's Hospital on Monday, Wednesday, Friday of this week so they plan to drive down each day for clinic and then return to Austin the same day. At least, that is the plan...
More updates later,
Charisse
Sunday, January 4, 2004 10:33 PM CST To friends and family of the Dierkings,
After midnight on New Year's Eve, Alex developed a fever that started at 101.3 degrees and then went up to 102.1 degrees. At 2:30 am, Alex was admitted into Austin Children's Hospital onto the third floor (room #308B) where he had spent so much time last summer. They gave Alex Tylenol for the fever and started him on antibiotics and fluids. Along with a blood draw, they cultured him to see what might grow. Dr. Krance from Houston and Dr. Lockhart from Austin are communicating to decide what the next step will be for Alex so Sheila did not know if they would be staying in that hospital or if they would need to get to Texas Children's Hospital in Houston tomorrow.
Sheila sounded tired with only 1 1/2 hours of sleep last night and felt like she was getting a cold or a sinus infection. However, I am glad to report that both Sheila and Doug were able to get away for an important New Year's Eve celebration earlier that evening and had a wonderful time! Our mutual friends, Beth Myler and Erik Josowitz had a special party in honor of their little 5 year old boy (William's) very last chemo treatment on Dec. 31st after being diagnosed with leukemia 3 years ago! Doug and Sheila were so happy that they could be there to toast to William's cancer-free and treatment-free status. A big thank you to Alex's aunt, Debbie, and his cousin for babysitting with Alex so that Sheila and Doug could go out for New Year's Eve.
Our thoughts and prayers continue with the Dierkings in this new year,
Charisse
Monday, December 29, 2003 6:48 PM CST Dear Alex's friends and family,
The Dierkings so appreciated being in their home for Christmas day. As was scheduled, they returned to Houston the day after (Friday, Dec. 26th) but came right back home that same day to Austin for the weekend! Today, Monday, Dec. 29th, they drove back to Houston for Alex to receive his anti-Adenovirus injection, to be monitored and to get his blood drawn. They are already back in Austin now and report that his counts were good! Sheila also said that tonight will be Alex's last TPN (that was his 12-hour intravenous feeding he had been receiving at night) so that means Alex is eating better on his own! For those of you who have not seen Alex recently, he looks good and his hair is coming in nicely!
The Dierkings will return to Houston again this Wednesday, Dec. 31st for his morning clinic and then again this Friday, Jan. 2nd so it looks like they can be in Austin for New Year's Eve and New Year's Day!!! They do not know exactly what the following week will look like for them.
With great optimism for 2004,
Charisse
Tuesday, December 23, 2003 10:35 AM CST A very Merry Christmas to all,
Yes, Alex, Sheila and Doug should be home by now! They were driving back to Austin this evening (Monday, Dec. 22nd) and will be home for Christmas! We all share in their joy! They will head back to Houston Friday, Dec. 26th for Alex's clinic visit at Texas Children's Hospital. Thank you to Debbie (Doug's sister) and Tommy Fox and their family for putting Christmas lights outside of Alex's house and a wreath on their door to greet them when they came home!
With great happiness in our hearts for the Dierking family,
Charisse, David, Kelsey and Christopher Hughen
Friday, December 19, 2003 8:23 PM CST Dear friends and family of Alex,
The Dierkings have been able to get a short respite from Texas Children's Hospital and have checked into the nearby Residence Inn for the weekend! They will have to go to clinic Monday morning and then there is a possibility that they can come home to Austin for Christmas!!! They will then need to return to Houston on Friday, Dec. 26th for clinic. Alex is doing well right now!
'Til next time,
Charisse
Wednesday, December 17, 2003 4:00 PM CST To Alex's fans!
Sheila and Doug had very good news yesterday! The initial review of Alex's bone marrow aspiration performed on Monday shows that Alex continues to be in remission and he is still 100% engrafted with his donor's stem cells! I could hear such relief and joy in Sheila's voice when she told me this news! Thank you all for your prayers and great hope that no leukemia cells would be found in Alex's body. Alex cannot and should not have to do this alone. He desperately needs and deserves all of our positive thoughts and energies coming his way daily. Each of you are providing a priceless gift to Alex when you do this. Thank you all again.
Due to Alex's serious cough, there was discussion of performing a biopsy on his bronchial tubes on Monday as well. Instead, the ENT doctors were directed by Dr. Krance to do a biopsy of Alex's trachea because they were seeing something of concern below his larynx. With all the coughing Alex has been doing for so long now, his airway has been severely narrowed because of the swelling of the larynx. Before going under general anesthesia for his bone marrow aspiration late Monday afternoon, Alex was given a steriod to decrease the swelling so that the rigid scope could be put down his windpipe in order to perform the biopsy of the trachea. Dr. Krance reports that the trachea biopsy results show a virus and so it is yet another virus that will need to run its course. They have continued administering the steriod to Alex and it has helped stop the coughing and given Alex a good appetite (grumpiness is the downside). Sheila said that Alex has been sleeping a lot since his Monday evening procedures.
Sheila seems hopeful that coming home to Austin for Christmas is a real possibility. Texas Children's Hospital does their very best to release as many patients as possible so that families can be at home for the holidays. We all hope and pray this comes to fruition for the Dierkings.
Blessings,
Charisse
Monday, December 15, 2003 10:02 AM CST Dear family and friends of Alex,
Sheila and Doug ask for your prayers today for Alex. This is Day 100 after his bone marrow transplant in September. This is the day that another bone marrow aspiration will be performed to see if there are any leukemia cells present. Due to Alex's long-term cough, a biopsy in the bronchial tubes might be performed today as well when they do the bone marrow aspiration.
Alex has been in Texas Children's Hospital since December 4th because his fevers bounce around 101-102 degrees and he still has his very serious cough. They have ruled out that Alex has the flu and continue to believe it to be a virus. The doctors have started to treat him for Adenovirus 3 times a week at clinic. If this treatment does not work, that will only allow the doctors to rule out Adenovirus.
You might remember that December 15th was the day that the Dierkings had long awaited, hoping that Alex would be well enough for the family to finally head back to Austin. Because of his recurrent fevers and virus, the Dierkings now have no idea when they might leave Houston and head home. Of course, they had so wanted to be home for Christmas, especially since Thanksgiving was spent in the hospital.
This time of year is especially difficult for families in crisis and the bone marrow transplant floor of a hospital is a particularly depressing place to be. The patients who the Deirkings see on their floor or on other floors of Texas Children's Hospital are seriously ill, many back for their 2nd or 3rd bone marrow transplant after their cancers came back, many with tragic prognoses and some who don't live. That environment makes it extremely hard for anyone, especially a parent, to remain positive and upbeat day in and day out. Sheila, Doug, and Alex need our support now.
Please let them know that you are there with them in spirit when you cannot be there in body. Below are reminders of how you can let them know you love them by calling, writing, sending an email (remember no flowers or plants allowed). Did you know you can send an email to Alex so easily on Alex's website by going to the "guestbook" section and that all of my emails are posted on the website as well (thanks to Lisa Cowan, who regularly maintains this website).
Texas Children's Hospital
6621 Fannin Street
8th floor Room #34
Houston, TX 77030
Hospital room phone: (832) 826-0834
Sheila's cell phone: (512) 773-0828
Alex's Website: www.caringbridge.org/tx/alexdierking
The costs of of Alex's medical care continue to mount and a meaningful
Christmas gift to the Dierking family would be a donation to the Alex
Dierking Fund (help spread the word). You can make that contribution
on-line on his website or send your check directly to:
Any Baby Can - The Alex Dierking Fund
1121 E. 7th Street
Austin, TX 78702
With prayers that Alex's body remains cancerfree and continues its healing,
Charisse
Thursday, December 4, 2003 7:50 PM CST Dear family and friends of Alex,
Alex developed a fever of 101.5 degrees last night (2:00 am Thursday, Dec. 4th) so Sheila and Alex were back in the Emergency Room of Texas Children's Hospital for 5 1/2 hours last night. They did chest X-rays which were negative again. Alex has had a cough since Sunday and the cough has changed to more of a "seal cough" so croup is suspected, which is viral. Doug is on his way back to Houston now after teaching his last class today and should be back at Texas Children's Hospital by 8:00 pm.
