Madelyn's Archive - Central Wisconsin Christian School

Here is a compilation of notes on Madelyn from January and April of 2007.

Update for Thursday, Apirl 26 - Day 36
Mon, Day 33

Clinic, showed counts WBC 2.4, Hem 8.3, Plt 75,000, ANC 1100. Everything is looking good. Doctor is very happy with the way things look. Decided to do clinic twice this week.

A very happy day for us all. (She made 40,000 Platelets since Fri, this is the first!!!!!)

Day 34-36

Hanging out at home, resting. Spirits are good. Suppose to go to clinic Thur, but pushed it to Fri, so I can go to Music Festival in Brookefield. Pray for me, I came down with a chest cold Wed. Maddie CANNOT get this. Will let you know what Maddie's lab results are on Fri.

Update for Friday, April 20 - Day +30

Maddie's labs today show her WBC at 2.9, (Wed, Clinic, WBC1.7). Also, that she is starting to make platelets on her own. This is great news!!! Praise be to God for His mighty work in this whole process.

Have a wonderful weekend.

Don, Lisa and Maddie

Update for Monday, April 16 - Day +26

WE ARE HOME!!!!! 36 days total at CH.

Maddie's counts are still low, but Dr felt ok to go home and he put Mom in charge. Let me tell you it is a lot to get organized. We got home at 12:30 and we are just settled and ready to call it a day.

Please visit, hospital rules still apply. Do not come to visit if sick or exposed to illnesses of any kind. Also, you will have to mask and visits will not be able to be long ones.

We go back to clinic on Wed and check counts. Dr did say to Maddie, you are out, but most do return to the hospital. Maddie is determined not to return.

Thanks again, for EVERYTHING.

Don, Lisa and Maddie and Boys

Update for Friday, April 13th - Day +23

Maddie did not come home today.

ANC down Thur(329), and more on Fri (280). Where as on Tues and Wed she was above 750. Has to be 500 or above for three days inorder to go home. Hopefully, Mon/Tues. Praying that her counts will come up. She isn't feeling that great so being here isn't so bad, not too disappointed about not going home.

Thanks again for the prayers.

Don, Lisa and Maddie

Update for Thursday, April 12th - Day +22

Hey guys, it's me again. Woke up a little early this morning. It's about 5:45 and I had to take another dose of pills so i thought this would be a pretty good oppurtunity to send an email. So, it's my last day here!! I honestly can't believe that it's gone this fast. I thought that I would get bored or lonely or homesick, and i do miss home but i can't complain. It really feels like it's gone fast which is good so yea that makes me pretty happy :). But I'm even more happy to be going home. It will be so much easier to see people and just to be home will help with recovery. I'll still have to go to Milwaukee 3 times a week but i figure that's alright because I'll be at home! Sorry that I'm just sort of rambling but once again i wanted to say thank you for all your prayers and cards and words of encouragement that i have received through all this.. You are the reason I'm able to go home tomorrow, and I'm thankful every day. I love all of you and can't wait to be able to see eveyone!

God Bless and see you soon!

Love,

Maddie

Update for Wednesday, April 11th - Day +21
Time has gone by so fast. Maddie has been a patient at CH for 27 days. Everything is going well. We are anticipating to be home this Fri afternoon. Her counts are the same as yesterday, this is good. Also, sleeping good the last few days, this is an answer to prayer. Her pain is controlled, so coming home will be an added thing to recovery. We will be going back and forth for clinic 3 times a week, but at this point coming home will add to recovery. The same restrictions will be in place for home as in the hospital. Visitors are welcome, but please do not come if you are sick. Also, washing hands and wearing masks. Maddie will not be allowed to leave the house as well.

Thank you for everything. See you all soon.

Don, Lisa & Maddie

Update for Tuesday, April 10th - Day +20
Hello again. It's Maddie. It's about 7:45 on Tuesday and I'm pretty much just hanging out right now so i thought I'd send a quick little email. So far everything is going really well this week. I was in a lot of pain but now all my meds have kind of been switched and we've been able to stay on top of that. And now after almost ten days of not sleeping, i slept the last two nights in a row. So that was pretty big,. Counts today look pretty good. ANC was 732 which is more than double from yesterday so thats pretty amazing. It has to stay at at least 500 for about 3 days for me to be able to go home this weekend. So right now it looks like that is very possible. Once again I want to say thank you for the prayers, cards, emails, and visits. I feel like i'm doing really well and i know it's because of everything that everyone does for me. There is no way I would be getting through all without everything you've all done. I can feel your prayers daily and it feels awesome :) So thats about it. Have a good day and i hope to see everyone soon!!!! Bye!

