Journal History
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Friday, December 23, 2005 11:08 AM CST
Merry Christmas and Happy Holidays.
The Trimpers
Friday, December 9, 2005 6:21 PM CST
Dear Friends,
I said I wouldn’t write again unless there was something new to tell you. Unfortunately, it isn’t happy news.
We found out tonight that Dr. William Krivit passed away yesterday. Dr. Krivit was Max’s transplant doctor in Minnesota. He was the man who told us there was something we could do to help Max. He was also the man who had to tell us about Maddie and Sam testing positive for MLD.
Dr. Krivit was the first to transplant a leukodystrophy patient in the US. He was a researcher and took well documented information. While in New York, Dr. O’Reilly told us how significant Dr. Krivit’s work was and how what he learned helped influence the transplant process. Dr. Krivit thought ‘outside the box’.
He made a tremendous difference for leukodystrophy patients. When we were in Minnesota he was officially retired but still took on MLD patients. He had a passion to beat the disease and great compassion for the families and sufferers. We greatly admired and respected Dr. Krivit.
Wherever we went for treatment, in Grand Rapids, at Duke and even in New York, we heard Dr. Krivit stories. In many ways, he was a legend in the tranplant field - not only for his brilliance but for his personality.
One of our favorite memories was one that took place in an exam room. Dr. Krivit came booming into the room. (He had great presence.) He asked Max how his old man was doing. Max said, “You’re the old man.” Dr. Krivit just burst out laughing. He loved it. He was part doctor and part grandpa.
He was a good man.
Love,
Jane and Jeff
Sunday, November 13, 2005 5:25 PM CST
Dear Friends,
Thank you so much for the support, prayers, words of encouragement and friendship over the past three years. It is greatly appreciated and certainly carried us through our ‘war’.
Surprisingly, we are very private people. We decided three years ago to share the story of our children as a way to keep family and friends informed and spread word about metachromatic leukodystrophy. The site grew from that into a community of people who inspired each other and supported a family.
We are glad we shared our journey, but our grief will be private. As Pastor Jamey said at Maddie’s funeral, we are ready to pull the curtain and try to heal as a family. We do not plan on writing on the site anymore. If for some reason in the future, it feels like it may help or something worth sharing happens, we may write an entry. But our intentions right now are to leave this as our final note.
For those of you who see us day to day, please know that we love to talk about our kids, all three of them. The sound of Maddie’s name makes us happy, and we get tremendous comfort from sharing memories about her. Please don’t be afraid to talk about her.
We just wanted to share one final thought with you all. We can’t tell you how many people told us over this past weekend how inspirational we are. We are glad you were inspired but you MUST know that it wasn’t because of us. We are so very normal. Please be encouraged by the fact that God could inspire using a family led by two average, small town, elementary teachers. Certainly, if He could use us, He can/has/will use you, too.
God really is that good.
Love and thanks,
Jane and Jeff
Parents of Max, Maddie and Sam
Wednesday, November 9, 2005 3:29 PM CST
Dear Friends,
Jeff and I made it home last night. It was good to see the boys but hard to be home where Maddie is everywhere.
Here are the arrangements:
Visitation:
Friday, November 11, 2005 from 2:00-8:30 pm. The family will be there from 2:00-4:00 pm and 7:00 to 8:30. Visitation will be held at the First Congregational Church in Stanton, Michigan.
Funeral:
Saturday, November 12, 2005 beginning at 11:00 AM at the Central Montcalm Upper Elementary School. The school is located at 1488 S Sheridan Road, Stanton, Michigan. There will be a lunch following the funeral at the Central Moncalm Middle School.
In Lieu of flowers, memorial considerations:
Donations can be made to either the Trimper Children Foundation which will be used to fund research in metachromatic leukodystrophy or Caringbridge, a non-profit web site for patients and families.
Please direct any questions to the:
Simpson Family Funeral Home Inc
518 N. Camburn Street
Stanton, MI 48888
(989)831-4000
Hotel Information:
Maxfield’s Inn in Edmore, Michigan (866)-550-8838
Super 8 in Ionia, Michigan (616)-527-2828
Westwood Inn in Greenville, Michigan (616)-754-8734
Also there are several hotels in Mt. Pleasant, Michigan which is 45 minutes north of the Stanton area.
I love the memories of Maddie that were shared in the guestbook. Thank you so much.
Love,
Jane
Monday, November 7, 2005 7:55 PM CST
Dear Friends,
At 7:15 tonight Maddie passed away and won her race. Of course her perfect healing was not the one we prayed so hard for. But she died in our arms with us telling her how much we loved her and how proud we were of her.
We are in a daze right now.
Thanks for all your love, support and prayers. We will post the funeral arrangements when we know what is going on.
Love,
Jane
Monday, November 7, 2005 8:51 AM CST
Update 4:15 pm Nothing new to report. Maddie is still in very rough shape. For me it is a whirlwind of feelings and thoughts, constantly forming and changing. I can move from fear to calm to panic to hopeful very quickly. I am in a constant dialogue with God. I trust. I ask. I beg. I thank. I cry. I ask. I thank. I beg.
My spritual beliefs in constant battle with my earthly realities.
Dear Friends,
It is still a minute by minute existence here. Maddie had a stable night. We are so thankful for that. This morning her blood pressure was dropping again along with her oxygen stat. They just put some fluid into her and it came back up. They also increased her oxygen level on the vent. It is feeling like a repeat of Saturday which worries me that somewhere the bowel is leaking and she may just keep getting hit by toxic substances.
I am so glad you can't see her. She really looks in rough shape. At least the bleeding has stopped.
We will see what today brings.
Love,
Jane
Sunday, November 6, 2005 5:33 AM CST
Update 8:15 pm This is hopefully the last update of the day. Maddie has continued to really hold her own today. The bleeding has gotten better and her stats have remained stable. The transplant doctor on duty this weekend stopped by a little while ago. She said that Maddie did well today and "We aren't out of the woods, yet." I have never been so happy to hear the word yet. This same doctor (who we really like) was talking with us in the early morning hours about an autopsy.
The marathon on the streets of NYC is over but Maddie's is still going. God seems to be running right next to her. I think Jeff and I are way behind, hunched over, sitting on the curb trying to catch our breath.
Update 4:55 pm Nothing has really changed. Thank you, God. She is still bleeding but it has lessened a good deal. Her stats are pretty stable right now. She keeps running.
Update 11:40 am Maddie is staying the same right now. She is still bleeding from her mouth and nose. They keep giving her lots of things to help her clot. Her heart rate has stayed stable and an echo of her heart didn't show anything unusual. She has had two episodes where her heart rate has become erratic. One was at 2 in the morning and another around 7.
The New York Marathon is on the TV. I want her to hear it and us talking about it. It is just so fitting to me. Our girl has certainly been running her own marathon. And I don't think any of these runners on TV can match Maddie when it comes to strength and endurance.
I am so glad I am her mom.
Dear Friends,
I so wish I didn’t have to keep writing updates like this. Again, the doctors are preparing us for the worst. Maddie’s heart rates have been jumping all over the place. She has also been bleeding from her mouth and nose. It has been happening all night.
They think the infection is hitting her body hard and things are shutting down.
Of course, we are still praying. We are still waiting while God and Maddie sort this adventure out like they have done many times before.
Love,
Jane
Saturday, November 5, 2005 11:58 AM CST
Update 9:00 pm I hope this is the last update for the night. Maddie has had a strange day today. Her oxygen level is lower than it has been. She is in the low 90's and they have increased the oxygen level on the vent. Then her blood pressure incident happened. They don't really know what is going on. We are just sitting and watching. Okay, that isn't the whole truth. We ask lots of questions and then ask some more questions.
The reality hasn't changed. God is in charge. He and Maddie are creating the plan. We are just spectators.
Update: 6:30 pm She went on a couple of meds and they gave her a lot of fluid. Her blood pressure has gone up. We are breathing easier and hope the cause of the lower blood pressure is something easy to handle. Thanks for the prayers.
Update: 5:45 pm Maddie is having a crisis. Her blood pressure is very low. They are working very hard at getting back up to an acceptable level. Please pray for her.
Update: 1:00 pm Just a couple of clarifications. Necrotic doesn't mean good news or bad news. It just means the tissue is dead. That can be the lymphoma process of cells dying and new ones growing or it can mean the T-cells attacking. We won't know until Monday (hopefully). We can't do anything until we know.
Saturday, November 5, 2005 8:04 AM CST
Dear Friends,
Maddie is still on the vent. They are weaning her off her sedation meds. This will wake her up a little and she will blow off more carbon dioxide.
We heard a little about the biopsy yesterday. The slides they did look necrotic. Because they were ‘so necrotic’, they could not see the type of cells very well. They are starting again using a different stain. They will work on it over the weekend.
Some things you may not know:
1. Dr. Kurtzberg calls almost nightly to see how Maddie is doing.
2. We share our ICU room with 2 other patients.
3. Some of these kids/babies have nobody here with them during the day and night.
4. On one of our first nights here, one of the other children in the room died.
5. People in New York City are very friendly.
6. But the men do not put the toilet seats down.
7. Every nurse here is young, skinny and pretty (and nice too).
8. I have no idea how to spell necrotic? Neucrotic?
9. Jeff rarely sleeps. And he constantly tells me about this.
10. Maddie’s nails are all painted.
Just some quick little facts. This is what you get for a journal entry when things get boring. But boring is always good in the PICU.
Love,
Jane
Saturday, November 5, 2005 8:04 AM CST
Dear Friends,
Maddie is still on the vent. They are weaning her off her sedation meds. This will wake her up a little and she will blow off more carbon dioxide.
We heard a little about the biopsy yesterday. The slides they did look necrotic. Because they were ‘so necrotic’, they could not see the type of cells very well. They are starting again using a different stain. They will work on it over the weekend.
Some things you may not know:
1. Dr. Kurtzberg calls almost nightly to see how Maddie is doing.
2. We share our ICU room with 2 other patients.
3. Some of these kids/babies have nobody here with them during the day and night.
4. On one of our first nights here, one of the other children in the room died.
5. People in New York City are very friendly.
6. But the men do not put the toilet seats down.
7. Every nurse here is young, skinny and pretty (and nice too).
8. I have no idea how to spell necrotic? Neucrotic?
9. Jeff rarely sleeps. And he constantly tells me about this.
10. Maddie’s nails are all painted.
Just some quick little facts. This is what you get for a journal entry when things get boring. But boring is always good in the PICU.
Love,
Jane
Friday, November 4, 2005 1:28 PM CST
Dear Friends,
More of the same today. We haven't heard any news from the biopsy. It may be today or it may be Monday. They are still weaning Maddie and preparing her to get off the ventilator.
Thanks for the prayers. Please keep them coming. I'll update later if we learn anything.
Love,
Jane
Thursday, November 3, 2005 9:11 AM CST
Update 7:45 There isn't anything new to report. Dr. LaQuaglia, the surgeon stopped by. He is pleased with how she is doing post surgery. Dr. O'Reilly stopped by. He said we should know about the biopsys tomorrow. Maddie is drugged up and resting peacefully. She is still on the vent.
No pee yet. Please keep praying.
The Caringbridge site will be down tomorrow night from 9:00pm - 12:00 am.
Dear Friends,
There really isn’t anything new to report. I just had some time and thought I would take advantage of it.
Maddie had built up quite a bit of fluid while the dialysis was off (for various reasons) over the past couple of days. They are going to remove a lot of that before they try to extubate her. It will probably be another day. She is so peaceful and comfortable that it makes it easy to wait.
I am still hopeful about her kidneys and there is no earthly reason for that. Please keep praying that her kidneys show some action soon. We know He can heal them. We pray He will.
Happy birthday, Don, aka Grandpa up North. We wish we were there to eat some cake with you.
Love,
Jane
Wednesday, November 2, 2005 9:26 AM CST
Update: 6:30 pm There really is nothing new to report. Maddie is still on the vent. She is comfortable and calm. I think they might take her off of it tomorrow.
We haven't heard anything about the biopsy. Hopefully tomorrow.
The doctors are not encouraging about her kidneys. Yet, Jeff and I still remain hopeful. Please help us pray that God's plan is to heal her kidneys. We also pray that the mass is being destoyed. The kidneys are an extra bonus. A huge extra bonus.
Love,
Jane
Hello. Maddie continues to do well. She was awake more than they wanted last night, so they adjusted her meds to make her sleep. She’s fighting all the sedation meds and grabbing the tubes. One doc said, “She’s mad at us. She wants the vent out of her.” That’s my girl. Keep fighting. They will keep her intubated until they remove a plug from surgery. Hopefully today or tomorrow morning. She is also doing “much better than we expected” with her breathing, so they lowered the settings on the vent. Go Maddie! The next big thing will be the results from the biopsy. We should get those in the next couple of days. Whatever they may be, Maddie made it through surgery, we hope she’ll be in less pain and we’re moving again. My sister Cindy and husband Carl came to visit last night. It was nice to be able to celebrate Maddie’s victory with family. What a day.
Jeff
Update: 4:25 pm
Praise God. Praise God. Praise God. Maddie made it through the surgery with no complications what so ever. The surgeon told us straight out yesterday that she could possibly die during the operation. But everything went so smooth.
And more great news. They put the tube in and took over a liter of stool out of her. As soon as they started taking it off her, her breathing steadily improved. They think she will only be intubated over night.
To see her is the most shocking. Her huge belly is gone. She looks so ‘normal’. Touching it reminds me of my post-birth belly. It is all soft, wiggly and jiggly. They took several biopsies of the mass. We will find out results later.
Oh, man. Can you sense the euphoria?? I really have no words to describe what we are feeling. Only tears, smiles and more tears.
Praise God. I can't imagine the conversations He and Maddie are having.
Update 12:30 pm They are getting Maddie ready to go now. We should be leaving in the next 5- 10 minutes. Please pray for Maddie.
Tuesday, November 1, 2005 7:09 AM CST
Update: 4:25 pm
Praise God. Praise God. Praise God. Maddie made it through the surgery with no complications what so ever. The surgeon told us straight out yesterday that she could possibly die during the operation. But everything went so smooth.
And more great news. They put the tube in and took over a liter of stool out of her. As soon as they started taking it off her, her breathing steadily improved. They think she will only be intubated over night.
To see her is the most shocking. Her huge belly is gone. She looks so ‘normal’. Touching it reminds me of my post-birth belly. It is all soft, wiggly and jiggly.
They took several biopsies of the mass. We will find out results later.
Oh, man. Can you sense the euphoria?? I really have no words to describe what we are feeling. Only tears, smiles and more tears.
Praise God. I can't imagine the conversations He and Maddie are having.
Update 12:30 pm They are getting Maddie ready to go now. We should be leaving in the next 5- 10 minutes. Please pray for Maddie.
Dear Friends,
Wow. You really delivered. Thanks for sharing all of your stories in the guestbook. Please keep them coming. I know I am not the only one who draws strength from your words. I can't help but just thank God everytime I read one.
Maddie’s surgery will be done today. They loaded her with blood, platelets, FFP, etc. to help with clotting. The surgery resident said he thought she would be taken to the operating room early morning or late afternoon. Please lift Maddie up in prayer. Dr. Laquaglia will be doing the surgery. Please ask God to guide him.
I think Jeff and I are calm. We have been floundering for a while with worry and even panic. But I think we are again resolved to carry this out how God and Maddie have intended. We continue to succumb to God’s will and still ask for complete healing here on earth.
Love,
Jane
Monday, October 31, 2005 12:52 AM CST
Update: 7:30 pm
Dear Friends,
I’ll start with the good news. Maddie was more comfortable today. She slept most of the day with some periods of moaning.
The rest of the news isn’t as good. They decided to do Maddie’s CT Scan today because of all the pain she has been having. The results of the scan were that the mass has increased in size.
Conflicting with that is her EBV blood test. Her numbers were 58,000 and are now 17,000. They aren’t 100 percent sure what is happening.
The scan also showed that her intestines were blocked. They are very concerned that this may cause her intestines to burst which would make her septic. The surgeon here is going to put in a tube tomorrow to help empty out her intestines. It is a risky surgery but Maddie’s only option here. He is also going to do a biopsy to see what is going on in the mass. This will tell if it is rampant EBV or if the T cells are in there and at work. It will also require Maddie to be intubated again.
I didn’t think the surgeon would touch Maddie. I am so thankful that the doctors here are giving her a chance, albeit a slim chance.
We pray tomorrow that we can tell you:
1. Maddie made it through the surgery.
2. Preliminary results on the biopsy bring us good news.
I am also going to make some guestbook rules for the next 24 hours. Instead of writing directly to us, please write about someone you know who was in rough physical shape and survived. Tell us their story. We want to be flooded with medical miracles. Or heavenly ones.
Love,
Jane
Sounds like things were about the same last night until about 4 am. Not sure what they did, or if one of her pain meds kicked in, but she has been sleeping since 4 am. She wrinkles her forhead now and then like there is pain, but goes back to sleep. It's great to see her sleeping. Jane was able to get some rest last night. I had a great night sleep. Didn't even wake up for a phone call.
Maddie is scheduled to get a CT scan today. We're not sure if they'll see any difference in the mass, but they wanted to see what's going on in there. Dr. O'Reilly said they usually don't see any change for a least three weeks from the first T cells. The docs will meet and make a plan. We hope to see positive things from the scan. I'm sure we'll have a big (bigger) pit in our stomach until we hear the good news. Trying to stay positive.
It was great to see the boys. They made it home late last night. I'm sure they'll be tired today. As good as it was to see them, it's harder to see them go and not see them today. Talk about pits in your stomach. It makes me realize how much I (we) really miss our kids. Yesterday, I was walking back to our room and I spotted a little boy walking towards me. Sam. Sam and Sally were walking to get some cookies. I was so cool to see them walking down the street. We miss them. We miss Maddie.
Jeff
Sunday, October 30, 2005 4:14 PM CST
Monday AM Update: Sounds like things were about the same last night until about 4 am. Not sure what they did, or if one of her pain meds kicked in, but she has been sleeping since 4 am. She wrinkles her forhead now and then like there is pain, but goes back to sleep. It's great to see her sleeping. Jane was able to get some rest last night. I had a great night sleep. Didn't even wake up for a phone call.
Maddie is scheduled to get a CT scan today. We're not sure if they'll see any difference in the mass, but they wanted to see what's going on in there. Dr. O'Reilly said they usually don't see any change for a least three weeks from the first T cells. The docs will meet and make a plan. We hope to see positive things from the scan. I'm sure we'll have a big (bigger) pit in our stomach until we hear the good news. Trying to stay positive.
It was great to see the boys. They made it home late last night. I'm sure they'll be tired today. As good as it was to see them, it's harder to see them go and not see them today. Talk about pits in your stomach. It makes me realize how much I (we) really miss our kids. Yesterday, I was walking back to our room and I spotted a little boy walking towards me. Sam. Sam and Sally were walking to get some cookies. I was so cool to see them walking down the street. We miss them. We miss Maddie.
Jeff
Dear Friends,
The boys and my sisters left around 2:00. A car picked them up and drove them to the airport. They should be half way home by now. I think they had a nice time and they were good about leaving. We are so grateful to Joanne and Sally for bringing them out.
Maddie's day has continued the same way. She is very uncomfortable when awake. She will sleep in about 10 minute intervals.
Night is falling. Nervousness sets in. It is one thing to deal with this in daylight when we aren't too tired and another to deal with it at night.
Love,
Jane
Sunday, October 30, 2005 8:43 AM CST
Dear Friends,
I don't even know what to write anymore. Each day is the same. Maddie is either sleeping or awake and in pain. She and Jeff were up all night last night. The doctors keep increasing her pain meds and Maddie keeps hurting.
The whole thing would be so much easier to deal with if we knew how it would end. If we knew for certain that Maddie would be okay in a few weeks, we could remain strong. If we knew for certain that God was going to take her, we could load her with pain medicine and keep her comfortable. The problem is that no one knows what His plan for her is. After all we have seen and all we have watched, we know that no one controls what will happen except God and Maddie. No matter how often you pray or even how you pray or what you believe, the control is His. We simply trust - not because we know we will get what we want but because we know we will get what is right. It isn't easy. And that may be the biggest understatement I have ever written.
The boys are leaving this afternoon with Sally and Joanne. It has been a good visit with a lot of the time spent sitting by Maddie in the hospital. It was long enough that we got to hug, kiss and smell them a lot. But short enough that it hasn't gotten stressful. Thank you so much to Joanne and Sally for bringing them.
Love,
Jane
Saturday, October 29, 2005 11:29 AM CDT
Dear Friends,
We are all hanging out with Maddie at the hosptial. Jeff was here when the doctors came to see Maddie. Jeff really pushed for them to do more for her to help the pain. The doctor was very receptive and they have again increased her pain meds. She is resting comfortably right now and we pray it lasts.
The boys went Halloween costume shopping this morning with me and Sally. Max will be Shaggy from Scooby Doo. Sam is going to be the Human Torch from The Fantastic Four.
There was a party at the Ronald McDonald House last night for one of the families who are leaving soon. Sam had a good time doing art. Max had fun but got a little bored. There is a magic show today that they will try to go to.
We are very glad to be together. It does make me miss 'Our Maddie' a little more.
They will do a CT Scan on Maddie on Tuesday to see if the cells have done any good.
Love,
Jane
Friday, October 28, 2005 9:57 AM CDT
8:10 PM Update. Oh boy. This was just too good to wait until later to post. All day long we have been talking about and celebrating Jeff's birthday. It isn't even today. His birthday is on the 29th. I only just now realized it. I can't believe not one of us noticed or one family member corrected us. I have no idea how we got it into out head it was today. Are we going crazy or what??
Dear Friends,
I need to make this a quick one. Maddie just woke us and is uncomfortable.
She is still in pain though it is better than last weekend. Her biggest issue is the swelling. I am glad her belly is not hurting her.
They are not offereing us much hope on her kidneys but still I am hoping they will work again once we clear up the mass issue.
The boys were a great delight last night. Like Jeff wrote, Max laughed and laughed and laughed. On the walk back to the Ronald McDonald House Sam kept yelling, "Taxi!" And Max laughed and laughed and laughed. It was a fun pajama party. Me, Sally, Joanne and the boys. We only had three pillows and not enough blankets.
Today is Jeff's birthday. He is hopefully off enjoying it with the boys.
Love,
Jane
Thursday, October 27, 2005 7:13 AM CDT
Update: Joanne, Sally, Max and Sam made it to the hospital about 9 pm tonight. It was SO good to see them. I knew I missed them, but man, seeing them was great. Max was full of laughs and Sam full of great comments. They stayed for a short visit, then they were off to the Ronald McDonald. Can't wait to show the around a little tomorrow.
Maddie is sleeping. They've made a few changes on her pain meds. Hope it works for her. She got her third dose of the T cells today.
Jeff
Dear Friends,
I hate to even change the journal entry. I thought Jeff's yesterday was beautiful. Every word of it hit right to the heart of the matter.
Yesterday was a tough one for me and Jeff. The lack of sleep and having to watch her in so much pain was leaving us drained. There was also concern from the ICU folks about increasing her pain meds and what that would do to her breathing. They felt very strongly that her level of pain was not acceptable and we totally agreed. They were also concerned that her EBV numbers had increased.
Our minds were going wild.
Things have settled down some. They started her on methadone and increased her Fentynal. She was more comfortable yesterday. She slept a lot, and when she was awake, she responded clearly and could at least tell us what was wrong. She was still hurting but not like she had been. Her breathing remained very stable with all the meds on board. For you medical savvy readers, her respiratory rate, heart rate, blood pressure and blood gasses all remained normal.
I also learned a little about the EBV numbers this morning. They did a test when we first got here and it tested negative for EBV. They did another one to recheck it and it came back high. The transplant team does not think the numbers increased. They didn't and still don't think the first test was right. I agree.
So, we had a better night. She will get the third dose of Jeff's cells today. We will be able to speak with Dr. O'Reilly and see what he thinks.
We also had a wonderful offer yesterday. Sally, my sister, emailed me and said that she and Joanne, another sister, would like to fly in with the boys for a short visit. Oh, boy. They will be in tonight. I can't wait to see them. They are staying until Sunday.
So, in short, methadone is a good med for Maddie. The boys are a good med for me and Jeff.
Love,
Jane
Wednesday, October 26, 2005 9:28 AM CDT
Well, each day goes by like any other day in PICU. You get bored, worried, stressed. You’re saddened for the other families that loose their fights. You sit and wonder how things will turn out for yours. Our days come with good news and bad news. Lately, they seem to be coming with more bad news each day. Maddie continues to be stable, but not moving forward. She is in more pain each day. They try different things and they seem to have to get more “aggressive” each time they make changes. You sit and think why this is all happening to this little girl. Why did that Friday night/Saturday morning happen? I believed it happened for a reason, a good reason. But was it to make her suffer for a few more weeks? Was it to be of something wonderful? We sit and wonder this 24 hours a day. This summer Maddie has talked a lot about things she wanted when she gets out of the hospital. She wanted Jane and I to have another wedding, which she has planned. She wanted all our family to come to our house this year for Thanksgiving, which she has planned. Not materialistic things, but family things. I think that shows us what a special girl she is.
As parents, we agonize what is too much for her or how far do we go to fight with her. She wants to fight, she wants to live. How can we deny her of those wishes? She is a fighter. She has not given up. But when you sit and watch the pain she is in each day and night, you wonder what she is thinking and feeling. We want to hold her, play with her and for her to have a wonderful long healthy life. Not for us, but for her.
Jeff
Tuesday, October 25, 2005 8:50 AM CDT
Wednesday morning (I think) update: I'm just sitting here looking out the window and watching Maddie and Jane sleep. Sound familiar? It sounds like, from the nurse, Maddie (and Jane) had another rough night. She does have the tube down here nose this morning. Hopefully that will relieve some of her pain. We'll see. Maddie is already having a tough day. We need to do something more for this girl. She has been in bad pain since Friday. One of the hard parts is she's trying to tell us what she wants, but it's hard to understand her. We'll see what this day brings us. Jeff
Dear Friends,
I am sitting in Maddie's room watching her and her daddy sleep. I went back to the Ronald McDonald House last night and slept really well. I don't think Jeff's night shift went smoothly. Maddie kept waking up and crying. Now they are both snuggled in and resting.
As Jeff wrote early in the morning, today is the third anniversary of our MLD diagnosis. Max had an MRI on October 25, 2002. We waited at our pediatrician's office to hear what they saw and I remember Dr. Crittenden giving us a slip of paper with MLD, metachromatic leukodystrophy written on it. He said, "I don't know anything about this disease but I can pray with you." He is a great guy. It is also interesting that as much as we have prayed over the past three years and have relied so heavily on it, we didn't pray with him that day.
Jeff posted some great pictures. I wish he had warned me. I am missing the boys so badly and I wasn't quite prepared to see Max. But darn. that boy is soooooo handsome.
Hopefully today will be a peaceful day for Maddie. The anniversary sounds like the perfect day for God to heal her. But what do I know?? My plans certainly can't compare to His.
Love,
Jane
Monday, October 24, 2005 12:17 AM CDT
Update 1:45 am, Tuesday, October 23, 2005: Three years ago today Max was diagnosed with MLD.
Update 5:45 Maddie has been restless most of the day but is right now resting peacefully. She has been sleeping for about a half an hour. It feels so good to watch her. Lord willing, it will last a while longer.
We had a good visit with Pastor Jamey. He spent most of the day with us and just left a little while ago. As always, it was great to see him and talk "Stanton talk".
I just wanted to repeat something I have written many times before. Our journal entries are honest. When we are down, we let you know. When we are hopeful, we let you know. Either way our faith is always intact. We are also appreciative of the fact that the hopeful days have far out weighed the down days. Thank you, God.
Dear Friends,
The dialysis machine has been creating many problems. It was a long night full of lots of beeping and people trying to make it work. She has been off it for a long time while they try to get it to function properly. She is filling up fast.
She cries almost constantly. She is in great pain. It is certainly no way to live. So much pain and suffering for a young child.
My heart breaks. I can't fix her. I can't help her. Nothing really brings relief for her.
This is our reality.
Love,
Jane
Sunday, October 23, 2005 1:32 PM CDT
Dear Friends,
We have been on such a good roll but I think both us feel like it is all about to get worse before it gets better again.
Last night they took Maddie off the dialysis machine to see if she could make her own urine. They were looking to see how much she would pee and how much would come out the nephrostomy tubes. None came out over the night and that was with two doses of lasix. She also ran a fever all night.
They have hooked her back up to the dialysis machine. They will do an ultrasound to see if they can see anything blocked as far as the kidneys and/or nephrostomy tubes are concerned. We aren't sure where this will go from here.
I think both Jeff and I are feeling down this weekend. The road seems so long for Maddie. She has been in the hospital now a month straight. We fight so hard for the kids, especially Maddie to have a long life but the cost is missing life right now. It is horribly ironic and getting hard to deal with.
We miss the boys. We miss our Maddie. We miss life how we know it. And probably most difficult, we miss the future we imagined.
Pastor Jamey is arriving tonight. Good timing.
The writing of all this is cathartic. As much as we appreciate all the guestbook entries, please don't try to cheer us up. The reality is that very very few of you can even begin to imagine any of this. I am so glad. I hope you never even get close to any of this. But one of the things you do realize in this situation is that no words really make a difference. Except maybe to hear the doctors say, "Hey, her kidneys do work." or "Where did that mass go?" Or Maddie saying, "Boy, do I feel great."
Love,
Jane
Saturday, October 22, 2005 1:37 PM CDT
Dear Friends,
The other day I wrote that Maddie had gotten one tube out and had five to go. I misspoke. She had 7 to go.
Well, yesterday she lost the Foley catheter. Today I think she is going to lose the NG tube and the A-line in her arm. That will leave four left. Her triple lumen in her upper right leg, her catheter in ther upper left leg for the dialysis and the 2 nephrostomy tubes. I call that progress.
She wakes up periodically. She isn't making a lot of sense all the time. In the middle of the night she told me she didn't want to be by the pony because she would get wet. Ativan is a wild med.
The doctors here seemed pleased with her progress. Dr. Kurtzberg seems pleased with her progress. I know we are pleased with her progress. Now it is up to Maddie, God and the cells. This trip has always been about complete healing for our girl.
Love,
Jane
Friday, October 21, 2005 3:16 PM CDT
Saturday 1:00 pm update: Maddie and Jane had a pretty good night. Maddie has complained more today of pain in her stomach. So we've (she) been pushing her pain meds more which leads to blood pressure issues. Wicked cycle. Dr. O'Reilly came by this morning and was happy with her progress. Always good to hear. She was able to take a couple small sips of water this morning. Other than that, just another day in PICU.
Dear Friends,
Maddie is talking more. We are understanding her more. But she is still saying some loopy things. She is just so cute.
They took away the oxygen this morning. They took out her Foley (sp??) catheter since she now has the tubes in her back. Her blood gasses were looking worse so they did give her some more oxygen this afternoon. Right now she is wearing a nasal canula.
Overall, I think everyone is pretty pleased with her progress. I just keep looking at her and thanking God. Hopefully we will have a very quiet and peaceful weekend.
No news on her culture from the kidneys.
The boys always sound good when I talk to them. We are still missing them like crazy.
Love,
Jane
Thursday, October 20, 2005 12:28 AM CDT
Update: At 3:45 pm, Dr. O'Reilly and the two women (don't know their names yet) who grow the cells arrived. They placed her second dose in her! She is very grumpy and still out of it, but we love to see her face. It's hard to tell if she's in any pain. We just need to keep heading in the right direction.
Dear Friends,
Our Maddie is officially off the vent. They took her off this morning. She has some oxygen blowing on her now but she is doing well. Hopefully she will stay off. That is one tube down 5 to go.
She is very sleepy still. She is talking to us some but she is very hard to understand. There is still a lot of Ativan and Fentanyl in our girl.
She should be getting her second dose of Jeff's cells this afternoon. Those cells are sure packed with love and must certainly be doing the job.
Maddie did get the tubes put in yesterday to drain the urine out of the kidney. When they put the tube in the right kidney, the urine looked cloudy and may possible be infected. They sent some off to be cultured. We should hear about that in the next couple of days.
Love,
Jane
Wednesday, October 19, 2005 11:16 AM CDT
Dear Friends,
It was a quiet night for Maddie. They have increased her Ativan and she is sleeping more. She just woke up a few minutes ago. She looked around and pointed a little. Now she is back to sleep.
The renal scan yesterday showed that the mass is blocking the urerters. Today Maddie will have nephrostomy tubes put in to drain her urine. They make it sound simple and temporary. If she has to have a procedure, we like simple and temporary. We do have a hard time with the fact that we keep sticking plastic tubes into her.
I am assuming that we will start weaning her vent after the procedure. It would be great to try and extubate her in the next couple of days. It is a very different 'vent experience'. Her lungs are perfectly fine. It is the mass creating pressure and not allowing her to fill her lungs properly that is the problem.
For some reason, yesterday was a tough day. There are just some days when the road seems soooooooooooo long. She has been through so much. Yesterday I just kept telling myself that we are counting on the cells. Last night I reminded myself that that wasn't true. We are counting on God.
Love,
Jane
Tuesday, October 18, 2005 2:24 PM CDT
Hello.
A busy day here in the PICU. Some was Maddie, some not. Maddie had a renal (kidney) scan today. Dye was place in her to see her kidney functions and if there is any blockage. We are still waiting for the results. Her blood pressure and heart rate was also a concern.She was awake a lot today for some reason. Not sure if it’s because of pain or other issues. It’s very hard to see her awake in pain or scared. There is also talk about extabating (sp) her breathing tube. The plan is to wean her down on the oxygen and see how she does. She’s on a very low setting now. Then they’ll make a decision what they want to do. The doctors want to keep moving her forward in the process. Slow and steady. We’ll probably update later as we find out more. Whew.
Jane and I have just been hanging out with Maddie. We go out for an occasional walk around the city. I walked down to Central Park Sunday. I sat and watched the kids sail their boats in the pond. I also watched cameramen with huge telephoto lens trying to get pictures of, I guess, famous people in their penthouses. It was a great place to people watch and relax. We also sit and watch boats go down the river to pass time. Just passing time, watching all the machines and all the numbers. Each day she stays out of trouble is a good day. She should get her next infusion of T(‘s) cells this Thursday.
Look for a possible update later as we learn more.
Jeff
Oh, I did get a haircut today. Yahoo!
Monday, October 17, 2005 3:55 PM CDT
Dear Friends,
No news really does mean no news. There has been nothing exciting to report today. Thank you, God.
Dialysis is running. She is still on the vent. Jeff's cells are in there multiplying and attacking. Maddie's lungs continue to do well. Her abdomen is big. Jeff and I sit beside her and read, rub her face, and drink Diet Pepsi and coffee.
It is still boring and we are thankful.
Love,
Jane
Sunday, October 16, 2005 1:43 PM CDT
Dear Friends,
Another day in New York with nothing new to report. Maddie continues to hold her own. There have been no changes. She wakes up periodically and scratches her cheek or belly. The tube down her throat bothers her when she is awake (for obvious reasons). It is always nice to see her fall back asleep and be comfortable.
The doctors will continue with the plan.
The boys have had a nice weekend with Aunt JoJo. The cousins and Grandma and Grandpa came over yesterday. They had fun. We miss them terribly.
I am not sure why some of you can not get the pictures. You may need to hit refresh when you go to the photo page.
We hope you are all having a good weekend. Our's is quiet and calm and we are so thankful to God for that.
Love,
Jane
Saturday, October 15, 2005 4:06 PM CDT
Jeff posted some new pictures tonight.
Dear Friends,
Quiet day in New York for Maddie. She is resting peacefully and there are no new changes. She is very bruised all over but looks beautiful.
We had a couple of visitors today. Jeff's sister Cindy and her husband Carl came down from Albany and spent the afternoon with us. It was great to see them.
So far, so good. We are hoping to ride a long the next couple of days with no new situations.
Love,
Jane
Friday, October 14, 2005 1:46 PM CDT
Dear Friends,
24 hours after getting the cells from Jeff, Maddie is doing fine. Dr. O'Reilly made the comment that she handled getting the cells well. He told us yesterday that it would take 24 hours for the new cells to migrate to the mass. They should be there attacking and multiplying. These cells do not last long in the body. She will get the second dose next week. At least, we think that is the plan.
They are also talking about when to extubate her. I am sure she is wanting that tube out of her mouth. I worry about what she might say when she can talk. I think she will give us an ear full.
That is really all there is today. She has been resting all day with the help of Ativan and Fentynol.
Someone asked in the guestbook about when the cells should be working. They should be working right now. They would expect to see a decrease in the size of the mass in 18-21 days.
If anyone has an update on Carolyn, please let us know how she is doing.
Love,
Jane
Thursday, October 13, 2005 5:53 PM CDT
Dear Friends,
Here is Jeff's update from earlier:
Update Thursday, October 13, 2:45 pm: Dr. O'Reilly pushed the T cells into Maddie at 2:30 pm. Mark it on your calendar. This is what we came for! Jane has already started with the comments about using my cells and not hers. "I hope they don't get lost, they won't ask for directions." My cells were asking, "Was that EVB, EBF...?" Real funny. They're going to KICK EBV IN THE BUTT
Now here is mine:
7:00 pm The day has been quiet. Maddie has ben waking up periodically. She looks confused and a little upset. They keep giving her small doses of Ativan to keep her sleeping. It is a mixed reaction to see her awake. I love to see her eyes and she nods to our questions. But I know it upsets her and this breaks my heart.
Her kidney numbers keep steadily improving. The doctors are happy with her progress.
I am going to call the boys soon. I know they are well taken care of.
Trish, our friend from Texas, wrote in the guestbook that Carolyn W. is in need of prayers. Take a look at Trish's entry.
Love,
Jane
Wednesday, October 12, 2005 1:54 PM CDT
Update Thursday, October 13, 2:45 pm: Dr. O'Reilly pushed the T cells into Maddie at 2:30 pm. Mark it on your calendar. This is what we came for! Jane has already started with the comments about using my cells and not hers. "I hope they don't get lost, they won't ask for directions." My cells were asking, "Was that EVB, EBF...?" Real funny. They're going to KICK EBV IN THE BUTT!
Dear Friends,
Well, here we are. The updates will be farther apart now. We do not have Internet access in the hospital room right now. We will update once a day from the Ronald McDonald House. I am going to type fast and include a lot of information. It may not be int he best order though.
Maddie is still intubated right now. She is very peaceful. She starts to wake up at times and will open her eyes a little and squeeze our hands. She can even wiggle her toes when asked. They are going to keep her on the vent for a while longer. Her lungs are fine but her abdomen is huge right now. I have mixed feeling about it. I would love to talk with her but I know how much pain she was in when she was awake.
Dr. O'Reilly is a very nice man. He has spent a lot of time talking with us. He is very kind and has had good results with these types of cells with the EBV virus. Maddie's case is different in a lot of ways but there is a chance these cells could clear up her EBV. They are going to give her the first dose of cells tonight or tomorrow morning.
As always there are risks involved. This is another reason to keep her intubated. The cells will go right to the tumor and get to work. There may be some initial inflamation while they 'attack'. There is also some concern that the mass might shrink too quickly. Can you even imagine?? This could cause some trouble for her rectum area where the tumor has grown through the wall.