What will be a bit tricky for the Dierkings now is getting all of their belongings out of the Ronald McDonald House on Saturday (100 day move-out deadline) while staying in their temporary setup at Texas Children's Hospital. Alex is in Room #834 if you would like to reach him.
Grace and Peace to each of you,
Charisse
Wednesday, December 3, 2003 4:34 PM CST To Alex's family and friends,
I spoke with Sheila yesterday and found out that Alex, Sheila and Doug, unfortunately, had to spend Thanksgiving at Texas Children's Hospital. After entering the hospital on Sat., Nov. 22nd, Alex's fever did not come down below 101 degrees so they were unable to leave the hospital. However, for the past couple of days, Alex's temperature has been trending down and not going over 99.5. He is eating more now and looking better. His chest X-ray was negative two days ago and the blood cultures have all been negative for a bacterial infection which means that this has been another virus. The good news about all this is that Alex is building up his immune system by getting these viruses and then his body is doing a very good job of fighting them off.
So yesterday they discharged Alex from Texas Children's Hospital and the Dierkings moved back to Ronald McDonald House. Doug had already left for Austin yesterday morning and he will return to Houston Thursday. This week Sheila and Alex do not have a visitor staying with them to help out but Sheila says they will do fine.
There is a policy at Ronald McDonald House that residents can only stay 100 days for a continuous stretch then they must move out for 7 days and then they can move back in to whatever room is available. The Dierkings 100th day at Ronald McDonald House is this Saturday, Dec. 6th so they will need to either move to the Residence Inn a couple of blocks away or come home to Austin for a short stay. It all depends on how Alex is doing and what the doctors tell them, however, Alex will need to continue his clinical visits at Texas Children's Hospital on Monday and Thursday.
The aforementioned 100 day mark is not to be confused with the 100 days after bone marrow transplant which is the day the Dierkings have long awaited to hopefully be able to come home to Austin to stay. That 100 day milestone is Monday, December 15th and all of us wish for them the good news of spending Christmas at home.
Before closing, the Dierkings want you to know that they did get to eat Thanksgiving turkey thanks to their sister-in-law, Mary Ann, who brought them their meal on Thanksgiving Day. Additionally, they enjoyed a Thanksgiving meal the night before through "His Grace Foundation", which is a family that gives various forms of support to those families on the bone marrow transplant floor at Texas Children's Hospital. We are all grateful.
Continued blessings to Alex,
Charisse
Tuesday, November 25, 2003 12:07 AM CST Dear Family and Friends of Alex,
Alex did come home to Austin again this past weekend, however, he did have to return to Houston early on the evening of Saturday, November 2nd due to a 101 degree fever that developed while he was home. When the Dierkings arrived to Houston they needed to admit Alex into Texas Children's Hospital via the Emergency Room. That was a tough night because there was not a room available for him until 3:30 am and only available on the 9th floor, which is not the bone marrow patient floor. Alex's temp did go down to below 101 degrees after being admitted to the hospital.
I spoke with Sheila today, Tuesday, Nov 25th, and they are finally in a room on the 8th floor of Texas Children's Hospital (the bone marrow patient floor), Room #45. Last night, though, was rough for Alex. His fever went to 102.3 degrees and he was nauseated. Since then Tylenol has brought his temp down again. The doctors are saying that this is a virus. They have taken Alex off of the anti-rejection drug and will monitor him. Alex is even eating a little.
Sheila was very encouraged by the results they had just received from the engraftment test done last Thursday...Alex is still 100% engrafted with the donor's stem cells!!! We all can be very grateful and rejoice with this news!
Doug did have to come back to Austin today to teach at UT but will return to Houston tonight. Sheila and Doug's niece, Leah Ann, who is home from seminary in Dallas, is with Sheila and Alex today in the hospital. Thanksgiving Day is an unknown right now for the Dierkings. They, of course, had hoped to be at home in Austin but now they are hoping they can at least go to The Residence Inn near the hospital to stay for a few days and cook their Thanksgiving meal. They will have to see how Alex does and what the doctors say.
If you would like to reach the Dierkings in their hospital room, their phone number is (832) 826-0845. We wish for them continued positive news for dear, sweet Alex.
We all send our love to Alex, Sheila and Doug, who remind us to embrace our blessings at Thanksgiving and always,
Charisse
Saturday, November 15, 2003 2:37 PM CST Dear Alex's friends and family,
Alex's doctor in Houston has given the OK for Alex to come home to Austin this weekend! So Sheila, Doug and Alex will leave Houston in the early afternoon tomorrow (Friday, Nov. 14th) and will return to Houston on the morning of Monday, Nov. 17th. This news really surprised the Dierkings since only 6 days ago Alex had a low grade fever and after several tests, the results showed that 3 viruses were present (Influenza A, RSV and CMV). Dr. Krance was surprised to see that Alex had these viruses because Alex really has looked so good and does not exhibit the typical "sick" symptoms that these viruses usually cause in bone marrow patients. So Alex was put on anti-viral medications and now his fever is down. His counts and platelets have been very good even with these viruses present. Alex's doctor in Austin, Dr. Wells, has been informed that Alex is coming back home this weekend and if needed, Austin Children's Hospital would be ready to admit him should a fever or other problems develop while he was here.
Alex will need to be very careful, of course, when he is home. He can have a few visitors and he will need to wear the filtered mask around any children. He still cannot go to a movie or a restaurant or any public building but he can go for a walk outside. And of course, they are just so happy to be able to sleep in their own beds and be in their own home after being away since August 28th!
Dr. Krance told Sheila that based on how Alex does this weekend and upon his return next week, Alex may be able to return to Austin again the following weekend and then, with big hopes, maybe even come home for Thanksgiving! This is all such good news about Alex and a real testimony to how he, his parents, and his doctors have so bravely and successfully battled Alex's leukemia.
We are all so happy to welcome you home,
Charisse
Thursday, November 6, 2003 1:16 PM CST Dear friends and family of Alex,
It was so good to see Alex and Sheila again...it had been 2 months since I had seen them! I drove to Houston the rainy weekend of Friday, October 24th and returned to Austin Monday, October 27th. While in Houston, I was also visiting my lifelong friend, Liz Casagrande, who has warmly embraced the Dierkings since their arrival in Houston 9 weeks ago. Liz gave Sheila, me and another dear friend of ours visiting us from Seattle the gift of a full body massage at a luxurious nearby spa on Saturday! Sheila said this might have been only her second massage ever in her life so Sheila, we are going to try to get you more of those because, heaven knows, you deserve them! After our relaxing massages, we all enjoyed a delicious lunch at a café across the street from the spa and then I went to The Ronald McDonald House to see Alex. Alex was in great spirits, laughing with his 26-year old cousin, Howard, who lives in Houston while they watched movies together with Doug! I loved seeing Alex's beautiful smile and sparkling eyes once again! Sheila was successful at getting Alex to eat a corndog while he caught me up on the details of the movie. Their room on the third floor at The Ronald McDonald House, #49, is nice and their 2 full size beds face out looking at an incredible view of the Braeswood Bayou, a running path, a playground, Hermann Park and Medical Center and a wide expansive sky with plenty of airplanes. They are certainly glad to have these floor-to-ceiling and wall-to-wall windows to provide entertainment in a room where they need to spend so much of their time.
Then on Monday, October 27th, I went to Texas Children's Hospital with Alex, Sheila and Doug for Alex's scheduled clinic appointment where he had blood drawn in order to look at his counts and his platelets. The results of these tests were fine and continue to be very good. In fact, Sheila told be yesterday some really wonderful news that Alex can now have his-age friends come and visit him as long as the child has not been ill, shows no signs of illness, has not been in a school environment where lots of kids have been sick, and the child must be willing to be masked and wash his/her hands well. I hope to bring my son, Christopher, soon to Houston so he can play with Alex again! They miss each other a lot.