Love

Maddie

Update for Wednesday, April 4th - Day +14

Everything is going well. Maddie is very tired, has insomnia from the steroids. Dr feels far enough out from the serum sickness that steroids were discontinued Tues. Slept about 5 hours Tues night, the most in a week. Her body is achy still, cells are working, so she will be more sore. Increased her morphine pump and able to get comfortable. Her counts registered a little on Tues(+13) and Wed(Day+14), so Dr ordered a manual difference (too much info, I know), but what it showed is that she is "starting" to engrafted. She has a long way to go but she is headed in the right direction. AMEN! Her hair started coming out last Thur, at first it upset her, and by the end of the day, she wanted to shave it off. Fri her nurse and Julia did. I have to say, she pulls off being bald quite well. She is very cute and she says it was very liberating and feels much better.

Thank you for the constant words of encouragement, it is helping us get through the days. We feel so loved. I hope some day we will be able to put it into words of gratitude to all of you. Have a blessed Easter. What amazing gift to celebrate, our Savior, Jesus Christ!

Love to all,

Don, Lisa, Maddie, Conrad and Mason

Maddie's Update for Tuesday, April 3rd-DAY +13
Hey it's maddie again. just wanted to hello to everyone and hope that you are having a fantastic time in AL. Things are going pretty good here. I haven't been sleeping due to the steriods i'm on for the serum sickness so they're gonna knock those down so i can sleep the next couple of days. which would be pretty nice.

Anyways thats about all for today. I'm movin up to the 8th floor in a little bit here and my new room number up there is 8514 and phone number is 414-607-5254. Just in case. Well hope everything is goin well and stay safe and say hello to everyone from me and the fam!! I'll keep ya posted the rest of the week!

Lots of love and God Bless!

Maddie

Maddie's Update for Wednesday, March 28- DAY 7
Hey Everyone. Its me. Its about 1:45 in the morning and i cant sleep so i was doing some internet surfing and decided to check out the website. I haven't been on my computer for almost 4 days just because I've been sleeping so much. Today i felt pretty good. Still a little sick but better than the last few days. I also slept pretty much through the night last night so that was good. Anyways, yea i checked out the website and it pretty much brought me to tears. I know how much everyone is praying. I am reminded daily mostly because I can feel it. It's the only reason that I'm able to get through each day. But to be able to read what everyone is actually praying is truly touching. I can't express how much it all really means to me and i just want to say thank you. To everyone in our school, churches, and community for the thoughts and prayers and cards. It's so amazing to me. Some days are really hard and then I'll get an email or totally unexpected card and it hits me that i have so many people that love me. i know sounds a little big headed. but its hard not to feel so loved when i have so many people that are there for me.

Well I'm sure I've wasted enough of your time for now but i just wanted to say thank you again and i miss everyone so much!!!!!!

Alright time for me to try and sleep

Love,

Maddie :)

Update for Tuesday, March 27 - DAY 6
On Sunday, day 4, Maddie's ANC hit 0. This indicates that the Chemo and the immune suppressant drug is working in killing her marrow so that Conrad's can start to grow.

Nights are the worst for the pain and nausea, and she doesn't sleep real well lately. She took some pain meds at 10 PM to get ahead of it Monday night. Also, she is VERY tired all the time now. All of this is to be expected by Day 6, and get worse till Day 12 +/-. The new cells will be trying to grow during this time. Hopefully, by Day 21 we see ANC starting to go up, indicating that the marrow transplant is starting to grafted.

Please pray that she will find comfort in the meds provided and that her spirits will stay up.