The fact they think Maddie is stable right now to try this is reason to celebrate enough.
Maddie's kidneys have been our busiest issue since arriving in New York. The staff here has worked very quickly and started a filtration dialysis last night at about 2 in the morning. By 6:00 am her BUN and Creatinine had both improved significantly. Her platelets had also started rising back up. The doctors are very pleased. Both the 'kidney' doctors here and in New York think this is temporary and the kidneys will be able to function at a normal level once the underlying problem (EBV) is resolved. There is still some talk about trying to intervene and help her peeing situation.
Now, about New York City. Oddly enough, this small town girl is very much at ease here. That may have to do more with how Maddie is doing than my being a city slicker.
The Hospital staff is very friendly and they are taking excellent care of Maddie. We are actually at Cornell in the PICU right now. It is across the street from Sloan Kettering. Eventually, I think Maddie will be transfered there.
The Ronald McDonald House is about five blocks away. I pass Sotheby's auction house on my way to the RMH. It is raining cats and dogs right now. I am soaked from the walk here. That was with an umbrella.
Thanks for the prayers. We are overall calm and at peace. We will update again tomorrow. Still trusting and hoping.
Love,
Jane
Tuesday, October 11, 2005 8:21 AM CDT
Hello. Well, I'm sitting in some library off of York street. I think it's part of Cornell Hospital. I came outside to get an idea where we're at. I'm the one walking around like a lost puppy.
We made from hospital to hospital in about 3 hours. Amazing. All the transports went great. The ride to the airport, the flight, and the transport to the hospital. Maddie was out the entire time. The flight crew were great. Nice people. Our room is over looking the east river. Traveling by ambulance is a good way to travel in NYC.
Maddie is out still. They want to keep her out until they can get an idea of how she is doing. They moved quickly last night. Labs, xrays... They came and talked to us briefly this morning. She may go in for an MRI. All this just to get to know what's going on inside her. Dr. Orielly met with us last night to go through Maddie's long medical history. He seemed like a very nice man. Lots of medical students are coming in. I better get going before they kick me out.
We'd like to thank all the great people in Grand Rapids for all they've done for our family. Great people.
Bye for now.
Jeff
Monday, October 10, 2005 7:20 AM CDT
Update 2:40 PM the flight crew is here. They're getting Maddie ready. Gotta BELIEVE!
Update 12:00 noon
The doctors came to get Jeff and me. We went into a conference room and they discussed how Maddie was doing. Things are looking very grim and they said they didn't know if Dr. O'Riley in New York would even be able to take her. They said they would know by noon. They talked with us about just bringing her comfort here and letting her pass away. Her kidneys are in rough shape. The pain is still there. It seemed as tough for the doctors to say as for us to hear. We told them we are letting God decide. If New York wants her, we will follow that path. If God closes the door, we accept that too.
They just came in a little while ago and said the plane will be here at 2:00 to take her New York. I have been crying since we heard. We don't deserve it and yet He is giving us the chance.
Dear Friends,
There is not too much new to report. I am on the fence about the epidural. I think we will be able to tell a lot more today. She said her belly didn't hurt but she was acting very erratic and upset. It may just be agitation from the other meds. We stopped the Versed (which is supposed to lower anxiety but can have the opposite effect) last night. They started her on a low dose of the sedation they used for the epidural procedure. This helped her rest quietly all night. The ICU doctor and the transplant doctor, Dr. Pietryga were here late last evening figuring out ways to help Maddie feel better. They have been so good to Maddie.
We should know more when the doctors round later this morning.
The boys are doing fine. I haven't mentioned them in a long while. Jeff and I miss them terribly. Even though they are only an hour away and sometimes visit, it is really hard. Joanne was at our house this weekend. My parents came and helped too. Jeff's parents have really done the most caretaking with them. They have been spending all the weekdays with them. This week they will tag team with Joanne and get the boys to school, etc.
Love,
Jane
Sunday, October 9, 2005 8:23 AM CDT
Update 8:00 pm It has been a rough day for Maddie. She has been in a lot of pain. The doctors decided to try giving her an epidural. We waited most of the day for it and she had it put in around 6:00. It doesn't appear to be helping much but we are hoping things improve through out the night. There was no discussion with us today about starting dialysis. Thanks for the prayers. Please keep them coming.
Our good friend emailed us a quote tonight by Winston Churchill, "When you are going through hell, keep going."
Dear Friends,
I am so sleep deprived that I am not sure what these fingers will actually type.
Maddie was able to sleep a bit last night. She actually had some two hour stretches. They gave her more pain medication, Benadryl and Ativan. They were worried it would affect her breathing. But she handled it well as far as her oxygen status goes.
The doctors are meeting this morning. I think they may start dialysis today. The 'kidney' doctor yesterday spoke with us about it. The kidneys will have trouble unless the underlying problem is solved. aka EBV. He said although her kidneys have scarring, once the EBV is resolved they can repair themselves to the point of functional use. This of course, its best case scenario.
Maddie is still having a lot of pain in her belly. She has started passing small amounts of stool but could really use a good bowel movement. Unfortunately the pain meds interfere with that - not to mention the mass is probably causing a partial obstruction too.
Sooooo. She has a long road ahead of her with this teeny tiny sliver of possibility. Our eyes are focused there. The doctors have been good about giving us that chance. We'll see what they say today.
Her pain is always a factor and parenting decisions have never been harder. Of course, we trust in God. We have been relying on him heavily for three years. I am the first to admit though that I can handle His will no matter what the outcome for Maddie but I can not understand the need for such pain.
Please don't try to explain it to me. No answer brings comfort. The cries of my baby take away all my rational thinking.
I really really really hope none of you will ever have to go through what we are. I am also constantly thinking about our friends we have met over the past three years that I know have sat exactly where we are. I am much closer to your pain and ache again for you.
Love,
Jane
Saturday, October 8, 2005 6:33 AM CDT
Last Update 9:45 The docs increased Maddie's pain meds. We have to be careful her breathing doesn't go too low. Fine line. Not much more they can do about her stooling. Wait and see. Two weeks ago we wanted pee, this week we want poop! Her Kidney functions have gotten worse through the day. They will keep a close eye it over night. She has been sleeping for about 20 minutes now. Longest of the evening. We hope she can get some rest and ease the pain. We're tired. Good night.
Update 8:45 pm Five hours later, Maddie is still screaming in pain. A child should not have to be in this much pain for this long of a time. Maybe we can find better pain meds on the beach in Mexico.
Update 6:15 pm Well, I think this was the true first time all three of us felt like throwing in the towel. Maddie has been in so much pain this afternoon. She has been screaming in pain and yelling at us and the nurse. We feel so bad for her and feel so HELPLESS. How much more does this little girl have to be put through? Where do we go from here? Jeff
Update 1:30 pm The doctors came in. They have identified the fungus and are switching Maddie to a different antifungal. Her kidneys are tired. If they go in the direction they seem to be, she will need dialysis in a couple of days. But for right now, we are sitting tight. She is sleeping but awakes with pain in her abdomen.
Dr. O'Riley called from NY yesterday and spoke with Jeff. They would like to try flying her out there again on Tuesday. Hopefully she will be stable enough.
She has a very long road ahead. The outlook isn't great but there is a small sliver of hope. She is certainly giving it all she has and we will follow her lead.
The doctors are really being good at keeping hope alive and yet being honest about her chances.
We are praying constantly.
Dear Friends,
I just noticed I hadn't updated since early afternoon. Maddie slept the rest of the day away. She was given a lot of Ativan.
She had a restless night. She is a little confused and her belly hurts.
The doctors will be in later this morning.We are just trying hard to keep her comfortable.
Thanks for checking on Maddie and please keep the prayers coming.
Love,
Jane
Friday, October 7, 2005 5:35 AM CDT
Update: 2:15 pm Maddie is done getting her lines out. Her new line is in. She did well. They were worried about her lungs and using sedation but she did well. Thank you, God. Thank you, God. Thank you, God.
Update 9:45 am Today will be a big day for Maddie. She will be having all of her lines removed in a couple of hours. They are still discussing the next step. She may have a triple lumen put in to her groin area or some other type of lines. Any type of procedure is of some risk to Maddie. I think they are also discussing decisions about meds and treatment for the fungus. We will really need God today. I pray he helps these doctors not lose hope and create good plans for Maddie's healing. Or I pray He intervenes now and gives us one big miracle. Actually I would also love lots of small miracles.b
Dear Friends,
I will update again after the doctors come in, but I really think the battle of the day will be her kidneys. They are still limited in what they can do for her and we are pumping a lot of meds into her. Her weight is up.
Please pray for her kidneys. Pray that the doctors can create a plan to get Maddie stable enough to travel to NYC. Thank you.
Love,
Jane
Thursday, October 6, 2005 5:39 PM CDT
Dear Friends,
If you haven't checked in yet today we are still in Michigan. Our flight has been delayed. You can go to the journal history link at the top to read more details.
Maddie has slept the day away. She has been given a few doses of Ativan. Her fevers have gone away. They have started her on many new meds until they know for sure what the culprit is.
They took her for a CT Scan. They took pictures of her head, chest, abdomen and pelvis. They did not use the contrast because it is hard on the kidneys. The pictures were not clear because of that but there was no noticable change in the mass. The chest looked good. Her head looked good. (The fungus can go to the brain.) There was a lot of air in her belly though.
They put an NG tube in her nose to help ciphon some of the air out of her stomach.
She resting very peacefully. The whole day ended with one big ole 'Thank you, God.'
She has a long road ahead of her. Please keep the prayers coming. We weren't supposed to go to New York today for some reason. We know it was a good one.
Love,
Jane
Thursday, October 6, 2005 7:59 AM CDT
Update: 4:45 pm. Maddie has been sleeping most of the day. She had a full body scan today. We just met with the doc. This is what I heard,"The things we were worried about, we didn't see." Yes! She has a lot of gas in there. They are not sure what the infection is, but treating it. They are talking about removing her port (under her skin) in the AM. That is where the test came back positive from. They are also rechecking for infection from her other lines. Again, I'm sure Jane will update later.
Update: 10:30 am. I just wanted to add a couple of things. First, we are moving back to the ICU. This is precautionary in case things progress in the wrong direction. The second is that I am not very worried right now. I am disappointed about NYC, but I feel okay about Maddie. I know that may change but right now I am pretty easy going. (Don't tell the doctors or they will feel the need to tell me more bad things :)
Dear Friends,
The plan has changed again. There will be no flight to New York City for us today. Maddie had fevers through out the night and the culture from her port tested positive for yeast. Sloan Kettering didn't want to accept her in this condition. But if she can get stable, the plan will be put back in place.
The doctors here are again preparing us for the worst. We are taking it one step at a time. We are starting by treating her port with a new antibiotic and retesting for the yeast.
One step at a time. We pray for healing. We are getting very tired and to say we are frustrated would be a huge understatement.
Please pray for Maddie.
Love,
Jane
Wednesday, October 5, 2005 5:59 PM CDT
Dear Friends,
Please say some prayers for Maddie. Her knees are hurting her. And she has had a fever most of the day. She is miserable and we just have to get on that plane tomorrow.
Thanks.
Jane
Wednesday, October 5, 2005 7:53 AM CDT
Dear Friends,
I was able to go home for a few hours yesterday. I went to Sam's parent teacher conference, ate dinner with the boys and gave them baths. It felt great to do normal mom things. I was going to stay and tuck them in for the night before heading back, but a little girl needed her mom.
Maddie had a rough night. I think the steroids have really taken a toll on her. She is having a lot of pain in her knees. It kept her up most of the night. She has also been complaining that her bottom hurts but I think that may be hip pain from the steroids. They are such necessary evils. Grrrr.
Dr. O'Riley called yesterday from Sloan-Kettering. He talked about a lot of things that were way over my head but it all sounded so promising.
Love,
Jane
Tuesday, October 4, 2005 4:37 PM CDT
Quick update. Jane will probably want to write more later.
Maddie had a pretty good day. She actually was out of bed for PT today and took a few steps. She is very weak once again and will take time to build her strength. She then slept for a few hours. Jane was able to go home today to see the boys before we head to NYC. I'm sure she's enjoying her time with them (and them with her). She should be back tonight. Maddie was transfered back to the BMT unit on the 7th floor this afternoon.
New York looks like it's a go for Thursday. Things are starting to come together. We've heard some very positive information from there. I've been telling Maddie about New York City. Tall buildings... Maybe we'll run into the Olsen twins or some celebs. Hey,it's a small town.
Well, that's it for now. Only good things to come for my girl.
Jeff
Monday, October 3, 2005 2:44 PM CDT
Update: 7:15 PM Maddie continues to have a rough day. Things like, "I hate my life! I want to go home! Why me!" have been coming out of her all day. It's hard to see her like this. We just want to move on and get things going in NYC. The only thing that seems to calm her down is sitting in Jane's lap and talking with her. We need to get her fixed. Jeff
Dear Friends,
New information is flowing in. Dr. Kurtzberg spoke with a Dr. O'Reilly at Sloan-Kettering. I believe he is the head of the transplant program. The cells should be ready by the end of the week to give to Maddie. The dilemna is that Jeff's cells grew well but are not fully tested. My cells didn't grow well but reacted well to their testing. I think they are trying to grow more of my cells this week. The plan is to give her three doses each a week a part. (Plans have been known to change) No surgery for now but I am hoping the surgeon will have a chance to reevaluate her.
I asked Dr. Kurtzberg this weekend if they had used the cells on anyone who had a mass as big as Maddie's. She asked Dr. O'Reilly. He said they have had success on children with larger masses than Maddie's. Praise God! Thank you, God. We will take any piece of hope that jumps our way.
Maddie's day has not been a great one. She is very aggitated and frustrated. I do not blame her at all. She keeps telling us she wants to go home. I would love to scoop her up, put her in the car, and drive her to Stanton.
Instead I will scoop her up, put her in an airplane, and get her healed.
Unless God has already taken care of the mass. That would work too.
Love,
Jane
Sunday, October 2, 2005 5:43 PM CDT
Dear Friends,
Today had its ups and downs. This morning Maddie looked so peaceful sleeping. It was the most relaxed I have seen her in a long time. But in the afternoon she had a hard time for a while with pain and discomfort. It doesn't help that she is on some new/different meds and I think they play a role in her moods.
We will see what tomorrow brings. The doctors will talk and we may be heading to NY tomorrow.
Love,
Jane
Saturday, October 1, 2005 8:00 PM CDT
Dear Friends,
Maddie had a major beauty treatment with her nurse today. The staff even made her a crown. 'Princess' Maddie is looking good. They are such special people here.
We are feeling a bit more hopeful tonight. A visit from the boys, a quick trip home and a phone call from a great lady in bib overalls helped get things back in perspective.
Love,
Jane
Saturday, October 1, 2005 2:20 PM CDT
Dear Friends,
Sorry for the late update. But no news is actually no news.
Maddie has been tired and fed up today. Who can blame her? It is really hard to hear her say she wants to go home. We also had to talk with her yesterday about what happened last Friday. That was a very difficult conversation.
We are still in Grand Rapids but could be leaving at any time. The plane and crew have been contacted. We are just waiting for news from Sloan Kettering.
Please keep up the prayers to God asking Him to get rid of the mass in Maddie’s body and to heal all three kids.
Thanks.
Love,
Jane
Friday, September 30, 2005 10:51 AM CDT
Update: 9:15 pm Maddie is tucked in for the night. We just said a bedside prayer. Please join us all weekend long in prayer for God to get rid of the mass and make Maddie 100 percent well. And while we are thinking 100 percent, throw in Max's name too. Thanks.
Dear Friends,
It is feeling like a very strange morning. We are not sure where we are heading (literally) to take care of Maddie. It is starting to look like we will be flying to NYC soon. The cells are ready and they are the leading authority on the Epstein Barr lymphoma.
I think we have been naive about the seriousness of Maddie’s Epstein Barr Virus. We thought her body would take care of it and the doctors are not sounding hopeful at all that this will be the case. From what we can gather, the cells are a small chance but haven’t been used in a patient with a mass as large as Maddie’s. Surgery may still be an option but is very intrusive and dangerous.
I can’t help but think of how strange this past week has been. Last Friday just kept getting progressively worse. By evening they told us her kidneys were not working. They stopped her ‘meds for life’ and put her on comfort control, aka ‘meds for death’. By two in the morning they told us that this may just turn around. By Saturday morning, ‘life meds’ were started again. Through out the week she has been coloring, talking, yelling at us, eating a little, etc.
I asked her last Friday if she was done fighting. She shook her head ‘no’. We prayed around her -not for life this time. This time was different. We were at a new place in our faith where we were ready to accept God’s complete will. Although we asked for the miracle of healing, we were ready to accept anything. We were ready because we totally and completely love Maddie. Folks, she hasn’t been the happy girl we had for a couple of years now. She has hurt, struggled, and been put through more than most of us could ever handle.
We completely believe that God knows best. We ask for the mass to be healed and that Maddie can live in comfort and happiness. But we believe we are spectators here and will walk through the doors that God opens. It is up to Him and Maddie. We love her that much.
Love,
Jane
Thursday, September 29, 2005 8:40 AM CDT
Update: 8:15 pm Still holding steady. Thank you, God. Maddie isn't very happy but she doesn't seem to be in as much pain as yesterday.
There are phone calls, emails, etc. going around trying to see what is going on with the cells that have been growing at Sloan Kettering. We may need to head to NYC to get the cells from them. We are waiting to hear from Duke.
Dear Friends,
Maddie had another restless night. She is uncomfortable in a few ways. Her skin is itchy. Her skin is still swollen. Her abdomen hurts for several reasons. She is looped up on pain medication. I hope she feels better soon.
We haven't spoken with doctors yet but things seem to be staying the course. Yesterday's plan was to get a good blood pressure using a combination of meds. We were also working at getting more fluid off of her. I think today will be much of the same.
Love,
Jane
Wednesday, September 28, 2005 8:25 AM CDT
Update 7:30 pm Maddie has had a very stable day. They are starting to switch back some of her meds so she can get out of ICU and back to a transplant room. We call this progress. Thank you, God. Maddie is still hurting and just resting in bed.
Dear Friends,
There really isn't much new to report. Maddie was awake a lot of the night. Right now she is resting peacefully. She looks cozy with her pink blanket on her and her 'nee-nee'. (That scrap of cloth she is always holding that used to be a pink fleece baby blanket).
Since there isn't much to report medically, I thought I would take a quick minute to tell you how comfortable we are with DeVos. The staff has really been tremendous. We are huge nursing fans and the nurses here have been so caring toward Maddie. All of the doctors involved are personable and knowledgable. We are more at ease here than we would have imagined. I have also never seen a hospital more customer friendly. We are constantly being offered coffee, water, fruit, snacks, etc. There are people in and out of the room all day asking Maddie is she wants something to do.
We are thanking God for the DeVos staff. And also for our angels at Duke who are in constant communication with them. The transplant world is a small one and I am so glad they know of each other and are willing to share information.
Love,
Jane
Tuesday, September 27, 2005 7:22 AM CDT
Update: 6:45 pm If you don't see an update, it really means nothing new is going on. If anything changes, we update really quick to get prayers going.
Maddie is still hurting some and sleeping a lot. Her blood pressure has been the issue of the day. It has actually been high. It has been a matter of changing some meds. We will take high blood pressure over low blood pressure any day.
I also wanted to mention that there are so many guestbook entries that are so appreciative of the frequent updates. I am glad you like them, but I don't want you to be too impressed with us. We actually have two laptops right in the room with us.
Thanking God. Jane
Dear Friends,
Probably the most telling of Maddie's status is the fact that I slept pretty well last night. Or that could just be a reflection on how much people are praying??
Maddie's oxygen was taken off last night. She was only getting 30 percent through the mask. (Room air is 21 percent) She is doing well without it. She is also a KG down today. That means she lost two pounds in fluid yesterday. Both good signs.
Maddie still has lots of issues to resolve. The biggest being the Epstein Barr mass in her abdomen. We certainly understand the road ahead is long for her.
But, man! Every time I hear her laugh, talk, yell, cry, I thank God!
Love,
Jane
Monday, September 26, 2005 6:57 AM CDT
Update 9:30 pm: Maddie had a pretty good evening. She's been coloring for the past 45 minutes. She gets frustrated very easily due to pain in her stomach, drugs, and is very tired. We'll take every screem or cry with joy. She's still here fighting!
Update 4:40 pm Maddie is sitting up in bed, listening to Jeff's IPod and scratching an activity page. She slept most of the day. She was still hurting through out the day too. However, she looks just so so so so so good. Hopefully her insides are looking as good too.
Dear Friends,
It is always good to see the sun come up and know the night is over. Maddie remains the same. We were up early. We cleaned her up, changed her linens, and weighed her. It was really a group effort. Jeff, me and a couple of nurses.
She is now nestled among pillows in her bed. Her stomach is hurting her today more than yesterday.
Let's see what the day brings. The doctors will come in shortly to tell us about her labs, etc.
Love,
Jane
Sunday, September 25, 2005 7:01 AM CDT
Update: 8:00 pm All is well. Maddie is tucked in for the night. She is still puffy but breathing well. Tonight she said she was hungry and ate half a red Jello. Every day is an incredible blessing and gift and we are completely thanking God. And you know what? We should feel that way every day anyway. Thank you, God.
Update 2:45 pm Nothing new to report. They are giving more lasix to Maddie to help remove the fluid. They are also removing some blood. That will help too. She is comfortable and napping right now.
Dear Friends,
We haven't talked with any of the doctors today. We'll just update you on what we know and see.
Maddie had a quiet night. We were worried her blood pressure would drop once they started the TPN and lasix drip last night. She did okay with that and actually has a high blood pressure right now. I am not sure what that means. Maddie lungs are still doing a good job. She is getting a small amount of oxygen in a mask and having stats in the 97-96 percent range.
Maddie is peeing a lot (through a cathetor). She is very puffy right now. Her weight is up by about 8 pounds. Her hands and feet look like they have been blown up like balloons. Hopefully she will keep getting that off of her before it starts affecting her lungs.
She wakes up and talks, asks for water, tells us if she hurts, asks where we are, etc. She is loopy from all the pain medicine.
For us, it is still an hour by hour battle. I didn't sleep well last night. I kept waking up and checking her stats, urine output, etc. There is something about the darkness of night that increases my anxiety.
We continue to sit beside her, rub her head, and love her. We have had lots of family with her. If love could heal her, she would be walking out the door with us today.
Love,
Jane
Saturday, September 24, 2005 8:31 AM CDT
Update 8:30 Maddie is quietly watching some tv. She just got some Benadryl. They have started her back up on TPN. We will have to monitor her so closely tonight. We didn't communicate the fact that we did not go to Duke very well. Maddie was not stable enough to make the trip. We are at the PICU at DeVos. Please keep the prayers coming. We are talking with God through out the day. We are simply spectators here.
Update: 4:45 pm. Maddie has been sleeping since the last update. She continues to be stable. The docs are back and things seem to be the same. They've started her on some meds and maybe TPN this evening. Minute by minute.
Update: As of 2:30 pm, Maddie continues to hold on. She was awake for a short time to entertain family. She's one tough little girl. We'll take it moment by moment.
Dear Friends,
When Maddie was about two years old, I asked her to pick up her doll. She turned to me and started tapping her chin with a finger and raising her eyes up like in thought and said, "Me thinking, me thinking..........No."
When Maddie was about three, I asked her to pick up a doll. She said, "Me do everything. You do nothing."
I could list way more stories like this. Our girl has been feisty since day 1. It was startling in contrast to Max who was so much more easy going.
Needless to say, the qualities that drive me most crazy in Maddie are the ones I most admire.
Maddie continues to pee really well. The doctors are surprised. Last night they had given up all hope. Today, very cautiously and with great warning, they admit they do not know how this will all go.
They are going to give her more fluid and try to keep her stable. I think she is going to get the Rituximab to fight the EBV. As long as she is fighting, we are beside her fighting.
It still all boils down to trust and hope. God and Maddie are working up a plan and we are sitting by and watching.
If I haven't said it enough before. I thank God. I thank God. I thank God.
I am so proud and happy that she is my daughter. I like her as much as I love her. Thanks for not giving up on her. Please keep the prayers coming for her. Things can change by the minute.
Much love, Much hope, Much trust.
Jane
Saturday, September 24, 2005 2:13 AM CDT
Dear Friends,
We have succumbed to God and Maddie's will. We have decided that the outcome for her will between them. The doctors offer only more pain and discomfort for her.
We have talked to her. Family has visited and we have prayed for whatever is planned and always asking for that miracle healing.
We are relying on trust and always carrying a little hope.
Last night Maddie kidneys were not working. Even with Lasix she was not peeing at all. Now her kidneys are back in action and pumping out a good amount.
We have no idea where this will go. And it is still up to God and Maddie. We will continue to rely on trust and hope.
We cannot thank you enough for the prayers. Please keep praying for comfort for Maddie however that may come. Of course we hope that it is life, but we love her so much that we will accept whatever happens.
Love,
Jane
Friday, September 23, 2005 10:27 PM CDT
We're waiting for Maddie's angel to come for her. No more pain for our princess. Jeff
Friday, September 23, 2005 9:17 AM CDT
Jane gave Maddie the ok. it's out of our hands (always has beeen).
Things are going downhill fast we need everything got!
1:30 pm update; They are working on getting a jet late this afternoon to take Maddie to Duke. Duke has a room waiting on 5200 for her. Right now we are living on two things. Trust and hope.
Dear Friends,
The doctor just came in. They are very worried about Maddie. They will talk to Duke and see if they would like us to aeromed her down there. Her EBV seems to be active and I am not sure what they are going to do.
Love,
Jane
Thursday, September 22, 2005 7:50 AM CDT
Hopefully the last update of the evening: 7:30 pm Maddie has slept most of the day away. She is resting comfortably. We love her so much and hope tonight and tomorrow bring more news of improvement. Thanks for your thoughts and prayers.
Update: 4:00 pm Things are looking more stable. The PIC line went in well. Maddie went down for a CT Scan. The doctors thought it looked like the mass had grown some near the bladder. They are sending the scans to Duke so they can look at them. We are still rolling with the punches and dealing with changes being made as new information surfaces.
Update: 12 noon The 'kidney' doctor just came by. After looking at the ultrasound, he is feeling better about Maddie's kidneys. The ultrasound showed a very full bladder. They have put in a catheter and are monitoring her carefully. They are making some med changes. The doctors and nurses here have been wonderful and attentive. They give us frequent updates as new information comes in. I would say that Jeff and I are breathing easier but praying just as hard. Things can change too quickly.
Maddie is getting a PIC line put in right now. Her meds are having compatibility issues and they needed another line. She should be done soon.
Dear Friends,
Things are not looking as good this morning as they did last night. Due to the treatment and the pancreatitis, Maddie's kidneys are starting to become stressed. She is not outputting enough urine.
They are working on this right now and taking blood and following the results.
It is one of those times things can get better quickly or worse. Please pray for Maddie. I know that has been a common refrain for the past two years but I also know how much our prayers have done. Our God can do great things and so can our girl.
We will update often.
Love,
Jane
Wednesday, September 21, 2005 1:59 PM CDT
Update: 5:45 pm
I have said this before and often to many transplant parents. I am always relieved when there is a name for the problem. Because with a name comes a treatment. Well, Maddie's problem has a name: pancreatitis. And they have started a treatment. I assume we will be here through the weekend, but hopefully Maddie will feel much better when we leave. God bless that little girl.
Now remember, things may totally change tomorrow. Diagnosis' have been known to change. Treatment too. One day at a time.
Dear Friends,
I will make this a quick update. Maddie and I arrived at the hospital around 5 this morning. She was in a lot of pain. The bleeding that she had had during the night had ended by then. It was unusual bleeding for Maddie. It was very dark and looked like ‘old blood’ to me (consider the source).
We went to the Emergency Room. The transplant doctor, Dr. Pietryga, met us there. They took x-rays of her abdomen and drew labs. The x-rays looked fine. Her hemoglobin was very high. Her electrolites were very wacky. They decided to admit her onto the transplant floor and try to straighten this all out.
She is now on pain medicine for her abdomen. They drew blood to check for infections. Her temperature is low and they suspect she may have some infection in her body. They have started her on two new antibiotics. They are also going to take her for a CT Scan and see what is going on with the mass. I pray it is causing the problem due to it breaking up NOT GROWING. Feel free to join me in prayer.
Overall, Maddie looks pale, feels crummy and is sleeping quite a bit. Overall, I look like I’ve been up since 2, feel crummy and slept for 10 minutes.
Seriously, last night we were very worried. It is so hard to know what to do. Being here is less scary.
Please keep praying for Maddie that she feels better and the mass goes away quickly. Maybe God will get sick of us asking and asking and asking and.....
Love,
Jane
PS The boys are fine. Grandma and Grandpa Up North came down to get them after school. Thanks Penny for getting them to school. Thanks Cheryl for taking Sam this morning. It takes a village to raise the Trimper kids.
Wednesday, September 21, 2005 3:27 AM CDT
Well, here I sit at 4:30 am thinking what should I do. Update, what else! Maddie has not been doing well the last couple of days. She’s been feeling real bad, not eating… She started passing more blood last night in her stool. It was one of those (many) very stressful days and nights worrying about her and wondering what we should do (go to GR, Duke???). She passed more blood through the night and has bad pain in her upper stomach area. She has thrown up several times in the past few hours. Not much to throw up from not eating. Jane and Maddie headed for Grand Rapids a few minutes ago. We hope to find some answers. Like Jane said before, we’re just not sure how to handle things away from Duke. We hope this was the right decision.
Max also had a rough night. He was up past 11 pm with bad leg “cramps”. Not sure what else to call them. I can hear him moaning as I write this. Not sure what’s going on with him either. I hope he wakes up this morning and he’s feeling fine.
On a good note, Sam is doing great! Just a cold, but doing great! Some good news!!!!
Jeff
Just talked to Jane. They've decided to admit Maddie to figure things out. Hopefully a short visit. She was still on a lot of pain when Jane called. I'm heading down there now.
Sunday, September 18, 2005 3:15 PM CDT
Dear Friends,
Yesterday was an interesting day. Maddie and I arrived home around 2 in the morning. She received some FFP for clotting and a bag of blood. It was a weird episode. It wasn’t as bad as the first one but worse than the last one we had at Duke. Maddie, of course, handled it all very well.
It was a tough day for me. I am so used to being at Duke where I know what to do in any situation, what number to call, who to contact, where to go, etc. It was hard being new at DeVos and knowing exactly what to do. They made it a good experience and our doctor there was very good about contacting Dr. Kurtzberg. He told me this wasn’t a time for egos and Dr. Kurtzberg certainly knew Maddie better than he did. He was great.
I think the hard part about Maddie bleeding is that there really is not much you can do about it. Other than monitoring her hemoglobin and loading her up with blood, it really just needs to run the course.
She still has some blood today but it looks very dark. This indicated that it is old blood.
We’ve had a quiet day. Maddie has napped a lot and the boys are just hanging out. It has been nice having the windows open and feeling the fresh air. The Lions could have done better, but hey, who’s complaining. We could have watched them in a hospital room.
Another part of Anne Lamott’s book that runs through my head often is something she said about a friend of hers. She said in the morning her prayer is simply, “Whatever.” And at night it is, “Oh, well.” I like that. There is someone bigger and better in charge than us.
Whatever.
Love,
Jane
Saturday, September 17, 2005 6:27 PM CDT
Hello.
We’d like to start out by thanking Millard Furniture, Chemical Bank, and Penny Barber for all they’ve done for the TV raffle. We’re not sure at this point how much was raised for the foundation, but it’s all going to help us fight MLD. Thank you!
Weekend Report:
Maddie has has blood in her stool since Thursday. It got better as the day went on Friday. It started up again Saturday early AM and continued. It was one of those mornings where we kept asking each other, should we take her in, should we wait... a hundred times. Jane took Maddie to GR this morning. They decided, through contact with Dr. Kurtzberg, to give her a blood clotting infusion. Her hemoglobin was fine. Things were going fine then she started to bleed some more. They wanted to keep her there until she stopped. It’s 7:30 pm and I haven’t heard from them in awhile. I would guess if she doesn’t stop bleeding, they’ll keep her.
That’s all for now.
Have a good weekend.
Jeff
Jane just called. Maddie's hemoglobin has dropped a fair amount. They want to give her some blood. Not sure at this point if they're coming home.
Good game State!
9:00 PM: Maddie just called me. Jane went down to get her some chips and she snuck a call in. She sounded great and "no big deal" routine kind of call. What a girl! She said the doctor said if she starts stooling, she can come home tonight. Words from a seven year old. Jane came back in and said the blood has not come yet. Gonna be a late one.
Jeff
Home at 2:30 am. Bleeding continues. Maybe heading back in the morning.
Thursday, September 15, 2005 4:29 PM CDT
Dear Friends,
It has been a busy and interesting couple of days. Penny has started helping in the morning. She is great. She helps me with the boys while I get Maddie’s meds ready. (Maddie has three morning infusions that I give her, plus her oral meds.) Then Penny takes the boys to school. That really helps because I have to stay and switch pumps. Sometimes I feel like Martha Stewart. Not in the talented, creative, home making kind of way. But in the ankle tether, can’t leave the house kind of way.
After the boys left yesterday, Maddie and I went to DeVos Children’s Hospital and met with the doctors, nurses, and many of the staff members at the BMT clinic/unit. They were very nice and I think Maddie was very comfortable. I know I was. I was able to meet with someone from the home infusion company. They will be coming out tomorrow to train me on the new pumps and bring supplies. It was decided that Maddie would be seen by the clinic every Friday. We will go again next week and get her Rituximab. The IVIG will be given at home from now on.
Today we had physical therapy and school. Maddie did well with the school piece but was in a lot of pain for PT. Her knees hurt badly.
The boys have been enjoying school. Max is looking worn out. I guess this means he is working hard. Sam loves going to school but is terrible at relaying the details of the day.
I just got back from the grocery store. I love being home.
We hope you are all having a good week.
Love,
Jane
Tuesday, September 13, 2005 8:00 AM CDT
Dear Friends,
Yesterday was cleaning day. I couldn’t put anything away until I cleaned out closets and made room. We aren’t good about going through the kids’ clothes and getting rid of the ones that don’t fit. Well, yesterday was the day.
I’ve spent the morning this far getting all of the stuff from North Carolina organized and now I’ll put it away.
Jeff’s dad came down Sunday night to help. Sam and Maddie had a really good time with him. It really helped to have someone keep them busy. Maddie set up her coffee shop in the playhouse. Grandpa made her a shelf for all her canned goods and they set that up. She has been more active and I love it.
This morning Jeff left for school early and Grandpa and I were in charge of getting the boys ready. At one point I said to him, “This is easy”. He dropped the boys off at school and when he got back I saw Max’s meds still on the counter. Did I say easy? Don had to run them up to the school. I am sure we will get our own new schedule in the morning. Our friend Penny is going to come help me each morning. (Penny, remind me about the meds, ok?)
We are still basking in the joy of being home.
Love,
Jane
Sunday, September 11, 2005 6:54 PM CDT
Dear Friends,
Boy, I don’t know what to write tonight. Being home is wonderful, wild, crazy, overwhelming, emotional and just beautiful.
I think we were all very tired today. Jeff and I remember the old days of being out having fun until 3 or 4 in the morning. Let me tell you, those days are over. We were really dragging this morning.
Last night when we pulled into the driveway, we say signs that JoJo and the boys had put up for Maddie. The kitchen was full of things for Maddie – one dollar bills hanging from the ceiling, more signs, and balloons.
Maddie has been playing, talking, and moving more than I have seen her do in four months. Home is a good medicine.
Sam is my shadow. Kippy is Jeff’s. Max just laughed and laughed at everybody.
I think it will be an early night for us all. We hope you all had a good weekend.
Love,
Jane
Friday, September 9, 2005 4:09 PM CDT
We're home. 3:30 a.m. Wow!
Hello.
Maddie was at 11.7 this morning. She needed an infusion if between 10-12. I just dropped them off at clinic and we have our pass to head home from Dr. K. Now, we haven't left town yet, so hang in there. I'm finishing packing and then I'll be off to clinic to pick them up. Gonna be a late one. Jeff
Dear Friends,
Have we ever mentioned that we live day by day? I don’t know how many of you were able to read Jeff’s update, but as soon as he arrived last night, Maddie started bleeding again. She has been completely blood free in her stools for about a week but last night started discharging blood by itself. We weren’t sure exactly what to do. It wasn’t to the degree of Maddie’s massive blood episode, but it was certainly note-worthy. She passed a couple of good size clots this morning (sorry I know the updates can be gross) at 5:00. We decided to take her to 5200 (Duke hospital) just in case she needed to get blood. It can take a while and we wanted to get the process started. The bleeding remained pretty tolerable and she didn’t need to get an infusion and it slowed down through out the day. The Amicar seems to be working well for her.
I think this bleeding means one of two things. One: God needs us to stay in Durham. Two: God is showing us that if Maddie bleeds again, it will be okay and not serious like the first episode. Dr. Kurtzberg told me last Tuesday that Maddie could start bleeding again and if she did to go to Grand Rapids. That has been weighing on me all week. Grand Rapids seems so far away and the photos in my head of that awful night are just way too clear. This bleeding today really was a positive thing for me. I realize Maddie’s body can handle the bleeding with the help of Amicar. Traveling the hour doesn’t worry me anymore.
There is a plan in place (via Dr. Kurtzberg). If Maddie bleeds tonight, we need to stay. If she doesn’t bleed tonight, we will draw her labs tomorrow. If her hemoglobin is above 12 (yeah, right) we can leave. If it is between 10 and 12, we need to get an infusion and then can leave. It is below 10, we need to stay. That means she lost a lot of blood during today’s episode and Dr. Kurtzberg doesn’t feel comfortable with us traveling. It seems like a good plan.
Maddie is handling it all amazingly. She is pretty go with the flow now that Jeff is here.
All week, people have asked if we were excited. We were happy but not really ‘excited’. Jeff said last night that this is why he doesn’t get too excited until he actually sees us walk in the door. He is so right. We know we will be home soon and that is good enough for us right now. We will save the excitement until we pull in the driveway.
Love,
Jane
PS Sam and Max are great. Max got a 4 out of 5 on his spelling test. Sam “kicked JoJo’s butt in Candyland”. (Direct quote)
Friday, September 9, 2005 9:35 AM CDT
Hello.
I made it down about 11 pm last night. It was great to see Maddie and Jane. It was only about two minutes of feeling “good”. Maddie started bleeding again last night. It continue all night (blood clots). We (Jane) decided to take Maddie to 5200 at 6 am. Maddie was not happy that we had to go in. She knows she’s close to going home. We then went over to clinic. All her labs looked fine. She is at clinic now doing all her Friday meds. So, we’re not sure at this moment what’s going to happen as far as coming home. We hope we’re still on for our trip to Michigan. It all depends on how she does today. Please do what you all do so we can get these two home to Stanton.
Jeff
*Maddie looks great and is moving around so more better than three weeks ago. She's come a long way!