The other good news that Sheila shared with me yesterday was that because Alex's counts have been good, Alex only needs to go to his clinic appointment at Texas Children's Hospital twice a week now (Monday and Thursday) instead of 3 times a week. The doctors have cut down on his F-K anti-rejection medicine and Alex has been eating more now on his own (Chinese eggs rolls, chicken, orange juice, cinnamon rolls) while he still continues to receive the 12 hours of intravenous feeding at night.
Sheila's mother is there with Sheila and Alex this week while Doug is teaching at UT in Austin and last week their friend Melissa Goodwin stayed with them mid-week. Another friend from Austin, Toni Clark, came by and visited when she was attending the quilt show in Houston last week. Their friends from College Station, the Hrncirs, paid for Halloween weekend for the Dierking family to stay at The Residence Inn (where they had stayed another previous weekend) and Alex enjoyed playing hide-and-seek, finding hidden candy, and eating the candy too! Thank you to Karen and Charlie Hrncir, Melissa, Liz, and Toni for making sure Alex had a good Halloween
weekend!
Sheila and Doug wanted to also thank Larry McCotter, an attorney in Houston, whose daughter is a UT Business School student. She told her dad about the Dierking family and Larry, along with his Sunday School Class at Champion Forest Baptist Church in Houston, paid 20 days at the Ronald McDonald House for Alex, Sheila and Doug, gave them two $50 gift certificates from Argentine Grill (comped by the restaurant), and 2 Regal Theatre movie passes! What generous gifts from many kind hearts!
Lastly, I want to tell you about an incredible gift for Alex which was presented to Doug from the University of Texas Longhorns Baseball Team. Doug and Sheila took me to their car when I was leaving Houston and in the backseat stretching from door to door was an approximately 5 foot by 5 foot glass-framed size XL UT Longhorns Baseball Team Jersey signed by all the players and on the top of the shirt, it said "To Alex"! You have to see this impressive gift to believe it!
With gratitude,
Charisse Hughen
Thursday, October 23, 2003 11:09 PM CDT To Alex's friends and family,
I have spoken with Sheila and Doug twice over the past couple of days and they tell me that Alex is doing better. They actually thought that they might be going back to The Ronald McDonald House today (Thursday) or tomorrow (Friday) because Alex's temperature had been staying down without the use of Tylenol.
As I reported in my Oct. 13th update, Alex had gone back to Texas Children's Hospital that day because of fever. Subsequently, he developed a rash on his back, stomach, rib cage and down his legs. A skin biopsy was done on Oct. 15th and those results showed that Alex had a viral infection (which usually goes away eventually). Other good news was from a CT scan of the sinus, lungs, liver, kidney and spleen which have all come back negative. While in the hospital, Alex's highest fever was 103.7 degrees, he was nauseated, he slept a lot, and has been receiving 18 hours a day of intravenous feeding because he has not been eating at all on his own. The doctors certainly expected symptoms such as these because of Alex's compromised immune system after bone marrow transplant.
We are happy for Alex that he feels better now and hope that he is stabilized enough to return to The Ronald McDonald House. I know Sheila and Alex were very grateful to have Mary Ann (Alex's aunt from Houston) visit daily with them in the hospital last week while Doug was teaching at UT in Austin and also this week to have Angie and Walt (Doug's other sister in Austin and her husband) come and stay with them while Doug was away. Your presence and support have meant so much.
I will be going to Houston this weekend and I am so excited about seeing Alex and Sheila, whom I have not seen in 2 months! I will certainly give you all an update after my visit.
Sheila did tell me that Dennis, Alex's 9 year old half brother in British Columbia, and his family had called Alex and that it was so good to hear from them again.
One last bit of news to share: Curt Glover, an employee of the Legislative Council where Sheila worked for many years, and his son and son's boy scout troop, conducted a fundraiser and netted $2,033.65!! They are depositing this in the Alex Dierking Fund at Any Baby Can. Thank you to Curt, your son, and all the boy scouts from your troop for your generosity and kindness in helping Alex and his family in their time of uncertainty. And thank you, Clare Dyer, for informing me about this act of goodwill and friendship.
Peace,
Charisse
Tuesday, October 14, 2003 7:05 AM CDT Dear family and friends of Alex,
Sheila, Doug and Alex received the best news they could have received today! Yes, that's right, Alex's pathology reports from his bone marrow aspiration showed no leukemia cells...Alex is in remission!! Dr. Krance said that Alex is still showing 100% donor stem cells in his body! This miracle makes us all very thankful, indeed, and personally, I have not stopped smiling since I spoke with Doug late this afternoon!
With this wonderful news comes a bit of not-so-good news. Alex developed a fever yesterday (Sunday, Oct. 12th) that oscillated between 99-100 degrees but this morning, Alex's temperature went up to 101 degrees so Alex was admitted back into Texas Children's Hospital this a.m. and will stay there for at least the next 3 days. They started him immediately on IV antibiotics and the fever had already begun to decrease. Alex has also developed another rash on his sides and arms and they are not sure what that is from. Alex is again on the 8th floor at Texas Children's Hospital but is now in room #44 and the phone number in his room is (832) 826-0844.
As you may know, it is very common for a bone marrow transplant patient to develop fever after leaving the sterile hospital environment and most patients need to return to the hospital frequently due to fever or infection of some kind. However, in Alex's case, it is amazing that this is the first time since he left for The Ronald McDonald House 18 days ago that he has experienced a fever over 100 and therefore, the doctors and the Dierkings had anticipated this at some point and are not alarmed.
Thanks to each of you who have supported, loved, visualized and prayed for Alex through these 5 difficult months. Please continue...Alex and Sheila and Doug still have a long road ahead and one that is not very predictable.
Rejoicing with each one of you,
Charisse
Thursday, October 9, 2003 8:34 PM CDT Dear family and friends of Alex,
Alex did have his bone marrow aspiration last Friday, October 3rd, the results of which they hope to receive either tomorrow, Friday, October 10th or Monday, October 13th. Of course, these results are critical because they will let them know if Alex is in remission (no more leukemia cells) or not. They did get a second bit of good news with a second engraftment test done last Friday as well. This test once again showed that Alex has 100 ngraftment and this, we pray, helps us to be optimistic about the upcoming results of the bone marrow aspiration.
Alex's platelets are coming back pretty strong and his counts are holding, moving back and forth a bit. His rash has mostly cleared up...a cream they are using has seemed to help. Alex has felt pretty good and even though he is still receiving 12 hours at night of intravenous nutrition feeding, he has started to eat some eggs with cheese, hash browns, chex mix, and that good 'ol pepperoni!
Doug reports that Alex exhibited a lot of energy this weekend when Alex, Sheila and Doug were treated by their friends from Switzerland to a 3 night stay at a near-by Residence Inn in Houston! The Dierking family felt like they got to go on a little mini-vacation, appreciating more privacy than the communal living they are experiencing at the Ronald McDonald House. Of course, cable (specifically, cartoon network) was a huge plus for Alex! But Doug and Sheila said that Alex spent most of his time playing hide and seek inside and outside and running around the apartment which had a loft and a kitchen. Of course, Sheila had to clean and sanitize before Alex entered the apartment but it was worth it to enjoy what felt like "luxurious accomodations" to them for a weekend!
My husband, David, and I were able to have lunch with Doug today here in Austin at Castle Hill before he headed back to Houston. Doug has been able to teach his 1 undergraduate and 3 graduate courses at UT in Austin every week and maintain his supervision of more than 50 interns as well. It was so good to be with Doug today and I even got to speak with Alex on the phone because he called his dad about 5 times while we were eating lunch (obviously, missing Dad a great deal)! Sheila and Alex so appreciated Doug's sister, Debbie Fox from Austin, coming once again to Houston to stay with them while Doug was in Austin.