Thank you,

Don, Lisa and Maddie

PS being her for almost two weeks now, we have seen a lot of sick kids. Today, one little girl was VERY sick and taken to ICU, it hit me that this is a unit that has very sick kids of all ages and parents/families that are going through what we are, and more. I have been praying for so many up here. I ask that you remember this whole HOT unit patients and the people who work here. It is a very hard/emotional career. It broke me this morning to see this little girl so limp and sick, but when I saw the effects it had on the staff(breaking down), did me in. They do this day after day and remain so faithful to their patients and their families.

Update for Thursday, March 22 - DAY 1
This is how I will address the BMT now. Each day from yesterday will be a positive number.

Maddie had a pretty restless night and was medicated to sleep today. She had one of her favorite nurses again today and Julia was coming to spend the day and evening with her. So I felt comfortable coming home with Don and Conrad today, to help make Conrad comfortable.

We got home at 12:30 and Conrad went to bed. Tired and sore. He woke up with hives, called into the Dr and changed the pain meds and gave benadryl and they are gone. At 7Pm tonight he spiked a temp and it keeps going up. He has the chills, sore throat and headache as well. Not feeling well tonight at all.

Maddie slept most of the day and was feeling pretty good tonight. Praying she sleeps well tonight and feels ok.

Thanks for adding this all to the website and the prayer ritual yesterday, WOW, so amazing when I saw the list today.

Praying for God's grace through these days of waiting,

Don and Lisa

Maddie is not feeling well right now. She hasn't been sleeping for a week now, she can't seem to find a nice peaceful REM. She's having headaches, body aches and nausea. Some of it may be related to the morphine for pain so they are going to try some different pain medications today. The up side is that when the BMT starts grafting, you experience alot of generalized pain...

We ask that no one visit Maddie over this weekend. She really just needs to rest. But, please, keep praying.

Miss you all. Have a Blessed Easter.

Don, Lisa & Maddie

Update for Wednesday, February 28th
We headed back to the clinic again today. Counts were down again, but the doctor wants to wait until Friday the 2nd to transfuse both platelets and RBC. It will be a long day!

Conrad did have an appointment with a neurologist, wheich went well. We are thankful that we have found a doctor who has experience with Tourettes, and she is set to help Conrad get his meds straightened out. Thanks for all of your prayers for both kids!

Update for Friday, February 23rd
Maddie went back to Children's Hopsital today for another platelet transfulsion. We'll be back on the 28th to see where the counts are at.

Also, Conrad has an appointment with a neurologist who specializes in TS next Wednesday. We are hoping to get more help with this for Conrad, who has been having a hard time with the TICS/ Tourette's.

Update for Tuesday, February 20th
We were back to clinic again today. Her counts were WBC 1.9, RBC 2.4, Hem 8.5, Hmt 23.6, Plt 12,000, ANC 400. They gave her aplatelet transfusion, number 8. Also, a CT scan, for a baseline read if she gets sick. All went well, and we were home by 1PM. Have an apt for 2/27, Dr is thinking she will back before then. We will see.

We are working at trying to get Conrad some additional help for his Tourettes. He has been home off and on for the last couple of weeks, and home all week so far. He can't be in school, his vocal tics are so bad. This is such a hard disorder to get experienced help. Please pray that we get some answers soon. He is getting very down and distraught over this. He can't rest or do anything at this point. We need him healthy for himself, and also to go to transplant.

Thank you for your prayers and continued encouragement.

Update for Friday, February 16th
No clinic today. The question on Monday was,"Will Maddie make it till Friday?" She went in on Wednesday and her platelet count was 8,000 & had a transfusion, WBC 2.7, RBC 2.75, Hem 9.6, Hmt 27 & ANC 550. Things are stable here.

We will be going to clinic on Tuesdays, and will continue on one time a week until transplant. The Dr feels that this is ok with all the testing done and we know that we are going to transplant. We know what to look for and to call in, this will determine if we need to go in additional times.

Thank you for all the emails of PRAISE to God for our answered prayers for the boys tests.

We feel a HUGE relief, but patiently waiting to get on with treatment for Maddie. Also, Conrad went in on Wed to his Dr for TS, and changed meds up a little and kept him home two days to rest and yesterday was an ok day. Tics are a little less and not feeling so tired.

We are hopeful that this will help him.