Dear Friends,
Did you know that we have been in North Carolina dealing with this mass longer than we were in Minnesota for Max’s whole transplant? That probably explains why this little apartment is bursting at the seams. Jeff is flying down Thursday night and he will really have to spend Friday working his packing magic.
Sue called today. She spoke with the nurse practitioner at DeVos. Things will be all set so we can leave Saturday. Sue also commented that the NP and doctor at DeVos seem friendly and easy to work with. That is good news. Maddie is a pretty complex patient right now.
I forgot to mention yesterday that Dr. Kurtzberg said the battle is half over with Maddie and this mass. That is a whole lot better than when we arrived. But we’ll keep working on it. Slow and steady.
Okay. Now for the boys. I have been so focused on Maddie this summer, I feel like I have neglected the boys - especially Max. That is changing and I am very eager to make sure Max is getting everything possible to help him gain back skills. Slow and steady.
While in Durham we met another MLD family from Chicago. They also have three children with this disease. Their youngest, Jack, was at Duke getting a transplant. They are very inspiring to us with their strength and faith. www.caringbridge.org/il/evanosky You should check them out. They are a beautiful family.
That’s it for tonight. We have a lot to be thankful for. These four months have been a tough time. We’ve met new families, lost more kids, and have really been challenged. Rest assured we rely on God every day. We pray. We ask. We thank Him for these three kids. We now know ‘humble’ and ‘grateful’ like we never knew before.
I saw Queen Maddy’s mom, Richelle, at clinic last Friday. The were leaving the next day to go home to California and make arrangements for Maddy. She said to me, “God is good.” Yowza. She is a great lady and she is right.
Love,
Jane
Wednesday, September 7, 2005 7:08 PM CDT
Dear Friends,
Did you know that we have been in North Carolina dealing with this mass longer than we were in Minnesota for Max’s whole transplant? That probably explains why this little apartment is bursting at the seams. Jeff is flying down Thursday night and he will really have to spend Friday working his packing magic.
Sue called today. She spoke with the nurse practitioner at DeVos. Things will be all set so we can leave Saturday. Sue also commented that the NP and doctor at DeVos seem friendly and easy to work with. That is good news. Maddie is a pretty complex patient right now.
I forgot to mention yesterday that Dr. Kurtzberg said the battle is half over with Maddie and this mass. That is a whole lot better than when we arrived. But we’ll keep working on it. Slow and steady.
Okay. Now for the boys. I have been so focused on Maddie this summer, I feel like I have neglected the boys - especially Max. That is changing and I am very eager to make sure Max is getting everything possible to help him gain back skills. Slow and steady.
While in Durham we met another MLD family from Chicago. They also have three children with this disease. Their youngest, Jack, was at Duke getting a transplant. They are very inspiring to us with their strength and faith. www.caringbridge.org/il/evanosky You should check them out. They are a beautiful family.
That’s it for tonight. We have a lot to be thankful for. These four months have been a tough time. We’ve met new families, lost more kids, and have really been challenged. Rest assured we rely on God every day. We pray. We ask. We thank Him for these three kids. We now know ‘humble’ and ‘grateful’ like we never knew before.
I saw Queen Maddy’s mom, Richelle, at clinic last Friday. The were leaving the next day to go home to California and make arrangements for Maddy. She said to me, “God is good.” Yowza. She is a great lady and she is right.
Love,
Jane
Tuesday, September 6, 2005 3:17 PM CDT
Dear Friends,
We had one of our quickest Tuesday clinic visits ever. We were out of there before 3:00. Maddie was infused with her vitamin K and her IVIG. Dr. Kurtzberg and Sue came in to talk with us. They felt comfortable with us leaving for home this weekend. Dr. Kurtzberg spoke with a doctor at Devos. She has worked with him in the past. They decided that Devos would take care of all of Maddie’s infusion needs (IVIG, vitamin K and Rituximab). They are also recommending a home health group who can provide me with the infusions I do at home (Zosyn, Amicar, and Protonix - plus TPN). If this can all get organized by Friday, we will leave this weekend. We will come back to Duke in four weeks. I am very nervous and excited all at once.
Max is in his post-Botox funk. The week following injections he gets very tired and lethargic. Hopefully he will be perked up by this weekend. I can not wait to see him and Sam. What is better than tucking all three kids into their own beds? Really, what is?
The reality of how much we have in this apartment is hitting me. Better go toss and pack.
Love,
Jane
Monday, September 5, 2005 7:37 PM CDT
Dear Friends,
There really isn’t too much new information. Maddie and I had a great time with the Carroll girls. We took them to the airport yesterday and they made it safely home. It was a good visit. We haven’t done too much since they left.
The boys had a good time yesterday in Chesaning. They have been relaxing today. Jeff sounded like a very tired single dad tonight after giving the kids baths, packing backpacks, lunches, etc.
Tomorrow we have our long clinic day and time with Sue and Dr. Kurtzberg. We are hoping to hear of a plan for us to go home. If the cells are not ready in NYC, we should be coming home pretty soon. If the cells could be ready soon, we will wait for those. Truthfully, even though I am anxious to get home,I really hope it is the latter. I am ready to start being active in getting that mass smaller.
We hope you all had a good weekend.
Love,
Jane
Saturday, September 3, 2005 3:59 PM CDT
Dear Friends,
The cousins are having fun in Durham. At least it has been fun and very good for Maddie to have Molly and Grace around. She has been smiling more and even eating more. It has been a slow-paced vacation for Molly and Grace, and they have handled it so well. They are great girls.
We were at clinic most of the day yesterday getting the Rituximab. Molly, Grace and Sally swam and did a little shopping. They came to the clinic for the last hour or so and kept us company. This morning we went to Build -A-Bear courtesy of Grandma Strawberry. It was fun. Maddie made a horse. Molly made a bear and Grace made a candy corn bear. Then we went to California Pizza Kitchen where they have outdoor seating and had lunch. Maddie didn’t really eat but it was good for her to sit around the table and participate in conversation.
The rest of the day has been pretty quiet. Maddie and I have been doing infusion meds. The girls are watching Pokemon as I type. We will certainly miss them when they leave tomorrow.
The boys are also having a good time. They have been swimming and relaxing. They are going to Chesaning tomorrow for my grandma’s 97th birthday.
Max had Botox shots yesterday. He was really getting tight and needed the shots. Sam went with them and I think he is now very thankful he doesn’t get Botox.
We have Tuesday clinic where we hope to learn more about when we can come home.
We hope you are all having a good weekend.
Love,
Jane
Thursday, September 1, 2005 6:19 PM CDT
Dear Friends,
Maddie had her CT Scan today. It was short and easy. Sue called this evening and said that it was the scan showed that the mass was the same size. That really wasn’t surprising or disappointing. She also said that our cells they sent to Sloan-Kettering in NYC would be ready ‘soon’. (Just a quick reminder: They took a bag of blood from Jeff and me. They sent it to NYC where they will pick out specific cells targeted to take care of EBV. They will grow them and then give them to Maddie.) We aren’t exactly sure what ‘soon’ means. Sue said they would check on it and we would talk about it on Tuesday. I think coming home is somewhere in our near future. If the cells are ready in the next couple of weeks, we will wait and give those to Maddie. If it is going to be longer, they will probably send us home and plan monthly visits back to Duke. The EBV will be an issue that Maddie will be dealing with for a long time. But the wonderful news is the mass is not growing, it is slowly getting smaller and the doctors and Sue are on top of the problem.
Sally, Grace and Molly arrived about 4:00. Maddie perked up as soon as they got here. They are watching a movie right now and enjoying each other’s company. It feels so good to have them here.
The boys finished off their week of school. I think they are all looking forward to a four day weekend.
Some of you already know that Queen Maddy from California passed away. Please keep her family in your prayers.
The loss of so many kids is the part of this journey that we could never describe with words.
Love,
Jane
Tuesday, August 30, 2005 8:49 PM CDT
Dear Friends,
It was a long day at clinic. We are going to start getting IVIG every other week. This was our week off but Maddie’s hemoglobin finally dropped low enough to warrant a blood transfusion. It took a while to get the blood and then the infusion lasted two and a half hours. Afterwards we met with Dr. Kurtzberg and Sue. We are going to try to go down on the prednisone again. We’ll take smaller steps this time and see what happens. We are going to try to figure out a plan after Maddie’s CT Scan on Thursday. We will talk again next Tuesday.
Maddie had a good day. She was cute and fun. We played games at clinic until the Benadryl pre-med got the best of her. She took a long nap. I was able to talk with some other moms. I saw Queen Maddy’s parents. She is showing good improvement. Her parents looked good and are thanking God for every move forward. Please keep praying for Maddy. www.caringbridge.org/ca/queenmaddy
The boys have had two good days of school. Max said it was good and Jeff says he hears positive things from his teachers and parapro. Sam had his first full day of kindergarten. He said it was good. He had fun playing with his friends. Jeff is adjusting to middle school quickly. I would say that all three have had good days and are really tired. Thankfully Grandma Up North is there to help. She came down for this week and will go home for the weekend and come back again next week. She is an enormous help and I am not sure how we would have done this without help.
We found out yesterday that Sally, my sister, and her two girls, Molly and Grace, are flying down for the weekend. Maddie is very happy and excited to see them.
We hope you are all having a good week.
Love,
Jane
Monday, August 29, 2005 9:38 AM CDT
Dear Friends,
I think this update would be more exciting if it was coming from Stanton. More is going onthere than in Durham.
The campers had a good time on Friday night but only two were actually in the tent by morning. Sam had his barking cough again and went in the house with Jeff. Max woke up on a nice full air mattress having slept very well. Joanne, meanwhiile, was on a perfectly flat air mattress and was actually on the pump. Max found this to be hilarious!
Today is back to school day. Max has a half day today and Sam is just going to visit his kindergarten room for an hour. I wish I was there and truthfully, so does Maddie. We had to take blood today and on the way, she asked me a dozen questions about school. I think she is anxious to start and I pray it happens within a few months.
Jeff started at the middle school today and I will be eager to hear how it went. I’ll call tonight and hear how all three of my boys did at school today. :)
Meanwhile in Durham, Maddie and I are BORED. I am trying not to complain because the reality is that boring is good. We have our long clinic day tomorrow with Dr. Kurtzberg and Sue. Maddie has a CT Scan on Thursday. I am hoping by the following Tuesday we can take all the new information and come up with some kind of plan. We shall see.
We hope all of the Central Montcalm teachers and students are having a good day!!
Love,
Jane
Saturday, August 27, 2005 7:01 AM CDT
Dear Friends,
Maddie had clinic yesterday. It was uneventful except for talking with Sue, our nurse practitioner. Maddie gets Benadryl before her EBV med. She slept for a big chunk of the time. She continues to feel good on and off. She is still having bleeding.
The boys have been having a good time. Joanne came over last night and they had a cook out and camp out. They called from the tent and I heard a lot of laughing and chaos. I am looking forward to hearing if anyone actually was able to sleep.
We hope you are all having a good weekend.
Love,
Jane
Thursday, August 25, 2005 7:26 PM CDT
Dear Friends,
Jeff is back at work again today. The boys had fun with Grandma Strawberry. Our friend Penny will be helping Jeff in the mornings once school really gets rolling. She came over today and helped with Grandma. I am sure the boys loved having another adult provide some attention.
Max had an open house tonight for the Upper Elementary School. Jeff took him. Jeff and I are having a lot of anxiety about the change for him. How will the adults relate to him? How will the kids treat him? Will he happy to see old friends? Will he be sad? Jeff said he felt like Marlin (from Finding Nemo) not wanting to let go of his child. (FYI We have watched WWWAAAYYY too many cartoons in the past three years!) Max meanwhile is just as cool as can be about it. I asked Jeff tonight on the telephone, “Do you really think he feels good about it?” Jeff said yes. I think we have a lot to learn from that child.
Parenthood! Who possibly knew it was so hard??
Maddie continues to feel well with moments of yuckiness. She looks so good. Her skin has good color. She has steroid cheeks but her other puffiness is better. Her hair is getting longer. Her body has filled out.
We have been playing lots of games. She has really enjoyed the mail. We sit on the couch, TV turned off, and read the cards and letters. Thank you so much for sending them.
Tomorrow is her long clinic day. She will get her EBV med and possibly blood. Her hemoglobin number is hovering close to transfusion time. She keeps holding it off.
I feel like I need to add a blurb about Sam. He had a cough last night. He gets really croupy sounding. He sounds good on the phone and makes me talk to one of his toys every night. Last night it was Spiderman.
Have a good night.
Love,
Jane
Thursday, August 25, 2005 7:16 PM CDT
Dear Friends,
Jeff is back at work again today. The boys had fun with Grandma Strawberry. Our friend Penny will be helping Jeff in the mornings once school really gets rolling. She came over today and helped with Grandma. I am sure the boys loved having another adult provide some attention.
Max had an open house tonight for the Upper Elementary School. Jeff took him. Jeff and I are having a lot of anxiety about the change for him. How will the adults relate to him? How will the kids treat him? Will he happy to see old friends? Will he be sad? Jeff said he felt like Marlin (from Finding Nemo) not wanting to let go of his child. (FYI We have watched WWWAAAYYY too many cartoons in the past three years!) Max meanwhile is just as cool as can be about it. I asked Jeff tonight on the telephone, “Do you really think he feels good about it?” Jeff said yes. I think we have a lot to learn from that child.
Parenthood! Who possibly knew it was so hard??
Maddie continues to feel well with moments of yuckiness. She looks so good. Her skin has good color. She has steroid cheeks but her other puffiness is better. Her hair is getting longer. Her body has filled out.
We have been playing lots of games. She has really enjoyed the mail. We sit on the couch, TV turned off, and read the cards and letters. Thank you so much for sending them.
Tomorrow is her long clinic day. She will get her EBV med and possible blood. Her hemoglobin number is hovering close to transfusion time. She keeps holding it off.
I feel like I need to add a blurb about Sam. He had a cough last night. He gets really croupy sounding. He sounds good on the phone and makes me talk to one of his toys every night. Last night it was Spiderman.
Have a good night.
Love,
Jane
Wednesday, August 24, 2005 9:24 AM CDT
Dear Friends,
Yesterday was clinic day for us at Duke. It was a long day. They were very busy but as always, they are worth the wait. Maddie was able to play a new card game with another little girl named Emma. They had a good time and she commented on the way home that she made a new friend. It makes me long for the day she can go back to school and make lots of friends.
The only change that occured is that we are going to cut back on her TPN by 15 percent. Hopefully she will keep her weight up and maybe eat a little more.
The boys are doing well at home. Jeff went back to school today for a teacher workday. I would imagine it was a little hard to get up and going this morning.
To you Central Montcalm/Crystal folks: Christa was one awesome lady. My body is in Durham but my heart is at home.
Love,
Jane
Monday, August 22, 2005 3:34 PM CDT
Hello.
We made it home with little trouble. Max and Sam were once again great travelers. We had a little delay in Detroit. We also had a few troubled spots during our trip. I’ve said this before, airlines are NOT handicap friendly. We made it and the boys were great.
We started out our day running errands (bank, post office…). Max had OT then PT today. He did a good job for being so tired. Jen (PT) was back today. She’s been off for a while. It was good to see her. I’ve been busy trying to get things organized for school (all three of us). This year’s school update: I will be in the middle school this year. Max will be in 4th grade at the Upper Elementary. Sam will be in kindergarten at Stanton Elementary. Jane won’t be going back to work this fall. She will be taking the first semester off. She will be able to focus on Maddie. I hope they come back before the second semester!
Maddie sounded good today. She did throw up this morning. They cut out one of her meds to see if she would feel OK, but she’s back on it. I think they are enjoying the quiet. It’s always so crazy and loud when we’re all there. Maddie has a hard time dealing with it all at times. It’s getting harder and harder to leave her. I really want to go back down, but it’s too hard to leave. So, it may be a while until we see them again.
As the summer comes to an end, we’d like to thank every one who has helped us out the past few months. Many people helped with the house, watched Kippy, mowed the lawn, sent cards, sent letters, help watch the kids, support in the guestbook, so many different things. Our family has flown/driven down to NC many times these past few months, helped out around the house… This was not an easy summer on our family (and it continues). You all made it a little bit more tolerable. It will be nice some day when we can return the help, favors… to others. So a BIG thanks to all of you!
Jeff
A nice journal update from Aunt Joanne:
As I sit on a Northwest flight not sure if I will make it to my destination I will begin my entry. The stewardness has just assured us she has checked the engine and everything appears to be "ok".
I can not believe how quickly two weeks can go by when spent with Maddie Trimper.I had so much fun with her. She looks good and she feels good. I hope it will continue. Maddie has spent so much time around adults sometimes you forget she is only 7 years old. She engages in conversation just like another girlfriend. Maddie seldom ever complains. I am so proud of how well she has handled everything.
We spent a lot of time playing games, bingo, cards, coloring and taking short trips out of the apartment. Playing bingo involved winning prizes. So we ventured out often to pick up prizes so the game could continue.
Jane and Maddie seem to have their own groove. They seem to work well together.Maddie gives Jane a look and Jane knows her tummy hurts. A quiet little grunt and they are off to the bathroom. It is quite an operation.
I am so thankful and grateful that Maddie's mass is down a centimeter and she is feeling well and looking good. I know how quickly things can changed, but we will take her present statis for now.
In this game called life we could not have picked a better team then you our faithful prayer warriors. Many of you have never met these kids but have grown to love them. Those of you who know them, how could you not love them! I think I may be bias.
Just for the record, I did beat Jane at cards one of the last couple of days I was there. Maddie has truly loved the cards and letters.
Aunt Joanne
Sunday, August 21, 2005 3:16 PM CDT
Dear Friends,
Joanne, Jeff, Max, and Sam all got to the airport safely. They were on separate flights - both Northwest. We weren’t sure they would take off as scheduled due to the strike. Joanne made it all the way to Flint. The boys are still in Detroit. They were delayed and hopefully will be off to Lansing soon.
Then there were two. The apartment is quiet. Maddie and I have had a peaceful day. She napped, ate a little and we played some games.
She also popped a lot of bubble wrap. She’s addicted. We found a good website for popping too. If anyone else is addicted, it is www.virtual-bubblewrap.com . You can pop bubbles and it sounds very realistic.
Overall, she is having an okay day. I think we both are missing the boys and Aunt JoJo. We are going to go to the grocery store soon.
Thank you so much for all of you who sent Maddie cards and letters this week. She really enjoyed the mail. If you would still like to send her a card, the address is at the bottom.
Please keep Maddy Bates in your prayers. She is known as Queen Maddy and is having a rough time in the PICU right now. www.caringbridge.org/ca/queenmaddy .
We hope you all had a good weekend.
Love,
Jane
Maddie Trimper
5507 Butterfly Lane
Building 3, Apt. 102
Durham, NC 27707
Saturday, August 20, 2005 9:16 AM CDT
Sunday afternoon update: The family of Maddy Bates (Queen Maddy), a little girl in PICU right now, is requesting prayers for Maddy's life at 3:00 this afternoon. They are praying specifically for a miracle to turn around her complications and give her life.
www.caringbridge.org/ca/queenmaddy
Dear Friends,
There really isn’t much new to report. Jeff’s new pictures tell Maddie’s story pretty well. Grandma Strawberry made her some new nursing scrubs. Maddie fills the pockets with all kinds of stuff we have just sitting around - Heparin, saline, alcohol wipes, etc. You know just normal seven year old stuff. :)
Maddie is also sporting some major steroid cheeks. It makes her look bigger than she is but she is a healthy 51 pounds right now. She is still bleeding some. We keep a close eye on it. We continue to blame it on the mass getting massacred.
It has been really good to have the boys here. We have been taking it kind of easy. It is hard to believe they will be flying home tomorrow.
Sam is still madly in love with me and Max is telling me to back off. Both sound normal for 6 and 10.
Joanne has been a big help - especially keeping Sam busy. They were outside playing ball last night.
We drew Maddie’s labs a little while ago and are waiting to see if she will need some blood. It is hard to judge how much she is losing. They like to keep her filled up - just in case.
We hope you are all having a good weekend.
Love,
Jane
Thursday, August 18, 2005 6:14 PM CDT
Hello.
We made it down! It was a good trip. Max and Sam did a great job traveling by plane this time. They are well-traveled boys. We “rode” the walkways in Metro, ate huge airport hamburgers with onion rings and did a lot of people watching (my favorite). They are so laid back, go with the flow boys.
Jane picked us up at the airport. The boys got to her first of course. Sam controlled the entire conversation back to the apartment. Max laughed, Jane and I tried to get a word in, but the Sam man ruled.
Maddie and Joanne were waiting for us at the apartment. WOW, it was great to see Maddie (and Joanne). Maddie had presents (cookies, cupcakes…) wrapped and waiting for us. She seemed real happy. She had many stories to tell. We had a lot of fun catching up and laughing. Jane and I were able to sneak out for dinner. Now, Maddie and Sam are looking at Pokeman cards, Max is complaining about Maddie's TV shows. Things seem right.
Jeff
Tuesday, August 16, 2005 7:30 PM CDT
Dear Friends,
With Jeff's entries, you get the extra bonus of pictures. He even updated them again tonight. I know I have a bias, but boy, those kids look cute.
Here in Durham, Maddie looks really good. Today at clinic she weighed 51 pounds. Thank you, God. Some of it may be fluid, but I can't help but be thrilled remembering the 38 pound girl we brought down here. She is eating a little more that she was. I think it will increase in baby steps. We had clinic today. Dr. Kurtzberg is very happy with how she is doing. We will continue on the course we are on knowing surgery is there if we ever need it. If possible, I think Dr. Kurtzberg wants to try the cells from Jeff and me that are 'brewing' at Sloan Kettering in NYC. If we have another emergency like Maddie bleeding, the plan will surely change.
We are working at getting Maddie moving more. She doesn't like it. We are making her walk into clinic, walk to get weighed and measured, and walking into her treatment room. This is a lot of work for her. The longest being the walk from the parking lot to the fourth floor clinic. We give her a ride on the way out. She understands she needs to get stronger and I understand I have to do a little tough love, but it isn't easy for either of us.
We have never given out our address here in Durham. Truthfully, we never really thought we would be here long enough to get settled and get mail, but we have and we are. Maddie would love to get some mail.
Maddie Trimper
5507 Butterfly Lane
Building 3, Apt. 102
Durham, NC 27707
The boys went to Chesaning today to play with the cousins. It sounds like they had a good time. I am anxious to see them in a couple of days.
Joanne has been a big help and has kept Maddie busy and having fun. She has also been spoiling her in true Aunt JoJo style. She has also been playing a lot of rummy with me. She is so nice to let me win almost every game :)
There is a lot to be thankful for. My thank you's during my nighttime prayers are getting longer and longer.
Love,
Jane
Monday, August 15, 2005 1:06 PM CDT
Hello.
I guess I haven’t been holding up my end of the journal. I’ll try harder to do my job. Aunt Cindy and Uncle Carl stopped by for a couple of days. They’re on their way up to Charlevoix. It was good to see them. Max and Sam had a good time playing games, swimming… I had a couple of breaks where I could get some stuff done without hurrying. They’re heading out this afternoon. Fun weekend.
Max had OT this morning and they’ll have PT later today. Back to business. Max, Sam and I are flying to North Carolina Thursday. This may be the last time we see Jane and Maddie for some time. We just don’t know how long it will be, so we’ll take a long weekend before school starts. It will be great to see them, but hard to leave not knowing where we (Maddie) go from here. Could be New York, Michigan, or North Carolina.
I have talked to Maddie the last two days. I haven’t talked to her much before that because she’s been feeling so bad. It was good to hear her voice and she sounded good. Jane and Maddie have had a nice time with Aunt Joanne. She always brings in a positive atmosphere. It didn’t sound like they had to go to clinic again today. I’m hoping we're on the right track. She is still bleeding a little. Again, we hope that’s for a good reason. Anyway, they sounded good and Maddie wasn’t sure if she wanted the boys and all the chaos. But we're coming anyway.
Penny Barber was off to a good start Saturday selling raffle tickets for the big screen TV. Chemical Bank has it on display downtown. For tickets or information, contact Penny at:
barber6@charter.net
Have good week.
Jeff
Big Screen HD television Raffle
When: Friday, September 16, 2005 8:00PM
Where: Fall 2005 Central Montcalm Homecoming Game
The tickets have arrived. Contact Penny Barber at:
barber6@charter.net for any information or to purchase tickets.
We have a HUGE TV (Thanks, Greg) that will be raffled off on Friday, September 16 at Central Montcalm's Homecoming game. Tickets are here and cost $5. We will kick off the raffle this week (August 12, 2005) at Old Fashion Days festival in Stanton. Look for the "Kick MLD" booth. They are also collecting names and addresses and the number of tickets you would like.
RCA HD61LPW42 - 61" Diagonal 16x9 DLP™ HDTV with Integrated ATSC Tuner with QAM-in-the-clear, Intelligent Signal Processing, NetConnect™, HD Connectivity & Guide Plus ™ On-Screen Program Guide
Saturday, August 13, 2005 7:45 PM CDT
Dear Friends,
Well, my Stanton partner didn't do the update yesterday. I think it had something to do with the Lion's playing. It might also have to do with being a single dad with two busy boys.
There isn't too much new here. Maddie has continued to feel well. She still has not thrown up. Yay! She is eating a little bit each day. She has been having some fun. There are times during the day when her stomach starts to ache. Overall, she is starting to feel okay. Aunt JoJo keeps her pretty happy. They sure do laugh a lot together. Now we need to work at building back her strength. Walking really tires her out.
The boys are doing fine at home. They saw Charlie and the Chocolate Factory, went back to school shopping, strolled the street of the Stanton Old Fashioned Days, and have been swimming and playing. Aunt Cindy and Uncle Carl are stopping by tonight on their way to Charlevoix. I am sure they are happy to see them.
We hope you are all having a good weekend.
Love,
Jane
Thursday, August 11, 2005 4:19 PM CDT
Dear Friends,
I think Jeff and I are going to alternate daily between a Stanton update and a Durham update. That should keep everyone “in the know”.
A few weeks ago, Dr. Kurtzberg told us that she sent all of Maddie's scans to a surgeon in New York, who many of the doctors here are familiar with, to see what his thoughts were on removing the mass. On Tuesday, they told us that the surgeon said that he would be able to remove most of the mass with surgery. They didn't tell us any risks involved except that she may TEMPORARILY need a colostomy bag while the intestine healed. I just spoke with Sue a little while ago. Since Dr. Kurtzberg is on vacation this week, she had told Dr. K the information over the phone. It sounds like she is glad the option is there but we won't be rushing into it. That sounds good to us.
Maddie also had her CT Scan. Sue also filled us in on the report from the radiologist. It says that the mass is now 1 centimeter smaller. Yeah! We'll take it. Thank you, God. We'll keep working at making it one centimeter smaller at a time until our girl is comfortable again!
I wanted to write about a topic that has been rolling around in my mind lately. This new dimension we are living in is different from the 'real world'. In the real world things like thank-you notes, newsletters and acknowledgements get done. In this sick kid dimension, 24/7, your focus is on the kids. So many people have done such kind and generous things for us. We haven't sent thank-you's or written about it on the website. Our attention is so singularly focused right now on Maddie and the boys. Please know that the lack of acknowledgement in no way reflects our appreciation.
Ironically enough, although I am obsessed with Maddie, my compassion for others has never been greater. The recent diagnosis of a friend, the death of one of our best friend's father last week, and our worry for our Durham friends is on my mind constantly. For all of you who know us, follow us, pray for us, send money, etc. please know that you have all been building that barn of shelter I wrote about a few months ago. And know that when the winds blow your way, and unfortunately they will, I will be on my knees praying for you and when I rise, I will have that hammer in my hand to start working on your barn too.
Love,
Jane
We would like to thank a few businesses that have really helped us out this summer. We are very lucky to be a part of this community where there are people like we have here in Stanton.
Thank you: Millard’s Furniture, Bookwalter Motors, and Chemical Bank.
*We finally have the tickets for the big screen TV raffle! Thank you Penny!!!!!!
Big Screen HD television Raffle
When: Friday, September 16, 2005 8:00PM
Where: Fall 2005 Central Montcalm Homecoming Game
The tickets have arrived. Contact Penny Barber at:
barber6@charter.net for any information or to purchase tickets.
We have a HUGE TV (Thanks, Greg) that will be raffled off on Friday, September 16 at Central Montcalm's Homecoming game. Tickets are here and cost $5. We will kick off the raffle this week (August 12, 2005) at Old Fashion Days festival in Stanton. Look for the "Kick MLD" booth. They are also collecting names and addresses and the number of tickets you would like.
RCA HD61LPW42 - 61" Diagonal 16x9 DLP™ HDTV with Integrated ATSC Tuner with QAM-in-the-clear, Intelligent Signal Processing, NetConnect™, HD Connectivity & Guide Plus ™ On-Screen Program Guide
Many people signed up for tickets at the fundraiser this past winter. We would like to contact you or you may place your order with Penny and she can check you off the list.
**Fellowship
We are finalizing the second year's donation for UNC and Duke. We recently wrote to Dr. Escolar at UNC. Here is her reply on what our fellow, Dr. Holly Martin, is currently working on.
"Holly will write a grant proposal to study the natural history of MLD which was identified at the last MLD foundation meeting (organized by The Myelin Project) as very important in terms of evaluating the effects of new treatments and identifying which processes are more/ less affected. I would try to organize this with the group in Italy. The study would focus on CNS disease using biomarkers and brain MRI's to longitudinally track the disease progression."
The Duke fellow, Dr. Donald Beam, has been around for our visit with Maddie. He was the fellow on duty who took care of her the night she had her massive bleeding. We are very thankful for that. He continues to work with the cells in the lab as well as the children directly affected with leukodystrophies.
If you are still interested in participating as a partner and haven't already sent your donation, here is the contact information.
Trimper Children Foundation c/o Saginaw Community Foundation
100 S Jefferson Suite 201
Saginaw, MI 48607
Tax No. 38-2474297
When we set up the fellowship program, we intended to be much better about keeping everyone informed on the progress being made. We have been terrible with that and it is a real sore spot with me. It is one of those things that keep me awake in the middle of the night. Please know that the lack of information doesn't reflect on the great things going on. It reflects more on the health issues that Maddie has been having.
Wednesday, August 10, 2005 7:50 PM CDT
Hello.
Not much to report today. Maddie had the day off from clinic. She wanted to go to the store again today. I"m hoping this is a good sign. She is still not eating much, but we’ll take feeling better first. Sounds like they’re all doing well. She has her CT scan tomorrow. I hope they see (or don’t see a mass) something they’re happy with.
Max and Sam had PT again today. Max met his part time OT today. Jill had her baby and she’ll be out for a short time. She seemed very nice. We made a trip into town to get “supplies” this afternoon. We took an after dinner dip in the pool and we’re ready for bed.
Jane and I would like to thank a few businesses that have really helped us out this summer. We are very lucky to be a part of this community where there are people like we have here in Stanton.
Thank you: Millard’s Furniture, Bookwalter Motors, and Chemical Bank.
Jeff
*We finally have the tickets for the big screen TV raffle! Thank you Penny!!!!!!
Big Screen HD television Raffle
When: Friday, September 16, 2005 8:00PM
Where: Fall 2005 Central Montcalm Homecoming Game
The tickets have arrived. Contact Penny Barber at:
barber6@charter.net for any information or to purchase tickets.
We have a HUGE TV (Thanks, Greg) that will be raffled off on Friday, September 16 at Central Montcalm's Homecoming game. Tickets are here and cost $5. We will kick off the raffle this week (August 12, 2005) at Old Fashion Days festival in Stanton. Look for the "Kick MLD" booth. They are also collecting names and addresses and the number of tickets you would like.
RCA HD61LPW42 - 61" Diagonal 16x9 DLP™ HDTV with Integrated ATSC Tuner with QAM-in-the-clear, Intelligent Signal Processing, NetConnect™, HD Connectivity & Guide Plus ™ On-Screen Program Guide
Many people signed up for tickets at the fundraiser this past winter. We would like to contact you or you may place your order with Penny and she can check you off the list.
**Fellowship
We are finalizing the second year's donation for UNC and Duke. We recently wrote to Dr. Escolar at UNC. Here is her reply on what our fellow, Dr. Holly Martin, is currently working on.
"Holly will write a grant proposal to study the natural history of MLD which was identified at the last MLD foundation meeting (organized by The Myelin Project) as very important in terms of evaluating the effects of new treatments and identifying which processes are more/ less affected. I would try to organize this with the group in Italy. The study would focus on CNS disease using biomarkers and brain MRI's to longitudinally track the disease progression."
The Duke fellow, Dr. Donald Beam, has been around for our visit with Maddie. He was the fellow on duty who took care of her the night she had her massive bleeding. We are very thankful for that. He continues to work with the cells in the lab as well as the children directly affected with leukodystrophies.
If you are still interested in participating as a partner and haven't already sent your donation, here is the contact information.
Trimper Children Foundation c/o Saginaw Community Foundation
100 S Jefferson Suite 201
Saginaw, MI 48607
Tax No. 38-2474297
When we set up the fellowship program, we intended to be much better about keeping everyone informed on the progress being made. We have been terrible with that and it is a real sore spot with me. It is one of those things that keep me awake in the middle of the night. Please know that the lack of information doesn't reflect on the great things going on. It reflects more on the health issues of Maddie.
Tuesday, August 9, 2005 8:20 AM CDT
Dear Friends,
As some of you have already read, the boys made it safely back to Michigan. They had a good trip and it sounds like they enjoy being home. They both have physical therapy scheduled for 11:00 this morning. The routine again will be good for both of them.
Maddie, JoJo and I are enjoying our time too. I know we will miss the boys terribly, but right now it is just so peaceful in the apartment.
Last Friday Maddie started Zofran to help with nausea. It really seems to have done the trick. She has not thrown up since starting it. We also gave her a little more of the pain patch and that seems to have helped too. Yesterday was a much better day for her. She even wanted to leave the apartment and go to Target for Pokemon cards. It felt good to see her out and about and even having fun. Today is clinic day. Hopefully, she continues to feel well. We have learned never to assume such things will last. Dr. Kurtzberg is on vacation (Good for her!!) but we will see Sue.
Maddie also has her scan scheduled for Thursday. They will check to see what is going on with the mass. It has been almost three weeks since the last one. I think that will be the general ongoing schedule - CT Scan every three weeks.
We bought some polish yesterday. I think today will be pedicure day in the apartment.
Love,
Jane
We are finalizing the second year's donation for UNC and Duke. We recently wrote to Dr. Escolar at UNC. Here is her reply on what our fellow, Dr. Holly Martin, is currently working on.
"Holly will write a grant proposal to study the natural history of MLD which was identified at the last MLD foundation meeting (organized by The Myelin Project) as very important in terms of evaluating the effects of new treatments and identifying which processes are more/ less affected. I would try to organize this with the group in Italy. The study would focus on CNS disease using biomarkers and brain MRI's to longitudinally track the disease progression."
The Duke fellow, Dr. Donald Beam, has been around for our visit with Maddie. He was the fellow on duty who took care of her the night she had her massive bleeding. We are very thankful for that. He continues to work with the cells in the lab as well as the children directly affected with leukodystrophies.
If you are still interested in participating as a partner and haven't already sent your donation, here is the contact information.
Trimper Children Foundation c/o Saginaw Community Foundation
100 S Jefferson Suite 201
Saginaw, MI 48607
Tax No. 38-2474297
When we set up the fellowship program, we intended to be much better about keeping everyone informed on the progress being made. We have been terrible with that and it is a real sore spot with me. It is one of those things that keeps me awake in the middle of the night. Please know that the lack of information doesn't reflect on the great things going on. It reflects more on the health issues of Maddie.
Monday, August 8, 2005 9:35 AM CDT
Hello.
We made it home last night (Sunday). It was very hard to leave. I almost turned around about a half hour on the road. The boys were great for the entire 12 1/2 hours. We ask so much of these two and they just take it all in stride. The house looked great. Thank you all for mowing the lawn, keeping Kippy, cleaning the house, keeping the pool clean… It’s all one less thing to worry about when we’re gone. Thank you!
Max is starting therapy this week. It’s going to be a little rough on him. I need to get him back in the swing of things. Muscles and brain working. Mine too. Sam has had a good time “introducing all his new toys to his old ones”. He was on the go at 8 am.
It sounds like Jane, Maddie, and Joanne are having a nice time. Maddie has the day off today. Her weight was up this weekend so she needed to get rid of some fluid. Her belly and her butt still hurts. I really miss her.
Jeff
We are finalizing the second year's donation for UNC and Duke. We recently wrote to Dr. Escolar at UNC. Here is her reply on what our fellow, Dr. Holly Martin, is currently working on.
"Holly will write a grant proposal to study the natural history of MLD which was identified at the last MLD foundation meeting (organized by The Myelin Project) as very important in terms of evaluating the effects of new treatments and identifying which processes are more/ less affected. I would try to organize this with the group in Italy. The study would focus on CNS disease using biomarkers and brain MRI's to longitudinally track the disease progression."
The Duke fellow, Dr. Donald Beam, has been around for our visit with Maddie. He was the fellow on duty who took care of her the night she had her massive bleeding. We are very thankful for that. He continues to work with the cells in the lab as well as the children directly affected with leukodystrophies.
If you are still interested in participating as a partner and haven't already sent your donation, here is the contact information.
Trimper Children Foundation c/o Saginaw Community Foundation
100 S Jefferson Suite 201
Saginaw, MI 48607
Tax No. 38-2474297
When we set up the fellowship program, we intended to be much better about keeping everyone informed on the progress being made. We have been terrible with that and it is a real sore spot with me. It is one of those things that keeps me awake in the middle of the night. Please know that the lack of information doesn't reflect on the great things going on. It reflects more on the health issues of Maddie.
Saturday, August 6, 2005 12:38 AM CDT
Dear Friends,
Right at this moment: Sam is on the floor looking at his Pokemon cards. Max is in the recliner watching Martin Mystery. Maddie is sitting on the couch eating spiral mac and cheese and strawberry applesauce. (I peek at her while she eats to see how much she puts away. I have to be sneaky because if she sees me she'll stop. Right now she is doing a good job!)
The boys are sticking around an extra day. They are planning on leaving tomorrow. Joanne is flying in this evening. It will be good to see a new face.
With all the loss and sadness around here, it is sometimes hard to share good news. Which makes it all the more important to do. We have the results of the boys' MRI's. Sam's brain remains unchanged. Max's is slightly improved. Thank you, God! Thank you, God! What great reminders of what this fight has been about. I can't even type the words without getting teary.
We are finalizing the second year's donation for UNC and Duke. We recently wrote to Dr. Escolar at UNC. Here is her reply on what our fellow, Dr. Holly Martin, is currently working on.
"Holly will write a grant proposal to study the natural history of MLD which was identified at the last MLD foundation meeting (organized by The Myelin Project) as very important in terms of evaluating the effects of new treatments and identifying which processes are more/ less affected. I would try to organize this with the group in Italy. The study would focus on CNS disease using biomarkers and brain MRI's to longitudinally track the disease progression."
The Duke fellow, Dr. Donald Beam, has been around for our visit with Maddie. He was the fellow on duty who took care of her the night she had her massive bleeding. We are very thankful for that. He continues to work with the cells in the lab as well as the children directly affected with leukodystrophies.