This past Saturday, October 4th, another heart-warming fundraising event occured in Alex's neighborhood. There is a group of 30 or so 6th grade girls in Austin who call themselves "The Everyday Elves" and who do charitable acts throughout the year all over Austin. This time, the head elf for this fundraiser, Whitney Honeycutt, chose to raise money for Alex Dierking and his family by selling baked goods and hand-crafted Halloween decorations at our neighborhood park. In 2 hours, the Elves raised $800 in cash and checks and donated the money to Alex's Any Baby Can account! Thank you, Whitney and all the Everyday Elves and parents for your charitable work, and thank you to each person who generously gave that day.
God's Grace be with each of you,
Charisse
Wednesday, October 1, 2003 10:54 AM CDT To all those who hold Alex so dear to your hearts,
Yesterday at about 4:30 pm, Sheila and Doug received the BEST NEWS possible at this stage in Alex's fight against leukemia! The results of the engraftment blood tests taken over a week ago show that Alex has 100 ngraftment with 100 ONOR stem cells!! These optimal results are the miracle that everyone has been hoping and praying for! Alex's blood is now truly his bloodsister's blood and he has even switched blood types from A positive to B positive!
Sheila, Doug and Alex are obviously thrilled with this great news and they thank all of you for your prayers for healing and your positive thoughts. The next step will be to perform another bone marrow aspiration this Friday at Texas Children's Hospital, the results of which will not be available until a week after the procedure. What this will show them is if Alex has any leukemia cells left in his body. Therefore, we ask each of you to continue to visualize Alex's body with no leukemia cells present, a body that is ready to rebuild a strong immune system with his donor's stem cells. Alex's little body has done amazing things so far...I know much more is possible.
The Dierkings did move to the Ronald McDonald House the evening of Thursday, Sept. 25th. They are in a motel-like room on the 3rd floor and Doug reports that they have a very nice view with floor to ceiling windows overlooking Herman Park. They can see the joggers and dogs on running trails, skateboarders, even helicopters landing at the Herman Medical Center. There are a total of 50 rooms at The Ronald McDonald House but not all are currently occupied. The children there vary in age and some children need to be more isolated than others. Certainly, Alex is one of those who needs to stay away from other children now and eats in his room. There is a central kitchen but Sheila expresses a real disappointment that not every family there has the same cleanliness/sanitary standards that she does and that Alex requires.
Alex will stay at The Ronald McDonald House as long as he does not develop a fever of 100.5 or above. That is the criteria for which Alex would then need to be admitted back into Texas Children's Hospital since that usually means that an infection of some kind is present. Yesterday, Alex started receiving his Houston ISD homebound teaching from Mrs. Star! She will be coming to his room at the Ronald McDonald House Monday-Thursday for an hour each day and Alex will have homework each day as well. Sheila and Doug are so happy that his homebound schooling in Houston has begun. It certainly is a good and important distraction for Alex.
Alex does go to the clinic at Texas Children's Hospital for labwork every Monday, Wednesday, and Friday. The rest of the time he stays in his room. When he goes out and might be around children he does need to wear his hepafilter mask. Alex still is not eating much except he has recently been obsessed with pepperoni! They can't seem to get enough of it for him! He is receiving 12 hours of intravenous feeding at night and currently weighs about 56 pounds. He continues to take several medications orally and one through his port. The nausea seems to be gone and the diahhrea is less.
Doug continues to travel back to Austin to teach at UT every Tuesday, Wednesday, and Thursday. The first week that he went, Sheila's mom came and stayed with Sheila and Alex to help out. The second week, one of Doug's sisters from Austin, Debbie, came and provided help to Sheila and Alex. Last week and this week, their good friend, Melissa Goodwin from Austin, came to provide assistance and companionship for Sheila and Alex. Sheila is greatly appreciative of this outreach of love, time and support when Doug is gone. Many thanks to each of you.
I will end now with a very grateful heart for this gift that Alex has been given,
Charisse
P.S. Reminder of Alex's current address and phone #:
Ronald McDonald House
1907 Holcomb Blvd. Room #49
Houston, TX 77030
(713) 795-3549
Thursday, September 25, 2003 7:44 AM CDT Dear Alex's family and friends,
The news about Alex continues to be good on Day 24 after transplant. Sheila reports that Alex's white blood cell counts have started to go up and that is exactly what the doctors and Sheila and Doug were hoping for. In fact, the doctor says there are signs that engraftment has started to occur because blood tests have shown that Alex is making platelets and red blood cells on his own! The doctor states that when it happens this quickly for a patient, it is usually a good sign that the host (Alex) is accepting the guest's (donor's) stem cells! The beginning of the engraftment studies were sent off last week (blood tests) and the results are due back this Friday or Monday, confirming, hopefully, that engraftment has definately occurred and is progressing successfully. The bone marrow aspiration (spinal tap) will occur next week to offer, once again hopefully, evidence of no more leukemia cells in his body.
There is something that is happening to Alex now that sounds like it is not such a good thing but apparently, it is not necessarily a bad thing. The donor's immune system is attacking Alex's body causing an itchy rash on his ears, neck, under an eye and in his armpits. The doctor tells Sheila and Doug that this is "graft vs. host disease" and that it is a normal process of the aftermath of a bone marrow transplant and can be a good thing if this "attacking" only occurs in less than 25% of Alex's body.
Alex is still not eating or drinking, continues to have diahhrea, but is not running fevers. They have decreased the intravenous feeding to 12 hours a day instead of 24 hours a day, hoping that it will stimulate his hunger.
Sheila has been told that Alex may be released from the hospital as early as tomorrow (Thursday, Sept. 25th) and the family would then all move to The Ronald McDonald House 2 1/2 blocks away. I know it is a scary time for Sheila and Doug thinking about moving out of the sterile, well-monitored environment of Texas Children's Hospital to a less sterile daily life at the Ronald McDonald House without the doctors and nurses immediately available. Alex is not excited at all about the move because there is no cable in their room at The Ronald McDonald House. Our thoughts and prayers will be with the Dierkings as they make yet another transition in their lives while battling leukemia for and with Alex.
Sheila wanted me to say a big thank you to many members of The Second Baptist Church of Houston, where Doug's brother, Danny, and sister-in-law, Mary Ann, are active members and teachers. Different families from this hurch have been bringing dinners regularly to the Dierkings in the hospital and will continue to bring meals periodically to them while they are at The Ronald McDonald House. The Dierkings are especially touched when families, who do not even know them, reach out to them with such generosity.
Speaking of generosity, over $2600 was raised at Alex's school fundraiser this past Friday, September 19th. In 2 hours at the Laurel Mountain Elementary Family Picnic, teachers, parents, and children showed what big hearts they had for Alex! In addition, I know there were many other parents and teachers who gave to the "Any Baby Can-Alex Dierking Fund" by sending checks directly to Any Baby Can or by donating on-line with a charge card. Thank you so very much.
And just as a reminder, tell others who inquire about Alex to visit his
website at www.caringbridge.org/tx/alexdierking.
Blessings to each of you,
Charisse Hughen
Friday, September 19, 2003 7:30 AM CDT The email below was sent to me yesterday from Kathy Frost, colleague of Doug's from the Educational Psychology Dept. at UT, reporting the very successful results from the UT Red McCombs Undergraduate School of Business Bake Sale held last Wednesday, Sept. 10th, to benefit Alex Dierking!!! Many thanks to Sean Paul, President of the Undergrad Business Council at UT, and all of the students and faculty who worked so hard to raise so much!! Kudos to all of you!
In addition, I wanted to mention another generous personal gift given to the Dierkings from Kathy Frost and her family. Kathy's aunt, uncle, and parents held a garage sale about 2 weeks ago. They made $600 on the garage sale, then added another $400 of their own money to make an incredible donation of $1000 to Alex and his family! You are right, Kathy, that garage sales are a super way to fundraise for a good cause and your family's thoughtful efforts are the shining example of that. Thank you.
*********************************************
University of Texas Business School Raises $6,000 for Alex Dierking!!!!!!!
When is a 1,000 percent markup celebrated? When it goes for a good cause. On September 9, a $20 Tiffany's Treats gift certificate brought in $200 at a bake sale for Alex Dierking, the seven-year-old son of McCombs management professor Doug Dierking. The bake sale raised more than $6,000 for Alex, who has been battling an aggressive form of leukemia since May and recently underwent a bone marrow transplant. Read more at http://www.mccombs.utexas.edu/news/pressreleases/dierking.asp.
