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Maddie's Update Page
Last winter CWC senior Madelyn Rens was diagnosed with aplastic anemia, a disorder which inhibits her body's ability to produce healthy blood cells. She had a bone marrow transplant at Children's Hospital in Milwaukee on March 21st. We are thankful that her brother Conrad (freshman) was a suitable match for the BMT. We know that many of you are praying for Madelyn and her family. To keep tabs on her progress and medical updates, feel free to check back here to see what is the latest information as received in the office via email from Don, Lisa, and Madelyn. The family greatly appreciates your words of encouragement and prayers through this difficult time!
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One Year = Thanksgiving!!
March 21 marked the 1 year anniversary of Madelyn's BMT. Hard to believe that a year has gone by. This journey would not have been possible without our church and school society family. The encouragement of thoughts, prayers, visits, phone calls, and meals were overwhelming. We were so focused on what had to be done, and so many stepped in and made the load SO MUCH LIGHTER. As parents, the support to Maddie was the most important. Maddie was a trooper during the whole process, and she often said, especially on the bad days, I can feel the prayers. She especially has felt them returning to school this fall and participating in her passion BASKETBALL. It was God's blessing and your prayers that made this possible. She and her team were blessed with a great season and it was sad to see it end but such a miracle to see her on the court. Also, to be in school and keep up with her studies and be SOCIAL, she does not take it for granted.
On March 19, she went in for the 1 year post workup and all looked great!! They told us once again, that this is the miracle of a matched sibling transplant, very few complications. We will have the final results on March 24 and these results will tell us if she will be able to stop her drug regiment and start to re-immunize her baby immune system.(Her body will be 18 on May 1 but her immune system is 1) She does not have to return for 3 months. Other than fighting the bugs out there, she has been doing well. She keeps on going and is starting to make plans for after graduation in May.
Although, a tough journey has come to an end there are days of reflection and still worry. As parents we all have these days. We pray that we continue to return to a normal family life and that we will be able to return the christian love and support that we have received.
Thank you for the support for Conrad during the harvest/transplant and recovery. It meant so much to him and us, that he had so many remembering him during this difficult time. Also, the continued support and acceptance of his Tourettes. It lightens the anxiety for Conrad and our family. This cross to bear for a teenager is a hard one and we ask for your continued prayers.
Also, we thank all of you for the support of prayer for our son Tyler. He has been battling Guillian Barre since September. He returned home the end of December and continues to recover. It is and will be a long process. We especially thank Pastor Jeff and Andy Westra for the many visits to see Tyler. This was such a witness to him of our Christian Church Family. Please continue to pray for Tyler. There are many changes that he needs to accept and to look for God's leading in dealing with the many changes that he will continue to be faced with.
This thank you has been a long time coming. Know that it has been on our minds and hearts for some time. For so long it just seemed that we were in need of extra prayer and support, with the many trials that our family was faced with. We are so grateful, that it will always be hard to put into words. We are where we are today because of the work God did in all of you by being our blessings.
"Bless be the tie that Binds", Love, Don & Lisa, Tyler (Nikiah & Avery), Julia & Luke, Mason, Madelyn and Conrad Rens
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Update for February 22nd
With Maddie's anniversary date of transplant (March 21) just around the corner, I thought I should update her site to let you know what has been happening since Nov.
After her clinic apt on Nov 6, she went to one time a month for clinic. This was a huge relief. Her counts were stable enough to go once a month with calling in weekly with how she was feeling and so forth. She continues to fight the grud/bugs out there. With no immune system, it is hard for her to fight the common illnesses. Her immune suppressants were stopped The end of Jan. So hopefully she can stay off and her immune system can start to rebuild itself. This will be a long process, and she needs to be careful with getting sick and taking care of herself. She has been attending school and playing basketball. Maddie is keeping up with it all, but she can tell that she is still recovering and her body gets tired. But BB was so important for her, with this being her last year to play. She LOVES the game and it is PURE joy to see her out on the court and the Crusader Ladies are having a great, fun filled season. Tonight is her last official regular season game at CWCS. It brings tears to my eyes to think that this part of her life is coming to a close, nowing how much she missed over her 4 years of high school with knee injuries and her illness last year. But we are so thankful for her recovery and healing, and that she was able to return to the court.