If you are still interested in participating as a partner and haven't already sent your donation, here is the contact information.
Trimper Children Foundation c/o Saginaw Community Foundation
100 S Jefferson Suite 201
Saginaw, MI 48607
Tax No. 38-2474297
When we set up the fellowship program, we intended to be much better about keeping everyone informed on the progress being made. We have been terrible with that and it is a real sore spot with me. It is one of those things that keeps me awake in the middle of the night. Please know that the lack of information doesn't reflect on the great things going on. It reflects more on the health issues of Maddie.
Okay. That was a long one. The fellowship information is long overdue. I just want to remind you once again.
1. Sam's MRI was stable.
2. Max's was improved.
And Maddie's food update: In the time it took me to write all this, she ate half her mac and cheese, half her applesauce and a couple pita chips with hummus.
Love,
Jane
Friday, August 5, 2005 8:08 PM CDT
Dear Friends,
I just wanted to update really quick and let you know everything is good with Maddie. She is still bleeding a little on and off but nothing like last time.
We had a very long clinic day today. We arrived at 10:45 and left at 8:15 tonight. She got her Rituximab for the EBV and then she got a bag of blood to really pump her up. This was precautionary. Her hemoglobin was fine.
Love,
Jane
Thursday, August 4, 2005 7:33 PM CDT
10:45 pm update: It was a short visit. Maddie is bleeding some but nothing like last time. We went in just to make sure it didn't accelerate to that. Her vitals were good. Her hemoglobin, platelets, etc. were good. We are switching back to IV Amicar and hopefully it will be a peaceful night. I hope we didn't cause too much worry. The truth is we just never know what will happen.
Hello.
Well, it's getting to the point where nobody can talk about coming home. The boys and I were going to head home this weekend (on hold). Maddie seemed to be doing a little better (stable). But, she had a rough day. She started bleeding again tonight. We waited, emailed Dr. K and things seem to settle down. She began to bleed even more with clots. We didn't want to end up the way the last time this happened so Jane took her in tonight. Not sure if they'll be back tonight or not. We just seemed to be getting the wind back into our sails (emotionally), then… We hope it's nothing or a simple fix and they'll be home tonight. This little girl needs a break. She's beginning to show signs of great, disappointment, frustration, and depression… It's extremely hard to see your child like this day after day. She needs a break.
Jeff
Wednesday, August 3, 2005 7:45 AM CDT
Dear Friends,
Yesterday was a productive day. Tuesday clinic day is a very interesting day. First you get to meet with Dr. Kurtzberg and Sue. They take a good look at Maddie and start making changes. Yesterday they decided to switch a med from IV back to oral. (Amicar for the bleeding) They think it is why she is feeling a little crummy. I don't know if they are right but she already looked better last night. Today will be the true test. Dr. Kurtzberg and Sue are really great. Not only do we respect and admire them both but we also really like them.
The second aspect about clinic day is the meeting and greeting with all the families. Every time we take a 'vacation' here, we meet new families. They stand outside the rooms and visit and share experiences. Everyone is going through something big and real. Yet, you hear laughter and conversation all around. It really is something and says a lot about the Duke program and the staff. It always brings back memories of the Ronald McDonald House in Minneapolis.
Max had his MRI yesterday. He was sedated two years ago for an MRI too. He came home that night and never woke up until morning. Yesterday, he came home awake but loopy. He stayed awake until 9:00. This morning he still looks tired but cute.
Does anyone know how long the developmental stage where a boy is madly in love with his mother lasts? Sam is attached to me - literally. It has been going on for quite a while. If my attention dares to wander to someone else, he can't handle it. The other day I was scolding him for something and he turned to Maddie and Max and said, “Isn't she pretty when she's mean?” Seriously, how long? It's driving me absolutely crazy but I think I will be so bummed when it ends.
Love,
Jane
Tuesday, August 2, 2005 6:38 AM CDT
Dear Friends,
I will update again tonight or tomorrow. Today is clinic day for Maddie. We will see both Sue and Dr. Kurtzberg. Max also has his MRI today. He tried it a week and a half ago without sedation and couldn't be still enough. Today they will sedate him and take the pictures.
Maddie hasn't been feeling very well. She looks puffy to me and just isn't herself. I am hoping they may have some answers today. I spoke with another mom here yesterday. She said when I wrote the word lymphoma in the last journal entry that it surprised her. She asked if Maddie had cancer. It isn't cancer but it is lymphoma. It is Epstein Barr. Like cancer, it is in the same tissue types and is fast growing. It was also treated with radiation and Rituximab - which isn't a true chemotherapy but is listed in that category.
Sam and Max have been very bored in the apartment. We try to get them out for a little while each day. It is really hard to find things to do. One of us needs to stay with Maddie because she doesn't want to do much and can't be outside. It is hard for the other to take Max in his wheelchair and Sam with all his energy and do something. When Max's MRI is done, the boys will most likely head home. They will probably leave on Thursday.
I wish I could tell you I think we will all be home soon. That just isn't happening. Dr. Kurtzberg told us at least another month, but in reality it could be much longer.
Our spirits really haven't picked up much this time. It is really hard to watch Maddie each day and not be able to help her. I know some of you have written that we are so inspirational. We have never chosen to be. We have written what we have felt. When we have sounded hopeful, we were. When we sound happy, we are. And when we sound down, we are that too. I think some of you have created us into something we aren't. We really are just the Trimpers who have had to plug along through a really bad situation. We had God along with us. He's done some really cool things - not us.
Love,
Jane
Sunday, July 31, 2005 7:25 AM CDT
Sunday: ANother long day at clinic. Maddie's labs were all "out-of-wack" again. They're still trying to figure out her TPN (food in a bag). We didn't get home until 8:30 last night night. We'll see what happens today (Monday). Max has his MRI Tuesday. Jeff
Dear Friends,
It has been a fairly peaceful weekend. Maddie had a long clinic day on Friday. She gets the four and a half hour infusion of Rituximab for the Epstein Barr Virus. Her labs were looking funny too. They made some changes to her TPN while we were in the hospital. Sue, our wonderful nurse practitioner, was there and she is busy trying to get everything back on track.
We drew blood yesterday morning and ran it in. Her potassium is low. They adjusted the TPN again last night. It will probably take a couple of days to get figured out. Maddie has looked tired but has felt pretty well overall. I should qualify - pretty well for a girl with a seven centimeter mass of Epstein Barr Lymphoma in her abdomen.
Dad left yesterday morning. He was a big help watching the kids, doing laundry, feeding the kids etc. Sam says he is our Alice. Now he can do all those things for Mom.
I think I forgot to mention that Jeff and Maddie saw Emma and her parents last week while they were doing their 18-month studies. Emma looked beautiful.
It is hard to believe that August starts tomorrow. We have officially been here three months.
Love,
Jane
Friday, July 29, 2005 6:42 AM CDT
Dear Friends,
Maddie had her fourth discharge confetti parade on Wednesday. She was very happy to be leaving the hospital. We have switched some meds around. She has a new at home IV med four times a day that should help with the bleeding.
We went to clinic for a quick visit yesterday since we had just been discharged the previous day. It turned into a long day. Maddie, who always has low potassium, had record highs at 7.3. That is way too high and we spend all day trying to get it back down. They have adjusted her TPN and hopefully we will get to a normal potassium level through the weekend.
Speaking of record highs, it has been terribly hot here lately. Whenever I looked at the thermometer on the car it read 103 or 108 degrees. Yesterday it was back in the 90’s. The boys were able to get out and go swimming for a little while.
That’s really about it. We head back to clinic for out long Rituximab infusion.
Love,
Jane
Wednesday, July 27, 2005 9:25 AM CDT
MADDIE MADE IT OUT!
THANKS 5200 STAFF!!!
Dear Friends,
They have decided against doing the laser procedure. After the doctors had time to explore the idea of it, they decided it was too risky. So, Maddie is being discharged today and we need to keep a close eye on her. She is very glad to be getting out and her parents totally agree. There are med changes and we'll have more to do at home. But we feel good about being at the apartment.
Dr. Kurtzberg stopped by Monday to see Maddie. Jeff spoke with her about all that is going on. She told him that we will be in Durham at least another month.
Love,
Jane
Monday, July 25, 2005 9:50 AM CDT
Dear Friends,
Everything is pretty much the same. Maddie is still on 5200. On Saturday she was having a lot of belly pain and kept saying that she didn’t feel like herself. Emily, our good friend and wonderful nurse, asked me to show her where Maddie’s Fentanyl pain patch was. I told her I had put it on her back myself on Friday morning. She has been wearing the patch for over a month and it gets replaced every three days. She looked on Maddie’s back and said, “It’s not there.” Our best guess is they took it off during her scope. She had been going 30 hours without it. I can imagine the pain must have been great, not to mention the withdrawal. This is the stuff that drives us crazy.
Maddie will be in the hospital for a few more days. She isn’t happy about this. They are in talks right now to do a procedure with a laser that would stop all bleeding in her rectum. The pediatric GI doctor who did her scope is talking with the adult GI doc. This isn’t done in pediatrics much at all but is way more common in adult cancer patients. They are hoping it can be done Tuesday but Wednesday is probably more realistic. They then want to watch her for 24 hours but 72 seems to be more of our experience.
Still feeling UGH. Less so now that Maddie’s pain is better.
The boys are doing their best to keep busy. Jeff took them to a hands on museum yesterday. They both enjoyed it. The hot weather made it difficult to do the outdoor stuff.
That’s about it.
Love,
Jane
Saturday, July 23, 2005 6:45 PM CDT
Dear Friends,
There really isn't any new news. Maddie is having some stomach pain, bleeding a little and wants to go to the apartment. I don't think that will happen in the next couple of days.
I think we have officially had it. It took two years and 9 months and we are all tired. There just doesn't seem to be an end in sight and us being home with three healthy kids. We are tired of figuring out how to take time off of work, how to meet the kids needs, how to keep an apartment and a house. We are tired of constantly needing help, requesting for leave from work and not being together. It is hard to think about other summers and how much fun we used to have. We are in a perpetual 'Ground Hog's Day' mode where each day we talk, think and deal with MLD, EBV, meds and therapy. We know as much as you all care, pray and love us, your lives go on and ours don't. As much as we would like to just throw in the cards we have been dealt and get a new hand, we can't.
UGH!
Luckily these moods don't last long. Don't worry about writing up-lifting messages. This mood will be gone before we read them. The thoughts are selfish. Our friends who have lost kids should tell us to knock it off. We know.
We'll pray. We'll feel better. We'll keep kicking.
Love,
Jane
Friday, July 22, 2005 4:48 PM CDT
Dear Friends,
I will fill you in on all we know. I'll throw in some guesses. I'll even share a few feelings with you.
As Jeff wrote last night, at bedtime Maddie had massive bleeding instead of stool. It just kept going. I brought her into Duke at about 9:30 last night. On the transplant floor, they have something called the Bop Room for emergencies. We went there. She was very pale and her blood pressure was pretty low. They gave her two bags of blood and quite a bit of fluid. Her oxygen did a weird thing for a few minutes. She also had two episodes where she cried out in pain and became incoherent. They were very short and scary. I am guessing that the loss of blood was making her feel faint and the pain put her across the line. The blood and fluid worked very well. Her stats were looking good during the middle of the night.
There were no beds available on 5200 or the step-down units. They took her to PICU even though her stats were good. We were admitted there around 5:00 this morning. There were many doctors and many discussions (It is so hard to be patient). They decided to do a CT Scan and an endoscopy. We just got back form both of those and Maddie is out of PICU. She will be staying on 5200 for now. She is still passing blood but it is darker and a lot less.
The doctor who performed the scope showed us the pictures he took. It really looks a lot like the other scope Maddie had done. The tumor or mass is pushing into the lower area near the rectum. The rest above that area looks good. There was a large clot along one side.
Here are my guesses. I think the CT Scan and the scope show little change. I think if the bleeding gets under control we will be in the same spot but now know bleeding can occur. No one can really predict what the mass will do. I think surgery will be discussed but I will be surprised if it is an option. The mass is in a very tricky position.
Maddie is quite a girl. She goes through these tests with such ease. The sight of all that blood barely phased her. Coming back to the hospital didn't throw her at all. I am so so proud of her.
I am also proud of my Dad. We called him last night and he was down here by 9:15 this morning.
Sam and Max had their MRI's today. Max couldn't lay still enough but Sam did. We will probably have to try Max's with sedation at a later date.
Thank you so much for the guestbook entries. I am so amazed and touched by the prayers. We feel the strength from God. Maddie continues to smile through it all. Please keep praying for her.
As soon as you step on the transplant floor, you find yourself back in the world of medicine. Death seems to be lurking everywhere. One of the patients passed away last night. Please say a prayer for Kameron's family. There are also two little girls about Maddie's age in PICU right now. Please pray for Frannie and Maddy.
Love,
Jane
Thursday, July 21, 2005 11:05 PM CDT
Friday AM; Saw maddie in PICU this morning. She looks good but tired (Jane to). She's still passing a lot of blood. The plan: CT scan this morning and an endoscopy (sp) this afternoon. They're not sure what's going on. She lost HALF of her blood in her body last night. Yikes! We're off to take the boys to thier MRI's right now. Bob (Jane's dad) made it down here this morning to help. Gotta go. Jeff
*Thursday night update: Once again we need all your help (prayers, thoughts...whatever you do). Jane took Maddie in at 9:30 pm. She was passing a large amount of blood several times (wasn't stopping). I have talked to Jane a few times so far. The bleeding has not stopped. They may take her to PICU tonight to monitor her. She has lost a lot of blood. She had a couple of scary moments, maybe low blood. She's on 5200 as of now. Things have changed several times already. She's sleeping. I hope to have a better update soon. Jeff
**12 AM: They are taking Maddie to PICU tonight to keep a close eye on her. Her bleeding continues, more pain and a few more scary moments. They (docs) are meeting and trying to figure out what's going on. I hope to hear good news in the morning (long night).
***Jane is THE MOTHER OF THE YEAR!
Dear Friends,
We're back online. Jeff has been much better about updating the pictures than I have been about writing the updates. There are some cute ones in the photo album now.
Things are about the same here. Maddie has had some blood in her stool this morning. Of course, I just assume it is the mass shrinking and pulling away from the intestine wall. I hope the CT Scan agrees with me. She is feeling good off and on throughout each day. The steroids are starting to show up in her face and her mood. Overall, she is getting stronger each day.
The apartment is quickly shrinking. It wasn’t made for a five member family who has a six year old who needs to move. We are trying to decide what to do next. Max and Jeff may head home soon. We will have to see.
Sam is off getting his Baer and EEG (think wires attached to his head, laying in a dark room). Both boys will have MRI’s tomorrow. The challenge is to get Max to lay still without using a sedative. I think we may try Benadryl though.
It was 101 degrees when I grocery shopped yesterday evening. Ugh! We hope we can enjoy some Michigan summer nights before fall arrives.
Love,
Jane
Thursday, July 21, 2005 9:54 PM CDT
*Thursday night update: Once again we need all your help (prayers, thoughts...whatever you do). Jane took Maddie in at 9:30 pm. She was passing a large amount of blood several times (wasn't stopping). I have talked to Jane a few times so far. The bleeding has not stopped. They may take her to PICU tonight to monitor her. She has lost a lot of blood. She had a couple of scary moments, maybe low blood. She's on 5200 as of now. Things have changed several times already. She's sleeping. I hope to have a better update soon. Jeff
Dear Friends,
We're back online. Jeff has been much better about updating the pictures than I have been about writing the updates. There are some cute ones in the photo album now.
Things are about the same here. Maddie has had some blood in her stool this morning. Of course, I just assume it is the mass shrinking and pulling away from the intestine wall. I hope the CT Scan agrees with me. She is feeling good off and on throughout each day. The steroids are starting to show up in her face and her mood. Overall, she is getting stronger each day.
The apartment is quickly shrinking. It wasn’t made for a five member family who has a six year old who needs to move. We are trying to decide what to do next. Max and Jeff may head home soon. We will have to see.
Sam is off getting his Baer and EEG (think wires attached to his head, laying in a dark room). Both boys will have MRI’s tomorrow. The challenge is to get Max to lay still without using a sedative. I think we may try Benadryl though.
It was 101 degrees when I grocery shopped yesterday evening. Ugh! We hope we can enjoy some Michigan summer nights before fall arrives.
Love,
Jane
Thursday, July 21, 2005 8:21 AM CDT
Dear Friends,
We're back online. Jeff has been much better about updating the pictures than I have been about writing the updates. There are some cute ones in the photo album now.
Things are about the same here. Maddie has had some blood in her stool this morning. Of course, I just assume it is the mass shrinking and pulling away from the intestine wall. I hope the CT Scan agrees with me. She is feeling good off and on throughout each day. The steroids are starting to show up in her face and her mood. Overall, she is getting stronger each day.
The apartment is quickly shrinking. It wasn’t made for a five member family who has a six year old who needs to move. We are trying to decide what to do next. Max and Jeff may head home soon. We will have to see.
Sam is off getting his Baer and EEG (think wires attached to his head, laying in a dark room). Both boys will have MRI’s tomorrow. The challenge is to get Max to lay still without using a sedative. I think we may try Benadryl though.
It was 101 degrees when I grocery shopped yesterday evening. Ugh! We hope we can enjoy some Michigan summer nights before fall arrives.
Love,
Jane
Tuesday, July 19, 2005 5:56 PM CDT
Dear Friends,
As you can see from the pictures, miracles are occurring in Durham. Maddie wanted to go shopping yesterday and spend HER money. This is an unprecedented event. She said she wanted to buy clothes and toys. We are located about one half mile from a strip mall that has an Old Navy. She had never been in one and we stopped there to buy the clothes. She picked out some really cute stuff. She picked out some stuff for school. We split the bill. We then went to a Kmart nearby and bought the toys. Both places had (thankfully) very few customers. It was a lot of fun.
Maddie had clinic today. Sue and Dr. Kurtzberg came to see her. They think her belly keeps feeling better and she looks much better with a little weight on her. She is 46 pounds. The next CT Scan will be next Tuesday and we’ll see what the mass is doing. Dr. Kurtzberg thinks Maddie will be on TPN (IV nutrition) for the next two months. As always, it was good to see them and have them check her out.
The boys both had nerve conduction tests today. The doctors doing the tests remarked that both boys had improved since their last test. That is always good to hear but we are interested to see how the report reads.
Sam has been busy playing with toys and playing with toys and playing with toys. Max does some PT with Jeff each day and just enjoys family time.
We hope you are all having a good week.
Love,
Jane
* Our wonderful iBook (laptop) is on the fritz. It's been with us since the beginning. It may be a few days before we get it back. It may keep working until we send it in, we'll see.
Sunday, July 17, 2005 5:14 PM CDT
Dear Friends,
No news is good news. Things have remained quiet and calm here. All three kids are getting restless. Maddie is not eating much yet. Jeff is wishing he had a yard to work in. I am about a fourth of the way through the new Harry Potter.
The hardest days to miss being home are not the ones you would first guess. The holidays are hard, birthdays are difficult, but those one of a kind days are the ones we miss most. They are the days that can't be replaced: weddings, funerals, births, etc. We have missed many of these important days in the past three years.
Yesterday was a big day for some of our most favorite people and we missed it. We hope it was a beautiful wedding. Congratulations, Erin and Scott.
Love,
Jane
Monday AM: Maddie goes on a shopping trip! She actually parted with some of her money. She had a great time.
Friday, July 15, 2005 4:00 PM CDT
Dear Friends,
Someone today will be our 900,000th hit on our website. As impressed as I am that many of you keep checking on us, I was really hoping that you wouldn’t have to at this point. Transplant is an interesting journey. I truly hope and pray we don’t make it to a million.
Grandma Strawberry flew home yesterday. Sam must have asked us 10 times if we thought she was home yet. Starting 15 minutes after she left and ending right before bed. Thanks, Mom for all your help. You are always there for us without hesitation.
Maddie is rolling along. She went to clinic today to get the long Epstein Barr IV med, Rituximab. She slept after a dose of her premed, Benadryl.
Sam had an Echo and Pulminary Function test as part of his two year studies. He did very well. He tells everyone he meets he is six now. He looks so different than he did during transplant.
Max had the wires had taken off his head. We will find out results later. He didn’t have any ‘shakes’ while hooked up. He was a good sport about having all of that on his head.
We have hit the point where we really want to go home. It must be that we can take two and a half months but after that it starts to get to us. Maddie has a CT Scan in a week and a half. Hopefully the mass will continue to show improvement and an end will be in sight. Maddie made the comment the other day that her last two summers have been really crappy. She’s right. It must mean there are some really awesome ones in her future.
Love,
Jane
Wednesday, July 13, 2005 10:23 AM CDT
Dear Friends,
I was going to update later but Jeff put on such good pictures that it motivated me to get going sooner.
Max went to the hospital yesterday morning and was hooked up for his EEG. He is attached to a small backpack. His head is wrapped up. His ears stick out the side. He looks like an elf or a white Smurf. Either way, he is adorable. That boy just can’t look bad. Since he is a 10 year old, there won’t be pictures posted. In his words, “That is embarrassing.” With all of Max’s physical difficulties, he is a 10 year old boy in there. He doesn’t mind being hooked up and sat very well while they did it. As always, we are incredibly proud of him.
Maddie had her long clinic day yesterday. She received IVIG and Vitamin K. Dr. Kurtzberg and Sue saw her. She is starting a blood pressure med. She hangs our about 115 over 88. When she gets her infusion, it tends to go up. Other than that, there weren’t any major changes.
Nothing new with Sam. He is having a good time. He can’t go swimming for a week due to the port removal. He is eating goulash like crazy. He had four helpings for lunch yesterday.
It’s hot, hot, hot.
Love,
Jane
Monday, July 11, 2005 5:34 PM CDT
Dear Friends,
Well, Sam made a port removal look really easy. It only took about 10 minutes once he was asleep. He hasn’t hurt at all today and it certainly hasn’t slowed him down any. I think Maddie was glad to see how easy it was. Her day will come some day.
Maddie woke up with a 101.4 fever. If it is 101.3 or higher, you have to go to clinic and have blood drawn to test for culprits. We weren’t there too long. I had given her some Tylenol before we left and that worked well. I blame the fever on her body trying to get rid of the mass. I don’t know if any doctor agrees with me. We’ll see in the next couple of days if they can come up with a better answer.
It was hot and muggy today. We went for a drive around Chapel Hill in the late afternoon. It was good family time – no TV and lots of conversation. It’s funny that we need to get in the car to do that.
Things are calm this evening. Grandma made us a strawberry pie. Max particularly liked it.
Yum!
Tomorrow Max is going to the hospital to be hooked up for a 24 hour EEG. They will hook him up tomorrow (lots of wired on the head) and he will leave with a backpack until morning. We are actually hoping he gets ‘the shakes’ while hooked up. Maybe we will get some answers. Dr. Kurtzberg and Sue are so quick to help get answers. We just mentioned having this done a week and a half ago. It would have taken months to set up in Michigan.
Hope the Chesaning Showboat is a big hit tonight. I am sure Captain Bob will be at his best.
Love,
Jane
PS There are pictures of Sam's haircut. I am actually getting quite fond of it. His eyes are huge!
Sunday, July 10, 2005 4:17 PM CDT
Dear Friends,
It has been a fun and relaxing weekend. Yesterday we all took turns going out and finding things to do. Max and Jeff went to Target. Sam, Mom and I went to the mall. Maddie was the only one who stayed home and she was thrilled. She is not liking the hot weather.
We played a family game of Disney Trivial Pursuit last night. Max and I go our fannies kicked. Jeff commented on how our Saturday nights just aren’t what they used to be.
Today we went to the mall right when it opened and went to Build a Bear. Sam and Maddie made Bulldogs. I just asked Max what kind of dog he made and he said, “a mutt.” I think it is actually a terrier. They had a good time and were the only kids in the store.
When we got back, Jeff and Maddie headed to clinic for an IV dose of potassium. Mom and I took the boys to get their hair cut. Sam got a major haircut. He has never had it that short and it wasn’t intentional. Jeff hasn’t seen it yet. I can’t imagine his reaction. Max got more of a trim. Needless to say, Sam went first. I wised up before Max got in the chair. I will say, it brings out Sam’s eyes and missing teeth.
We’re making dinner. Sam went to the pool to take his last swim before his port removal tomorrow. He will probably be banned from the pool for a few days after. Maddie and Jeff should be home shortly.
We hope you all had a good weekend.
Love,
Jane
Friday, July 8, 2005 7:51 PM CDT
Dear Friends,
We have had a busy week. Max and Sam went and gave blood on Thursday. Max and Sam are doing their two-year post transplant studies. Max’s are really late. He was two years post in January. We will try to do their yearly studies together. Dr Kurtzberg has been so great about following Max’s progress even though he was transplanted in Minnesota. Maddie was very happy that they had to go to clinic and get poked and she did not.
Maddie has been feeling well on and off. She still has stomach pains throughout the day and her bottom is very sore. She had her long clinic day today getting the Rituximab for her EBV. She also got some potassium and some vitamin K. It makes for a long day because her Rituximab takes four and a half hour to infuse.
The rest of the time has been spent going to the movies (Max and Sam), grocery shopping, doing meds, playing games with Aunt JoJo, Grandma and Grandpa, etc.
Joanne and Dad left tonight. They should be back in Michigan late tomorrow. Mom has stayed to help while Sam gets his port out next week.
That’s about it. We are looking forward to a long clinic-free weekend. We may head to Build-a Bear tomorrow.
Love,
Jane
Wednesday, July 6, 2005 6:47 PM CDT
Dear Friends,
I will give you the longer version tonight. It is really saying the same things as yesterday’s entry.
Maddie had a long Tuesday clinic visit. We did the CT Scan, received her IVIG and her vitamin K and met with Sue and Dr. Kurtzberg.
The CT Scan showed that the mass was ‘more neurcrotic’ in the center. I said it was ‘deader’. Although grammatically incorrect, I like the way it sounds. Sue and Dr. Kurtzberg said you could see air spots on the CT Scan in the center of the mass. It also showed the areas around the mass looking better. Her chest also looked good. Maddie’s blood counts were looking improved also. Her white blood cell count and platelet count were taking some time to recover and it looks like they are on their way.
The boys, Jeff and Aunt JoJo showed up at clinic around 2:00. It was so good to see them. Max laughed and laughed. Sam could not look cuter. What is more adorable than a child missing two front teeth? Grandma and Grandpa showed up a little while later. It was chaotic, crazy and wonderful.
I love my kids. This feels pretty good. It isn’t home but it’s family.
Love,
Jane
Tuesday, July 5, 2005 8:52 PM CDT
Dear Friends,
I am going to make this really quick. Everyone made it safely. We were all happy to see each other.
Maddie had her scan today. It was the same size but was more neucrotic in the center. In other words, it was 'deader'. That is somewhat good news and means we will hold the course.
We'll write more tomorrow. Jeff put some cute pictures up. There's a good one of Maddie in a new red, white, and blue outfit.
Love,
Jane
Sunday, July 3, 2005 6:36 PM CDT
Dear Friends,
Things have remained the same in Durham. Maddie feels good for part of the day and then her stomach starts hurting. The mass continues to create problems. It is difficult for her to verbalize exactly where or how it hurts. She just starts to feel a little crummy. We try to leave the apartment for at least a little while each day. She never really wants to do anything but I make her. She does okay once we are out.
The boys are packed and will start driving down tomorrow. They will be here on Tuesday. My mom and dad and Joanne will be coming along too. I think it will be really good for Maddie to see everyone.
We hope you all have a good Fourth of July.
Love,
Jane
Friday, July 1, 2005 7:44 AM CDT
Dear Friends,
Well, my optimism was appropriate. Maddie has continued to feel well for the rest of the week. We haven’t don too much outside of the apartment. We try to get out for at least a short drive each day. Inside, we have been doing crafts, puzzles, playing dominos (She is getting too good N and E) , playing cards, etc. Today we are off to clinic. She will be getting the Epstein Barr IV med and some vitamin K. It will take a while and then we need to hit the grocery store.
The boys are busy getting ready to come back to NC. We have been talking about having them stay for a longer visit. It is just too hard for everyone being all split up. We will see how it goes.
The heat has really been tough on Max. Oddly enough, air conditioning is also tough on him. His body just doesn’t regulate temperature like ours. Sam has been having a good time but really needs more attention than just one adult can give. I think it is time for family time.
We hope you are all having a good week.
Love,
Jane
Wednesday, June 29, 2005 11:50 AM CDT
Dear Friends,
Maddie and I went to clinic yesterday. We had a slower start. Maddie had been feeling yucky in the mornings and has had a sore bottom. We met with Sue and Dr. Kurtzberg. They gave us some cream that has worked magic. Dr. Kurtzberg also changed one of her meds around, and I hate to be too optimistic, but Maddie felt much better this morning. Hopefully each day will start this well. Maddie also received her IVIG and some vitamin K through her line while we were at clinic. We left fairly early (2:00) and came home and napped.
So far today, we have made two felt posters, painted three felt posters, and watched some cartoons. Maddie’s new physical therapist comes at 2:00 to evaluate Maddie. Then we are going to leave and do something. We aren’t sure exactly what.
The boys have been trying to stay cool. They were heading to Mt. Pleasant to help my Grandma this morning. They have also been doing their therapies. I think they will head down here mid next week and stay for about a week and a half. Sam is going to get his port out while he is here.
That is really about it. It’s a boring update. Thank you, God. Maddie’s CT Scan is next Monday. I pray the mass has started to get smaller.
Love,
Jane
Monday, June 27, 2005 3:26 PM CDT
Dear Friends,
It has been an interesting couple of days. Yesterday Maddie woke up with a 101.8 fever. We took her to clinic. They took blood to check for infections. They think she had a fever because she just stopped her antibiotic on Friday. They started her back up again and sent us home. She perked up after a couple of doses of Tylenol. I personally like to believe the fever was caused by her body trying to absorb her mass.
This morning, Jeff and I had to go to clinic and give a whole lot of blood. They took a bag from each of us plus 18 vials. They are sending the bag of blood off to New York. If either Jeff or I match up to Maddie (I’m not sure exactly what they are looking for), they will take the lymphosites out and find specific t-cells that fight Epstein Barr. Then if needed later, Maddie would get these. It is a two month process and they are thinking ahead.
Jeff took a cab from clinic to the airport after he gave his blood. He barely made the plane but should be home by 5:30.
Maddie is napping right now. It is very hot outside but not as hot as Michigan. We are staying inside, doing crafts, and then we’ll make some dinner.
The boys have been busy at home. Grandpa and Grandma Up North are there watching them until Jeff gets home. Sam lost his other front tooth. The tooth fairy may go broke. I can’t wait to see a picture of him. Max is busy doing therapies.
We will have our big clinic day tomorrow. We will get to see Sue and Dr. Kurtzberg. Then we probably won’t have to go back until Friday.
Hope you are all having a good Monday.
Love,
Jane
Saturday, June 25, 2005 6:17 PM CDT
Dear Friends,
We had a good day in Durham. Maddie, Jeff and I just hung out around the apartment. Jeff and I took turns running errands. It feels so good to be out of the hospital. It does keep us busy though. Maddie has one IV med that we give on a pump two times a day. We also hook her up to TPN and Lipids for 12 hours overnight. Maddie is up to 42 pounds and we hope she gains a lot more. The TPN and Lipids will help with this. She ate a little bit for dinner tonight. Maddie is also taking tons of pills. One med alone is 12 pills a day for her. She takes the bowl full of meds and takes them all on her own. She is really a mature little girl.
When you look at the pictures, you will see a cameraman filming Maddie’s departure from 5200. They were at Duke filming a documentary on cord blood. They interviewed many families and Duke personnel. They came to Maddie’s room and talked with us. We were glad to help in any way possible. For something that often gets thrown away, it was life saving for our kids.
You will also see Maddie walking through the confetti and bubble line. She is weak, but we figure if you are lucky enough to be able to walk when leaving that floor, then you do it.
On the home front, you saw the picture of Sam’s missing tooth. He put it under his pillow for the tooth fairy. She came and left him some money but she forgot to take the tooth. Sammy being Sammy decided he was going to sleep in a different bed the next night, leave the tooth, and cash in. It worked she left money again the second night but she took the tooth. Do you think my children may have a problem with greed??
Max is having the shakes on and off. Aunt JoJo is taking care of him right now. He sure sounds good over the phone. I look forward to getting both boys back down here.
I also wanted to thank Sally from Sheridan for contacting Anne Lamott. The email you posted in the guestbook was so special. Thank you.
I want to repeat what Jeff wrote about yesterday. The 5200 staff is so special and are not just our caretakers at the hospital but our friends. It isn’t just the doctors and nurses. It is everyone who enters the room - from the cleaning staff to the people who deliver the meals. Maddie is so happy and comfortable there. It isn’t always easy to get her to leave. Thank you.
We hope you are all having a good weekend.
Love,
Jane
Friday, June 24, 2005 6:03 PM CDT
Hello.
Well, we had another wonderful send off from 5200. Maddie walked down the parade path! Short walk, then it was off to the apartment. We had a busy day once we got back here. Jane went grocery shopping. Jane had more med and pump training. I went shopping again. Now we just finished dinner and Maddie is enjoying her night. We played many games and Maddie has a puzzle started. She seems real happy.
I'm glad I came down to help. It's a lot of work moving out and moving in. It has been a very emotional draining day. So, we're just going to hang out tonight. Maddie has started all her meds. Lots of meds.
The boys are having a good time back home. It sounded like they have NC temps up there today. Stay COOL boys!
Once again (hopefully the last) we'd like to thank everyone on 5200. They are a special group of people. We don't know how they do what they do day after day. Thank you all!
Have a good weekend!
Jeff
Thursday, June 23, 2005 5:42 PM CDT
Dear Friends,
i will make this pretty quick. Maddie is waiting in the room for me.
The plan has stayed the same. Maddie wil be discharged to the apartment tomorrow. Jeff is flying in late tonight and will help move out.
A whole slew of people are watching the boys. Thanks everyone.
Next update will be from the apartment. Yeah!
Love,
Jane
Tuesday, June 21, 2005 9:49 PM CDT
Hello.
I talked to Jane a couple (ok, more than a couple) of times today. It sounds like they had a good day. They went out for lunch again and did some shopping. Jane said Maddie is really getting into the clothes shopping. I would say something, but if shopping is going to get Maddie out and moving, I’m all for it. It sounded like they had a great time together.
The last “plan” is to wait a couple of weeks to see how she does. We hope the mass will get smaller; she starts to eat more, she keeps feeling better… All this will tell us that the mass is getting smaller and that the radiation and her body are doing their jobs. So, things are kind of on hold. They hope to be discharged on Thursday or Friday. She will go to the apartment on TPN, maybe a couple of IV meds and trying to do all the other meds orally. She will have to go back to clinic several times a week. It also sounds like Maddie is slowly getting stronger. She is walking longer distances. She’s a fighter and wants to get home . This is the result from Monday’s CT scan according to Jane in the journal yesterday:
“Maddie had her CT Scan this morning. At first glance without a written report, it looks to be about the same size. This is disappointing but not surprising. Her belly gets all bloated with gas and she still isn't eating much. It is still apparent there is something in there pushing. Dr. Kurtzberg will talk with the people in radiation. My guess is they will hold off and watch for a while.”
The boys and I had a couple of busy days. Trying to catch up on being gone a week and getting ready to head out on Thursday is a little crazy. I will fly down Thursday night to help move out. The boys will be here and they’re in good hands. They both started back with therapy today. Max had a little vacation and it was a little rough on him today. We went to Mt. Pleasant to see their Great Grandma in the hospital. We hope she feels better soon and gets to head home.
They had a busy day and were ready for bed, and I am ready to watch the Pistons kick some butt.
Fellow Information: Since things have been a little crazy around here this spring, we have not been able to send out a letter on the fellowships. We will be sending out a letter on all the progress soon. Some of you have emailed about the next installment. The fellowship’s second year starts July 1. Many of you have already sent your contributions in. Thank you!! It would be great if you can send them in as soon as possible.
Saginaw Community Foundation
Trimper Children Fund
100 S. Jefferson Suite 201
Saginaw, MI 48607
Dr. Kurtzberg has already got things moving for the second year. She said we’re good for the money. We’re looking forward to another year coming closer to finding something we can do about this #@*# disease (excuse me French). We’ll keep fighting as long as they let us or until we find the answer. Gotta Believe!
Jeff
Monday, June 20, 2005 4:49 PM CDT
Dear Friends,
Maddie had her CT Scan this morning. At first glance without a written report, it looks to be about the same size. The is disappointing but not surprising. Her belly gets all bloated with gas and she still isn't eating much. It is still apparent there is something in there pushing. Dr. Kurtzberg will talk with the people in radiation. My guess is they will hold off and watch for a whil and Maddie will still be discharged later this week. My guesses are often wrong though.
As far as the mass is concerned, I am really not overly stressed. I think it will be taken care of. God is working on his schedule - not ours. Who are we to argue? We must be needed in Durham.
The boys made it to Sally and Bill's house last night and decided to stay and play with the cousins. I am so glad they did. The kids had a good time and Jeff had a partner for the Piston's game. They left early this morning and were home for the day.
Speaking of Pistons, I've actually watched quite a bit of the games and am constantly reminded of how nice they were to Jeff and Max - especially Larry Brown. And Rasheed. Go Pistons! However, is anyone else having a hard time staying up for the whole game? This hospital stuff is tiring.
Hope you are all having a nice week. FYI - It is in the 70's. This northern girl is much happier.
Love,
Jane
Sunday, June 19, 2005 2:18 PM CDT
Dear Friends,
Happy Father's Day! Especially to you Jeff, Don and Bob.
The boys left this morning with Jeff and Sally. They are planning on driving straight through. They are actually making very good time and called a little while ago in Akron. I think Maddie and I felt the same way about their leaving. We knew were going to miss them terribly but were looking forward to the calm.
I think I may have misled some of you with an earlier entry. I am hoping Maddie may be discharged by the end of the week. (That will mostly depend on the CT Scan tomorrow). That means we are going to be living in the apartment not coming home. I suspect we will be in Durham through July or at least for a good part of July. It would not surprise me to still be here well into August either.
Although Maddie is really doing well considering all things, her insides are a wreck from this mass. We are hoping the mass is a little smaller. But until the mass is a lot smaller or completely gone, Maddie will feel the effects of her intestines, bowel, bladder, etc being pushed upon.
We had a long pass this afternoon of four hours. We hung out at the apartment. She wanted to go to a restaurant. We went to one of our favorites that has an outdoor area. She ordered Coke, lemonade, chicken tenders, fries, and a grilled cheese sandwich. Now she actually drank most of her Coke, ate two bites of sandwich and about 10 french fries. We are now back at the apartment. Maddie said she wanted to take a nap but continues to talk to me. I love it.
Love,
Jane
Friday, June 17, 2005 7:42 PM CDT
Dear Friends,
Maddie had another good day. She was very active and more talkative than she has been. She tried eating just a little bit. She enjoyed having the boys visit at the hospital. She didn’t leave on pass today but did go out in the hallway and rode a pedaled go-cart.