Monday, September 15, 2003 5:38 PM CDT To all of Alex's #1 fans,
It is now day 9 after transplant and our little Alex seems to be doing well. In fact, Dr. Krance has been telling Sheila and Doug daily that Alex is doing extremely well at this stage and that he is very pleased. Sheila attributes much of why Alex is doing so well to the fact that the doctors and nurses at Texas Children's Hospital are on top of everything with Alex's treatments and care. One must also think that Alex's spirited tenacity surely is helping him with the healing within his body.
I spoke with Sheila today and she said that Alex's counts are where they want and expect them to be at this time. The doctors are being very proactive with anti-nausea medicine and morphine for the pain that Alex sometimes is experiencing due to ulcers in his mouth. Alex has been quite diligent about using his mouthwash hourly which helps limit the number of mouth and throat ulcers caused by the radiation treatments done a couple of weeks ago. Alex cannot really taste anything and does not have an appetite yet so he continues to be fed intravenously. The radiation has caused some mucusitis, resulting in thickened saliva which makes swallowing sometimes lead to throwing up and he is still having some diahhrea as well.
I marvel at the strength of Sheila and Doug and their ability to stay positive, calm and focused. They truly are the "Advocacy Duo for Alex" as they take on every challenge needed in order to provide their son with the best care and support possible. I often think how blessed Alex is to have a mommy and daddy who loved him so very much 6 1/2 years ago that they traveled all the way to Russia to find him and bring him home with them and now to offer him everything he needs to fight his battle against cancer.
Please visualize Alex's body accepting these new stem cells and regenerating a strong, new immune system, free from all leukemia cells. Thank you for all for your continued thoughts and prayers.
We all love you, Alex,
Charisse Hughen
P.S. Reminder about Alex's website: www.caringbridge.org/tx/alexdierking
Thursday, September 11, 2003 3:19 PM CDT Dear Family and Friends of Alex Dierking,
I just received this from Kathy Frost, a colleague of Doug's at UT, and HAD to email it out to all of you who know and love the Dierkings. Remember in my last email on Sept 7th, I announced a Bake Sale fundraiser for Alex that the undergraduate students from the UT Business School were planning for yesterday, Wednesday, Sept. 10th? Well, well, well...read the following and you too will be inspired by these amazing students and what they did for a teacher they love and his son!
Our thanks to you, Kathy, for this email,
Charisse Hughen
******************************
Hello!
You all may have already heard from Sean about the UT fundraiser For Alex yesterday, but if not, I wanted to pass on how incredible these students were.
By the time I arrived at the Business School (12:20), they had already made $2000! I stayed until 2:30 and by that time, the students felt they were inching up into the $3000-$4000 range!! The response by passers by was amazing and incredibly heartfelt.
These business students of Doug's were not only persistent in their mission, but creative in their method. They had organized a "silent auction" to "Tiffany's Treats", they were prepared with a huge, banner-sized "card" for Alex (which was signed by supporters), and they wandered the grounds around the business school trying to drum up business. Their dogged dedication to making this "bake sale" an overwhelming success clearly reflects their sincere feelings for Doug and his family.
The whole event reminded me of an inspiring quote by Margaret Mead: "Never doubt that a small group of thoughtful committed citizens can change the world, indeed it's the only thing that ever has."
Best,
Kathy Frost
Educational Psychology
Sunday, September 7, 2003 8:40 PM CDT Dear family and friends of Alex,
Sheila and Doug are pleased to report that the bone marrow transplant went well and Alex did very well during it. The actual transfusion occurred both on Friday night, Sept. 5th and on the morning of Saturday, Sept. 6th. The Friday night infusion started at 10:00 pm and lasted about 40 minutes. The volume from that one bag was so much that they needed to wait until the next morning to infuse him with the remaining second bag (I believe there were only 2 bags total). Alex's Uncle Danny and Aunt Mary Ann were there during the first infusion. On Saturday, Sept. 6th, Alex received his second bag at 10:00 am for another 40 minutes and the very close monitoring of Alex during these stem cell infusions showed that he was doing just fine during the procedure.
Doug said that Alex had a slight fever (101) and some vomiting yesterday (Saturday) but that he had a good night last night and a good day today. Doug said Alex is even flashing his smile periodically at folks! Alex is receiving food intraveniously until he begins eating well on his own again. Doug and Sheila seem to have a lot of confidence and comfort at the level of care that Alex is receiving. They continue to see Dr. Krance daily as well as fellows (physicians who are coming back to a unit for a month to do a specialty). They speak highly of two fellows, with whom they have developed relationships (one from Russia and one from Egypt).
When the donor's bone marrow arrrived to Alex, there was a wonderful surprise accompanying it...it was a letter from the bone marrow donor to Alex wishing him well, saying that she was praying for him and expressing her joy that they will be sharing the same stem cells now! She signed her letter, "Your blood sister". To the Dierking's amazement, she had put a happy face on her note to Alex which looked identical to the happy face he had put on his contest-winning autumn leaf two days previously at the hospital! In addition, she wrote a letter to Alex's parents telling them she would be praying for them and referred to 2 Bible scriptures: Isiah chapter 43, verse 2 and Philemon (this may be the shortest book in the Bible) verse 4. Who and where this angel on earth is, is still an unknown but the Dierkings are extremely touched by the contact that she made.
Now comes the "wait and see" period for Alex, Sheila and Doug. These next three weeks are critical as Alex's immune system works to regenerate from these new stem cells. Now the doctors will watch for "graft vs. host disease", which is the process of the grafting new cells fighting with the host (Alex) and hopefully the grafting cells finding their way successfully to Alex's blood marrow with no infection. The risk of fever or infection is high right now so vigilance is essential.
Doug wanted me to share something with you that he was very moved by. He received notice from the UT business department that they were hosting a Bake Sale on behalf of Alex Dierking this Wednesday, Sept. 10th from 12:00 Noon - 5:00 pm in the Hall of Honors. The notice states: "The Red McCombs School of Business undergraduates and staff will be hosting a fund-raising bake sale for Alex Dierking, the son of one of our beloved faculty members, Doug Dierking, of the Management Dept." It invites all to come to the Bake Sale, which will include pizza and snacks, and to please be generous in your donation to support the Dierking family. If Alex is OK, Doug plans on coming back to Austin to teach at UT this Tuesday, Wednesday, and Thursday and hopes to stop by the Bake Sale to thank these friends for their very thoughtful efforts.
Grace and Peace,
Charisse Hughen
Friday, September 5, 2003 4:02 PM CDT Dear friends and family of Alex,
Today is September 5th...the day that all of us have so anxiously awaited...the day that Alex Dierking will receive new bone marrow from a very generous and anonymous donor. The bone marrow transplant will occur this evening around 8:00 pm. Sheila reports they are pleased that they were able to get 4 bags of bone marrow from their donor. The procedure for tonight will take place in Alex's room at Texas Children's Hospital and it will be very much like a long transfusion with Alex receiving the bone marrow from the hanging bags of blood while he is closely monitored by Dr. Krance and other doctors and nurses. It should not be a painful process for Alex and in fact, he may even sleep through much of it. Every couple of days after his stem cell infusion, he will receive blood and platelets until his body can make its own.
I spoke with Sheila this morning and she said that Alex had another really good day yesterday (Thursday, Sept 4th). She said that they have maintained their twice daily total body irradiation treatment schedule at MD Anderson and that Alex has continued to do very well with the trips in the ambulance as well as remaining still for the radiation (often sleeping through it). Alex apparently has been cracking up the ambulance drivers and the radiation personnel with his fun and silly sense of humor! Of course, all of us are thrilled when Alex is feeling well enough to be "the goofing and laughing Alex" whom we all know and love!