It is hard for us to believe that we are going to Milw once a month. We look back at this time last year and we were going 3-4 times per week. Also, we are sooo thankful for the mild winter last year. We can't imagine traveling this winter as much as we did last, with the weather that we are having. But, the standing joke in our house now is, "it's ok, Maddie has platelets now". God has blessed us so, with many things to make this journey bearable and your prayers were a HUGE part in aiding us to do what had to be done inorder to walk this journey with Maddie.
Maddie's next clinic apt will be during spring break. She will have a whole batteries of tests to see where her bone marrow is at and what cells she has and so forth.
In honor of all of the support, and making it to one year post BMT, our family will be serving lunch to the middle and high schoolers on March 12.
Also, we want to express a thank you for all the support for Conrad during this past year and our son Tyler who continues to recover from a serious chronic form of Guillian Barre since Sept.
Will update after Mar clinic apt.
Blessings to all,
Don, Lisa and Maddie
Update for Tuesday, November 6
Maddie went to clinic on Tuesday the 6th. Labs and checkup were good. Although, yesterday she came home sick. Flu symptoms and feeling pretty crumby. Watching her close and need to follow up with her Dr today. Prayers for good health and strength. BB starts Mon and this girl is focused and NEEDS to play, among keeping up with school and what normal Seniors do in high school.
Update for Tuesday, October 30
Maddie had to begin taking her immune suppressants later this past week. Also, the dosage was upped. She was showing signs of upper GI graft versus host disease. This means she isn't en grafted enough to go without the immune system being suppressed. She is once again more susceptible to the "bugs" out there.
With basketball starting, and the school work/attendance, please pray that she will be able to stay healthy and keep up. She needs to push fluids and eating in order to keep up her strength (her appetite has been very poor the last few weeks).
Although, we are this far out from transplant and she is looking great, we still need to be careful and patient. This week was a reminder once again, how serious this whole thing has been and how long it can take to be considered well. Hard for all of us to accept, especially a 17 year old, who wants to resume life and go forward.
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Update for Wednesday, October 24th
Hello everyone. It has been a while. With school starting and life going back to being some what normal, my updates have been slacking.
At Maddie's last clinic appointment, Oct 9, her WBC 7, RBC 4.2, Hmg 15.1 and PLT 192,000. Yes, she is engrafted well.
Since school started she has battled different bugs and had us running quite often to urgent care and the Doctor. Two weeks ago she had a partial collapsed lung and this took her out for a few days. Being in school is important and she doesn't want to miss anything. Also, she had a stress fracture in her right leg at mid volleyball season and this took her out. It was very disappointing to her but wants to be healed for basketball. To play BB this year is so important to her, it has been her goal since last December. Opening game is on Nov 20 at CWCS at 6PM. We are praying for all to go well so she can play as she starts to condition.
We thank you soooo much for all of the prayers and encouragement through this last year. Especially, in these last few weeks with our oldest son Tyler, in ICU for 6 weeks with severe guillian barre disease. Also, Conrad's Tourettes have been extreme. Please continue to pray that we will all continue to look upward for God's leading and grace to take life day by day and also, to remember the many people/families that are going through worse things than us. To keep things in perspective.
We go to clinic again on Nov 6. We go once a month now. Sunday was 7months out from BMT and Maddie stopped her immune suppressant drugs this Tuesday. So we are hopeful that her immune system will start rebuilding and help in fighting off the "bugs" going around especially when the true flu/cold season is out there.
Blessings to all,
Don and Lisa and family
Update for Monday, August 6 - Day 136
Counts are fabulous, and everything is going well. We will be going to clinic now every other Monday after next week. We are so grateful for an awesome recovery so far, and and ready to continue normal life. School is starting soon, and practice for volleyball begins next fall, and Maddie is ready to go. Thanks to all of you for continued prayers and suport--this is what has helped her most in her recovery.
Update for Mon, July 17 - Day 117
Update for Tuesday, June 5 - Day 77
Counts, WBC 3.3, Hmg 12.3, Plt 178,000. Maddie has her PIC line out as of Fri, has to drink a lot on her own. Her kidney panel showed she is doing it. So we go to Dr next Tues. All is looking good. She is going to play basketball tonight. She is so pumped, it puts a smile on all our faces to see her reentering normal life. :) Thanks for all the continued support.