The boys played at the apartment, went to Target and visited Maddie. Jeff and Sally took them to Raleigh to check out a place that made adaptive equipment for a van. Max drove a motorized wheelchair when he was there. He is a crazy driver and enjoyed himself immensely. When he was leaving, he said he wanted to ride it again. One more day to enjoy the boys and then they head back home for a while.
The weather has improved greatly and was only in the 80’s today. It felt much better.
It was mentioned in the guestbook that our friend Carolyn is in need of our prayers. She is so supportive to so many families. Thanks for including her in your prayers.
Love,
Jane
Thursday, June 16, 2005 9:13 AM CDT
Dear Friends,
There isn’t anything new to report. Maddie had her last dose of this round of radiation yesterday. The CT Scan is scheduled for Monday. She gets very tired after radiation.
The boys are trying to keep busy at the apartment. They went to the hospital yesterday and played some cards. Uncle Mark left yesterday. Aunt Sally is coming this afternoon to spend a couple of days and help Jeff drive the boys home.
Dr. Kurtzberg is the attending physician on the BMT floor this week and next. Sue, our nurse practitioner is with her. It is good to see them every day. We are talking about Maddie being discharged by the end of next week. There are so many factors though. We shall see.
Right this moment, Jeff is at the hospital with Maddie. She is snoozing. Sam is playing with a Pokemon and watching Miss Spider. Max is sitting in the La-z-boy complaining about Miss Spider being on. I’m typing up the entry. Sounds pretty good, overall.
Love,
Jane
Tuesday, June 14, 2005 3:08 PM CDT
Dear Friends,
As you can see from the pictures, we had a good time with Sam on his birthday. Maddie did get an afternoon pass. It was good for her. She actually looked at Sam's yearbook from school, played with some toys and ate a little cake.
Maddie had PT before leaving the hospital. Lisa, the therapist, hid play food all around the gym and she had to walk with a grocery cart and collect it all. She did so well.
Sam woke me up this morning with an, "Ahem...." That was my subtle hint to wish him happy birthday. He is very excited about being six. He opened his presents with relish and seemed to especially like the Batman belt with cool superhero tools. He keeps calling all the other superheroes on his bat phone. I watch him in amazement. How could six years have gone by so fast? I also take the time to thank God that MLD won't be touching that boy. If Sam took Max's lead, the symptoms would be getting ready to present themselves.
Max is tired today. I went to bed at 11:00 last night and he was still awake. Sam woke him up too at 7:30. He ate a big piece of cake this afternoon and is watching cartoons. I think he has really enjoyed seeing Maddie. They are very close.
It is very very very very hot here. It makes you appreciate air conditioning.
Love,
Jane
Monday, June 13, 2005 9:54 AM CDT
Dear Friends,
We had a good weekend. Maddie and I went out on pass both days. Nothing too spectacular. Milkshakes both days. She reopened the art shop yesterday. We colored a lot and played cards.
It has been a busy morning. Maddie is back from her next dose of radiation. It is amazing how quickly it goes. It only takes a seconds.
Jeff called. The boys were just getting into North Carolina. They should be here around noon. Maddie is really looking forward to seeing them. Me, too.
Sam's sixth birthday is tomorrow. He has grown up so much in the past year. I am so glad we can all celebrate together. Maddie should be able to get a pass tomorrow and we can do cake and gifts. Then she will come back to her room here.
We hope you are all having a good week.
Love,
Jane
Saturday, June 11, 2005 2:05 PM CDT
Dear Friends,
There is very little to report. That is good news. Maddie continues to be active and fun. She was able to go out on a two-hour pass both yesterday and today. We are actually at the apartment right now - just relaxing and eating some milkshake.
In the eating department, Maddie eats very little. Nothing tastes good. I also think the mass is creating such havoc down below that food probably isn’t a great idea. She is on 24 hour TPN and it is keeping her healthy. She looks better than she has ina very long time.
Aunt JoJo left bright and early this morning. Thanks for coming. She always provides new energy.
The boys with Uncle Mark and Jeff will be driving down tomorrow. We are expecting them Monday morning. Yay!
We hope you are all having a good weekend. Hey, Jeff. Time to change those pictures.
Love,
Jane
Thursday, June 9, 2005 3:47 PM CDT
Dear Friends,
Maddie had radiation today instead of yesterday. She went yesterday and they did the CT Scan there and wrote some marks on her. She went back today and they gave her the dose of radiation. She will have two more – next Monday and Wednesday. Then they will wait and do another scan to see what has happened.
The art shop went well. She sold a lot of pictures and looked adorable. She had a can for her money and a yellow gown and gloves on. The doctors and nurses shopped and dropped a quarter. She made some more pictures this morning and reopened shop this afternoon. Her physical therapist came and did therapy while she sold pictures. She had to bend and hang them all up and then get up and walk to each picture when someone bought one. It worked out well. Thanks for your offers to buy some pictures in the guestbook but we aren’t quite ready to go mail order.
Maddie made me a beautiful picture of our family with hearts all over it. She handed it to me. I said, “Maddie, this is beautiful. And I don’t even have to pay for it.” “I never said that,” said Maddie. See what I mean?
School is done in Stanton. The boys are off for the summer. It will be good to see them next week.
Love,
Jane
Wednesday, June 8, 2005 9:20 AM CDT
Dear Friends,
They have decided to give Maddie three more low (150) radiation doses. They will be every other day and will start either today or tomorrow depending on the schedule at radiation. Hopefully this will help to shrink the mass.
Maddie had a good day yesterday. She talked a lot, laughed a lot, and played a lot. She was up to playing Bingo and Guess Who. She also colored and did some work sheets. She looks really good. She has also gained a kg while in the hospital.
The boys sound good. I miss them and look forward to seeing them next week.
Maddie has decided to open up and art shop. She has started drawing and coloring pictures. Her plan (influenced by Aunt JoJo) is to hang them in the hall and sell them for 25 cents each. I asked if she wanted to give the money to the unit to help buy toys. I wish you could have seen her look. You have to know Maddie. She has an enormous bank filled with money and will not spend one cent of it. She reminds me of Mr. Crab. Those of you who are not Spongebob fans won't know who I am talking about. Maybe Ebenezer Scrooge? Scrooge McDuck? Donald Trump?
Hope you all have a good day. I have artwork to hang.
Love,
Jane
Monday, June 6, 2005 6:24 PM CDT
Dear Friends,
After 36 days, I think we are officially back to square one. Maddie's mass is the same size and her stomach hurts. She is coloring, etc. Her lungs sound good. Except for a lot of weakness, she is the girl we admitted on May 4th.
The bad news: The doctors from radiation will meet tomorrow and decide where to proceed from here. If I had to guess, I would guess they will do two more treatments at the low dose of radiation, but who knows.
The good news: The mass didn't grow. All of her other problems have cleared. During PT, she stood for 7 minute segments. This is much better than a week ago.
As thankkful as I am that she is active, I can't help but think, "Ugh!" I am probably driving the doctors nuts. I think if I ask them one more time, "Are you SURE it is EBV?", they will kick me out of the hospital.
Max had a field trip to the zoo today. I haven't talked with him yet. Sam had school today. Jeff got home late last night.
Tomorrow I will update you on the plan and also give some information about the partnership (fellows). I had planned to do another newsletter this spring but didn't get to do it. I want to talk with Dr. Beam, the Duke fellow, and fill you in on the progress that they are making because of all of you.
Love,
Jane
Sunday, June 5, 2005 4:27 PM CDT
Dear Friends,
We had a nice weekend with Jeff here. Maddie felt well most of the time with little belly pains here and there. Jeff flew out this afternoon. He will come back when school is finished and he will bring the boys.
Joanne flew in this afternoon. She stayed with Maddie while I took Jeff to the airport. When I got back, Maddie took a bath and did some sticker activities.
The boys were with my mom and dad today. They sound good and I can't wait to see them. I am glad they only have four days of school left.
I don't know how we would manage without all the family support.
CT Scan tomorrow.
Love,
Jane
Check out the new pictures. She is really looking good!
Friday, June 3, 2005 9:20 PM CDT
Dear Friends,
Here is the longer update as promised.
Maddie had a quiet day. She was hurting a little but still colored and watched TV. She had physical therapy again and did a good job. It is hard for her. She stood up several times and walked around a little. Anyone who has been in a bed for a month can understand how hard it is for her. She didn’t complain at all during the therapy time. Go Maddie!!
Last night they put a Phentanol patch on her to replace her continuous infusion of the same drug. It takes a while to adjust, but she should be used to it by tomorrow.
Everything else remains the same. She is still on the antibiotics, anti fungals, and regular meds. The CT Scan will be on Monday right at the radiation department. They will do the scan, discuss, and create a plan.
Max, Sam and JoJo called tonight. The boys sounded good and happy. They really handle all the changes well. Oddly, it has been such a part of our lives for the past few years, they are used to it. School ends this week and hopefully we can all be together soon for a visit.
Jeff arrived at 4:30 this afternoon. Maddie remained quiet but was glad to see him. He spent the night at the hospital and I have the apartment to myself. I don’t know what to do with myself. I did some laundry, packed up some clean clothes, watched the final Lost episode (Joanne taped it and sent it. Thanks Joanne.).
Happy birthday, Marcia! Jeff wrote an earlier birthday wish, but today is the actual day! Hope it was a good one.
Love,
Jane
Friday, June 3, 2005 10:58 AM CDT
Dear Friends,
Sorry for the late update. Not a whole lot has changed. Maddie was very fussy for three days. We decided to increase her pain medication and it has made a big difference. She is feeling better and more active. I think Maddie's pain threshhold is so different than the average person's. She has just had to deal with so much pain in the past two years. She has a hard time verbalizing it.
Maddie did physical therapy yesterday. She did a good job. Standing is very hard for her right now. She is very weak from the past month. But she did stand about 15 times during therapy.
Jeff is on his way to Durham to visit with her for the weekend. This may be the greatest medicine ever for Maddie.
The boys are with Joanne and my parents this weekend. Joanne is flying here on Sunday and Jeff will fly home. I miss those two boys.
It will be easier to update when Jeff arrives. I'll try to do a longer version.
Love,
Jane
Wednesday, June 1, 2005 8:40 PM CDT
Hello. Not much to report today. I think they're just keeping on the same course of action. CT scan is Monday, unless something changes. Maddie sounds like she is still feeling bad. They're not sure what it is. I did talk to Maddie today. She sounded pretty good. I think they're both sick of the hospital.
The boys and I are plugging away. We're busy between school, therapy, home life...They both have been real tired this week. We're looking forward for summer and we can all try to be together. This is all getting very hard on all of us.
Sam had his music program today. I didn't know about it until yesterday. I'm on top of things. He was good and it was fun to watch him. I think it tired him out. He was sleeping by 8 pm tonight. He plays hard and sleeps hard. Max had a busy day with therapy and school.
All so exciting ey!?
Happy Birthday Grandma Up North (Mom)!
Have a good weekend.
Jeff
Tuesday, May 31, 2005 7:13 PM CDT
Dear Friends,
Maddie was still fussy today. She has been pretty calm the last couple of hours. She is watching Monster Inc right now.
The doctor from Radiation came by today. They compared the scans and thought they looked the same size. They want to give the radiation more time to work and will wait until next Monday to do a new CT Scan and reevaluate. This is all on the condition that Maddie stays in the condition she is in right now.
Short update tonight. I'm missing the movie and need to hustle.
Love,
Jane
Monday, May 30, 2005 5:46 PM CDT
Dear Friends,
I have to make this really quick. Maddie is having a tough day. Lots of tears. They gave her Atavan last night and I think it is not agreeing with her.
Her CT Scan brought good and bad news. Her lungs were much better. The mass was bigger than the scan three weeks ago. I am not sure what they will plan from here. Radiation doctors are involved. I'll let you know when they tell us the plan. They do want to compare today's CT with the one they did last week.
Disappointing news. No time to falter. New plans will arise tomorrow.
Love,
Jane
Saturday, May 28, 2005 6:51 PM CDT
Dear Friends,
Today was quiet and calm. The boys left at 9:00 am and will be home tonight. It was hard to have them leave. I know it was even harder on them - especially Jeff.
My sister Jill is here to help. Maddie colored for about four hours today. I did too. She doesn' t like to color alone. Kari, I wish you were here. My coloring stinks.
Love,
Jane
Friday, May 27, 2005 7:54 PM CDT
Dear Friends,
Things remain calm here. Isn't that terrific?? Maddie is doing well. She is still off oxygen. The doctors seemed pleased. We are waiting for the CT scan on Monday and then we will create a plan from there.
The boys had a good time today. They got their haircut, played on the playground with Grandpa and visited Maddie. We were able to get an apartment today. Don, Marcia, Jeff and the boys moved us in. We have now officially had three very nice apartments in Durham, and I think this one is the best so far. I hope this is also our last one. It is nice to have the space and the washer and dryer.
Tomorrow the boys, the Grandparents and the dad head home. The boys and Jeff will finish school and then come back again for another visit. Maddie and I will miss them greatly but we will be busy healing and getting ready for us to go home too.
Love,
Jane
Thursday, May 26, 2005 7:07 PM CDT
Dear Friends,
Today was pretty uneventful medically. Maddie did well. She is still of the oxygen. They are increasing her TPN (nutition thru her line). She took a couple of long naps, watched some TV and colored one page in her book.
Sam, Max, Grandpa and Grandma came to the hospital to visit. Maddie didn't say much but I know she liked them being there. They brought her some big posters. (Thanks Aunt JoJo).
I am back at the hotel with the boys. It feels so good to be with them. Yesterday it seemed chaotic. Today I don't want them to ever leave.
I want to include Pastor Jamey's guestbook entry. We enthusiastically second those thank you's.
I made it home in one piece. It sure was great being with you for the afternoon. Our prayers are holding fast--and with great hopes and expectations. I think a lot of us were hungry yesterday. It was worth it and I think we made our point clear. There's no doubt about what we're asking for from God, is there?
Tim & Julie Jacobs, you two are fantastic! Thanks for running me back and forth, for the wonderful breakfast this morning, and the teriffic company. You were super hosts and your kindness made the trip so much easier. It was great to get to know you.
Thanks, too, to all of you who prayed for me in my travels and to those of you who helped $fund$ the trip. Isn't it so much better to be in the family of God when times get tough? We're all in this together--together we continue pray.
Psalm 40:1 "I waited patiently for the LORD; He turned to me and heard my cry."
Pastor Jamey
Stanton, MI - Thursday, May 26, 2005 6:31 PM CDT
Love,
Jane
Wednesday, May 25, 2005 7:36 PM CDT
Dear Friends,
It was busy day. In the morning, Maddie had her chest tube out. They also turned off her oxygen and just blew a little air at her. These are two great steps to improvement.
Maddie also went and received her second dose of radiation. They will do a CT Scan next Monday and decide what to do form there.
Pastor Jamey came in the afternoon. It was really good to see him and pray over Maddie. He went to radiation with us too. Thanks Jamey for coming all that way. It really means so much.
The boys and grandparents arrived around 6:00 pm! It was a good moment. Right now I am typing at the laptop in the hotel room. Sam is on my right eating cashews. Max is on the left trying to hit the computer keys. Shrek 2 is on the TV. It feels good.
Was anyone else hungry today?
Thanks so much for what you have done for our daughter.
It takes a village.
Love,
Jane
Tuesday, May 24, 2005 6:29 PM CDT
Dear Friends,
Maddie has been tired for most of the day. I know the chest tube hurts a little and she isn't feeling the greatest. They were going to take the tube out today but there was some conflict on the reading of her chest xray this morning. They are pretty sure it will come out tomorrow.
Maddie was picked up at 1:45 to go for her first radiation treatment. The plan now is for there to be two low dose treatments. The next one will be tomorrow. They will watch and review and decide from there.
The radiation itself only lasted about two minutes. She had to have a CT Scan before hand and an x-ray. It doesn't seem to have made her sick yet. Hopefully she can avoid that.
Thanks for all the support on tomorrow's day of fasting and prayer. It leaves me speechless. I will try to explain it all to Maddie. We are all looking forward to seeing Jamey.
The boys are on their way. They will be here tomorrow night. I can not wait to hug and smooch them.
Love,
Jane
Hi, Everyone. On behalf of our church I want to thank the entire "Trimper Network" for so many prayers and the steady flow of encouragement through this website. In the ongoing search by those trying to understand human suffering, your collective kindness provides heartwarming insights. You are a fulfillment of the scriptures which teach, "When one part of the body suffers, the whole body suffers with it."
The First Congregational Church of Stanton is inviting all of you to join with us to fast and pray for an entire day. On Wednesday, May 25th, the church is sending me to Duke to make a much needed hospital call. Not that God is more likely to answer prayers when the preacher shows up "in person," and not that He can't display his power when we pray from home...it's just that, at certain times, our love and concern compels us toward greater lengths—we believe this is one of those times.
Maddie's slow recovery and the protracted separation of the family is clearly difficult. Our plan is to join our hearts in prayer and to augment the concerted effort by fasting. The purpose of the fast is to symbolize our earnestness, "Merciful God, Maddie's recovery matters more to us today than even our own sustenance.” Will you please consider joining us for this day long concert of fasting and prayer?
Grace and peace to you all,
Pastor Jamey Nichols
Tuesday, May 24, 2005 9:44 AM CDT
Dear Friends,
I will make this quick just to fill you in on a couple of things.
Maddie is now on contact isolation. Her respiratory viral battery that was done a while ago showed a virus. That is probably what was hurting her lungs. I believe she is already on the mend from this but whenever we leave her room, we have to wear a gown, mask and gloves. Anyone coming into her room has to do the same.
Maddie also was passing a lot of blood out her bottom last night. There were big clots and it looked awful. Her blood count, platelets and coagualtion numbers were all good. They did decide to start radiation this afternoon. The mass is pushing on to the rectum and could be very dangerous if we don't do something. After witnessing the blood, I was all for radiation.
We will let you know how it goes. Please keep up the prayers.
Love,
Jane
Monday, May 23, 2005 2:35 PM CDT
Dear Friends,
Maddie remains 'stable'. I really like that word. I translate it from medical speak to mean, "Maddie is doing okay right now but we have no idea what might happen in the next hour." In mom speak it means, "Things look good right now and it is okay to breathe but keep praying."
They keep decreasing her oxygen requirement. She continues to handle each change well. I think she is currently receiving 30% through an air mask. They turned off the suction for the chest tube and are watching to see what happens. There was some talk about taking it out in the next couple of days, but we are in no hurry.
She took one bite of turkey and one bite of bread (separately). She thought they tasted funny. She has colored a little bit today and watched some tv. She also took a nap. Jeff spent the night last night. I went to the hotel and slept a great night's sleep. It was also nice to visit with Cindy, Jeff's sister.
I will end with this comment from Cindy. As we were leaving the hospital she said something to the effect " Maddie looks really good. If I didn't know you two better, I would say you exaggerated Saturday's events."
Thank you, God.
Love,
Jane
Sunday, May 22, 2005 1:00 PM CDT
Dear Friends,
After all the updates yesterday, the fact that I am updating mid afternoon is a good sign.
Maddie had a calm and quiet night. Her blood gasses continued to stay normal. She was in pain from the chest tube but she kept pushing her button that dispenses pain medicine.
The doctors feel she is doing well but are cautious. We will take it day by day and hope Maddie stays stable.
She started her new antifungal medicine last night. She will get it once a day.
We are trying to coordinate a plan to get the boys down here for a few days. Marcia and Don (aka Grandma and Grandpa Up North) are planning to drive down mid week with them. They will stay and head back next weekend. I look forward to seeing them and know Maddie will enjoy it.
Right now the boys are home with Aunt JoJo and Grandpa Rhode. They are taking such good care of them.
Jeff Foxworthy was on the floor today. Jeff and Maddie visited with him for ten minutes. He was very nice and certainly generous with his time.
Maddie has asked for a turkey sandwich. I have to go find the nurse and see if she can eat. It is hard to believe a girl who is having so much trouble is up for a turkey sandwich. Thank you, God! Please keep it coming. Thank you too to all the prayer warriors.
Love,
Jane
Ignore all the typos. I have time to update but no time to double check or use a word processing program. The teacher in me is disappointed. :)
Hi, Everyone. On behalf of our church I want to thank the entire "Trimper Network" for so many prayers and the steady flow of encouragement through this website. In the ongoing search by those trying to understand human suffering, your collective kindness provides heartwarming insights. You are a fulfillment of the scriptures which teach, "When one part of the body suffers, the whole body suffers with it."
The First Congregational Church of Stanton is inviting all of you to join with us to fast and pray for an entire day. On Wednesday, May 25th, the church is sending me to Duke to make a much needed hospital call. Not that God is more likely to answer prayers when the preacher shows up "in person," and not that He can't display his power when we pray from home...it's just that, at certain times, our love and concern compels us toward greater lengths—we believe this is one of those times.
Maddie's slow recovery and the protracted separation of the family is clearly difficult. Our plan is to join our hearts in prayer and to augment the concerted effort by fasting. The purpose of the fast is to symbolize our earnestness, "Merciful God, Maddie's recovery matters more to us today than even our own sustenance.” Will you please consider joining us for this day long concert of fasting and prayer?
Grace and peace to you all,
Pastor Jamey Nichols
Saturday, May 21, 2005 7:59 AM CDT
Dear Friends,
This will hopefully be my last update for the day. If it is your first time checking, the rest is below. We are very tired and very thankful and very cautious.
Maddie right now is chatting away more than she has in the past few weeks. She is watching cartoons and yelling at any medical personnel who touches her.
The next few days and nights are very important. She is on an oxygen mask and although her stats look good they are checking her blood gasses every four hours. They need to stay normal. Dr. Kurtzberg stopped by today and spent a lot of time talking with us. She thinks it is very important that Maddie not go back on C-Pap anytime soon. Each blood gas draw will bring some anxiety.
They have started another antifungal drug. They think they know which fungus is in the rectum. The Infectious Disease doctor called it a 'whimpy' one. The truth is no fungus is good in a BMT patient. But give us whimpy anyday.
Radiation is on hold for now. They are many questions that don't have answers. One of the most important for us is whether the mass is EBV, fungus or a combination of both.
I wrote one time about my contradictions in faith. Today I had to face one of these head on. I believe in heaven. I believe it is a better place. Yet, I pray for life for Maddie. I said it over and over. I pray for life. I pray for life.
As many children as we have known who died and no matter how much comfort we try to offer, I simply cannot imagine a day without Maddie.
I don't have answers. I don't understand how or why. But I thank God and thank God. Everyday she is here. Thank you.
Love,
Jane
12:30 pm. Latest Update: The chest tube is in. There was a big whoosh when it went in. It was done right in her room by the nicest surgeon I have ever met. This was crisis number one and it seems to have been diverted. Next crisis is the fungus in the rectum. The Infectious Disease Team is working with the BMT team to find the right treatment.
Sally, Jeff and I prayed over Maddie. We keep praying for life. I was filled with faith and hope. Please join us in praying for life.
Update: I am sorry to family for putting this out there. There is no time to call. Please don't wait until Wednesday to pray for Maddie. She is in serious trouble right now. Radiation has been canceled. She has a fungus in her rectum. Her lungs are also filling with air. We are headed to surgery to put in a chest tube. Our girl is in trouble.
Dear Friends,
Just a quick update for this morning. Jeff flew to Durham last night. Maddie was very happy to see him. She had her arms wide open asking for a hug. I also heard her say more words in the five minutes after he arrived than I had heard all day.
EBV is a lymphoma. It is not cancerous. The radiation will shrink the mass like it does a cancerous lymphoma. The worry is it will damage other tissue in the area. She will go for her first treatment today if they feel her lungs are well enough to travel.
We will let you know how it goes. Please say a prayer for Maddie.
Love,
Jane
Hi, Everyone. On behalf of our church I want to thank the entire "Trimper Network" for so many prayers and the steady flow of encouragement through this website. In the ongoing search by those trying to understand human suffering, your collective kindness provides heartwarming insights. You are a fulfillment of the scriptures which teach, "When one part of the body suffers, the whole body suffers with it."
The First Congregational Church of Stanton is inviting all of you to join with us to fast and pray for an entire day. On Wednesday, May 25th, the church is sending me to Duke to make a much needed hospital call. Not that God is more likely to answer prayers when the preacher shows up "in person," and not that He can't display his power when we pray from home...it's just that, at certain times, our love and concern compels us toward greater lengths—we believe this is one of those times.
Maddie's slow recovery and the protracted separation of the family is clearly difficult. Our plan is to join our hearts in prayer and to augment the concerted effort by fasting. The purpose of the fast is to symbolize our earnestness, "Merciful God, Maddie's recovery matters more to us today than even our own sustenance.” Will you please consider joining us for this day long concert of fasting and prayer?
Grace and peace to you all,
Pastor Jamey Nichols
Friday, May 20, 2005 3:05 PM CDT
Dear Friends,
Things change so quickly. Today was a day for worry. Last night Maddie was having a lot of blood in her stool. She has had an on and off again problem with this but the amount of blood got my attention as well as the nurse and on call doctor. We have spent most of today sorting through it all.
They took Maddie for an endoscopy. The blood was coming from low in the colon and it was caused by the mass pushing against the intestines. They are all talking right now, but it looks like Maddie will need the radiation. They are talking about two small doses. I am not sure on when they will start this.
There are so many issues and each day can bring something new.
Below is from and email I received from our friend and pastor Jamey. Thank you, Jamey and our church family.
Love,
Jane
Hi, Everyone. On behalf of our church I want to thank the entire "Trimper Network" for so many prayers and the steady flow of encouragement through this website. In the ongoing search by those trying to understand human suffering, your collective kindness provides heartwarming insights. You are a fulfillment of the scriptures which teach, "When one part of the body suffers, the whole body suffers with it."
The First Congregational Church of Stanton is inviting all of you to join with us to fast and pray for an entire day. On Wednesday, May 25th, the church is sending me to Duke to make a much needed hospital call. Not that God is more likely to answer prayers when the preacher shows up "in person," and not that He can't display his power when we pray from home...it's just that, at certain times, our love and concern compels us toward greater lengths—we believe this is one of those times.
Maddie's slow recovery and the protracted separation of the family is clearly difficult. Our plan is to join our hearts in prayer and to augment the concerted effort by fasting. The purpose of the fast is to symbolize our earnestness, "Merciful God, Maddie's recovery matters more to us today than even our own sustenance.” Will you please consider joining us for this day long concert of fasting and prayer?
Grace and peace to you all,
Pastor Jamey Nichols
Thursday, May 19, 2005 8:42 AM CDT
Dear Friends,
Sorry for the lack of updates from the North Carolina branch of the Trimper family. It is hard to find the time to sit and type an entry. I get nervous if I leave Maddie too long.
Maddie did have her CT scan yesterday. It was quite an event getting her down to the first floor for it. It took a respiratory therapist, a BMT nurse, a transport person and myself to get her down there. I was a nervous wreck the whole time. She was a wake a lot yesterday and very irritable. She complained the whole trip down.
The report said that the mass was a little smaller. About a half a centimeter all around. When they did the biopsy two weks ago, the section they took was found to be neurcrotic (spelling???). That basically means dead cells. The drug she gets IV for the EBV should be stopping the disease where the blood supply is and the 'dead cells' will be taken care of by her body. They explained it like a bruise going away. So the mass decreasing was a good sign that things are in the right direction. The fact that it only decreased a small amount didn't surprise the doctors. It is just a slow process.
The scan also showed some areas in her lungs that are either filled with fluid or just not expanded. The C-pap machine will be needed for a while.
In short: the scan didn't surprise anyone and reinforces that things are going in the right direction.
Maddie did have an hour break from the machine yesterday. She just wore the regular oxygen mask. This morning she also went off for another hour. I am going to try to get her two more small breaks through-out today.
The boys sound good. Sam is still lacking strength but is eating some. Max is fine and is sceduled to get another botox treatment on Friday.
Aunt Sally is here. Maddie keeps telling us to be quiet. Have I mentioned that she is irritable?? She certainly has every right to be.
Love,
Jane
Thursday, May 19, 2005 8:42 AM CDT
Dear Friends,
Sorry for the lack of updates from the North Carolina branch of the Trimper family. It is hard to find the time to sit and type an entry. I get nervous if I leave Maddie too long.
Maddie did have her CT scan yesterday. It was quite an event getting her down to the first floor for it. It took a respiratory therapist, a BMT nurse, a transport person and myself to get her down there. I was a nervous wreck the whole time. She was a wake a lot yesterday and very irritable. She complained the whole trip down.
The report said that the mass was a little smaller. About a half a centimeter all around. When they did the biopsy two weks ago, the section they took was found to be neurcrotic (spelling???). That basically means dead cells. The drug she gets IV for the EBV should be stopping the disease where the blood supply is and the 'dead cells' will be taken care of by her body. They explained it like a bruise going away. So the mass decreasing was a good sign that things are in the right direction. The fact that it only decreased a small amount didn't surprise the doctors. It is just a slow process.
The scan also showed some areas in her lungs that are either filled with fluid or just not expanded. The C-pap machine will be needed for a while.
In short: the scan didn't surprise anyone and reinforces that things are going in the right direction.
Maddie did have an hour break from the machine yesterday. She just wore the regular oxygen mask. This morning she also went off for another hour. I am going to try to get her two more small breaks through-out today.
The boys sound good. Sam is still lacking strength but is eating some. Max is fine and is sceduled to get another botox treatment on Friday.
Aunt Sally is here. Maddie keeps telling us to be quiet. Have I mentioned that she is irritable?? She certainly has every right to be.
Love,
Jane
Wednesday, May 18, 2005 1:51 PM CDT
Hello. I thought I’d give a quick update on things. Maddie is about the same. Little improvements here and there. She is also having a CT scan today. We hope to see little or NO mass. Jane called this morning and they had her oxygen intake down to 35 and her oxygen level was hanging around 97. That was good news to start the day. She just needs to keep going in the right direction. It sounds like it will be a long haul, again. Sam is on the mend. He's still at home, but he’s keeping things in his body. He just started eating small amounts again. Max was sick over the weekend. I thought he was going to get what Sam did, but he's doing great.
We all miss Maddie and Jane (Mom). It’s been very hard being home with Maddie in the condition she’s in. Hard to stay focused on any task or job. The boys are handling everything very well. Proud of them.
Sally (Jane’s sister) made it down to N.C. yesterday. She’ll stay and help out for a few days. My mom just finished her weeklong tour of duty. Thanks Mom. Hopefully things will move along and we’ll get them home soon. Summer is coming and these three kids deserve a nice warm summer of fun!
Jeff
Monday, May 16, 2005 9:26 AM CDT
Dear Friends,
There isn't a lot to report. Maddie is still on the C-pap machine. It has been a lot of one step forward, two steps back. Yesterday her chest x-ray was worse. There was some fluid in the lung. They started her on the diuretics to get some fluid off of her. Her lungs sound better this morning. They did another x-ray but I haven't heard the report.
Her heart rate has been high. This could either be pain related, or the fluid coming off her could have made her dry or there could be some other random explanation. I am constantly looking at her monitors for her oxygen level, heart rate, and respirtory rate. This morning her numbers look better than yesterday morning. We'll see how the day transpires.
Meanwhile, back in Stanton, Sam is home from school again. He isn't vomiting but is having a hard time bouncing back. He is really tired. Max didn't seem to get too sick but Jeff said he was having a tired morning. We'll see how he does. My dad is home with Sam today.
The nurses here are so sweet, kind and caring. They are taking such good care of Maddie (and me). As much as we dislike being in the hospital, there is no better place for Maddie to be than the transplant floor of Duke hospital.
Love,
Jane
Saturday, May 14, 2005 6:15 PM CDT
Dear Friends,
I will try to update what is going on in both Durham and North Carolina. Jeff may have to edit it a bit later.
Max started throwing up this morning. To the best of my knowledge, he only threw up twice today. Jeff started him on a suppository and we are hoping it helps. Sam was low key today. Jeff kept giving him Tylenol. I know he napped today. Joanne was there to help again. Jeff really appreciated it. Dad spent the night last night too.
Maddie is still very quiet and truthfully looks very sad. She shakes her head no when I ask her if she is sad, hurts, etc. I think it is hitting me today that this process is going to be slow. I miss talking with her and watching her smile. I am also a little troubled about how they are going to treat both the Epstein Barr Virus and the Graft vs Host disease. But that is getting ahead of things and we need to treat the EBV now.
They took her off the C-pap machine for an hour and a half. She did okay but eventually needed to go back on. I think she liked the small break. But it was hard on her body. Her respitory rate and heart rate slowly crept up. They will give her another small break tomorrow. It's going to take a while.
I miss the boys. I miss my normal Maddie. I miss Jeff. Being a part is just so hard. It makes it harder when you don't know when it will end.
Love,
Jane
Friday, May 13, 2005 7:28 PM CDT
Dear Friends,
Jeff called a little while ago. Sam is going to be able to come home tonight. They won't get home until after 9. I think they are both really glad. Grandpa Trimper went home tonight. Joanne is at our house with my dad and Max. Joanne will probably head home tonight. Hopefully it will be a healthy and happy house this weekend.
Maddie was awake a little more today. She doesn't talk or want to do anyting yet. Her stats look good and her labs are stable. We still haven't tried to get her off the C-pap machine. Hopefully we can try for a couple of hours tomorrow. I think she would enjoy having that mask off her face. They say it feels like you have your face out the window of a car going 60 miles an hour.
Grandma (Marcia) has been packing up the motel room. It is graduation weekend for both UNC and Duke. Luckily, someone through the hospital found us an apartment to stay at for the next couple of nights.
Had two great phone calls today from two phenomenal Texas women. Invisible bonds.
Love,
Jane
Thursday, May 12, 2005 3:16 PM CDT
Hello. I left the hospital about 8 pm last night. Sam was doing pretty good. They wanted to get some blood work and fill him with IV fluids. I haven't talked to them yet this morning. So, I left two children, in two different hospitals, in two different states yesterday. Hard to beat that! Told Max, NO siezures!
6:20 pm Jeff just called. He's home. But Sam is not. Dr. Konstantelos called and decided to admit Sam into the hospital in Greenville.
Dear Friends,
Maddie is continuing to heal slowly. They decided not to take her off the C-pap machine today for the two hour break. Maybe tomorrow of the next day. We gave her a little sponge bath today. She shook her fist at me. Our girl is feisty.
Jeff left this morning. It was hard for him to go. I know the boys will be happy when he gets home. Sam was still not feeling well today. Don took him to the hospital last night to get some fluids. Hopefully, Max will not get whatever Sam's been battling.
Quiet day here in Durham.
Love,
Jane
Wednesday, May 11, 2005 2:17 PM CDT
Dear Friends,
Maddie is pretty much the same as yesterday. She is rarely awake. She doesn’t appear to be in any pain. To simplify this the most, there are three issues currently going on.
1. Her lungs: She is on the C-pap machine. She is doing well. They may take her off of it for a two hour period tomorrow and see how she does.
2. Her infections: She had both gram positive and gram negative bacteria in her body. They are treating with antibiotics (IV) and will continue with that.
3. Epstein Barr Virus (EBV): They have started the IV drug for that. She will get 6 doses in a 4 week period.
They think there may also be a little GVH thrown in. The drug for EBV will also help with the GVH. It is going to be a balancing act for a while helping the EBV, helping the GVH and not wiping out her immune system again.
Yesterday she was trying to tell me something. She can’t talk well because of the C-Pap machine. She started to spell something in the air. I got her a piece of paper and pen. She wrote out ‘pizza’. That’s my girl.
Jeff is having mixed emotions. He will fly home tomorrow and be back to work. He is anxious to get home to the boys and having a hard time leaving Maddie. We really don’t know how we are going to work all this out. I guess day by day we will create a new plan. Sam called today. He is throwing up and Grandpa is taking wonderful care of him. I will be glad when Jeff gets home but will always wish I could be in two places at one time.
This next section might get a little emotional. It is hard not to see things very clearly and do some hard thinking when you are at Duke. Friday was very scary. The doctors were not messing around and were not telling me that everything was going to be alright. They were not going to pacify me. I had to consider the worst for our Maddie.
I have very good friends who have spent a lot of time in the PICU with their children. I thought of them a lot in the past couple of days. With all we have gone through, we never had a PICU experience except one night after Max’s first seizure. I wondered how my friend’s visits compared to ours.
You spend a lot of time with the same families each day. Each group facing their own struggles. You care about their children. You watch the nurses inside PICU and make sure they are taking good care of these children as they are your own. A Grandma of another child came and prayed with Jeff over Maddie. She just spoke with me in the hall and reaffirmed so much of what we believe. She stands so strong in her faith and is so caring. We see these families in the hall and check with them daily. One family even started calling Mom ‘Michigan’. You become entangled in their lives and are better for it.
The BMT floor has all new customers right now. I am continually amazed by the wonderful souls we meet. Facing tragedy must bring out the best in people. We talk in the lounge. We pray for each other’s children. We watch, wonder and wish.
In the past three years, my faith has grown. God has been very patient and has listened to me contradict, question and seek answers. One steady truth I have known all along is how connected everything is. How we are all tied together with invisible bonds. Now we continue to meet and create new bonds. I take strength away from these and feel so blessed they have happened. Isn’t He clever? What an understatement. But there is something to realize here, something to discover. I keep my eyes peeled and my heart open and hope I don't miss it.
Sorry it was such a long one.
Love,
Jane
Tuesday, May 10, 2005 12:12 AM CDT
Dear Friends,
It's been a busy and blessed day. This morning Maddie was continuing to do well. Her lab results were heading in the right direction. She is breathing well on the c-pap machine. After rounds this morning, they told us she could be transported back to 5200 - the transplant floor. Yay! Yay! Yay! Whew! Whew! Whew! She was back in her room around 12:30 this afternoon. She is still exhausted but opens her eyes once in a while. She has a new mask on htat just covers her nose. Her exact words were, "This is driving me nuts." It came out in a quiet breathy pressurized voice.
Dr. Martin just came in a while ago. The final pathology report states that the mass is EBV. Mystery solved. Treatment will continue. Now we wait and heal.
Mom left this morning. She went in to see Maddie in the ICU. Maddie gave her a weak little hand wave. Mom did very well while she was here. This is all difficult for her and she was strong through out the whole week. Thanks, Mom.
Thank you, God.
Love,
Jane
Monday, May 9, 2005 10:46 AM CDT
Monday night update: Maddie remains the same. They are still trying to get her levels straightened out. Once that is done, they think she will be able to return to 5200. No plan has been made to address what is going on with the mass. She was very sleepy today.
Dear Friends,
Let's rearrange that wall chart this morning. Maddie is doing well on the c-pap maching. The level is at 40 now. Slide that towards the okay side but not quite there. Her belly can stay on the okay side. It is not any worse right now.
There are now some questions on the EBV. Slide it over to the worry side for today. For some reason, they are now not so sure that the mass is EBV. We need to gain a lot more information. The blood EBV test should come back today or tomorrow. There is even some beginning discussion about doing another biobsy. (Enter primal fear). We'll keep you updated.
Boys are having fun at home. They are well taken care of. Thanks Joanne and Dad.
We'll write again tonight.