Alex does continue to hate his big plastic gas mask, especially because its filter color is BRIGHT PINK...some kids at MD Anderson have a cool yellow mesh cover that goes over their dreadfully pink filter so Doug is actively seeking out one of those at the hospital for Alex! Something that Alex is really looking forward to is tonight after his very last total body irradiation treatment, he will get to ring the large bell there at MD Anderson 3 times, as is the tradition when a child finishes their last radiation treatment! I can imagine a huge collective smile as we all think about Alex ringing that bell around 5:30 pm tonight!
When I called Alex's hospital room around 10:30 this morning, Alex was asleep, Doug was in the room with him and Sheila was up on the 16th floor of Texas Children's Hospital doing laundry. Free of charge are 3 washers and dryers for the patients' families to use. In addition, there is a beauty salon (for those patients or family members with hair) and a radio station called "Kid Lollipop" which is run by the kids in the hospital! Alex has already become famous by having his name announced yesterday on the radio as one of the winners of the best hand-crafted autumn leaf!
Sheila told me more about "His Grace Foundation", which had left in Alex's hospital room, as a welcome gift, a basket with goodies, among them being a parking pass and a phone card for the family. In addition, Sheila, Doug, and Alex have all taken advantage of the free massages this group offers every Wednesday to the bone marrow transplant patients and families. "His Grace Foundation" will also go shopping for the families once a week at Target or to a similar store and bring back needed items to the families. This foundation was started by a family whose daughter, Grace, was a patient at Texas Children's Hospital and who is now in remission.
The Dierkings are very appreciative of the wonderful and helpful visitors they have had...Uncle Danny and Aunt Mary Ann (Doug's brother and wife who live in Houston), Liz Casagrande (my longtime friend who lives in Houston) and a surprise visitor from Austin, Keith Powell (the Dierking's across-the-street neighbor). Sheila and Doug also send their sincere thanks for the many cards, gifts, and calls they have been receiving and enjoying.
Alex has had some side effects from the radiation this week which include diarrhea and some vomiting but overall, Alex is feeling good and sleeping well. Sheila and Doug have been trading off sleeping at Ronald McDonald House every 2 nights and they are sleeping OK. Alex is no longer receiving chemo or Campath (the immunosuppressant) but continues to receive an antinausea drug and antiviral drug and FK506 (which is an anti-rejection drug, not an antiviral which I believe I incorrectly reported in the last
email).
Since it takes a couple of weeks to find out whether the bone marrow transplant was successful, September 28th is the date they plan to take blood samples from Alex to see if engraftment has occurred and on October 3rd, they plan to do another bone marrow aspiration to see if all leukemia cells are gone. Lots of prayers are needed for Alex's body to accept these new cells, for these new cells to find their way into Alex's bone marrow, and for successful grafting to occur. I believe there is great power when Alex's family, friends, and friends of friends all envision together a cancer-free Alex.
With lots of love for Alex,
Charisse
P.S. As a reminder, Alex's environment must remain very sterile for a long time. He cannot be around flowers or plants because of possible fungus they may carry nor can he have any restaurant food or fresh, raw fruits and vegetables. If you are thinking of sending or taking them something and are not sure if it is sterile enough for Alex, please ask me or them directly.
Wednesday, September 3, 2003 3:17 PM CDT To all the friends and family of Alex,
I spoke with Sheila around 11:00 am today (Wed., Sept. 3rd) and I am pleased to report that Alex had a good day yesterday! I am sure that all of us thought of Alex frequently throughout the day as we knew he would be experiencing his first full body irradiation treatments. Sheila said that the 3 of them were taken by ambulance twice (5:00 am and 4:30 pm) yesterday from Texas Children's Hospital to MD Anderson and that Alex did really well in the ambulance. She said Alex was so brave and stayed very still for the radiation treatments. She said that he has not been sick so far with the 3 treatments but that yesterday the radiation did cause extremely painful saliva glands for him (this is a common side effect) so Alex was given a bit of morphine yesterday to help him with that pain. Other than that, Sheila said that Alex is not in a great deal of discomfort, is eating some, and sleeping well (Alex slept through the night). In fact, last night was the first night that Sheila slept at the Ronald McDonald House instead of Doug and she slept well too.
Sheila explained the process of the radiation treatments as Alex laying down on a gurney and they lined Alex up to a red and green laser for both sides of his body (about 5 minutes on each side) and Alex does not feel anything during this. It sounded like the only thing that Alex really did not like was having to wear a mask (like a plastic gas mask) on his face from the time he left Texas Children's Hospital until he returned back to Texas Children's Hospital. This, of course, is required so that Alex is not exposed to any germs now.
Alex is being given "Campath" through his port in tandem with the total body irradiation treatments. Campath is an immunosuppressant which helps kill T-cells and B-cells. The purpose for all of this is to totally depress the immune system in order to minimize the chance of donor tissue rejection. My understanding from Sheila is that the use of Campath is unique to Texas Children's Hospital. Alex is also receiving an antiviral (FK506) through the port in his chest and an antifungal by mouth. When Dr. Krance came by yesterday to see Alex and do his physical examination, he told Sheila and Doug that he thinks everything is going well.
Sheila seems to be pleased with the fact that the nurses who give care to Alex daily remain consistent and that they have become very familiar with Alex and family. There are only 15 rooms on his floor so the level of attention and care is very good.
What some of you may not know is that Sunday and Monday were not good days for Alex. He was extremely nauseated, vomiting a lot, spiking fevers, and not sleeping well. This was due to the very high doses of chemo he received Friday through Monday after arriving at Texas Children's seemed especially pleased that Alex was feeling better yesterday and this morning.
One more bit of good news comes from dear friends of Sheila and Doug's.Polly and Keith Hill live in Massachusetts after moving from Austin with their two children whom they adopted from Russia. Due to their generous gift to the Dierkings, the first 45 nights at The Ronald McDonald House have been paid for and that is one less worry for Sheila and Doug. Thank you from all of us.
Lastly, I will share with you something that has given me great comfort.Since I cannot be in Houston with Sheila and Doug and Alex right now, I am very grateful that my lifelong friend, Liz Casagrande, who does live I Houston near Texas Children's Hospital has taken on the task of visiting, delivering meals and being there for the Dierkings for whatever they need. Liz is sharing with them my love through her kind and thoughtful support.
With gratitude,
Charisse Hughen
Sunday, August 31, 2003 5:50 PM CDT Dear family and friends of Alex,
Sheila called me from Houston yesterday to give us an update. Alex, Sheila, and Doug had left Austin at about 4:00 pm Thursday, August 28th, as planned, and arrived at Ronald McDonald House in Houston that same evening. Yesterday (Saturday, August 30th), Alex had a low grade fever (100.1), a headache, and was asleep. He has been receiving chemo through the port in his chest since his admittance to Texas Children's Hospital on Friday, August 29th. He is also taking an antibiotic and an antifungal by mouth. Alex is also having to shower everyday with a special hydroxide soap to guard against a fungus infection on his skin and then use Eucerin Lotion all over to help his dry, flaky skin.
Here are their addresses and phone numbers:
Alex Dierking
Texas Children's Hospital
6621 Fannin Street
Room #34 - 8th floor
Houston, TX 77030
(832) 826-0834
Doug and Sheila Dierking
Ronald McDonald House
1907 Holcomb Blvd.
Room #49
Houston, TX 77030
(713) 795-3549
(Right now, Doug is only at the Ronald McDonald House after 10:00 pm and then leaves early in the am)
Sheila reports that their hospital room at Texas Children's is bigger and more comfortable than the rooms at Austin Children's Hospital. She said that her bed in the room is bigger and better, there is a lot more storage room, Alex's bed is padded for his comfort, and the medical equipment is more permanent so there is not the issue with having to negotiate around it. They saw their doctor, Dr. Krance (Direcor of Pediatric Stem Cell Program) briefly on Friday and have contact more often with his Nurse Practitioner, Cheryl Gordon.
The Ronald McDonald House is 2 1/2 city blocks from Texas Children's Hospital and Doug was given a parking pass at the Hospital so he can come and go as needed. The RM House's accomodations are very much like a motel room with 2 queen size beds.