Update for Tuesday, February 13th
Great news!! Both Mason and Conrad's deb tests came back clear. This means Conrad is still a viable donor and there are no complications with either of the boys! We continue to wait on all of Maddie's tests, but this is one hurdle cleared. Praise the Lord!!!!

Update for Monday, February 12th
We headed to Children's Hospital late morning, and again found Maddie's blood counts to be quite low: WBC 1.9, RBC 1.9, Hemoglobin 7, Hematocrit 20.5%, ANC (absolute neutriphil count, to indicate what she has to fight viruses and infections) 494, Plt (platelets) 21,000 (had a big transfusion last Tuesday, and will need more by Friday--hope we make it!)

She had two units of red blood cells transfused, a long process that took 4 hours total. Dr Margolis told her, now that she has some red blood she should feel like a million bucks, knowing how "yuck" she has been feeling.

Sorry, to use a lot of terminology. Many of you have asked what is meant by counts, how the bone marrow failure is known/determined. Her labs plus her marrow biopsies show us that the bone marrow is failing, and it is going down more each week. Her bone marrow is currently empty of the WBC, RBC and Platelets, as her counts show.

Normal is:

WBC 4000-11,0000

RBC 4,100,000 - 5,300,000

Hem 12.0 -15.0

Hmt 35.0 - 45.0%

Plt 150,000 - 450,000

ANC (a calucation of WBC, segs and bands) 1,500 - 6,600

We head back on Friday for labs, platelets and hopefully final results on Conrad and Mason. Also, a CAT scan of her body to have a baseline of her system. This is done because of a low ANC, if she gets sick the CAT scans are compared to locate invections and viruses.

It has been a long week waiting for the boys results. We are all trying to be positive and hand it over to the Lord. Life is in limbo, but we TRULY DO feel all the prayers out there, because there is a calmness that we are feeling through all this.

Please continue to pray for Maddie, for peace and acceptance. That we may remain calm. That the boys may be free of this disease, and Conrad can be the BM donor. (We did hear good news late last week, that if it comes to it...Maddie has great non related BM donor matches in the BM bank, AMEN!!!!) We are so blessed with the Doctor and team that we have working with us. He is consulting with many doctors around the world on Maddie's case due to the fact it is rare and unique, she doesn't have Classic FA, so treatment will need to be developed. So not having Classic FA, is good news, but bad because the regiment of treatment needs to be made.

THANK YOU, for all the prayers, cards, emails, phone calls, visits, flowers, food!!!!!! We are so blessed by all of you.

Love and God's blessings to all,

Don, Lisa, Maddie, Mason and Conrad

Update for Tuesday, February 6th
We had to go in for platelets again today, Maddie started bleeding again, and knew she wouldn't make it till tomorrow.
Also, got back the final report on the test that was sent out to NY (first one was inconclusive, this test is for genetic anemia, Fanconia Anemia/FA. All BMT patients are tested for this, no matter if they show the signs or not. Maddie doesn't have the symptoms of this Anemia other than the Aplastic. It is a genetic disease that causes the bone marrow to go into failure, leading to the Severe Aplastic Anemia. Well, it came back abnormal. So she had a skin biopsy today, that will take 6 weeks for conclusive results. This helps in the meds/treatment that prepares her for transplant. It is more serious, and complicated to treat this to go to transplant. Also, Conrad is her donor, and he had to be tested for this disease as well, Mason too. There is a 1 in 4 chances that they could also have this disease. If Conrad has it, he can not be a donor to Maddie and will also need a transplant. There is no other treatment for FA, other than BMT. We should know results on the boys by Monday.

Continue to pray! Our first prayer was for Conrad to match, second has been for patience. Clarity is was we have been praying for this last week and now, we have it on FA. Pray that the boys will be free of FA, but mainly that we will feel God's presence and leading and his loving, calming hand.

Thank you for all your encouragement and support and PRAYERS! We truly feel them.

Don, Lisa and Maddie, Conrad and Mason

PS Pray for Conrad, his TS has been so bad of late, the anxiety and stress of this doesn't help. His meds have been increased and we are seeing some improvement but not a lot.