Love,
Jane
Sunday, May 8, 2005 9:33 AM CDT
Sunday night update: Maddie avoided the vent so far. They took off a lot of fluid thru her catheter. She is on a C-pap for oxygen. It is only set at 55 ight now. She is at 97 or her oxygen level. She slept a lot today. She was a little spunky when awake. Her infection looks a little worse than this morning. Tonight will be important. We pray she does well and continues to improve.
Dear Friends,
It seems like each day is just a huge wall chart with sliding pieces. You can move things back and forth between the worry side and the okay side.
This morning my mental wall chart for Maddie is switching things around. Her belly is looking better. The red is receding and lightening. The antibiotics seem to be working. Slide her belly to the okay side.
Her chest xray this morning didn't look good. Her lungs have fluid in them. Her oxygen requirement has gone up and it is harder for her to breathe. Step one is to try to get the fluid off of her. They are using meds that will flush as much out as they can. If that doesn't work, they will need to ventilate her and help clear that out of the lungs. Dr. Driscoll, the transplant doctor on duty this weekend used the word 'reversible'. Even though that keeps me somewhat calm, slide Maddie's lungs to the worry side.
She is sleeping right now. I think this will be a long haul. She will be in PICU for a while. The time will be shorter if the diuretics they are using can clear the fluid.
Thanks for the prayers. Please keep them coming. Complete healing.
Love,
Jane
Saturday, May 7, 2005 3:05 PM CDT
Dear Friends,
Things remain much the same. Some things have improved but some new worrie have arisen. Fortunately, we are still in a better place than yesterday morning.
Maddie is still in the PICU. She will be there at least one more night. They are watching her carefully. They ar giving her less oxygen through a mask (not a ventilator). She was at 100% oxygen last night. Last I heard she was below 60% and her stats were in the high 90's. That will al make the most sense to you hospital savvy readers.
Kidneys look good. Her arterial blood could have been better when tested for blood gases.
The biggest concern right now is a reddening area around the surgery site. It has been spreading and getting darker. Right now they are switching antibiotics to hopefully gain control of it. If that doesn't work, they will most likely open up the site and cover it with dressing. Somehow this lets the infection 'out'. It scares me, but we'll do what we have to.
She is stable right now but being monitored closely. As a mom, I feel she is safe but am fearful it could change any hour. The next 48 hours are pretty important.
It is interesting how you can have faith in God, give control to God and still feel that primal fear when your children are involved. Deep breathes help.
The boys are good. Joanne and my dad are watching them. They went to the school carnival last night. They rode the golf cart today. They have two dedicated sitters.
Thanks for the prayers. Please keep them coming.
Love,
Jane
Friday, May 6, 2005 8:06 PM CDT
Dear Friends,
Man, that guestbook gets to me. It’s hard to type through the tears.
Do you believe in prayer? I always say I do but today was a reassurance if I ever needed one. This morning was very scary. The doctors and nurses were all gathered in the room. Everything was heading in the wrong direction. We were off to PICU. One of the strongest thoughts in my head was I had to get to the computer and get prayers going. As soon as I could leave Maddie, I did.
Within a couple of hours of posting the update, Maddie was turning things around. The urine came. Her kidney numbers are normal. She didn’t need to be on the ventilator. She is getting a lot of oxygen and working hard but so far she is doing it on her own. Thank you, God. Thank you, prayer warriors.
She has the EBV. They started the IV med. Radiation is on hold. Maddie is still in PICU. She isn’t completely out of the woods but she is in a much better part of those woods. She may still need the ventilator tonight if it gets to be too much for her. But with the other concerns lessened, the ventilator is not a bad option.
Jeff made it safely to Durham. Maddie said, “Hi daddy.” One of the rare times she was awake today. How he could not melt?
Thank you for caring about our family – our little girl. Thank you for the prayers. Please keep them coming for a while longer.
Love,
Jane
Friday, May 6, 2005 7:38 AM CDT
1:00 update: Maddie is now in the pediatric intensive care unit (PICU). They are wating to ventilate her. Part of her lung has collapsed and they are trying to expand her lungs back. That is issue one. The second issue is the mass in her pelvic region. There is not an official pathology report but they think it is the EBV. It is pressing on organs are creating many problems for her. The fluid that was put in her last night was going into her belly. A big concern is her kidneys. She is still passing urine thru a cathetor but they are afraid if the mass grows, she won't be able to do that. Radiology is getting involved. They think that will be the quickest way to shrink the mass. She is in good hands but needs prayers. Jeff is on a flight this afternoon. There are brainstorming seesions going on to determine what is best for Maddie. We'll let you know when official things are decided.
Things have taken a turn for the worse. I'm flying down there today. She needs your prayers!!!!!!!!!!!
Dear Friends,
Maddie had her surgery yesterday. Things appeared fine. They did the biopsy and put in the new single lumen line for TPN. She had some difficulties through the night. This morning her blood pressure was dropping, heart rate was high and oxygen was falling. They are doing xrays and ultra sounds to see if she is bleeding at the biopsy site.
I called Jeff and thought he should come until this gets figured out.
Say some prayers for Maddie.
Love,
Jane
Thursday, May 5, 2005 7:25 PM CDT
Hello. I heard from Jane a few times today. Maddie is still in a lot of pain. They decided on a few things. They are going to admit her on to 5200 tonight. They want to take care of the pain. She has surgery tomorrow at 6 AM (be there). They are also going to put in a line (port) while she is under. They want to have a line in for other things, TPN... So, two mini surgeries. Could be long day. We probably won't know anything until next week. Jane is also talking about this could be another long stay. Like I said, we’ll know more next week. So we're starting to think about our options and plans. We need to get Maddie well.
The boys and I are doing ok. They've been good and we're plugging away. Sam even said a prayer for Maddie last night, what a guy. That's about it for now. I'll pass along any more info as I get it.
Jeff
Jane just called. Maddie is out of surgery. Things went well. Almost two hours.
They had to make a small cut in her belly to get a sample out. They couldn't
"see" it the other way (ortho). The doc said they got a good sample that can be
tested. So, it's a waiting game. They put her line in also. She said they'll
probably be in the hospital over the weekend. Not sure what the plan is. Maddie
will have the wonderful pain killer that she can push the button when things hurt.
So, that's all for now. Jane sounded good. She always sounds good. All for now.
Jeff
Wednesday, May 4, 2005 6:01 PM CDT
Hello. I heard from Jane a few times today. Maddie is still in a lot of pain. They decided on a few things. They are going to admit her on to 5200 tonight. They want to take care of the pain. She has surgery tomorrow at 6 AM (be there). They are also going to put in a line (port) while she is under. They want to have a line in for other things, TPN... So, two mini surgeries. Could be long day. We probably won't know anything until next week. Jane is also talking about this could be another long stay. Like I said, we’ll know more next week. So we're starting to think about our options and plans. We need to get Maddie well.
The boys and I are doing ok. They've been good and we're plugging away. Sam even said a prayer for Maddie last night, what a guy. That's about it for now. I'll pass along any more info as I get it.
Jeff
Jane just called. Maddie is out of surgery. Things went well. Almost two hours.
They had to make a small cut in her belly to get a sample out. They couldn't
"see" it the other way (ortho). The doc said they got a good sample that can be
tested. So, it's a waiting game. They put her line in also. She said they'll
probably be in the hospital over the weekend. Not sure what the plan is. Maddie
will have the wonderful pain killer that she can push the button when things hurt.
So, that's all for now. Jane sounded good. She always sounds good. All for now.
Jeff
Monday, May 2, 2005 4:43 PM CDT
Dear Friends,
Wow. Thanks for all the guestbook entries. I get goosebumps and tears when I read them.
We all arrived wherever we were going safely. Thank you, God. Maddie, Mom and I arrived in Durham around 10:30 this morning. We spent the night last night in Beckley, West Virginia. We didn’t sleep much through the night and decided to head out early.
Maddie has had some big pain on the trip. It comes and goes but she was really hurting. There were two times, I sat in the back with her on my lap (I know Jeff, it wasn’t the safest, but when your baby is in pain she needs you!!). She slept for a couple of hours both times I did that.
It is such a strange feeling to arrive in Durham. You can’t believe your back and so thankful you are. Your breathing slows down. Your heart rate goes back to normal. You look up and down the sidewalks looking for Sue and Dr. Kurtzberg. It’s a good place and I think I may be an official Blue Devil.
Maddie had her labs drawn. Sue came to visit. We met with the surgeon. Maddie had her CT Scan. We’ll find out more tomorrow. The biopsy is tentatively scheduled for Thursday. Since arriving, Maddie stomach has hurt her very little if at all. I guess she may also be Blue Devil.
We are now tucked in to the hotel room. We have ordered “Maddie’s Favorite Pizza” aka Dominos thin crust cheese pizza.
Meanwhile, in Ohio. Jeff will have to fill you in on that. He and Max arrived home tonight. Jeff thought it went well and reinforced much of what we are already doing with Super Max.
Sam had a great time at the Carroll’s house. I am anxious to hear all about it from him and then Aunt Sally’s version.
Please keep praying.
Love,
Jane
Yes, we made it home tonight. We're all a little tired, so it's early to bed. Things went well. We met with the doctor this morning. She sounded real pleased with what Max is doing and all the therapy, school... She stressed (many times) that therapy and building strength must continue to be a focus with Max. So therapy, lets keep going! She also gaves us a couple of scripts for things she thought would benefit Max. So insurance, her we come! There were three main points that I thought were important. First, we were told about many good ideas for therapy and equipment. Second, we went down another path to find what is best for Max and to see what's out there. Third, we found out that we are doing things right, keep pushing therapy and keep moving forward. I'll add another one, she was very nice to talk to and I think she liked Max.
We're tired, happy to be home, we miss Maddie and Jane and wish Jane a Happy Birthday on Wednesday.
Friday, April 29, 2005 6:28 PM CDT
Dear Friends,
As I wrote earlier, ten years ago Max was born. He was a furry little baby and cute as can be. He is our son and we are so incredibly proud of him.
Max had a great birthday. Mrs. Camp at school had a cake made for him. He celebrated in both his regular ed class and his special ed class. We had his dinner of choice tonight (spaghetti) and opened the his gifts. Max is hard to impress but he really liked his gifts. Maddie and Sam were very excited about helping him, passing him his gifts, and wishing him happy birthday this morning in bed. They argued for 5 minutes about who got to say it first. They love him dearly.
Tomorrow will be the family party. We’re looking forward to celebrating his life.
Maddie, my mom and I will be leaving for Durham on Sunday. On Monday afternoon we will see Sue at clinic, give blood for labs, and have a CTScan done. We will do pre-op stuff on Tuesday morning and hopefully have the biopsy done on Wednesday. Sue is hoping they can do it laproscopically (not sure how to spell that one). It will be up to the surgeon once he sees the scan.
Meanwhile, Jeff and Max are leaving on Sunday to go to Cincinnati to go to a rehab doctor. They will have an appointment on Monday morning and come home that day.
That leaves us with Sam. He is going to Uncle Bill and Aunt Sally’s house until Tuesday. He is very excited.
I’ve been asked a lot of questions in the past couple of days. Her mass is located near her oolon. Her colon is wrapping around the mass and they are worried about a blockage. Maddie is also feeling quite a bit of discomfort. It started on Monday and comes and goes through-out the day.
Thanks for the prayers. Please keep them coming.
Love,
Jane
Wednesday, April 27, 2005 7:26 PM CDT
Friday: April 29th -Today Max turns 10!! It is hard to believe it has been ten years. It makes me realize he will be 20 before we know it. Happy birthday, big guy!
Dear Friends,
Maddie had her CT Scan today. The mass that was there has grown bigger. It is pretty concerning. Dr. Konstantelos called Duke. We spoke with Sue tonight. She had talked with Dr. Kurtzberg. The first thing she told me was that Dr. Kurtzberg doesn’t think it is life threatening. I admit my imagination was really getting the best of me. Dr. K has three theories. The first is still EBV (Epstein Barr Virus). The second is an infection. The third on the list was that part of her appendix burst and caused an infection. They want to do a biopsy of the mass and find out for sure. We’re making plans tonight on how, when, where, etc. Sue is making some calls tomorrow too.
Her lungs look good and sound good. Her weight was up a little.
Please say a prayer for Maddie.
We handed over Maddie’s health to God a long time ago. He is and always will be in charge of her. I have told a few of you that there are times when I sit and worry. Should we do this? Should we do that? How about trying this? I can sense God chuckling, shaking His head and saying, “You still think you’re in charge. Don’t you?” Good reminder.
Love,
Jane
Monday, April 25, 2005 4:47 PM CDT
Dear Friends,
Things are pretty much the same. Maddie has eaten a bit better in the past couple of days. She had diarrhea a couple of times yesterday but overall is doing much better. Her congestion is also much better.
Max has been very high tone lately. Although he seems to feel fine, he just hasn’t been quite himself. I am hoping he will be back to normal soon.
Sam is enjoying school and talks about all his friends in his class. It is good to see him at school. He is so independent.
Jeff is still hurting. He didn’t go to school today. His face hurts a lot and we are hoping the new antibiotic helps him.
Some of you have asked about the second donation for the fellows. We are waiting for updates and then will put together the next newsletter. If you are a partner or a member of a team, you can send in your donation at any time. We would like to have the money by June 1st. The whole thing is so amazing and I know Dr. Kurtzberg and Dr. Escolar are so appreciative of the donation. We are very hopeful about the work being done at Duke and UNC. Thank you. Thank you. We’ll get the newletter out as soon as possible.
Love,
Jane
Saturday, April 23, 2005 6:25 AM CDT
Dear Friends,
What is better than a Saturday morning? Max is still sleeping. Maddie is coloring and Sam is eating a brownie. Yes, that is his breakfast.
Things are pretty steady here. All three kids are feeling well. Only one person in the house is sick. Jeff has been feeling awful for a couple of days now. Remember when he wrote about putting out a video???
Bethany’s Hope in Canada is having their gala ball tonight. Jeff and Bill were planning on going. Unfortunately he had to cancel. We hope they have a great night.
Maddie has started taking a powder medication mixed with orange juice 3-4 times a day. This has been helping with her diarrhea. I am hoping and praying she eats well this weekend.
Have a great weekend!
Did I mention snow is falling from the sky as I type? Just a few flakes. Spring in Michigan. Gotta love it.
Love,
Jane
Wednesday, April 20, 2005 6:18 PM CDT
Dear Friends,
Maddie had a doctor’s appointment tonight. She is down a pound and still sounding crackly. I’m sorry to quote Anne Lamott again so soon, but she said another thing I really related to. She said she had two prayers. Help me, help me, help me. And thank you, thank you, thank you. On the ride home I went through my help me, help me, help me prayer for Maddie. She is so close to being well. She just needs to get rid of the diarrhea, gain some weight and grow strong. I know God is listening. Tonight I’ll go through my thank you, thank you, thank you prayers.
Max and Sam are doing well. Max has been having a tired week. I think the virus is working its way out. Sam is feeling well and enjoying playing outside. He said tonight, “I love school.” Max just looked at him like he was a little crazy.
Our friends the Wades sent us some nice Believe cards. You open up a little door and they give you a message. Here is the one for tonight:
“No one really knows enough to be a pessimist.” Norman Cousins
I love that!
Love,
Jane
Although we chose to make our situation with the kids public, we respect the private struggle of others. I am going to walk a fine line here and hope you will help me.
We have a friend from Stanton that is struggling in a Grand Rapid’s Hospital. She is immensely private and strong. She is battling cancer. Please say a prayer for her tonight.
There are so many people in need of prayers. Carolyn and Ron are both fighting some battles that they shared in the guestbook. They have been such good barn builders.
Sunday, April 17, 2005 7:07 PM CDT
Dear Friends,
Well, it was indeed a nice, long easy weekend. Thank you, God. We relaxed, played and worked a little.
All in all, the kids are in good health.
I’ve been reading Traveling Mercies by Anne Lamott this week. I love when I read just the right book at the right time. This book was recommended to me by Pat, another MLD mom. It took me two years, but I finally got around to reading it. There is a chapter called Barn Raising. I want to share a section with you. Anne was writing about friends of hers who had a daughter, Olivia, with cystic fibrosis.
“By mid January, though, I had a vision of the disaster as a gigantic canvas on which had been painted an exquisitely beautiful picture. We all wanted to take up a corner or stand side by side and lift it together so that Olivia’s parents didn’t have to carry the whole thing by themselves. But I saw that they did in fact have to carry almost the whole heartbreaking picture alone. Then the image of a canvas changed into one wall of a barn, and I saw that the people who loved them could build a marvelous barn of sorts around the family.
So we did. We raised money; catastrophes can be expensive. We showed up. Sometimes we cleaned, we listened, some of us took care of the children, we walked their dog, and we cried, and then made them laugh; we gave them a lot of privacy, then we showed up and listened and let them cry and cry and cry, and then took them for hikes.
………….We, their friends, all know the rains and the wind will come, and they will be cold –oh, God, will they be cold. But then we will come too, I said; we will have been building this barn all along, and so there will always be shelter.”
You all are the best darn barn builders around. Thanks for the shelter. As the kids get well, I find myself adjusting - getting back to normal. But the awe of all you have done for us, the way you have lifted us up, will always be with me.
Love,
Jane
Friday, April 15, 2005 6:38 PM CDT
Dear Friends,
We had good news about Maddie’s lab work and X-ray. Her potassium and magnesium were normal. (She is taking supplement.) Her white blood cell was up to 4.3. That makes me feel better than where it was last week (1.4). Her X-ray came back normal. Good reports. She is coughing a little but overall feels well.
Max and Sam are still going strong. They had a good week at school and they both look tired.
Grandma and Grandpa from Charlevoix came and watched Maddie and Sam today. They had a good time. They even went on a picnic. Thanks, Marcia and Don.
Max was able to share his fun (stories, photos...) from the Piston's game to his class today. He did a nice job. Thanks Lynne and Tammy.
We are ready for a weekend and pray it will be a slow, boring, easy one.
Love,
Jane
Wednesday, April 13, 2005 7:10 PM CDT
Dear Friends,
Here is the latest news.
Maddie’s EBV test came back negative. We aren’t sure why the lymph nodes in her CT Scan had increased in size. Tonight she went to the doctor. Dr. Konstantelos heard crackling in her lungs. They took an X- ray and we haven’t heard the result. She also had her labs drawn. We’ll find out about those tomorrow.
Max had the shakes last night again. This morning he went for an EEG in Greenville that was scheduled weeks ago. He started shaking a little tonight too. My current guess is it is tone related. When I bend his legs, it slowly stops.
Sam is congested but good.
Overall, things seem pretty good. The problem is with all the meds and doctor’s appointments we don’t get things done that we should. Reading homework hasn’t been done. Only one child had their teeth brushed. The house is very cluttered. I miss feeling on top of things. I think that has more to do with being a mom than MLD.
Hope you are all having a good week.
Jane
Monday, April 11, 2005 5:59 PM CDT
Dear Friends,
It was back to school today. It was a little hard to getting going this morning, but we made it.
Max and Sam are still congested. I am too. Jeff is oddly enough the only healthy one in the house again. After all his sinus surgeries, he deserves it.
We received a call from the doctor’s office. Maddie did test positive for RSV. We aren’t sure what that means yet. Did she have it first and give it to the boys? Does she have it right now? Is she going to be getting worse? We are also waiting for the EBV test to return this week. She is acting fine but tired. She hasn’t been eating as much either. Her weight is always a concern. But she is happy and making everyone laugh with her antics.
Jeff and I have decided we need a vacation! We think we are ready to plan something for June. We haven’t actually been on a real vacation together since our honeymoon. Needless to say, we aren’t very good at planning trips. We don’t want to go too far. We’d like to go in June. We want something all inclusive, good food, nice beach, nice place….Somewhere to relax but there would be things to do if we wanted. We are thinking possibly Aruba, Cancun, or Cabo. Any advice? Has anyone been to a particular hotel that was easy, stress-free, and nice?? We have a great travel agency right here in Stanton who is helping us and will set things up.
Now planning the trip and actually leaving the kids are two different things. I would like to think we can really do this but we know we’ll be buying trip insurance just in case. All advice is welcome!
Oh yeah, we are not considering Minneapolis or Durham as a relaxing vacation destination!
Love,
Jane
Saturday, April 9, 2005 7:03 PM CDT
Dear Friends,
It still feels good to be home. We love the spring weather. Sam, Max and I are congested. It isn’t a surprise that I have it too. Maddie and Jeff are still pretty clear. Hopefully by Monday most of the virus will be gone.
Maddie went on Friday and had her labs drawn. Everything looked good except for her low white blood cell count. I think this is probably virus related. She was tested for RSV on Friday and we’ll find out on Monday. We will also know about the EBV later in the week. She didn’t eat much today. That is always a stress. She is very thin. I think the antibiotic that she started last week might be giving her some belly trouble.
Grandma and Grandpa Up North came over today for a quick visit. The kids were really glad to see them.
When we came home from North Carolina, there was a package waiting at the door. It was addressed to Max. Inside was a basketball signed by Larry Brown, Joe Dumars, and many of the players from the Pistons. What a group! We're very impressed by both their generosity and thoughtfulness.
Maddie asked me today why days seemed to be going so fast. I think that means we are having good days.
Love,
Jane
Thursday, April 7, 2005 4:38 PM CDT
Dear Friends,
It feels good to be home. It was not the relaxing fun trip we had envisioned. We did arrive home around 4:30.
We went to the zoo yesterday. We didn’t stay long. We ate hotdogs, looked at the animals and bought some souvenirs. Max was really feeling lousy. Sue called after we were on the road and said both boys had their viral battery tests come back positive for RSV. They should be able to handle it all right. The hope is that Maddie doesn’t catch it. I am not sure how she will miss it after traveling in the car both trips and living in a hotel room. We will wait and see. So far she is still feeling pretty good.
Both boys had fevers again last night. Max looked better today and I am hoping he is on the mend. Sam doesn’t seem to be hit as hard as Max. He has been very congested and emotional.
Goulash is cooking on the stove. Maddie has been requesting it all week. Max looks comfy on his couch. Sam is off discovering his toys. It feels really good to be home!
Love,
Jane
Tuesday, April 5, 2005 8:09 PM CDT
Dear Friends,
Today was a busy day. Maddie had her MRI today. She did well during it. She fell sound asleep. Then she and Sam both gave blood for labs. We met with Dr. Kurtzberg and Sue. Max looked absolutely awful. The poor guy was simply miserable. Dr. Kurtzberg put both Sam and Max on an antibiotic. She also ran viral battery tests on each of them. I hope they start to feel better soon.
Maddie’s CT Scan showed a lymph node that was enlarged. They drew an Epstein Barr lab and we’ll know more in a week. We made some med changes. Her Orapred (steroid) will be decreased. Her labs showed a low white blood cell count (possible EBV or another virus) and low magnesium. Dr. Kurtzberg said that with EBV or without, Maddie should be okay to start school in the fall.
Sam had some redness when they looked in his ear. His nerve conduction test was a little worse than last time. Overall, things checked out well.
We are going to try the zoo tomorrow. We will go for as long as Max can handle it. I hope he feels a little better tomorrow. We will start to head home after that. We’ll stop in West Virginia and finish the drive on Thursday. I think Max needs his own bed, couch, etc.
We hope all is well with you.
Love,
Jane
Monday, April 4, 2005 5:30 PM CDT
Dear Friends,
We are safely in Durham. It was a long day. When you are away from here for a while you forget all about the DWF (Duke Waiting Factor). At every appointment you wait and wait. Fortunately the SCF (Southern Charm Factor) keeps you from becoming too impatient. All three kids were VERY good, they seem to take waiting better than the adults.
Sam had a nerve conduction test and an MRI. He was so good at both tests. He has matured and aged a lot over the past year and a half.
Maddie had labs, an echo, a CT Scan and Pulmonary Function Test. Her weight was down and we are hoping to come up with a plan tomorrow on how to address her weight and her diarrhea issue. Her magnesium was low and we need to increase her magnesium supplements. I know I have said it before but it is so frustrating it bears repeating. Diarrhea causes low magnesium and potassium. The supplements cause diarrhea for Maddie. Diarrhea causes low magnesium and potassium. The supplements cause diarrhea for Maddie…………
Friday night Max felt great at the Pistons game. By the time we stopped in West Virginia, he had a fever and felt awful. The poor guy is miserable. We are giving him Tylenol and Advil regularly. Meanwhile, Sam is complaining of a headache and has a stuffy nose. Someday we will get away and everyone will feel well. Right? Maddie is just glad that for once at Duke she isn’t the sickest one.
Tomorrow we will meet with Sue and Dr. Kurtzberg. It will be so good to see them both.
Sometimes I really disappoint myself. I feel like I lean towards the feminist side and then I do things that drive me crazy. It happened when we asked for the Duke basketball. I kicked myself for not asking for one from the women’s team. I was only thinking about the men’s team. I did it again with the Spartans. Go Lady Spartans!
Love,
Jane
Saturday, April 2, 2005 6:29 PM CST
Dear Friends,
We are writing tonight form Beckley, West Virginia. It is snowing!
We just had to update you and tell about last night.
We left after school and went down to Auburn Hills for The Pistons game. We stayed at a hotel so we could head south the next morning. Sam, Maddie and I had a good time hanging out at the hotel and hitting the vending machines. But the real story was taking place a couple of miles away.
When we had the benefit in Stanton, George Blaha and Rick Mahorn donated some tickets for the games that were in the silent auction. George Blaha also gave some extra tickets for Jeff and Max to go to the game and invited them to ‘the bullpen’ to meet some of the players. In addition to Max and Jeff, one of the coordinators for the fundraiser, Penny, was there with her two sons and daughter-in-laws. Penny had an extra ticket, so we invited Uncle Bill.
They had great seats for the game and Max laughed the whole time. Uncle Bill seemed to be the highlight of the game for Max. Max enjoyed all the special activities they do at the palace. The racing donuts, cheerleaders, crazy fans, cheerleaders, free handouts, and the cheerleaders. George had set up to have a man named Dave take care of them while they were at the game. He took them to their seats, brought a jersey for Max and checked on them periodically.
After the game, Mary Blaha took them to the bullpen. They met many of the players and were treated so well. Coach Larry Brown came along and headed straight for Max. He talked with them for a while and then told them to follow him. He took them right into the Piston’s locker room. He even called over players while they were being interviewed by the press to say hi to Max. Jeff was especially impressed by Rasheed Wallace. Then Larry gave Jeff the phone number to his office so they could send Max an autographed ball. Jeff says his hand were shaking the whole time. I think this was Jeff’s Make-a Wish.
George Blaha called today to see if everything went well. Jeff was so impressed by the kindness of George, Dave, Larry Brown, Rasheed, and everyone in the Piston organization. We have written it so many times, but people really are so good. We can’t help but be humbled by the generosity of others.
It was an amazing experience for both Jeff and Max.
Oh yeah, thanks Penny for the Ben Wallace wig for Max, the Big Number 1 hand for Maddie and the ball for Sam. Of course they all wore the wig. Maddie used the finger to pick her nose and Sam has bounced than ball around the hotel room. Needless to say, they loved them.
Have a good night. We’ll update from Duke. GO SPARTANS!!!!
Love,
Jane
Picture above: Max and Jeff with Detroit Piston's coach Larry Brown.
Thursday, March 31, 2005 5:14 AM CST
Dear Friends,
Everything is fine in the Trimper house. Maddie and Sam received their monthly dose of IVIG yesterday afternoon. It is a 2-hour infusion we receive at Greenville Hospital. There really isn’t any new news.
We are leaving tomorrow night for Duke. It is Maddie and Sam’s 18-month post transplant visit. They will have two days packed with testing. Then we will try to have some North Carolina fun and head home. It is Central Montcalm’s spring break. So no one will be missing school.
Friday night Jeff and Max have tickets for the Detroit Pistons. George Blaha sent some tickets for the benefit and some for Jeff and Max. He included a pass to meet some of the team. It will happen after the game. I hope Max is still awake. Rick Mahorn and George Blaha have been so generous. What an experience! We will stay the night near the Palace and leave from there for Duke.
It will be pretty hectic around here for the next couple of days. I will probably update again once we get to Durham. I hope they still like us after MSU beats UNC Saturday night. It doesn’t help that they beat Duke, too.
Love,
Jane
Tuesday, March 29, 2005 5:51 PM CST
Dear Friends,
Jeff and Maddie are doing a puzzle on the floor. She did her reading homework with us and has started her breathing treatment.
Max is looking pretty bright eyed on the couch. He just listened to two stories. He is watching Rocket Power.
Sam is roaming around in camouflage Scooby Doo pajamas with a big plastic tube. He is having a good time and full of energy. He just listened to his reading homework and is hunting for a snack.
Just a Tuesday night in the Trimper house. These are the times for which we are most thankful.
Love,
Jane
Sunday, March 27, 2005 7:11 PM CST
Dear Friends,
Well, well, well. How about those Spartans? This was just an extra bonus on what was already turning out to be a really good weekend.
We had a slow and quiet Saturday. We did have a practice Easter egg hunt outside. We used the golf cart and went riding around looking for eggs. It just doesn’t seem right to be wearing winter coats and hats. We had fun though.
On Sunday, we found out that the Easter Bunny had paid us a visit. He left a treasure hunt for each of the kids using clues in plastic eggs. They each found their basket in an unusual spot and enjoyed the toys and candy. We went to Grandma and Grandpa’s house in Chesaning. We had fun with the cousins but missed Aunt Jill.
Maddie is still coughing. Nothing has really changed. She is still in good spirits and is eating. She is coloring a lot and still doing puzzles.
Max and Sam are still doing well. Max hasn’t had the shakes. They have the day off of school tomorrow for a teacher work day.
We hope you all had a good weekend. Look out UNC!
Love,
Jane
Friday, March 25, 2005 9:00 AM CST
Dear Friends,
We are looking forward to our long weekend together. We hope you all have a fun Easter weekend.
Love,
Jane
Wednesday, March 23, 2005 6:03 PM CST
Dear Friends,
It has been a normal busy week for us. I can’t believe it is already Wednesday night.
Maddie has been doing fine except for the cough. She went to the doctor’s tonight. She was down a pound (boo). Her lungs sounded clear (Hooray). She gave blood and we’ll find out about her labs tomorrow. She has been busy this week with home school, reading and PT. She looks and feels good. She’s just very skinny and coughing.
Max had the mysterious shakes again last night. Dr. Kurtzberg received the DVD we made from the last time. She watched it and thought Max was having a certain type of seizure. She has since spoken with our neurologist here and I think they will be changing Max’s seizure med. We really appreciate her getting involved. Other than that, Max continues to be bright eyed, funny and happy. He has started fighting PT again. He is getting upset a lot. That is never easy for us or the therapists.
Sam is enjoying your 5’s. The other day he was leading a line of other five year olds down the hall. I saw him and thought, “Man, he walks funny.” Just as I was starting to worry, I saw the other kids and they all had the same goofy walk. You can’t blame everything on MLD.
Love,
Jane
Sunday, March 20, 2005 1:54 PM CST
Dear Friends,
As you can see from the new picture, we colored Easter eggs this weekend. Aunt JoJo came over yesterday and brought 52 eggs to dye. Yep, we’ll be eating a lot of egg salad. Joanne watched the kids yesterday while Jeff and I went out with friends. We had a good time and it was good for the kids to be away from us. Thanks, Joanne. Jeff put more good egg pictures in the photo album at the top too.
I think colds have snuck into the house. Maddie is a bit stuffed up and coughing a little. Sam has gooey eyes and is very congested. Max looks good and Jeff and I feel great. Hopefully, it all stays so simple.
We had a little bittersweet moment today. Maddie was on the computer playing I Spy Treasure Hunt. She was really good at it and really enjoying it. It was so good to see. Yet, it brought back memories of Max doing the same thing at that age. He loved that game. It was tugging at my heart a little.
Leave it to Max to make it easier for me. He wanted to go and watch Maddie play. He sat and watched for an hour. He enjoyed watching her. He is a constant reminder that life is life. It is what it is. And it is good. Thank you, God.
Love,
Jane
Friday, March 18, 2005 4:02 PM CST
Dear Friends,
It continues to be a quiet week. We only had one big event.
Jeff and I were sitting on the couch when we heard a noise from outside. We looked out the window and a deer was running along our driveway. We assume he had been hit by a car and was running away from the road. We lost sight of him and wondered what had happened to him.
Jeff peeked out the back door and heard another noise. He looked in the backyard. There was the deer. He was stuck in our pool fence. His front was in the pool area. His rear in the backyard. The poor thing was struggling but stuck.
We made some calls since we had no idea what to do. Our friend Steve let the appropriate people to come. The deer kept struggling, finally broke in and kicked his/her legs a bit and died. Steve called the appropriate and told them not to come.
Our little family of five was standing at the sliding door watching all this happen. Here is what the kids said.
“His butt must be really big.”
“Can we have him for dinner?”
“Should we have a funeral?”
“Too bad it doesn’t have horns. We could have hung him right there.” (Little finger pointing).
You need to see the pictures. Go to view photos at the top.
Other than that, it’s been a busy but good week. All three kids are doing well. Max and Sam got their hair cut. Max was chatting with the stylists. (That was one of his goals – communication). He is doing so well. Maddie continues to look very skinny, but she is happy and doing well. Sam is wild and normal. For all of this, we thank God.
Love,
Jane
Tuesday, March 15, 2005 5:11 PM CST
Dear Friends,
If you had peeked into our window at 5:30, you would have found a family having dinner. It was a really simple one. We had sandwiches. Sam said grace. Max said, “Grace.” Maddie stole Jeff’s spoon. There was a lot of talking and a lot of laughing. Simple dinner. We do it every night. We are so thankful.
Love,
Jane
Sunday, March 13, 2005 7:48 AM CST
Dear Friends,
Things are looking good around here. All three kids have been having a nice relaxing weekend.
Maddie’s lab work was all normal this week. She continues to feel well. She’s been doing puzzles all weekend.
Max had the mysterious ‘shakes’ on Thursday night. They lasted about a half hour. He talked the whole time. He was even laughing at some pitiful jokes we were telling him. We taped the whole thing. We sent a copy to Dr. Kurtzberg and we’ll send a copy to Dr. O’Donnell in Grand Rapids. He was fine the next day and they haven’t happened since.
Sam and I went to Chesaning yesterday with Aunt JoJo. Sam stayed there and played with Grandma while Joanne and I went to Birch Run. Sam had a great time and enjoyed the extra attention.
That is really about it. We thank God for a quiet weekend.
Love,
Jane
Wednesday, March 9, 2005 7:10 PM CST
Dear Friends,
Thanks for all the nice comments about the list. I am sure it is more than you ever want to know about the Trimpers.
We have actually had a pretty healthy week (so far). Maddie is in very good spirits and is enjoying reading. She is trying to play catch up but is working hard and liking books. I took her to our salon yesterday for a haircut. She was the only customer and enjoyed doing something ‘normal’. Michele, our friend and stylist, did a great job making her hair more even and neat. She looks great. Maddie also went to the doctors tonight. Her weight was just a wee bit up and her lungs sounded good. For us, that is one awesome check-up. Thank you, God. She went and had her labs drawn. We will know more about those tomorrow. We are hoping her magnesium and potassium are up so we can cut back on her supplements.
Max is working hard at school. On Monday morning he woke up and said, “Kick MLD.” Those were the first words out of his beautiful mouth.
Sam is loving school. You would never know he had a transplant. We will continue to work on his balance issues. I think Sam will be our most social child. He longs for people to play with. He is very anxious for Maddie’s immune system to reach normal level so he can have friends over.
That’s really about it. We are so thankful for how well all three kids are today.
Love,
Jane
Sunday, March 6, 2005 2:33 PM CST
Dear Friends,
Things are quiet here. Everybody is doing well. It was a nice weekend. I thought I’d try a different style for today.
20 Things You (Maybe) Don’t Know About the Trimpers!
1. We have three different kinds of milk in our refrigerator. Whole for Sam and Max. Skim for me and Jeff. Soy for Maddie. Her digestive system is still damaged and we aren’t giving her milk products.
2. I read magazines like People, US and Star not Time and Newsweek.
3. Maddie takes 12 pills a day, 6 doses of liquid meds and 5 doses of inhaler meds.
4. Not every day is easy. Some days memories flood in and those are harder days. We are always appreciative of today but remember the ease of the past.
5. Recently, Sam has stopped calling me mom. I am now Jane, Janie or my personal favorite- “Hey there, Gorgeous.”
6. Max’s new goals for all of his therapists, teachers and parents are: building trunk strength, eating independently and communicating more.
7. We are more at ease in the old part of our house than the new addition.
8. We don’t know what we would do without Dad, Kari and Aunt JoJo and our whole families.
9. Jeff is addicted to home improvement (not the show).
10. Okay, I also watch General Hospital.
11. We have really appreciated how our friends from high school and college have entered our life again. How do we ever lose touch with such good friends?
12. We have a new understanding of others’ pain.
13. A pregnant woman or a newborn baby brings us great joy. Especially Naomi.
14. Max is amazing.
15. Maddie is amazing.
16. Sam is amazing.
17. We thank God many many times a day - when Max laughs, when Maddie reads, when Sam calls me Jane.
18. The CaringBridge readers and guestbook entries have provided us with a lot of strength.
19. Max will walk and run again .
20. We will never be the same.
Have a great day.
Love,
Jane
Friday, March 4, 2005 5:55 AM CST
Dear Friends,
I am going to make this another short entry. Everything really is steady here. Maddie has avoided the virus so far. We are very thankful for that. Max and Sam are feeling well and busy with school.
We will spend spring break at Duke. Sam and Maddie will have their 18-month check-up. That will take place the first week of April.
We have much to be thankful for. We are also remembering our friends we met on the way who are having a much more difficult February and March.
Love,
Jane
Tuesday, March 1, 2005 8:03 AM CST
Dear Friends,
Nothing new to report. Thanks you, God. Maddie has continued to avoid the virus we have passed around the house. Max is looking perkier than he has in a long time. Sam is Sam.
Today is a snow day. It is beautiful outside and we always enjoy the extra time at home.
If we can get the golf cart out, we’ll try some sledding today. Spring is on its way. Isn’t it??
Love,
Jane
Sunday, February 27, 2005 7:31 AM CST
Dear Friends,
Although you can still hear coughing throughout the house, it looks like we are on the mend. At this point we are just trying to get rid of congestion. Maddie has avoided most of this so far. We are very thankful for that.
We are very anxious for spring. We are ready to play outside, open windows and put the snowpants away.
We are working at putting together the next Fellowship newsletter. It takes a while. Thanks for your patience. Some people have started to ask us about the second round of donations. You can pay anytime but we aren’t in immediate need. We are hoping to start the second round of donations in May. We'll get updates from Dr. Escolar, Dr. Kurtzberg, and the fellows.
We hope you are all enjoying the cold sunshine.
Love,
Jane
Thursday, February 24, 2005 5:16 PM CST
Dear Friends,
Oh, Boy! Has anyone ever felt like they didn’t really have time to be sick? I’ve only been sick three times in my teaching career. (Not counting the one day stuff) The first was strep throat when I was in North Branch. The second was pneumonia when Sam was about 8 months old. Now this. I don’t have a name for this one but it really kicked me in the fanny.