Alex will be receiving chemo through tomorrow, Monday, Sept. 1st. Then on Tuesday, Sept 2nd. at 5:00 am, Alex and family will be taken by ambulance 1 block away to MD Anderson to undergo his first total body irradiation (here's a definition I found http://www.kcc.tju.edu/radonc/TBI.htm), which is scheduled for 6:00 am, after which they will return him to Texas Children's. At 4:30 pm, he will be taken again to MD Anderson for his second total body irradiation and then subsequently returned to Texas Children's for the night. This schedule of treatments two times each day will continue on Wednesday, Thursday and Friday. After the last total body irradiation on Friday, Sept. 5th, Alex will then receive his stem cell infusion (the bone marrow transplant). Sheila and Doug have been told that Alex will be feeling very sick during all of this next week's procedures and for possibly weeks after the bone marrow transplant. The total body irradiation will be depleting all of Alex's immune system and until Alex builds up a new one, he will be extremely susceptible to all viruses or bacterias. This next few weeks will be frightening, difficult and full of anxiety for Sheila, Doug and Alex. Please let them know that they are in your daily thoughts and prayers and that you are there for them in whatever way you can be.
A website has been established for Alex, thanks to the skilled and loving efforts of Erik Josowitz and Lisa Cowan. It is http://www.caringbridge.org/tx/alexdierking. This web page is available to keep friends and family updated with information about Alex and to provide ways to help and stay in touch. You will see on this website an easy way to make an on-line donation to the family and an address to send a check if you are able to help the Dierkings with their mounting healthcare-related expenses. To Erik and Lisa, many thanks from us all for providing us with a website for Alex.
Another dear and longtime friend of Sheila's, Lynette Lawson, researched yet another way to help the Dierkings out financially. She discovered that others could prepay for the Dierking's daily room cost at the Ronald McDonald House by credit card or mailed in check to Leslie Perry at the RM House address above. $15 a day for 114 days (at least) comes to $1710 and that is certainly not an expense that health insurance will cover. Thank you, Lynette, for your proactive thoughtfulness.
On Friday, Sept. 19th, 6:00 pm-8:00 pm, at Laurel Mountain Elementary (Alex's school), the school's annual Family Picnic will occur and as the PTA Outreach representative, I will be available to accept donations for the Dierking family. By that time there should be a tax-deductible "Alex Dierking Fund" set up through Any Baby Can and I will have information about that there. As soon as this account becomes available for use, I will send out an email with details and Lisa Cowan will put all info on Alex's website.
One bit of good news that you may not have heard about is that in an EEG done on Monday, August 25th, Dr. Wells found minimal heart damage and that Alex's heart looks like it did before chemo! This could be due to either a false past reading or Dr. Wells said things can change rapidly. They also found out that day that Alex's kidney function was fine. For these things we can be grateful.
Blessings,
Charisse Hughen
Friday, August 22, 2003 8:54 PM CDT To Alex's famiy and friends,
Yesterday, Sheila and Alex went to Austin Children's Hospital for another bone marrow aspiration, a spinal tap and an EEG. The bone marrow biopsy and the spinal tap showed that the percentage of leukemia in Alex's bone marrow has increased. This distressing news along with the news from last week that Alex has some heart damage to his left ventricle due to the chemo drugs is a lot for Sheila and Doug to handle. The results from yesterday's EEG won't be available until Monday and that will let Dr. Wells know if Alex's heart damage has progressed at all.
Because of yesterday's findings of increased levels of leukemia, Alex is now on an oral chemotherapy drug at home (taking 2 pills a day). This will increase his vulnerability to infection and the medical staff at Texas Children's Hospital have emphasized that Alex should not be in large crowds nor taking any health risks before his bone marrow transplant.
Sheila, Doug and Alex plan on leaving for Houston on Thursday, August 28th and being admitted to Texas Children's Hospital on Friday, August 29th. First, Alex will receive extremely large doses of chemotherapy at Texas Children's Hospital (5 times the amount of chemo that he has had in Austin). Then he will receive full-body irradiation at MD Anderson two times a day for 3 days (15 minutes each time). Alex will use "Kangaroo Transport" to and from MD Anderson but Alex's daily residence will be Texas Children's Hospital. The actual bone marrow transplant is scheduled to take place on Friday, September 5th at Texas Children's Hospital.
Alex's bone marrow donor has been chosen by Texas Children's Hospital. This person was one of the 5 out of 6 matches located and he or she is already being prepared for transplant (harvesting of bone marrow is occurring). The recipient and family cannot know who their donor is nor where this person lives. They may send a letter to the donor (via the hospital) one year after transplant. The procedure of taking the bone marrow from Alex's donor will most likely be done on Thursday, Sept. 4th and then the bone marrow (about one cup in quantity) will be flown to Texas Children's Hospital, in the case that this person is not local. It will take several weeks to know if the bone marrow transplant was successful and if grafting is occurring. Alex's stay at Texas Children's Hospital should be 4-6 weeks, then he would be released to The Ronald McDonald House in Houston to stay for about 100 days.
When the Dierkings drove to Houston this past Monday to visit MD Anderson and to talk to the transplant coordinator and team at Texas Children's Hospital, they also got to visit The Ronald McDonald House where they will be staying. One parent only will be allowed in the hospital room with Alex and the other can stay at The Ronald McDonald House. There is a special area for bone marrow families at this house with a shared kitchen. However, Sheila and Doug will be incurring a daily expense for the use of The Ronald McDonald House which insurance does not pay.
Speaking of health insurance, this is a very emotionally charged subject right now for Sheila and Doug. Their family has been and is currently covered under Cigna, Sheila's health insurance, BUT... her place of employment is changing to Blue Cross Blue Shield health insurance effective September 1st. Sheila and Doug were originally told that Cigna would cover a bone marrow transplant performed at Texas Children's Hospital but Cigna is now saying that they will NOT cover any aspects of a bone marrow transplant at Texas Children's, only at MD Anderson, but the majority of Alex's care needs to occur at Tx Children's, therefore, for 3-4 days Cigna will pay nothing and the expenses for Alex's care just for those first 3-4 days could be $70,000! My understanding from Sheila is that it is not possible for Blue Cross Blue Shield coverage to start 3-4 days early and since time is of the essence with Alex, delaying until Sept. 1st to start everything in Houston is not an option either. Doug and Sheila have found Cigna to be extremely uncooperative and now have the Texas Children's Hospital Legal Department actively involved.
The out-of-pocket, non-reimbursable expenses for Alex's family seem to be coming at a rapid rate. For instance, they have just found out that Alex will have to undergo a neuropsychiatric evaluation when he arrives in Houston, and these results will be compared to another neuropsyche eval one year later to see if there are any major cognitive changes for Alex after treatment. The first evaluation is 6 hours long, costs $275 per hour and, regrettably, is not covered by insurance.
Yesterday, while Alex and Sheila were at Austin Children's Hospital, Doug was at Laurel Mountain Elementary meeting with Alex's newly assigned Homebound Teacher (Cindy Trip), his 2nd grade teacher at LME(Dianne Henson), and other school personnel to discuss how Alex will receive the 2nd grade curriculum at home and in the hospital this year. Cindy Trip will come 4 hours a week until they leave for Houston and then the Dierkings have paperwork to take to the Houston ISD in order to continue the Homebound schooling with Alex there. Alex's first session with Mrs. Trip went very well today.
As soon as Sheila and Doug have an address and phone numbers in Houston, I will share that information with you. Doug plans on continuing to teach (3 graduate level Negotiations classes and 1 undergraduate honors class) at UT in Austin most Tuesdays, Wednesdays and Thursdays this fall. He plans on driving back and forth. Sheila and Doug will really be needing the support of family and friends more than ever as they continue this journey with Alex in Houston.
With much appreciation for all of you,
Charisse Hughen
P.S. Alex was very excited to have a long phone conversation last night with his 9-year-old half-brother, Dennis, who lives in British Columbia! They discovered they have some things in common!