Update for Tuesday, May 22 - Day 63
Counts down! WBC 2.7, Hmg 11.7, Hmt 33.7, Plt 130,000. Also, her kidney and liver panel was quite high, needs to drink more. Has been feeling yuck the last few days. So she has till Thur, if no major change PIC line will go back in and possible hospitalization.
Update for Tuesday, May 15 - Day 56
We went to clinic again today, and Counts are GREAT! WBC 4.7, Hmg 12.1, Hmt 35.2, Plt 196,000!!!!!!!!!!!!!!!!!!!!!!! Can you say AMEN! Everything else looks good as well, so the PIC line was removed. Sat will be Day +60, hard to believe this much time has passed already.
Clinic again this week showed stable counts. Madelyn still needs to maintain intake of fluids for kidneys. Everything seems to be going well. She is playing basketball and loving it, and starting volleyball again this week!!!
Thanks, for the continued prayers, they are still coming, along with cards and meals. Everyone has been truly a blessing to us.
Update for Friday, May 11 - Day 52
We are more than halfway to day 100. Tuesday we went to clinic and things are all good--WBC 4.8, Hmg 10.9, Plt 170,000. Wow! Normal counts almost. Blood pressure has been a problem, The doctor Dr put her on a med, and it has worked so no clinic today. Yeah! We're working on getting the PIC line out, but IV fluids have to be done first. She lost 7 lbs this past week, so eating and drinking have to be a priority inorder for the PIC to come out.
Prayers for continued recovery and the mind set to get her studies done and strength to do the things she loves for her Senior year.
Update for Friday, May 4 - Day 44
Madelyn was able to attend the Junior/Senior Banquet on Friday night. God is GREAT!!
Update for Tuesday, May 1 - Day 41 - Madelyn's Birthday!!
Counts, 3.1 WBC, RBC 3.22, Hmg 9.7, Plt 162,000. Everything looks good. Counts are excellent at this time and got rid of two more meds. Also, she got her wig. It was a happy birthday for Maddie.
Update for Monday, April 30 - Day 40
Today is 40+ from transplant. Tomorrow is clinic. Friday 4/27 clinic, counts were 3.1 WBC, Hmg 9.3, Plt 135,000, ANC of 1300. Good news all around. Dr is very pleased. Keeping her healthy, away from bugs is the biggest thing.
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"Transplant Day" Recap
As a CWC family we want to continue to lift up and remember the Rens family following Madelyn's bone marrow transplant yesterday at Children's Hospital in Milwaukee. Her donor was her brother Conrad. We have wrapped up our 24-hours of prayer, wiht all slots filled between 6:00 AM Wednesday and 6:00 AM today. This is awesome!!
We'll continue to post updates today as we receive them here on the home page, and then will move those updates to "Madelyn's Page", which can be accessed in the lower right corner of the home page.
This has been a great way for all of us as brothers and sisters in Christ to unite in prayer!
BMT Update #2--7:14 PM Wednesday
The bone marrow transplant began at 4:25 and was finished up at 6:00 PM tonight. All went well and we hope it will continue to. Maddie's blood pressure is up, but that is expected. Now the waiting begins and the patience has to be practiced for the wait.
Conrad is sore, but doing good. The doctor is going to keep him overnight and keep him comfortable.
What an awesome day, for ALL the prayers. A true testament of the power of the love of God's people. He has created a grateful heart in all of us today.
Love,
Don & Lisa, Mason, Maddie, & Conrad
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BMT Update #1--11:53 AM Wednesday
Today is day 0 and Maddie is doing ok. She is having some pain and nausea, but this is to be expected. She's having platelets right now and waiting for infusion of Conrad's marrow starting around 6-8PM tonight.
Conrad went in to surgery at 8AM and out at 10:30, all went well harvesting the marrow. He is on the 5th floor on the HOT unit next door to Maddie. He is feeling ok, with pain in the hip areas and sleeping off the anestetic.
So far so good.
Thanks for the prayers to all. We are feeling them today. Pray for Maddie's spirits and nerves.