Jeff has been doing EVERYTHING. He has been giving bathes, feeding kids, doing meds, putting kids to bed, etc. He quarantined me from the kids to protect Maddie. He really is a good dad.
Okay. Enough about all that. Maddie is still healthy. She went to the doctors last night. No crackle in her lungs. We haven’t heard about her blood work. She and Sam also received IVIG, a monthly infusion they get to help immune functions.
Max went back to school on Tuesday. He is pretty congested. He actually fell asleep at school on Wednesday. He really looks pretty good though.
When you lay in bed for a few days, you have lots of time to think. Sometimes coherently, sometimes not. I did think a lot about our friends we met along the way who lost their children. I dreamt about them. Prayed for them.
It also occurred to me how much better Max handled this whole virus thing than me. That child really is a tough guy.
It also made me think a lot about many things that have happened to us. I thought about how we take for granted when a crisis is avoided. How many munificent acts of God do we never realize? I thought back to Max’s shakes. We still don’t know what they were. It caused us to double his Keppra. If we hadn’t doubled it a few weeks ago, would Max have had seizures last week when he had a fever? The shakes prepared us for last week. They haven’t happened since. Max was absolutely right in his prayer a couple of weeks ago. Thank you, God for the shakes.
Love,
Jane
Alright, yes, I used the thesaurus for municifent. It was my first time. (Yeah, I’m kinda proud) I could not find the right adjective there. Anyone got a good one?
Tuesday, February 22, 2005 7:40 PM CST
Hello.
Well, things are going. Jane is still in bed. She's in rough shape. I hope she's sees a doctor tomorrow. I'm trying to keep the kids away from here as much as possible. They said good night to her thru the door. Max is still a bit tired. It will take him a while to get back into things. He's eating pretty good and back at therapy and school. Maddie is hanging in there. Her spirits and health are good. A little cough now and then. We need to keep her healthy! Sam is also feeling good. He wakes with a bit of a cough and sore throat, but it seems to go away. Drainage probably. So, we're plugging away.
Please keep Anthony and his family in your thoughts and prayers. Things seem to be slowly improving for Anthony.
http://www3.caringbridge.org/nj/anthonyt/
Jeff
Also, it's time to start thinking about year two for the fellows. We'll be starting soon. We'll have more info from the past year and what's ahead for the next year.
Sunday, February 20, 2005 12:02 AM CST
Please pray for Anthony Tomaino. He is in ICU right now.
Hello.
I’m taking over for today. Jane is down in bed with head, throat and nose problems. Max continues to feel bad. He has a fever on and off. He lost his dinner last night and is in bed with Jane today. Maddie is doing pretty good. We are keeping her in the other part of the house away from the sick ones. She’s fine if we just keep feeding her Big Macs and new puzzles every now and then. Sam has a little cough and sore throat. But he seems to be feeling fine. He’s been a good help keeping busy and staying away from Maddie. Thanks to my “healthy” habits and lifestyle, I’m the only one without anything (for now). “How to Stay Healthy, By Fitness Freak Jeff Trimper” video will be out soon. So, the snow is coming down hard and we’re just going to stay in again and try to get rid of all this crap. We’ll be watching for the Hendrick’s Motor Team in today’s big race. Have a good week.
Jeff
Saturday, February 19, 2005 10:53 AM CST
Dear Friends,
There really isn’t anything new here. Max still isn’t feeling the best. His fever is gone but he is very congested. When Max has a cold, it really wipes him out. Even though he is not feeling the best, he continues to find time to be a smart alec. Last night, I kept hovering over him at bedtime. Are you too warm? Do you need water? I believe his exact words were, “Take a hike.”
Sue, our nurse practitioner from Duke, wrote me an email and told me that Maddie’s xray was fine. I guess there wasn’t any pneumonia. They are holding off on the antibiotic. She is still coughing a little but acts fine and is doing 500 piece puzzles like a madwoman.
Officer Sam is chasing Kipppy, the criminal dog around the family room right now trying to arrest her. He is calling for Officer Jane so I better help.
Have a good weekend.
Love,
Jane
Thursday, February 17, 2005 4:12 PM CST
Dear Friends,
We are still a sick household. Max continues to run a fever. He is also coughing some. I took him to the doctor and they did a swab to check for the flu. It is more out of concern for Max than Maddie. He is handling his illness like a somewhat normal nine year old. I stayed home again with him today. I tell myself that a boy needs him mom but in reality I just feel the need to be close to him when he isn’t feeling well.
Maddie had her check-up at the doctor’s yesterday. Her labs all looked good. Her potassium and magnesium were both normal. The doctor did here a ‘crackling’ in her lungs. They did an xray. There is a small amount of pneumonia in her right lung. They put her back on an antibiotic and of course, she is doing the breathing treatments. We have been doing those anyway. Hopefully, this will all stay simple.
Sam has discovered the computer. He is having a good time on toondisney.com. He is changing so fast.
We hope you all have a great weekend.
Love,
Jane
Wednesday, February 16, 2005 7:18 AM CST
Dear Friends,
Sorry for the late update. It has been a little chaotic around here. Maddie said to me this morning, “Why doesn’t anything happen like we planned?”
Monday’s school was cancelled, We had a nice day at home. We didn’t get much done on Sunday. It was a relief to have a catch-up day. I actually got all the laundry put away. That is nothing short of a miracle.
Tuesday, we had some babysitting switches. Penny Barber watched Maddie in the morning and Kari cam over later in the afternoon. Maddie had a great time and is getting better about accepting new situations.
After school yesterday, Max was very lethargic. He could hardly keep his head up. Our minds immediately go into brainstorm mode: Has he had a seizure? Is he going to have a seizure? Does he have the flu? By the time we got home he had a low fever. Some Tylenol helped. This morning he was 102 degrees. He is home from school today, taking Tylenol and watching TV. I also took the day off. When Max is sick we feel like we need to always be watching him in case of seizures. Whatever, this virus is I think it explains his shakes. We will see. One night while we were saying our prayers last week, Max threw in at the end, “Thank you for the shakes.” I have to assume Max knows what he is talking about.
Sam is at school this morning celebrating Valentine’s Day with his class. He is feeling like a big boy.
Maddie is starting to get a runny nose and was coughing some last night. Please pray for this to stay simple and that she doesn't catch what Max has. And also for Max – not only for the fever to go away but for 100% healing. Thanks.
Love,
Jane
Sunday, February 13, 2005 2:13 PM CST
Dear Friends,
Okay. Here is the longer version about the fundraiser. Before I get to that, let me take care of a Maddie update. Sue, our Duke nurse practitioner, emailed us Friday. So far the endoscopy that Maddie had hasn’t shown anything. There is another person who will study it next week and a couple of tests to come back, but as of now, nothing is there to treat.
We took Maddie up to the fundraiser early in the day before the crowds arrived so she could see all the baskets, the ’50 stuff and wear her poodle skirt. I just watched her walking around and really thought that was the healthiest I have seen her in a long while. She enjoyed seeing everything and thanks to Greg Millard left with a huge dog and a baby dog. She loved them.
This was the first year we had really experienced the set-up and could help the very small amount we did. Penny and Tammy did an excellent job spear-heading the event and everything looked terrific.
There were a lot of people who came and ate hot dogs, roamed around, hoola hoped, danced, bid on baskets and tried their luck at the mini raffles. There were 5 of my boys from school there and I really enjoyed seeing them. One of the boys from Jeff’s class even bought one of Max’s SpongeBob baskets. There were friends from Chesaning, Charlevoix, Grand Rapids, Lansing, …… The McIntyres came from London Ontario (Bethany’s Hope) and the Osmars came from DeWitt. Their son Patrick is 12 years post transplant and they brought their daughter Adrianne who was Patrick’s donor. Sorry if I spelled Adrianne wrong. It was also nice to be able to introduce Carolyn Wyman and Anna Sisson. We didn’t get the opportunity to introduce Ron Springsteen but we were happy that we were able to meet him and get a chance to talk.
Elvis played DJ on the stage. He was excellent. Thanks Michael. Patty R. did another wonderful job as emcee for the event. Janet and Becky were wild and fun as the soda fountain girls.
It was good night to feel community spirit and the generosity of others. Overall, about $20,000 was raised. We will find the right way to use the money to help advance research into MLD.
TV 8, Greenville Daily News and the Grand Rapids Press were there to cover the event. The news clip on TV 8 was on last night. Our favorite parts were Sam hoola hooping and our friend Scott eating a big ole foot long hotdog.
We still have a HUGE TV (Thanks, Greg) that will be raffled off on May 15th. Tickets are coming soon and will cost $5. We kicked off the raffle on Saturday. They are collecting names and addresses and the number of tickets you would like. Let us know if you are interested and we’ll let the right people know.
Oh yeah, I did go with the poodle skirt. I looked ridiculous and am so glad I was an ‘80’s girl and not a ‘50’s girl. I just can’t pull off the look.
Love,
Jane
Saturday, February 12, 2005 8:39 PM CST
Dear Friends,
We are tired and ready for bed but had to let you know about the fundraiser. I’ll make it brief and write more tomorrow.
There were lots of people and lots of fun. The ‘50’s theme was a great idea. We had friends from Charlevoix, Chesaning, and beyond. This community is really the best.
We were honored with the presence of Carolyn Wyman, Ron Springsteen and Anna Sisson. The McIntyres (Bethany’s Hope) came from London, Ontario and the Osmars came from DeWitt. Both are MLD families and we really appreciated them making the trip.
It is overwhelming. We feel loved, blessed and full of hope.
Thanks friends,
Jane
Thursday, February 10, 2005 5:57 PM CST
Hello.
We made it back to Stanton about 10:30 pm. Long day. We didn’t have plans on driving all the way, but we got on a roll and Maddie wanted to go for it. We had heavy rain on and off. Then, as we hit Michigan, we had rain, freezing rain, then snow. Only in Michigan. But it’s good to be back. The visit went well. We met with Dr. Kurtzberg on Monday. She thought Maddie looked good. Whew. Then test for two busy days CT scans, blood work... We ended our visit with an endoscopy (both ends) and a meeting with Dr. K. It’s always hard seeing the kids go under. Great people, but you always know something can go wrong. Maddie came out of it in a pretty good mood. She even has color pictures! We won’t be showing them on the website, sorry. Things “looked” good and we’re waiting for more test results. She was very happy to see the boys today. I think Max is REALLY happy to have her back. She has been entertaining him all evening.
Anyway, it’s good to be home.
Jeff
See you at the fundraiser!! Saturday, February 12th. 3:00-7:00! Rockin’ ‘50’s!! Central Montcalm Upper Elementary
1488 S. Sheridan Rd. Stanton, MI
(Use the same drive as the High School, but keep going straight on the driveway to the Upper Elementary)
Wednesday, February 9, 2005 5:25 PM CST
Dear Friends,
Maddie, Jeff and Don left Durham today. I am not sure when they will be home. It will be either very late tonight or tomorrow. Everything went well. Maddie had her scope yesterday. Her direct quote was, “Mom, they took pictures of my butt.” It will take a couple of days to get the results. Dr. Kurtzberg didn’t seem too concerned. Worst case scenarios are an infection, GVH or EBV – all treatable at home. Better scenario: The meds she has taken/is taking have left her with some sore spots and she need time to heal. Everything else went well. I know they were very happy to see Dr. Kurtzberg and Sue.
Max is the same. I am giving him the new med at night. It relaxes the central nervous system. He is handling it all well.
Our physical therapist came to work with the kids this afternoon. She brought 4 baskets for the fund raiser. One from her, one from her friend, her friend’s mom, and one from our physical therapist that we had last year. Boy! God has surrounded us with such special people.
My biggest dilemma right now is should I go with the rolled up jeans or the poodle skirt on Saturday. Can you even believe that is my biggest dilemma??
Love,
Jane
See you at the fundraiser!! Saturday, February 12th. 3:00-7:00! Rockin’ ‘50’s!! Cental Montcalm Upper Elementary
1488 S. Sheridan Rd. Stanton, MI
(Use the same drive as the High School, but keep going straight on the driveway to the Upper Elementary)
Monday, February 7, 2005 5:32 PM CST
Dear Friends,
It was a busy weekend. Max continued to have the shakes on Saturday night and again first thing Sunday morning. I took him to our local walk-in clinic. They checked his blood work, urine, throat and ears. One is ear was very mildly pink. Everything else checked out as fine. They called the neurologist on call in Grand Rapids. They didn’t think it was seizures and put him on a med for two days that relaxes him. Boy, did it relax him. He slept very well last night. He was pretty out of it at school today. They also put him on an antibiotic for the ear. I am hoping the shaking thing is over but we will see.
Maddie, Jeff and Grandpa had a busy day. They met with Dr. Kurtzberg this morning. Dr. Kurtzberg thought she looked good. They gave blood and had a CT Scan. Her potassium was high. (Can you believe it??) and her magnesium was low. They received a mag infusion and are preparing for the scope tomorrow. She couldn’t eat all day. I don’t know how they did it.
I don’t write much about Sam. He is doing great. He is fun, energetic and entertaining. He did say yesterday, “I wish I could get seizures so I could get some attention.” That pretty much sums it up.
We are getting ready for Saturday’s fundraiser. Max put together two SpongeBob baskets. The kids also painted pictures and I framed them for the silent auction. We have baskets from Hunter’s Hope and Hendricks Motor Sports sitting on our counter. Two of our therapists have put together baskets. Another of our therapists told her friends about MLD and the research we are working on. No matter how Saturday turns out or how much money is raised, it continues to be humbling and awe-inspiring seeing how generous and kind people are. The world is good. -And so is God. See the email below.
Love,
Jane
Dear Jane and Jeff;
I had such a remarkable experience last Sunday I
wanted to share it with you. I am still teaching
Upper Elementary Worship Center at the church. This
year Denise Thornburg and I are a team. We asked our
class to think of something they would like to see in
a basket at the fundraiser. The first idea was for a
Nintendo DS ($150.00). Denise suggested we put on a
hot dog lunch for the church to earn funds. Sounded
like a good idea, only hitch was neither of us had any
experience cooking up something for this large a
group.
Kevin Fike’s advice was to get 200 hotdogs.
Save-a-lot agreed to let me bring back any unopened
packages. I procured chips, hotdogs, and all the
trimmings, along with three dozen frozen bread rolls
for ham and turkey sandwiches in case a hotdog didn’t
appeal to some in the congregation.
Sunday morning we gathered the class in the kitchen.
Chris Swanson, Liz Thornburg, Austin Hanlein, Brandon
Miller, William Arwood, Jenny Fike and their two
anxious leaders.
We prayed for God’s guidance as we prepared the meal
and as we shopped for our treasures. That He would
keep us aware of Max, Maddie and Sam and He would
continue to hold them in his hands.
The kids had plenty of questions about MLD and I did
my best to help them understand why our effort was so
important and why God’s hand on ours is so important.
Once church was over, the next hour was a blur. We
started with just over 100 hotdogs cooked and in the
bun so the line would move quickly. The kids were so
helpful but the anxiety was high. I remember Denise
cooking up more hotdogs a couple times and when all
were fed, there were less than a small plate of
sandwich buns left and one lonely hotdog in the
roaster! We had collected $387.00! I am convinced
that by divine intervention, God let there be one
hotdog left so we knew everyone had all they wanted.
Praise God!
Our first stop was Radio Shack; they sold us three
Zip-Zaps cars, the tool kit, a Booster motor set and
carrying case for less than cost! Basket #1.
On to Miejer, we got the Nintendo DS, two games and a
carrying case! Basket #2.
The kids then picked out two handheld video games and
a Simpson’s Clue game. Basket #3!
Next they voted for a candy basket. We just grabbed a
variety of Valentine candies including an Elvis Tin
Heart, and a Teddy Bear Valentine Puppet Basket # 4!
On to the check out, Denise and I were dragging; of
course the class had energy to spare. We had been
keeping a tally in our heads; I was dazed when the
total came up we had less than 25 cents left over!
GOD’S HAND GUIDED US ALL THE WAY!
I’m sure He has His on your home just as much as it
was demonstrated to me last Sunday. God bless you
all, see you on the twelfth Linda Swanson
Saturday, February 5, 2005 8:09 PM CST
Dear Friends,
We started the day with a photo shoot for the Grand Rapids Press. They are going to run an article on the fundraiser that is being held next Saturday. The photographer was a nice young woman who had grown up in Montabella. She just hung out with us for an hour and took pictures of the kids. The article is going to run next Monday or Tuesday (I think).
Maddie, Jeff and Don left for North Carolina at 10:15 am. We missed them immediately. They made it as far as Beckley, West Virginia. That will give them a short drive tomorrow. Traffic was light. Don’s right foot was heavy. They only had one small visit with local authorities. I guess we know where Jeff gets it. We do thank God for getting them to Beckley safely.
Sam, Max, JoJo and I went to the Carrolls for Jackson’s fifth birthday party. We had a good time. Max especially laughed a lot. I can’t believe our two baby boys are already five.
Max was acting a little funny at the end of the party. When we got home, he had the big shakes again. He was coherent and talking with us the entire time. I gave him the valium and he relaxed. I have to assume these are seizures. I am going to try to get him into the pediatrician on Monday to be thoroughly examined. He could have something ‘normal’ wrong that is causing the seizures. One of the very hardest things about the past two years are the medical decisions we make. The responsibility is overwhelming. I just continue to reassure myself that God is in charge and will provide me with the decisions I need to make. I guess it goes back to the old line “I wish he didn’t trust me so much.”
We are tucking in for the night. I hope you are all having a nice, almost spring like, weekend.
Love,
Jane
Thursday, February 3, 2005 7:46 PM CST
Dear Friends,
Everything is really pretty much the same here. Maddie, Jeff and Grandpa are planning their trip to Duke. They will leave this weekend.
Max gets Botox tomorrow.
There really isn’t much more to tell. Please pray for effective Botox shots for Max and a safe trip with good results for Maddie, Jeff and Don. We will keep you updated.
Don’t forget about the fundraiser on February 12th.
Love,
Jane
*Jeff and I will say a few words and show a quick Imovie at 4:45 during the fund raiser. If you’d like to see a quick movie full of pictures of the past two years, we’ll see you there. The whole thing will only take 10 minutes.
To see the actual flyer for the fundraiser, click on the link below.
On Saturday, February 12th, the Third annual Kick MLD in the Butt Fundraiser will take place in Stanton. It is going to have a 50’s theme. It will be from 3:00 pm until 7:00 pm.
There will be many activities:
Root beer sodas and hot dogs
Elvis Look-Alike contest
Hoola Hoop and Limbo contests
50’s Trivia
50’s Music and Entertainment
Mini Drawings
There will be a silent auction with many theme baskets:
Children’s baskets
Family Game Night
Hunter’s Hope
Gummer Peat Gardening Package
Party Lite Gift basket
Duke signed basketball
Rick Mahorn Autographed basketball
Sportboat Fishing Charters (1/2 day)
West Michigan Whitecaps Package
Autographed Kasey Kahne Calendar, Rookie of the Year picture and framed mini-poster
A basket from Hendrick’s Motor Sports
And many, many, more
Please mark the day on your calendar. Come join the fun. Maddie, Sam, Max, and lots of other MLD kids and adults appreciate all you have done for them. Central Montcalm area, Chesaning and Charlevoix have all done incredible things for our family and the MLD cause. Our fellowship partners have been amazing. The war we have waged against MLD isn’t over.
We are going for it all - 100 percent.
Tuesday, February 1, 2005 6:28 PM CST
Dear Friends,
We are really pretty much the same here. Maddie continues to have problems but I am hoping she is on the right track. They are planning an endoscopy for next week when she and Jeff are at Duke. According to Dr. Kurtzberg, this will tell if there is infection or GVH.
Max is continuing to adjust to the double Keppra for seizures. It takes a while to get used to it. He seemed less tired today than he has during the past week.
We are getting excited about the February 12th fundraiser. We are officially inviting all of our website guests. Carolyn Wyman and Anna Sisson, it is time you met your many fans.
Love,
Jane
*Jeff and I will say a few words and show a quick Imovie at 4:45 during the fund raiser. If you’d like to see a quick movie full of pictures of the past two years, we’ll see you there. The whole thing will only take 10 minutes.
To see the actual flyer for the fundraiser, click on the link below.
On Saturday, February 12th, the Third annual Kick MLD in the Butt Fundraiser will take place in Stanton. It is going to have a 50’s theme. It will be from 3:00 pm until 7:00 pm.
There will be many activities:
Root beer sodas and hot dogs
Elvis Look-Alike contest
Hoola Hoop and Limbo contests
50’s Trivia
50’s Music and Entertainment
Mini Drawings
There will be a silent auction with many theme baskets:
Children’s baskets
Family Game Night
Hunter’s Hope
Gummer Peat Gardening Package
Party Lite Gift basket
Duke signed basketball
Rick Mahorn Autographed basketball
Sportboat Fishing Charters (1/2 day)
West Michigan Whitecaps Package
Autographed Kasey Kahne Calendar, Rookie of the Year picture and framed mini-poster
A basket from Hendrick’s Motor Sports
And many, many, more
Please mark the day on your calendar. Come join the fun. Maddie, Sam, Max, and lots of other MLD kids and adults appreciate all you have done for them. Central Montcalm area, Chesaning and Charlevoix have all done incredible things for our family and the MLD cause. Our fellowship partners have been amazing. The war we have waged against MLD isn’t over.
We are going for it all - 100 percent.
Sunday, January 30, 2005 7:13 PM CST
Dear Friends,
It was a nice and quiet weekend. We had a very lazy Saturday. This morning we went shopping and got Valentines for school parties. The rest of the day was pretty relaxed.
Max has been extra tired. He is still on the higher dose of seizure medicine and it really wipes him out. Tomorrow he goes to the orthopedic surgeon to have his back checked.
Maddie continues to battle low potassium. She has also had dhiarhea for a lllloooonnnnggg time and we are really weary of it. Her weight was back down to 41 pounds last Wednesday and I am really hoping she isn’t any lower this week. We have always prayed for healing for all three kids but we are praying extra hard for Maddie right now.
Sam kept busy all weekend and continues to feel well.
That really is about it. Jeff and Maddie head to Duke next weekend. They told us in December we would need to come back for follow-up. Hopefully it will be just for four days.
Love,
Jane
Thursday, January 27, 2005 7:25 PM CST
Dear Friends,
Sorry we didn’t update. We have been a little busier than normal.
I’ll break it down by kid.
Max: Max had a little bit of an episode two nights ago. He started shaking all over. It went from his head all the way down his legs. We weren’t sure if it was muscle spasms or a seizure. He was coherent the whole time talking with us. We ended up giving him his valium that was given in case of seizure. We figured either way – muscle spasms or seizures- it would help. It did. We aren’t sure what exactly is going on with his body. He may be fighting a virus?? He may be out growing his Keppra dose?? Other than that episode, he is doing well. He was walking with is walker at school today with the physical therapist. My class saw him and was rooting him on. It was really neat to see. Max really liked it and the kids had such genuine interest in how he was doing.
Sam: Sam likes going to school. He likes his days at home too. He is starting to head to his class in the morning and doesn’t need us to take him anymore. Mr. Independent.
Maddie: Maddie’s potassium was low yesterday. We increased her supplements. She had it tested again today. It was only a little better. She will have it tested again tomorrow. She still isn’t throwing up.
That is really about it. Throw in some parent teacher conferences, hair cut, etc and that’s been out week.
Love,
Jane
*Jeff and I will say a few words and show a quick Imovie at 5:00 during the fund raiser. If you’d like to see a quick movie full of pictures of the past two years, we’ll see you there. The whole thing will only take 10 minutes.
To see the actual flyer for the fundraiser, click on the link below.
On Saturday, February 12th, the Third annual Kick MLD in the Butt Fundraiser will take place in Stanton. It is going to have a 50’s theme. It will be from 3:00 pm until 7:00 pm.
There will be many activities:
Root beer sodas and hot dogs
Elvis Look-Alike contest
Hoola Hoop and Limbo contests
50’s Trivia
50’s Music and Entertainment
Mini Drawings
There will be a silent auction with many theme baskets:
Children’s baskets
Family Game Night
Hunter’s Hope
Gummer Peat Gardening Package
Party Lite Gift basket
Duke signed basketball
Rick Mahorn Autographed basketball
Sportboat Fishing Charters (1/2 day)
West Michigan Whitecaps Package
Autographed Kasey Kahne Calendar, Rookie of the Year picture and framed mini-poster
A basket from Hendrick’s Motor Sports
And many, many, more
Please mark the day on your calendar. Come join the fun. Maddie, Sam, Max, and lots of other MLD kids and adults appreciate all you have done for them. Central Montcalm area, Chesaning and Charlevoix have all done incredible things for our family and the MLD cause. Our fellowship partners have been amazing. The war we have waged against MLD isn’t over.
We are going for it all - 100 percent.
Monday, January 24, 2005 4:24 PM CST
Dear Friends,
Everything is looking pretty good here right now. Maddie continues to do well. I have heard her giggle more in the past week than I have in a long time.
Max has had pretty high tone recently. His poor legs are really showing it. He gets Botox in a couple of weeks and that should help.
Sam is keeping busy with Legos and school. He has a good time wherever he is.
Last night, our friends were on Extreme Makeover – Home Edition. It was good to see them and their home was just beautiful. Dr. Kurtzberg even made an appearance. They also mentioned Hunter’s Hope, the Krabbe organization that Jeff and I visited in the summer of 2003. The whole show was great.
Love,
Jane
*Jeff and I will say a few words and show a quick Imovie at 5:00 during the fund raiser. If you’d like to see a quick movie full of pictures of the past two years, we’ll see you there. The whole thing will only take 10 minutes.
To see the actual flyer for the fundraiser, click on the link below.
On Saturday, February 12th, the Third annual Kick MLD in the Butt Fundraiser will take place in Stanton. It is going to have a 50’s theme. It will be from 3:00 pm until 7:00 pm.
There will be many activities:
Root beer sodas and hot dogs
Elvis Look-Alike contest
Hoola Hoop and Limbo contests
50’s Trivia
50’s Music and Entertainment
Mini Drawings
There will be a silent auction with many theme baskets:
Children’s baskets
Family Game Night
Hunter’s Hope
Gummer Peat Gardening Package
Party Lite Gift basket
Duke signed basketball
Rick Mahorn Autographed basketball
Sportboat Fishing Charters (1/2 day)
West Michigan Whitecaps Package
Autographed Kasey Kahne Calendar, Rookie of the Year picture and framed mini-poster
A basket from Hendrick’s Motor Sports
And many, many, more
Please mark the day on your calendar. Come join the fun. Maddie, Sam, Max, and lots of other MLD kids and adults appreciate all you have done for them. Central Montcalm area, Chesaning and Charlevoix have all done incredible things for our family and the MLD cause. Our fellowship partners have been amazing. The war we have waged against MLD isn’t over.
We are going for it all - 100 percent.
Saturday, January 22, 2005 6:49 AM CST
Dear Friends,
I’m a little late on this one. Everything has really remained the same. Maddie’s lab work showed low magnesium and potassium. I blame this on the throwing up. She’s taking supplements and I suspect it will be better next week. She has now been ‘vomit-free’ for FIVE days.
Sam and Max had a good week. Sam is really enjoying his Young 5’s class. Max tells us each day is a good day at school. Both boys are stingy with details. I have to interrogate them each night to find out things about their day.
Linda, those multi colored bowl like things are stepping stones. Aunt JoJo introduced us to them. They pile up on a metal rod for storage. You take them apart and create a path. Then you step from stone to stone. This is particularly good for Sam – working on balance.
Sunday night: Extreme Home Make Over. Please tune in to see Jhyrve and family.
Also, please mark the MLD fund-raiser on your calendar. Saturday, February 12th 3:00-7:00. Jeff and I will be saying a few words. We have also made a short I-movie with pictures from our past two years. I’ll let you know what time it will be shown. Come and join the fun for a worthy cause.
Love,
Jane
To see the actual flyer for the fundraiser, click on the link below.
On Saturday, February 12th, the Third annual Kick MLD in the Butt Fundraiser will take place in Stanton. It is going to have a 50’s theme. It will be from 3:00 pm until 7:00 pm.
There will be many activities:
Root beer sodas and hot dogs
Elvis Look-Alike contest
Hoola Hoop and Limbo contests
50’s Trivia
50’s Music and Entertainment
Mini Drawings
There will be a silent auction with many theme baskets:
Children’s baskets
Family Game Night
Hunter’s Hope
Gummer Peat Gardening Package
Party Lite Gift basket
Duke signed basketball
Rick Mahorn Autographed basketball
Sportboat Fishing Charters (1/2 day)
West Michigan Whitecaps Package
Autographed Kasey Kahne Calendar, Rookie of the Year picture and framed mini-poster
A basket from Hendrick’s Motor Sports
And many, many, more
Please mark the day on your calendar. Come join the fun. Maddie, Sam, Max, and lots of other MLD kids and adults appreciate all you have done for them. Central Montcalm area, Chesaning and Charlevoix have all done incredible things for our family and the MLD cause. Our fellowship partners have been amazing. The war we have waged against MLD isn’t over.
We are going for it all - 100 percent.
Wednesday, January 19, 2005 7:59 PM CST
Dear Friends,
Everything is pretty much the same. Maddie has been feeling better the past three days but tonight has a stomach ache. She went to the doctor’s today and is up to 43 pounds. That was really nice news.
I did want to mention that while in Durham we met a young lady with Krabbe (another leukodystrophy) and her mother. They are such neat people. They were chosen to have their home redone by Extreme Makeover- Home Edition. The show will air this Sunday on ABC. We can’t wait to watch it. Not only are we thrilled for Jhyrv'e and Karen, but it will be lovely to hear the word leukodystrophy on national television.
We hope you are all having a good week. Brrrrrrr.
Love,
Jane
Monday, January 17, 2005 7:29 PM CST
Dear Friends,
We have had two days of celebrations. On Sunday, we celebrated Max’s two-year transplant anniversary. We had banana splits at night and spoke often to Max about how proud we are of him. He is a hero in so many ways.
It seems to me, we pray so hard for miracles. I can’t help but feel that miracles are all around us. The fact that these new cells went into Max and halted his disease is miraculous. The fact that God gave people the knowledge to do this is humbling. We thank God for how well all three kids are doing each and every day not just on an anniversary.
Today was Maddie’s seventh birthday. For me, I thought often of the day she was born. I am so glad she is mine. She is feisty, fun, stubborn, smart and a shopper – all I would want in a daughter. For Jeff, he thought about where she would be if she hadn’t been transplanted. Again, we thank God for the miracle.
Maddie felt well enough to have some fun. Her immune system is low so her party was simple. The five of us and Aunt Joanne. She laughed and smiled a lot. She loved her gifts. Joanne got her a bike and she rode it around the living room. Sam and Max were happy to watch her open her gifts. Sam asked for all the same things on his birthday. I find it hard to believe that six months from now he will still want American Girl doll clothes??? Max just laughed at both of them and enjoyed every minute – especially the cake.
Tonight there was a feeling of joy. You know that feeling where your inside is all happy and hard to contain. The tears are on the edge. Gratitude and relief were ever present and the joy just felt soooo good.
Love,
Jane
Saturday, January 15, 2005 1:36 PM CST
Dear Friends,
I am just going to give a quick update on each one of the kids. I know I don’t update enough about Max and Sam.
Max: Max is still getting 4 hours of physical therapy, 4 hours of occupational therapy and 1 hour of speech a week through our health insurance. He gets additional time with the school’s PT, OT and speech. He is working hard. He doesn’t complain as much anymore. I think the main area he needs to work on is strength – especially in his trunk. He isn’t walking on his own but continues to walk with a walker and much assistance. He is also still getting the Botox in his legs and will get a new batch on February 4th. He is using his hands a little bit more at home. He can feed himself finger food but needs help with a fork and spoon. His speech is speeding up a little bit although other people find him hard to understand. He continues to be very happy.
Sam: Sam is getting 4 half hours of physical therapy a week. His problem is balance but his strength is good. You would never guess Sam has had a transplant or has MLD. He functions as a normal five year old boy who has been very spoiled for the past two years. He loves school – especially the social aspects of it (recess, lunch..). He is very curious.
Maddie: She is very thin. She is only 41 pounds. She was 50 at the time of transplant 15 months ago. She is eating okay – small amounts often. She is still throwing up every couple of days. She is very weak and has physical therapy 4 half hours a week. She doesn’t like it at all. Her therapy is the opposite of Sam’s. Her balance is good and her strength is weak. She has happy moments but also has her down ones. There are times that I worry we have broken her spirit. That is a common concern among transplant parents. She will turn seven on Monday. I hope she feels really well and enjoys the day. She does not have a normal immune system yet. We don’t know if she will be able to go to school this year at all. We just keep telling her that it is going to get better and she will feel well someday. Although she looks like she has had a transplant, she shows no signs of MLD.
We are thankful to God for where we are today. We continue to pray for 100% for all three kids.
Love,
Jane
To see the actual flyer for the fundraiser, click on the link below.
On Saturday, February 12th, the Third annual Kick MLD in the Butt Fundraiser will take place in Stanton. It is going to have a 50’s theme. It will be from 3:00 pm until 7:00 pm.
There will be many activities:
Root beer sodas and hot dogs
Elvis Look-Alike contest
Hoola Hoop and Limbo contests
50’s Trivia
50’s Music and Entertainment
Mini Drawings
There will be a silent auction with many theme baskets:
Children’s baskets
Family Game Night
Hunter’s Hope
Gummer Peat Gardening Package
Party Lite Gift basket
Duke signed basketball
Rick Mahorn Autographed basketball
Sportboat Fishing Charters (1/2 day)
West Michigan Whitecaps Package
Autographed Kasey Kahne Calendar, Rookie of the Year picture and framed mini-poster
A basket from Hendrick’s Motor Sports
And many, many, more
Please mark the day on your calendar. Come join the fun. Maddie, Sam, Max, and lots of other MLD kids and adults appreciate all you have done for them. Central Montcalm area, Chesaning and Charlevoix have all done incredible things for our family and the MLD cause. Our fellowship partners have been amazing. The war we have waged against MLD isn’t over.
We are going for it all - 100 percent.
Thursday, January 13, 2005 4:36 PM CST
Dear Friends,
We have had a good couple of days. Yesterday was another snow day. (Sorry people of the business world.) We had a nice day and Maddie was really excited to have all of us home. It was Maddie’s day to give blood and see Dr. Konstantelos. The bad news was that she lost a pound and her magnesium and potassium were low. The good news was that her lungs continue to sound clear and all of her other labs were good. Dr. Kurtzberg has taken her off one of her antibiotics and one of her breathing treatments.
Today we had school. Sam and Max had a good day. They both look a little tired. Grandma Up North, aka Marcia, came last night and stayed with Maddie. They were busy doing puzzles all day. Thanks, Marcia.
Everything else looks good. Please remember about the fundraiser on February 12th. I’ll post the information below. We are really trying to fill the place this year. We would especially like to meet the people who have started following our website that we haven’t yet met.
Love,
Jane
On Saturday, February 12th, the Third annual Kick MLD in the Butt Benefit will take place in Stanton. It is going to have a 50’s theme. It will be from 3:00 pm until 7:00 pm.
There will be many activities:
Root beer sodas and hot dogs
Elvis Look-Alike contest
Hoola Hoop and Limbo contests
50’s Trivia
50’s Music and Entertainment
Mini Drawings
There will be a silent auction with many theme baskets:
Children’s baskets
Family Game Night
Hunter’s Hope
Gummer Peat Gardening Package
Party Lite Gift basket
Duke signed basketball
Rick Mahorn Autographed basketball
Sportboat Fishing Charters (1/2 day)
West Michigan Whitecaps Package
Autographed Kasey Kahne Calendar, Rookie of the Year picture and framed mini-poster
A basket from Hendrick’s Motor Sports
And many, many, more
Please mark the day on your calendar. Come join the fun. Maddie, Sam, Max, and lots of other MLD kids and adults appreciate all you have done for them. Central Montcalm area, Chesaning and Charlevoix have all done incredible things for our family and the MLD cause. Our fellowship partners have been amazing. The war we have waged against MLD isn’t over.
We are going for it all - 100 percent.
Tuesday, January 11, 2005 7:25 PM CST
Dear Friends,
Everything is pretty much the same here. Kari and Dad are doing a great job watching Maddie and sometimes Sam. Maddie is becoming more comfortable with the new routine. She said tonight that she especially likes her time alone with Grandpa and Kari. She is still throwing up once a day. We are increasing her Prilosec and are hoping it helps.
Max and Sam are well. They are enjoying school.
On Saturday, February 12th, the Third annual Kick MLD in the Butt Benefit will take place in Stanton. It is going to have a 50’s theme. It will be from 3:00 pm until 7:00 pm.
There will be many activities:
Root beer sodas and hot dogs
Elvis Look-Alike contest
Hoola Hoop and Limbo contests
50’s Trivia
50’s Music and Entertainment
Mini Drawings
There will be a silent auction with many theme baskets:
Children’s baskets
Family Game Night
Hunter’s Hope
Gummer Peat Gardening Package
Party Lite Gift basket
Duke signed basketball
Rick Mahorn Autographed basketball
Sportboat Fishing Charters (1/2 day)
West Michigan Whitecaps Package
Autographed Kasey Kahne Calendar, Rookie of the Year picture and framed mini-poster
A basket from Hendrick’s Motor Sports
And many, many, more
Please mark the day on your calendar. Come join the fun. Maddie, Sam, Max, and lots of other MLD kids and adults appreciate all you have done for them. Central Montcalm area, Chesaning and Charlevoix have all done incredible things for our family and the MLD cause. Our fellowship partners have been amazing. The war we have waged against MLD isn’t over.
We are going for it all - 100 percent.
Love,
Jane
Sunday, January 9, 2005 5:38 PM CST
Dear Friends,
Overall, we had a really nice weekend. Yesterday we spent time around the house. Sam and I ran to Meijers. Maddie is still battling in the war against vomit. Yesterday, she threw up once. She always feels much better afterwards. In fact, as soon as she was done, we went out sledding behind the golf cart. The kids had a great time. They fell off the sleds. They bounced on the sleds. They laughed and laughed on the sleds. My 38 year old body was a little sore afterwards. The kids didn’t seem to feel a thing. We have also discovered that Max is a huge hot chocolate fan.
For a Christmas gift, the cousins (Molly, Grace and Jackson) gave our kids a trip to Build a Bear Workshop. Sally called and arranged with the store for us to come in before it opened. We left the house really early this morning, drove to Williamston, joined the Carrolls and then went to the mall. The kids each picked an animal, stuffed it, dressed it and made a birth certificate. They had a GREAT time. It was such an especially nice treat for Maddie to be able to go some place and do something normal with other kids. The staff at Build a Bear could not have been nicer. With our new stuffed friends, we went back to Williamston and played together. Maddie and Sam slept on the way home in the afternoon. All five of us had a wonderful time. Thanks Bill, Sally, Molly, Grace and Jackson.
We keep hoping Maddie will bounce back soon. It is hard to see her still not feeling well. It helps to have her busy like today. She needs reminders that someday she will feel great again.
Love,
Jane
Thursday, January 6, 2005 4:53 PM CST
Hello.