Wednesday, August 6, 2003 8:40 PM CDT Dear family and friends of Alex,
Sheila and Doug received bad news yesterday. The results came back from Alex's bone marrow aspiration, which was done Monday, Aug. 4th, showing that Alex was indeed NOT in remission. This is devastating news and certainly not the ideal conditions in which to approach a bone marrow transplant. There is a possibility that Alex never was actually in remission because his last bone marrow aspiration might have been done too early and done when Alex's counts were too low, therefore, possibly eliciting a false reading.
Based on this most recent news, no more chemo will be done before heading to Texas Children's Hospital for Alex's bone marrow transplant and the date to go to Houston has now been moved up to about 3 weeks from now.
Alex's family has just found out that Alex has a half brother (same mother, different father) who lives in British Columbia (about 350 miles outside of Vancouver). His name is Dennis and he is 9 years old. Sheila and Doug have talked to Dennis's parents who adopted him. They were very nice on the phone and they are going to have Dennis tested for a possible bone marrow match for Alex this week. Alex was extremely excited to learn that he has a brother!
The Dierking family plans on being home for the duration of the next 3 weeks until they travel to Houston. Alex loves playing and doing different activities with his friends and his parents want him to have as much fun as possible for the next 3 weeks. So if you can call first and then be flexible to possible changes, the family really appreciates the continued friendships Alex has with his little (and big) buddies! Alex is having a difficult time dealing with the fact that he will not be starting 2nd grade at Laurel Mountain Elementary on the first day of school, Monday, August 18th. We all could imagine how hard that would be for a 7 year old to understand.
The best way to reach Sheila and Doug will be at their home number (512)258-0967 or their cell phone (512)773-0828.
These past two days have been a particularly stressful and sad time for Sheila and Doug as they waited for what seemed an eternity for the results of Monday's bone marrow aspiration and then as they learned the news they so dreaded hearing. Please make sure that the individuals and the many church prayer groups who are praying for Alex know of his current status. I know Alex is held in the hearts of so many and needs extra support and prayers now.
Blessings to each of you,
Charisse Hughen
Friday, August 22, 2003 2:56 PM CDT To Alex's famiy and friends,
Yesterday, Sheila and Alex went to Austin Children's Hospital for another
bone marrow aspiration, a spinal tap and an EEG. The bone marrow biopsy and
the spinal tap showed that the percentage of leukemia in Alex's bone marrow has increased. This distressing news along with the news from last week
that Alex has some heart damage to his left ventricle due to the chemo drugs
is a lot for Sheila and Doug to handle. The results from yesterday's EEG won't be available until Monday and that will let Dr. Wells know if Alex's
heart damage has progressed at all.
Because of yesterday's findings of increased levels of leukemia, Alex is now on an oral chemotherapy drug at home (taking 2 pills a day). This will
increase his vulnerability to infection and the medical staff at Texas
Children's Hospital have emphasized that Alex should not be in large crowds
nor taking any health risks before his bone marrow transplant.
Sheila, Doug and Alex plan on leaving for Houston on Thursday, August 28th
and being admitted to Texas Children's Hospital on Friday, August 29th.
First, Alex will receive extremely large doses of chemotherapy at Texas
Children's Hospital (5 times the amount of chemo that he has had in Austin).
Then he will receive full-body irradiation at MD Anderson two times a day for 3 days (15 minutes each time). Alex will use "Kangaroo Transport" to
and from MD Anderson but Alex's daily residence will be Texas Children's
Hospital. The actual bone marrow transplant is scheduled to take place on
Friday, September 5th at Texas Children's Hospital.
Alex's bone marrow donor has been chosen by Texas Children's Hospital. This person was one of the 5 out of 6 matches located and he or she is already
being prepared for transplant (harvesting of bone marrow is occurring). The recipient and family cannot know who their donor is nor where this person lives. They may send a letter to the donor (via the hospital) one year after transplant. The procedure of taking the bone marrow from Alex's donor will most likely be done on Thursday, Sept. 4th and then the bone marrow (about one cup in quantity) will be flown to Texas Children's Hospital, in the case that this person is not local. It will take several weeks to know if the bone marrow transplant was successful and if grafting is occurring.
Alex's stay at Texas Children's Hospital should be 4-6 weeks, then he would be released to The Ronald McDonald House in Houston to stay for about 100 days.
When the Dierkings drove to Houston this past Monday to visit MD Anderson
and to talk to the transplant coordinator and team at Texas Children's
Hospital, they also got to visit The Ronald McDonald House where they will
be staying. One parent only will be allowed in the hospital room with Alex
and the other can stay at The Ronald McDonald House. There is a special
area for bone marrow families at this house with a shared kitchen. However,
Sheila and Doug will be incurring a daily expense for the use of The Ronald
McDonald House which insurance does not pay.
Speaking of health insurance, this is a very emotionally charged subject
right now for Sheila and Doug. Their family has been and is currently
covered under Cigna, Sheila's health insurance, BUT... her place of
employment is changing to Blue Cross Blue Shield health insurance effective
September 1st. Sheila and Doug were originally told that Cigna would cover
a bone marrow transplant performed at Texas Children's Hospital but Cigna is
now saying that they will NOT cover any aspects of a bone marrow transplant
at Texas Children's, only at MD Anderson, but the majority of Alex's care needs to occur at Tx Children's, therefore, for 3-4 days Cigna will pay
nothing and the expenses for Alex's care just for those first 3-4 days could
be $70,000! My understanding from Sheila is that it is not possible for
Blue Cross Blue Shield coverage to start 3-4 days early and since time is of the essence with Alex, delaying until Sept. 1st to start everything in
Houston is not an option either. Doug and Sheila have found Cigna to be
extremely uncooperative and now have the Texas Children's Hospital Legal
Department actively involved.
The out-of-pocket, non-reimbursable expenses for Alex's family seem to be
coming at a rapid rate. For instance, they have just found out that Alex
will have to undergo a neuropsychiatric evaluation when he arrives in
Houston, and these results will be compared to another neuropsyche eval one
year later to see if there are any major cognitive changes for Alex after
treatment. The first evaluation is 6 hours long, costs $275 per hour and,
regrettably, is not covered by insurance.
Yesterday, while Alex and Sheila were at Austin Children's Hospital, Doug
was at Laurel Mountain Elementary meeting with Alex's newly assigned
Homebound Teacher (Cindy Trip), his 2nd grade teacher at LME(Dianne Henson),
and other school personnel to discuss how Alex will receive the 2nd grade
curriculum at home and in the hospital this year. Cindy Trip will come 4
hours a week until they leave for Houston and then the Dierkings have
paperwork to take to the Houston ISD in order to continue the Homebound
schooling with Alex there. Alex's first session with Mrs. Trip went very
well today.
As soon as Sheila and Doug have an address and phone numbers in Houston, I
will share that information with you. Doug plans on continuing to teach (3
graduate level Negotiations classes and 1 undergraduate honors class) at UT
in Austin most Tuesdays, Wednesdays and Thursdays this fall. He plans on
driving back and forth. Sheila and Doug will really be needing the support
of family and friends more than ever as they continue this journey with Alex
in Houston.
With much appreciation for all of you,
Charisse Hughen
P.S. Alex was very excited to have a long phone conversation last night
with his 9-year-old half-brother, Dennis, who lives in British Columbia!
They discovered they have some things in common!
7/24/2003 Dear family and friends of Alex,
Sheila just called me to say that the preliminary report that came back to the doctor today, from Alex's bone marrow aspiration and spinal tap performed yesterday, is that Alex's leukemia IS IN REMISSION!!! This is such great news and will be so beneficial for Alex when he does have his bone marrow transplant. As you can imagine, Sheila and Doug are very happy after going through a difficult night of waiting for these results.
Alex is still home and hopes to remain there until Wednesday, July 30th, when he would return to Austin Children's Hospital for his 4th round of chemo (this one will take longer - close to a week). The family continues to hope that Alex will be at home to celebrate his birthday on Tuesday, July 29th!
I know all of you join Sheila, Doug and Alex in the celebration of their wonderful news today! Your support, good wishes and prayers are needed and greatly appreciated as they continue on this long journey.
Grace and Peace,
Charisse Hughen
Thursday, July 24, 2003 9:58 AM CDT This page has just been created. Please check back for additional updates.
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