Don & Lisa
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Update for Monday, March 20th
Friday morning started the preconditioning for Transplant. All went well till Sunday, when her high blood pressure was a struggle to keep under control. Maddie also lost her appetite and started to feel ill. Today's chemo is done and immune suppression completed, but more meds to continue and the effects of all the IV meds are delayed. Please continue to pray, for reality has set in and she is very sick tonight.
Update for Thursday, March 15
After 3 months of tests and waiting, I will begin my treatment for my Bone Marrow Transplant, Friday, March 16. Transplant harvest will be on March 21 from my brother Conrad. I will receive the the transfusions of bone marrow later that day. Then we wait for my body to accept, can take up to 21 days.
I want to thank all of you who have remembered my family and I. The encouragement that I have received is overwhelming, especially for a 16 year old. The calls, cards, visits, gifts, flowers, meals have been a reminder of the love and goodness of our friends and family. Most of all the prayers, our Christian family is what keeps all of us going, to see this through.
Please continue to pray for guidance for my Doctor and his team. Also, for the patience, for there is more waiting.
Thank you from the bottom of my heart and God Bless You All.
Maddie Rens and family
Update for Friday, March 9th
This week clinic on Tuesday, they checked counts and back today Fri, 3/9 to do workups and platelets for Maddie. The doctor told us will have final reports from NY over the weekend, Tues, 3/13 we will finish pre-transplant workups for Maddie, conference meeting to discuss treatment plan on Wednesday, and go back for pic lines to be put in both arms and admitted. Thursday (-5 day), 6AM conditioning for transplant begins (chemo, etc). March 20, (day 0) is BM harvest from Conrad at 9AM and transplant for Maddie later that day. The days after this are counted in positive numbers. By day 21 from transplant, we should see signs of transplant taking.
We are moving forward!! Treatment will actually start three months on the day from her diagnosis. We are ready to get going, but nervous and still so much uncertainty. But we THANK YOU ALL for your thoughts and prayers. The encouragement is so powerful and has made these past e months bearable.
Although, it has been a long hard wait, the hard part is about to begin, please continue to remember Maddie. We will keep you updated. You can always check the CWCS website for updates and once admitted and settled she will have a website at the hospital and you will be able to keep up on her progress and send emails.
Visitors are welcomed! The Dr has asked us to tell our family and friends not to visit if exposed to any illnesses.
Address for visiting and sending mail:
Children's Hospital of Wisconsin
8701 Watertown Plank Road
HOT Unit 5th Floor
Milwaukee Wi 53226
Patient Maddie Rens
Phone # to her room will be assigned once admitted/we will send later.
Again thank you and God bless.
Don, Lisa and Maddie (Conrad and Mason)
Update for Friday, March 2nd
Maddie's counts, on Friday: WBC 1.9, RBC 1.96, Hmg 6.8, Hmt 19, Plt 13, ANC 200. Maddie's counts fell quite a bit since Wednesday, and they gave her two units of RBC, one unit Plt and a drug to possibly help boost her ANC. The transfusions took five hours, so it's a long day for her; she is given Allegra and benadryl for allergic reactions, so she sleeps most of the time.
The doctor is getting nervous with an ANC this low, as 200 is the panic ANC number. He gave her a drug that chemo patients get to help boost white counts. We are close to going to transplant, trying to keep her "healthy". Her tests are in NY being analyzed for her pre-conditioning treatment for transplant., (They went out sooner than we expected). The doctor is hopeful that we are to have answers soon.
Thank you for the prayers on Maddie's behalf. It is greatly appreciated by Don and I!!! She is being a strong young woman. She has grown up so much in these past few months. She is experiencing more than most grown adults do--it's a lot for her to handle. Although, she has mood swings, which she is entitled to--sometimes just handling it quietly is her way of dealing with it and we respect that-- yypical for a teenager. But Maddie is our "spunky munk". When we see a little of her spunkiness and a smile, it is so treasured. We're looking forward to more of those days.
Please continue to pray for strength and acceptance of what is yet to come. Also as parents/family, that we will stay strong and be what Maddie needs in order to get through this. Prayers for health for all of us as well. My back is giving me some trouble. Prayer of thanks--Conrad is feeling better and his TICS are minimal at this point.
Blessings to all of you and your loved ones,
Don, Lisa, Maddie, Mason and Conrad
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Click here for previous entries from January and February 2007
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