Update for Friday, February 2nd
Madelyn received another dose of platelets again today. Test results show that we are now moving ahead toward transplant. Next week workups will begin with both Madelyn and Conrad, with all things currently in motion toward BMT.

Update for Monday, January 29th
Hello everyone--it has been a long weekend. As we said before, the biopsies and tests went well on Friday. Because she couldn't go to winter retreat, we stayed over at Julia's house and went shopping a little on Saturday. Her spirits were really good, which was a real blessing!!

Sunday morning she woke up sick, with sore throat, headache, chills, and fever. We had to go back to Milwaukee to the ER at Children's, and she was admitted overnight. The night was okay, and the fever stayed down since 4 AM. After resting today, we saw the doctor again at 2:00. Labs and blood counts were down, but she was released to go home. We go back again on Friday for clinic, regular lab work, and hopefully final reports on all the tests which were run last week plus the cultures they took yesterday. Thanks for all the prayers and support!!!

Update for Sunday, January 28th
We were at Children's Hospital in Milwaukee on Friday for bone biopsies as we look ahead toward preparing for transplant. The counts had again dropped, with her ANC below 594. While the biopsies went well, it was quite painful. We'll have more results early next week. Sunday we had to go back to Milwaukee to the ER at Children's since Maddie was quite sick. Pray for strength!!

Update for Tuesday, January 23rd
Today we went back to the clinic and things have decline more. The transplant is now going forward, to be scheduled in the next two weeks. She will have another bone marrow biopsy on Friday morning, and will finish up testing for transplant early next week.

Please pray for acceptance and strength. This again has hit her hard. After having hopes up that this could correct itself, it hit really hard today. Thanks again for all your support!

Update for Monday, January 22nd
Sunday Maddie had to go in on Sun for blood counts. Her platelets were 10,000 and hemoglobin and hematocrit fell. She received platelet transfusion and she goes to clinic again on Tuesday.

Update for Friday, January 19th
We went back to the clinic again this afternoon. Most lab work stayed the same from Tuesday, although platelets were down to 20,000. After having a transfusion on Tuesday this is very low. The ANC count also is down; this is an indicator for fighting infections and viruses. We'll go back again Tuesday for labs and probably a transfultion of platelets.

Update for Tuesday, January 16th
We made our Tuesday trip down to Children's. Left at 7am and returned at 3:30. It was another long day. Maddie's labs show that her wbc (white blood count) and hemoglobin are staying somewhat constant the last two visits, but her platelets were 11,000 (normal is 150,000 to 450,000). She had a transfusion and we go back on Friday. This is the lowest her platelet count has been. Her last transfusion was ten days before this, so we are hoping that we can go another 10 days.

Please continue to pray for this process. If Maddie is to get better on her own, this process could go on for months and then still have to address BMT if things don't go up high enough, and how it is affecting her quality of life. Pray for PATIENCE!!!! :):)

Update for Saturday, January 13th
Maddie went to the again Friday morning. Her counts were down quite a bit from Tuesday, but they did not do a transfusion. She will be going to school on Monday and to the doctor again on Tuesday the 16th for labs and we will see where she is at. This is a tiring and frustrating process, but it is all we can do at this time. He body needs to declare what it is going to do. Everything needs to meet the Severe Aplastic Anemia criteria. Her biopsies tell us she is at severe but her blood work is one step above into moderate.

Update for Wednesday, January 10th
Yesterday's lab results show that Madelyn's counts came up some. Improvement wasn't great, but may have also been due to the transfusion she had on Friday. She'll go back to the doctor for another blood count check on Friday. Continue to keep Maddie in your prayers, especially that God will grant her patience as she waits for the doctors to determine the best timing and treatment.

Update for Tuesday, January 9th
Today is another day to go to the hospital for a blood count check-up. Please pray for us as we go through another day, that soon we may know what down what path God is leading the doctors. Thanks for your prayers--it's what keeps us going!

Update for Friday, January 5th
We left for Childrens' Hospital at 7 am today, and started the day with labs again for Maddie. Her counts have again dropped quite a bit, and the doctors gave her a platelet transfusion before returning home at 5:00 following a long day. Tuesday we will go back and check her blood counts again. Patience is what is needed right now, and it is wearing Maddie out. Thanks for your prayers!