Well, we got the old phone call about 6 am to say “Snow Day!”. It’s the same feeling you had when you (me) were a kid. All that snow and No school! Things are different now, a little older, a little wiser ( I think), but, still the same feeling as when you were a kid. The kids slept in a little. We were lazy and sat by the fire. All three kids were doing great. Great morning!
Max had OT today. Jill made it through the snow. Jane ran into school for a short time. The kids played and watched tv. We made and had many calls and e-mails in preparation for the February MLD fundraiser. We’re getting excited and things are starting to happen. Thanks to everyone who is helping and sending baskets... it should be a great time.
So far, no one has thrown up or felt sick. Everyone is eating well. After all Maddie went through in the past week, she only lost a half pound. We’d like to see it go in the other direction, but we’ll take that for now. We’re still waiting to hear on her lab work. It looks like we’ll be heading back to Duke in the first week of February. Maddie needs to go back for more test. We’re sure all her test will come back positive.
It’s back to school for three of us tomorrow and then the weekend. More winter fun!
Have a good weekend.
Jeff
Fundraiser News:
http://www.trimperchildren.org/EventsSchedule.html
Link below.
Wednesday, January 5, 2005 6:43 PM CST
Dear Friends,
Everything is pretty much the same here. Maddie did throw up once today. She ate through out the day. She ate many small meals. She had an appointment with Dr. Konstantelos tonight. He said her lungs ‘sounded crystal clear’.
Sam rode the bus home at noon today. It was the first time riding it here. He had a good time. Kari, the sitter, called last night. She wasn’t feeling well. I am sure we made her sick. Sorry, Kari. Dad came over and filled in. He really is our ace in the hole. Thanks, Dad.
Max has been really tired and a bit out of it. It takes him so long to recover after viruses or process meds through his body. I expect it will take most of the week and hope he is back to his chipper self next Monday.
Thanks to those of you who have contacted us about baskets for the fund raiser on February 12th. Tammy and Penny are running the show. We have passed your messages on. I think there are going to be a lot of fun things to bid on. I am now going to start focusing on getting a lot of you to come. It is not only for a good cause but it will be a lot of fun. You will feel a great sense of community and that alone is worth your time. Please put it on your calendars. I will let you know the exact time soon.
Love,
Jane
Tuesday, January 4, 2005 6:39 PM CST
Dear Friends,
Although I dare not write it, it appears that things may be improving for Maddie. She did throw up again last night. She also threw up this morning. Tonight she wanted chili for dinner. She ate it and is doing well. She is also eating a bowl of cereal as I type.
Sam and Max are back into their routine. I think they were really ready for it and enjoy a little more activity than hanging around the house. Maddie has handled the new adjustment well. She enjoyed Kari, her baby sitter yesterday. She enjoyed Grandpa today but thought Kari handled making chips and cheese better. J Needless to say, she is in good hands while we are at work. She also had school with her homebound teacher, Mrs. Helms.
Jeff and I are busy being back at work. It is really interesting being right next door to each other. It will be even better when all five of us are there.
We are getting ready for the snow!
Love,
Jane
Big MLD fundraiser in Stanton! It is on February 12th. It will be a 50’s theme. Food will be served. Baskets will be in a silent auction. If you would like to donate items for the auction, please let us know and we will put you in touch with the right people. There will also be entertainment and mini-raffles. Thanks!
Sunday, January 2, 2005 6:22 PM CST
Dear Friends,
Jeff put some new pictures on the website. The writing on the tub was done by Maddie. Her little picture of a butt is priceless.
We are ready to start the new year and really hope it is a good one. Max and Sam are better now. Max seems tired still but Sam is his ever - energetic self. Maddie, however, just isn’t right yet. The past two nights she has thrown up. Ugh! We brainstorm all the things it could be. The list of positives is longer than the negatives. She isn’t congested. She isn’t breathing hard anymore. She is eating well through out the day. She has just been feeling yucky at night, throwing up and wanting to sleep.
Did you also notice in the pictures that she has lost a ton of hair? We heard two theories at Duke. 1. She had GVH on her scalp and lost the hair. New hair will now grow. 2. The meds she is on have caused the hair loss. We are rooting for reason 1 and hoping she grows a better batch.
Tomorrow is big day for the family. Jeff and I are both officially back to work tomorrow. (Right next door to each other – That’s a first for us.) Max and Sam will be back in school. Maddie will need to stay home until her immune system is normal. We have a baby sitter coming on Monday, Wednesday and Friday. My dad will cover the other two days. We have wondered if all this is why the little girl has been sick. She has handled a lot and it is hard to tell what bothers her.
One day all three kids will be well. One day all three kids will be well. One day all three kids will be well. One day all three kids will be well. One day all three kids will be well.
Love,
Jane
Big MLD fundraiser in Stanton! It is on February 12th. It will be a 50’s theme. Food will be served. Baskets will be in a silent auction. If you would like to donate items for the auction, please let us know and we will put you in touch with the right people. There will also be entertainment and mini-raffles. Thanks!
Friday, December 31, 2004 5:48 PM CST
Hello.
Better day today. The kids all felt ok, not great, but ok. We'll take that! Max has his new braces for the new year. We're ready for 2005! The kids thought up some rhymes for 2005. Max is going to "jive" in 2005! Maddie is going to "thrive" in 2005! Sam is going to 'drive" (?) in 2005! Daddy is going to get bit by a beehive in 2005! Nothing for mom yet. We'll think of something for her. Happy New Year's Duke BMT team and 5200!
Happy New Year! Cheers!
Jeff
Thursday, December 30, 2004 7:08 PM CST
Hello.
Another “eventful” night and day around here. Sam started throwing up before bed (last night). Max started about 9pm. Max slept with Jane (because of seizure ) and pretty much threw up all night. I slept upstairs with Sam (because of him throwing up). Sam stopped about 3 am, so I thought I was going to get some sleep. Ten minutes later I hear some one throwing up. I looked over and saw Sam sleeping. “Maddie?” “It’s me Daddy.” “Man.” Then she was at it until morning. Jane and Max were already up when we came down. Another day of washing towels, sheets, naps, movies... Maddie and Max continued to throw up most of the day. Sam came around early afternoon, then Maddie began to feel better. Max took a three hour nap then he had another seizure (small) tonight. I think Jane and I are almost at our ends. We talked to Dr. Kurtzberg and gave Max some seizure meds. He was pretty loopy. Jan came over tonight to check on Max. We always seem to feel better after some one we trust looks at our kids. Thanks Jan!
Tonight, Max is doing ok. He should be out after what we gave him, but he’s sticking it out. We’re all ready for bed and a better day tomorrow. Jane was suppose to go shopping with her mom and sisters tomorrow. She’s going to pass on the trip. She’s been looking forward to this and getting out. I have to take Max to Grand Rapids for new foot braces tomorrow if he is feeling better. Another “interesting” day, but (we hope) it can only get better.
Jeff
Wednesday, December 29, 2004 6:27 PM CST
Update: Thursday 8:30 am Yep. Max started at 9:00 last night. It was a messy night. Maddie started up again around 3:00 am. I have the feeling Jeff and I are soon to follow. I guess the good news is we are dealing with regular sickness stuff and not Duke hospitalizations.
Dear Friends,
It has been an interesting day. For the most part, we have been relaxing around the house, doing arts and crafts, and watching movies. The evening got a little exciting.
First, Maddie is fine. She is feeling better, looking good and eating well.
Secondly, Sam started throwing up around 4:00. He threw up a few times and fell fast asleep. That is not our usual Sam at all.
Finally, around 5:00 Max called out “Ow.” I asked what hurt and he said his legs. I went to him and both of his legs were shaking. His arms were shaking and his jaw was shaking. I assumed it was a seizure. He was talking to me the whole time. He told me it was scary. He said his legs weren’t doing what he wanted them too. I called 911 in case it got worse. I got the valium ready in case it lasted over 5 minutes. Jeff paged Dr. Kurtzberg. Two ambulances and 4 crew members came. I was a little embarrassed that I may have overreacted, but they were so nice about it. Max had stopped shaking. He didn’t have a fever. Dr. Kurtzberg answered the page. She told us it sounded like a seizure. Give him another dose of Keppra. Let her know if it happens again.
Never a dull moment.
Got to go, Sam’s throwing up again. I am sure Max will start within hours.
Yes he did. We have two boys just tossing their guts. We're running back and forth. What a vacation!
Love,
Jane
Tuesday, December 28, 2004 2:38 PM CST
Dear Friends,
Maddie had a bit of trouble last night. She was throwing up about every 15 - 25 minutes. The poor thing was really hurting. It ended about 1:00 am. She felt okay this morning. She had her weekly blood draw and doctor’s appointment. She is still pretty whipped but hasn't thrown up today.
It sounds like whatever she had is going around. We have heard of a few people with the same type of thing. It was short lived whatever it was. Now we are waiting for Max and Sam to start. Yikes.
Max has been busy with therapies this week. Sam is playing all around the house. We rented some movies today and are taking it easy.
Love,
Jane
Sunday, December 26, 2004 1:46 PM CST
Dear Friends,
What a weekend. We were busy with family and it was nice. We spent Christmas Eve day at Grandma and Grandpa’s house in Chesaning. We were able to spend time with everyone but cousin Molly and Uncle Bill. Molly had a cold and they didn’t want to expose Maddie. The Carroll kids have had to be really flexible with their cousins. It hasn’t always been easy and they have handled it soooooo well. Must be good parenting.
The kids had fun opening presents. We came home and had our own little family gift exchange.
On Christmas morning, they opened presents from Santa. Grandma and Grandpa from Charlevoix, Aunt Cindy and Uncle Carl, Aunt Jenni and Uncle Mark all came for the day and night.
It was a busy weekend of eating, opening gifts, talking, eating and opening gifts. The kids were spoiled and loved every minute. Jeff will put up some new pictures sometime today.
We hope you had a good holiday with family and friends.
Love,
Jane
Thursday, December 23, 2004 12:51 AM CST
Dear Friends,
It is Thursday afternoon and we are almost ready for the big day. We have just one more last minute trip to the store. The cookies are decorated. The gifts are wrapped. The nativity scene is up. The kids are glowing. Bring it on.
Everyone is doing well. Maddie is coughing every once in a while but she is very active, happy and energetic. I feel like we have our girl back. Who could ask for anything more?
As happy as we are, we can’t help but remember our friends who are missing their children. We pray for strength and peace in the coming days.
We are also thinking of the families who have members in the military. We pray for their safety and a swift homecoming.
We are thanking God for his son this week. Merry Christmas.
Love,
Jane, Jeff, Max, Maddie, Sam and even Kippy
Tuesday, December 21, 2004 7:04 PM CST
Dear Friends,
“Oh, there’s no place like home for the holidays…”
“I’ll be home for Christmas. You can count on me.”
That pretty much sums it up. Maddie and Jeff arrived home at 3:00. It feels great. We are loving every minute.
Love,
Jane
Monday, December 20, 2004 1:15 PM CST
Dear Friends,
Maddie just called and said, “We’re coming home.”
Yay! They needed to head back to the hotel, pick up a prescription and then they will be on the road. They will drive part of the way tonight and finish in the morning. Thank you, God.
Merry Christmas!
Love,
Jane
Sunday, December 19, 2004 7:30 AM CST
Dear Friends,
It’s quiet in our home right now. I thought I would take advantage of it with an update.
Joanne came over yesterday and helped me get the house ready for Christmas. I hope we aren’t too over confident about Maddie and Jeff coming home. I just really wanted the house beautiful when they arrive. We are still hoping on Tuesday as their departure day. The house does look pretty. I had to make a couple of trips to Meijer (Yikes!!!) For all you other last minute shoppers, all of their home Christmas stuff is 50% off. Joanne was a great help hanging, wrapping, and helping the boys. We were still finishing the wrapping at 11:00 at night. Thanks, Joanne.
I talked with both Jeff and Maddie yesterday. Jeff sounds really ready to come home. Maddie sounded good but stuffy. She was very cheerful. Jeff is becoming frustrated in getting her to eat normal meals. Cheezits are her food of choice right now. I think he just wants her really well so they can bust loose.
Thank you for all the prayers.
Love,
Jane
Thursday, December 16, 2004 7:47 PM CST
Hello.
Things continue to improve here in North Carolina. Maddie seems to be breathing easier, sleeping better (although hooked to a pump all night and IV meds) and in better spirits. Maddie just handles this all so well. Oh yah, she has her moments, but she is great. She wants to go to the zoo tomorrow, so we’re waiting for the OK from Dr. Kurtzberg. We went to clinic today and things went well. We are just waiting for the moment to hear the words “You can head home’. We’ll make it just in time for Christmas if things keep going well. Cindy has been a great help. I’ve been able to run to stores... Maddie has also whooped her in Guess Who (Cindy won a couple today). So, tomorrow we hopefully will head to the zoo. Clinic on Saturday. Cscan, IVIG, blood draw, clinic and meet with Sue and Dr. Kurtzberg on Monday. We’ll take today as a good one.
Jane has been busy at home. Between work, the boys, doctors... she sounds tired. As any teacher knows, this time of year is very tough in the classroom. A snow day would be a nice breather for her. Pray for snow. We miss her and the boys. Once again, sometimes we feel our “situation” is tough, you don’t have to go far down here to find families in tougher situations. I’ve said it before, everyone should spend some time in a pediatric unit (especially this time of year). You really learn to put things in focus and what truly is important.
Good night, have a great weekend.
Jeff
Wednesday, December 15, 2004 7:19 PM CST
Dear Friends,
“Just saw Maddie. She looks better. I think the steroids are helping.” That’s what the email from Dr. Kurtzberg said today. They have started Maddie on a couple of different breathing treatments and increased her Orapred for a couple of days. It is always nice to hear good news.
Jeff and Maddie sounded good on the phone. They both sounded happy to be out of the hospital. They did go to 5200 today so Dr. Kurtzberg and Sue could see her. Aunt Cindy flew into Durham today. Jeff and Maddie were happy to see her.
The boys were busy at school. Sam had only a half a day and then rode the bus (first time) to Cheryl’s. He loved it. Tomorrow I’m going to take the boys to Greenville after school. Sam will get his monthly IVIG treatment. Max will tag along.
Thanks for all the prayers. These kids are in good hands.
Love,
Jane
Tuesday, December 14, 2004 3:04 PM CST
Dear Friends,
I just spoke with Jeff and he is loading up the car. Maddie is being discharged tonight. Jeff sounded stressed trying to get the prescription meds, loading up the car, getting ready for home health, etc. I forgot how much work discharge is.
The plan is still for Maddie and Jeff to come home next week. Dr. Kurtzberg is still concerned about Maddie’s lingering issues. (We are too.) We have learned not to count on anything, but we really hope it works out for next week. We are praying for Maddie to be completely well – no congestion, easy breathing, and large appetite.
The boys are dong well. They are busy with school again. Aunt JoJo came last night. It was a nice surprise and she decorated Christmas cookies with them.
That’s all the news for today.
Love,
Jane
Sunday, December 12, 2004 5:37 PM CST
Dear Friends,
We made it safely to Michigan. The weather was okay. It was better than the Weather Channel predicted. We made good time and were in Stanton by mid afternoon. We felt bad for Grandma and Grandpa as they continued on their way to Charlevoix. They must be exhausted. Thanks so much for your help, Don and Marcia.
It is 6:30 and the boys have had their bathes and we are all three in our pajamas. It will be an early night.
Jeff says Maddie is doing well. She was very active today. Rumor has it that Aunt Sally says she is away at Arts and Crafts Camp. It does feel that way. She didn’t want to leave on her four hour pass this week because she was going to miss arts and crafts time. Perhaps she is having too much fun??
We are counting our blessings and waiting patiently for Maddie to get over this bump. She is not in danger. We are grateful and always thanking God. Compared to the pain of many, we can handle this.
Love,
Jane
Saturday, December 11, 2004 11:57 AM CST
Dear Friends,
Well, our visit is nearing an end. I thought I would do a quick update before we head out on our way.
Although, it has been so good to see each other, the visit was a little hard too. Maddie and Jeff really had a routine down and we disrupted that a little. I heard often, “That’s not how Daddy does it.” It was also a bit tough for the boys. They spent a lot of time in the hotel room and became bored quite often – especially Sam.
We will head out tonight and finish the drive tomorrow. With the weather, it may take us a little longer than we are used to.
Maddie continues to do well. Dr. Kurtzberg came by yesterday. She spoke with Jeff. She thought Tuesday or Wednesday was realistic for discharge. She wants them to stay through the weekend and if Maddie is stable or improved, they can leave a week from Monday or Tuesday. We hope this all works out.
Hendricks Motor Sports had a team of people on the unit today. They came last year too. They are spoiling the kids with gifts and really bring a great energy to the unit. You would not believe how many gifts our kids received. The smiles were enormous. We are so thankful they came.
It’s never easy to leave each other. I can’t wait until these medical issues are over. Being together in our home would be a wonderful Christmas gift this year. More importantly, having three healthy kids would make my year for 2005.
Love,
Jane
Thursday, December 9, 2004 7:06 PM CST
Dear Friends,
I am going to make this a quick update tonight. Maddie is in her room and I am just making a quick trip to the lounge.
Maddie is going to be in the hospital over the weekend and will hopefully be discharged early - mid next week. They were talking about discharging her tomorrow but Dr. Kurtzberg is on the floor for the next two weeks. They decided to keep her in so Dr. Kurtzberg could see her.
From a mom point of view, Maddie seems like she was when I brought her down to North Carolina. She is still congested, breathing hard, and eating little. X-rays, CT Scans, etc. look good. They like what they hear when they listen to her, etc. We are glad she is doing better, but it is also a little frustrating because she isn't completely well. Christmas also looms out there and we would really like to be home together for it this year. We will see.
The boys have been good sports. Maddie had a four hour pass today. We took her to the hotel and those boys were the best medicine for her. It felt great.
Grandma and Grandpa have been an enormous help. They have kept the boys happy and made sure they are eating. Jeff is enjoying his time with them.
We hope all is well in Michigan.
Love,
Jane
Wednesday, December 8, 2004 4:03 PM CST
They made it!!!!!
Tuesday, December 7, 2004 4:42 PM CST
Hello.
Jane called about 4:30 pm and they were ready to head out. I hope they miss all the rain and wind. They'll drive as far as they can and rest for the night. They should be down tomorrow afternoon. Maddie is getting excited to see them. She's real excited to see Sam. She has trick gum (from Uncle Mark) that she wants to try on Sam. She's saved one piece for him. What a nice sister!
The docs said Maddie sounds and looks good. Maybe in a couple of days. Dr. Kurtzberg will give the final call. They were going to talk to her tonight. Then, if things all go well, we'll stay another week and see how she does. I hope we're finally on the right path.
Days are starting to get long in here. Maddie has more energy, but doesn't want to exercise that much (unlike her dad). So, I keep pushing her to walk and get out of bed. She loves coming to the lounge area for activities. Bingo tomorrow!
Not much else going on. Just life on 5200. Being on this unit made things tolerable. The people who work here are incredible people. Dr. Kurtzberg and Duke University should be proud of them. They go way beyond their duties to make things good. Thanks once again 5200 (we're not gone yet).
We'll update when the rest of the family arrives.
Jeff
Monday, December 6, 2004 7:37 PM CST
Dear Friends,
I just spoke with Jeff a little while ago. The doctor had just been in during rounds. Maddie had a chest X-ray done this morning. He said that the pneumonia was gone and the air issues have cleared up. She is still congested and coughing some. She is also breathing a bit harder still. All in all, she is on the right path and we just need to be patient.
I am going to drive down to North Carolina tomorrow night with the boys. We will stay part way and finish the drive on Wednesday. Without knowing how long this will drag on, I need to see Maddie and the boys need their Daddy. We will come home on Sunday. Don and Marcia are going to be driving with us. This way we can leave a car for Maddie and Jeff when their time comes to head home.
Sam had a good day at school. Max did too. He and I looked tired tonight. Sam was still going strong.
We are packed and read to leave tomorrow. We are really looking forward to seeing Maddie and Jeff.
Love,
Jane
Sunday, December 5, 2004 6:51 PM CST
Dear Friends,
Overall, it was a good weekend for the Trimpers even though we missed each other a great deal. The boys mentioned a few times today that they missed their dad. It is getting harder.
On a bright note, Maddie continues to feel well. The oxygen is off. We are waiting for her appetite to kick in. She ate a little bit today. She went for a walk with Jeff and Mark around the hospital and clinic. She played the piano in the lobby of the clinic.
The boys and I worked around the house today. We played for a while in the basement. When Sam went upstairs, Max and I just sat and looked in the mirror on the wall. I stood him up and told him to look at himself. He said, “What a handsome devil.” That is a direct quote. He is such a great kid.
I would say that this time alone has really brought Max and Sam a little closer. It has been nice to watch their brother time.
Sam is a bundle of energy and is loving all the activity with other kids during the week. I think Max and I might have bored him a little this weekend.
We hope you all had a good weekend. Thanks Uncle Mark for all your help. We hope you flight goes well tomorrow. Jeff hang in there while flying solo.
Love,
Jane
Friday, December 3, 2004 8:23 PM CST
Dear Friends,
Maddie just called to say good night. She sounded really good. Jeff said she had a great day. That is two in a row. Go Maddie!
Joanne left Durham this morning. Thanks so much Joanne. Maddie had a great time.
Uncle Mark arrived tonight. Jeff said something about ‘the ole nail in the fake toe trick’. They are sure to have fun.
Sue Wood, nurse practitioner extraordinaire stopped by today. I happened to call at the same time. She assured me Maddie looked good.
They think Maddie will be in Durham for 2-3 more weeks. I believe Dr. Kurtzberg’s words were, “I think you will be home by Christmas but I can guarantee it.” As long as she gets well, we have the time.
I know there was more Jeff told me to write, but my memory has been a little shaky.
The boys are doing well here. Max in particular had a great week. Sam had a good time at school and Cheryl’s daycare. Getting out of the house was a challenge, but we got better at it each day.
Thank you to everyone for the help, support and prayers.
Love,
Jane
Thursday, December 2, 2004 9:24 AM CST
Hello.
Things continue to move slowly here in North Carolina. Maddie had a couple of rough days. I emailed Dr. Kurtzberg yesterday about her (worried). She was in Washington DC. Of all the things she needed to do, she came over to see us last night when she got home. This lady is incredible. As usual, she made me feel better about Maddie's progress. It's just going to take some time. Maddie has slept great (as good as can be in a hospital) last two nights. She has also been sleeping much of the day. Anyway, things are moving slow, but hopefully in the right direction. Our new goal is to make it home for Christmas.
Joanne has been great down here. She has given me breaks from the room and to go back to the hotel and shower. We are in the process of making plans for the next shift. Family have been a great help and couldn't have done any of this without them. Thanks!
Jane and the boys are busy with school and all. It's really hard on Jane not being down here. I think we all really miss each other and just want Maddie well and back together again. I really miss the boys!
It sounds like the snow in Michigan has been great. I'm one of the freaks who love the snow and missing it, but this sunshine and 50's/60's isn't bad either.
Have a good weekend.
Jeff
Tuesday, November 30, 2004 7:24 PM CST
Dear Friends,
Everything remains the same with Maddie. She had the CT Scan today. The pneumonia looked better. They are going to keep the antibiotics and the breathing treatments going. They are happy with her improvement. Due to nights in the hospital, she is really tired and is giving Jeff a hard time. One really bright spot for her is having Nurse Emily, her primary, at night (for 6 straight nights – 12 hour shifts. How do they do it??). We love Emily. Aunt JoJo has been keeping things lively. I know Jeff is appreciating the breaks.
They also had a visit from Dr. Beam, the fellow working at Duke. He stayed with them about 45 minutes and shared with Jeff the work he doing with cells. He was very excited. Jeff’s direct quote was, “He’s the kind of guy I’d like to have a couple of beers with and talk about cells.” Jeff was very impressed.
The boys are good. We’ve been getting tucked in early. They both had baths and we played in the basement for a while.
We hope you all had a good day. Let’s prepare for snow!!
Love,
Jane
Monday, November 29, 2004 7:37 PM CST
Dear Friends,
Well, Two Joannes are now in Durham to help with Maddie. Joanne Rhode, aka, Aunt JoJo flew down today and will be spending a few days. She will give Jeff breaks and entertain Maddie. I called a little while ago and could hear the fart machine in the background.
Dr. Joanne Kurtzberg is back in town. The doctors at Duke are all wonderful, but it is always a good feeling to know she is there and involved. She came to the hospital and spent some time with Maddie. She thought she was looking better. She wants Maddie to have a CT Scan tomorrow and said we should know more after that. We are hoping she can be discharged in the next couple of days, but we will wait and see. We still have no guesses on when she will be able to come home.
Sam and Max had full days of school. I love seeing my guys in the hallway at Stanton Elementary School. When Max first started school, I always taught him to play it cool when he saw me. He shouldn’t come and hug and kiss me. Forget that! I can’t keep my hands off them. All three of us were pretty tired after school. The boys are in bed.
I have said many times that perspective is everything. It is apparent more than ever when you spend time at Duke. Maddie isn’t 100% but she is doing so well compared to other BMT children. There are kids all around her battling some awful diseases. There were quite a few families dealing with the reality of a relapse post transplant with cancer. There are so many kids and families that need our prayers.
Love,
Jane
Sunday, November 28, 2004 3:25 PM CST
I am home. Take my advice. Try not to fly on Thanksgiving weekend. Jane
Hello.
Jane left the hospital at 7:15 this morning. Fifteen minutes after she left, I decided to check her flight on the internet. Instead of flying out at 9 am, it wasn't leaving until noon. Then I find out she left later. Her flight out of Chicago isn't leaving until 7 pm tonight. So she won't be getting into late tonight. Then she has to go to work tomorrow. Hope her kids are good to her! We miss her, but we know the boys miss her too.
Maddie and I had a good day. I sat around and moped (sp) for awhile after Jane left and Maddie slept. We went off the floor again for a short while. We need to get her out of this hospital. She likes her room too much. Our new game we play is guess her oxygen level when we get back from walks. She's taking all my money of course. Good motivation for a little girl who likes money (and holds on to it, Cindy?).
Well, we hope to her from Jane tonight. Have a good week.
Jeff
Saturday, November 27, 2004 5:21 PM CST
Dear Friends,
Maddie continues to hold her own. The doctors came and said her chest x-ray looked better. They think she sounds better and looks better too. Without oxygen blowing on her, she kept her level at 95. She was tired today and a bit grouchy though. Spending the night at the hospital does not equal good sleep.
I am having a hard time preparing to leave tomorrow. It is really difficult to know that she needs me here and the boys need me home. I will miss both Jeff and Maddie.
We really have no idea when she will be discharged. I think they would like to see her oxygen level improve a bit more. I would like to see her more active. The sooner she is out, the sooner we can start thinking about her coming home.
Love,
Jane
Friday, November 26, 2004 11:11 AM CST
Dear Friends,
I made it to Durham last night. I was two hours later than we expected, but overall, it wan’t a bad trip. There were a lot of people in Chicago sleeping on the floor, lying on benches. I feel like one of the lucky ones.
Maddie sounded better on the phone than she look sin person. She was pretty tired and is still breathing hard. They have changed around her antibiotics and still feel good about how she is doing. I just don’t see an immediate end in sight.
Jeff went to a hotel last night and I stayed with Maddie. Now, all three of us are together for the afternoon.
The boys are with Aunt JoJo. They went to Chesaning yesterday for Thanksgiving with the cousins, etc. They had a good time and we have talked with them a couple of times on the phone.
Don and Marcia will take over on Saturday and I still plan on returning home on Sunday.
We hope you all had a good Thanksgiving. I must admit the sun and 50 degree weather in Durham feels good.
Love,
Jane
Jeff put new pictures on.
Wednesday, November 24, 2004 6:00 PM CST
Dear Friends,
Sorry we haven’t updated the pictures. I have no idea how to do it, and Jeff has the camera. The Mac on 5200 isn’t working. I am heading down to Durham tomorrow and I am bringing the laptop. Jeff can update pictures of Maddie.
I spoke with Jeff today and Maddie. They both sounded good. Maddie sounded peppier than she has in a very long time. The doctors feel that she continues to improve. There is nothing new to report as far as reports about the stuff in the lungs. Tonight she was eating cauliflower and dip and a turkey sub. She played Bingo with a group of kids on the floor. Since Jeff has been there alone, food has been delivered each day by different groups. I know he has appreciated it more than ever.
Also, the nurses on 5200 covered for him while he went on Tuesday and returned and rerented the car we had. They are such a special group and we really admire them.
Sam had a half day at school. He had a good time and spent the afternoon with Grandpa. Max had a whole day. He continues to look very bright eyed after school.
Tomorrow I will fly out of Lansing and be in Durham by mid afternoon. I will fly back on Sunday. Dr. Kurtzberg feels Maddie needs to stay through next week. Jeff has asked for a one-week extension on his unpaid leave. We (Duke doctors included) really need to fix all this and not have it drag on any longer.
Happy Thanksgiving. Although it looks more like a Christmas card out my window, I am in quite a mood of thanks. We have continued to be steered in the right direction. Thank you, God.
Love,
Jane
Tuesday, November 23, 2004 6:42 PM CST
Dear Friends,
We had another day full of phone calls between Durham and Stanton. Jeff met with the doctors. They continue to think Maddie is improving. They have a name of the bacteria in the sinuses. That treatment is in effect. The Pediatric Infectious Disease Team doesn’t think it is the same as her lungs. Time will tell. Her oxygen requirements continue to improve. She ate dinner tonight and seems to feel pretty good.
One of the hardest things about this whole situation is we don’t know how long it will last. Dr. Kurtzberg won’t want Maddie to come home until she is completely safe. We will just have to do what we have to do.
Sam stayed home with Grandpa Strawberry today. I truly takes a village with the Trimper family. We are so used to grandparents, aunts and uncles helping. None of them live within an hour from here. Yet, they make the effort to help us and never once complain or even make us feel put out. This has been hard on the WHOLE family.
We are missing Jeff and Maddie tonight. Home feels odd.
Love,
Jane
Monday, November 22, 2004 9:45 PM CST
Dear Friends,
I spoke with Jeff several times today. Nothing has shown up on the stuff taken from the lungs yet. They check each morning to see if anything has grown. Jeff says that something is growing on the stuff taken from her sinuses. They don’t have a name yet for what it is. I guess I call it stuff for lack of a better term. Crud? Junk?
They did a chest x-ray again today. The doctor said the pneumonia was ‘more mature’ on this set of pictures. However, she is doing clinically better. We have been told many times that the x-rays lag behind actual clinical improvement. They believe this is the case for Maddie. She is sounding better through a stethoscope. She is requiring less oxygen. They do think she will be in the hospital until Friday. Tentative plans. We just never know.
She sounds good via phone. She has been playing video games. She talks about seeing all of our nurses again. Jeff has had her walking the halls.
The boys are good. Sam had his first day of full day school. It felt good to walk him down the hall. He didn’t want me too. I had to explain that it was for my benefit not his.
Grandma and Grandpa Trimper came down to take Max to two appointments in Grand Rapids. They are here tonight. Thanks, Don and Marcia.
I forgot to mention two things. The first is a huge thank you to Joanne for being substitute Mom while I was a way. When I came home last night, she had backpacks ready, snacks packed, clothes laid out, etc. She is amazing and we are lucky to have her.
Secondly, I missed a very important wedding this weekend. I hope it was everything Elizabeth hoped it would be.
Also, thanks to the Barbers and Ritters for dinner tonight. You spoil us and we are very thankful.
Have a good night.
Love,
Jane
Sunday, November 21, 2004 8:25 PM CST
Dear Friends,
Maddie is still in the hospital. Nothing has shown up yet from the bronchoscopy (not sure on spelling). She is still requiring oxygen. She did some walking around the halls today. Her labs look good. Jeff is in Durham with her and I flew home.
As happy as I am to see the boys, this is really hard.
Love,
Jane
Saturday, November 20, 2004 9:09 AM CST
4:40 update: Maddie did fine with the procedure. She is awake and drawing cars and trucks. She even ate a couple of bites of hamburger. Jeff arrived about 20 minutes ago. I wish you could have all seen her smile.
Dear Friends,
One good thing about being in the hospital is easy computer access.
Here is what is currently going on. We were lucky enough to be admitted onto 5200, the BMT floor. It at least feels somewhat like an old home. There are familiar faces and things for kids to do.
This morning or afternoon, Maddie is going to be sedated and the lung doctors will be going in to take a sample of the new pneumonia and hopefully get a name of what is causing the trouble for Maddie. Once identified, they can treat it specifically. Right now, they do not know if it is bacterial, fungal or viral. We are hoping for the quickest answers. The quickest treatment and the quickest exit out of here. The procedure will be done in the Pediatric Intensive Care Unit and then she will be brought back to 5200.
Another concern which is related to the lungs is a low oxygen level for Maddie. She is on oxygen at the hospital. Without it, she falls into the low 80’s. She will need to have a better level to be discharged.
Jeff is on his way to Durham. His plane should arrive this afternoon. Depending how everything goes, I will maybe fly out tomorrow. I have little choice. It is so hard to balance all the different stresses: Maddie’s health, money-income, the kids at school, Max and Sam. Obviously Maddie’s health comes first but decisions are never easy.
I am really missing the boys. I am also very emotional about all the other sick kids here. The floor is filled with new faces, worried parents, and nurses working so hard. If anyone ever needs a reality check about what is important, come to Durham, Ann Arbor, or another children’s facility.
I will update when we know more.
Thanks for your concern, prayers and kind words. My tears have just been waiting to go and reading the guestbook did it.
Love,
Jane
Friday, November 19, 2004 5:12 PM CST
Hello.
Well, here I am again writing the journal and not Jane. I seems to be the start of another “situation” at home and another one in North Carolina. So, sorry if this is not the most positive entry. They are admitting Maddie into the hospital tonight. Her cat scan/xray (chest) looked worse. Jane said they don’t seemed too concerned but need to admit her. We are still waiting on test results on other things. Jane wasn’t sure how long they wanted to keep her in. We’ll see.
I am flying down tomorrow so Jane can come back home to the boys and go back to work. Things are starting to get tricky. She’ll fly home Sunday morning and we'll be home soon. That’s about all we know for now. Max and Sam have been great this week. They miss their mom, but are hanging tough. Sam is doing things all by himself since he’s a “school boy” now. I’m very proud of him. Max, I’m always proud how he works. Maddie, what do you say about that tough little girl. I’m not sure when Jane will enter next, but we’ll try to keep posted.
Jeff
Thursday, November 18, 2004 5:34 PM CST
Hello.
Not much to report today. I was hoping for some good news on Maddie’s test, but they’re still waiting for test to come back. I think they’re most worried about the lung test. They went to clinic to do Maddie’s treatment and went to see the ENT (not yesterday). They’re thinking about putting her on TPN (food w/pump through her port). She lost more weight this past week. Jane said Maddie is real tired. Her cough is lose and her voice sounded better to me. Hopefully we’ll get some reports back and they can make a plan when they’re coming home.
The boys and I are doing fine. We miss them, but we’re plugging away. Sam had a great first half day at school. He wanted to stay all day, but we’ll wait until Monday. So the big guy is starting “full time” (M, W1/2, Th) next week. I can’t believe it. The news we found out about him just two years ago, and here he is starting school. Wow! Now we just need to get the third one going and we’ll be rolling. I had three free hours today. I didn’t know what to do with myself. Those of you who know me, I had a few moments of guilt, but I had some trees to plant and a shed to clean. But it was a nice few hours.
Jane and Maddie will head back to clinic tomorrow for her treatments and hopefully get some results back. Then we go from there. Have a good night.
Sam did not want me to take pictures at school. I guess he's too cool for me now (or I'm a dork dad).
Jeff
Thanks for dinner!
Tuesday, November 16, 2004 7:17 PM CST
Wednesday, November 17
Not much to report today. They went to clinic to do Maddie's treatments and went to the ENT this afternoon. No new news (good). I'll update tomorrow morning if I hear anything different. Sam goes to school for a half day tomorrow!!!! Go Sam (Dash)!
Jeff
Hello.
Well, here we go. Jane and Maddie had a long day at Duke today. They started out at clinic for blood draws. Then Maddie had a CAT scan done. The CAT scan showed spots on her lungs. They think it is either viral or bacteria. They don’t think it is fungal, but are checking on it. She is on two new antibiotics for now. Oxygen has also “leaked” from her lungs from the coughing... So she had an oxygen treatment today, three breathing treatments and two new antibiotics (through her port). Busy girl! They’ll continue with all three for the next two days. Then they will make a decision on when to come home. This will be Friday or hopefully Thursday as planned. They’ll go to an ENT tomorrow for more test. They also have to go back to clinic for her treatments. They sounded good but tired. They were getting Maddie’s favorite North Carolina pizza tonight.
On the good note, they are happy we came down and are not too worried. They think they can get her feeling better in few days. But, (always a “but”) they want us to come back down in a couple of weeks to test her again (what is the name of the company who flies people-"Corp. Angels"? Anyone know?). I hope our school understands what we have to do for our kids. It’s very hard on both of us being away from each other, the kids and not being at school.
Max had a good day today. I took Sam to see his teacher this morning. She invited him to come back tomorrow morning for play time. He is VERY excited about it. I think we’re going to start moving with Sam. He’s ready to get going.
That’s all for now. Each day brings new news. Any guesses for tomorrow?
Jeff
Monday, November 15, 2004 12:29 AM CST
Dear Friends,
Decisions are sometimes so difficult. We have been wrestling for weeks on whether or not to take Maddie to Duke. It seems impossible to expect Dr. Kurtzberg to help us via email and phone. Well, time is up. Dr. Kurtzberg is on vacation next week. It is now or a whole lot later. Maddie and I are flying out of Lansing tonight.
She is still congested, still not eating normal and just not acting herself. Our plan is to fly in tonight. See Sue and Dr. Kurtzberg tomorrow. Get a CT Scan on her chest and head to see how she is doing. We will see if there is anything else that comes to mind once they see her. We have a scheduled flight home for Thursday and I pray we are on it.
Why me? Why not Jeff? Good question. We should really video tape it sometime when we are trying to make a decision. It is not very impressive. “I don’t know what do you think?” “I don’t know what do you want to do?” I think the bottom line is either I can’t let go of control or I just know more about the medical issues. I hope it is the latter but suspect the former.
Please pray but don’t worry. They haven’t asked us to come but have reassured us that they think it is a good idea.
Jeff will update tomorrow.
Kids at school: I don’t like this. We were really grooving and now I will miss three days. Be good. Work hard. I hope I see you Friday.
Love,
Jane
Sunday, November 14, 2004 5:48 PM CST
Dear Friends,
We had a good weekend. The kids went on golf cart rides, played in the house and watched some movies. Max went to see The Incredibles with Jeff today. Maddie and Sam saw it on Friday when everyone was in school and the theater wasn’t crowded. All three gave the movie a thumbs up but said it couldn’t hold a candle to Shrek 2.
It is good to hear from Carolyn. She is back in the guestbook and doing well. We missed you, Carolyn.
Although Maddie is still congested, she did eat more today. She actually ate three meals. Spaghetti for breakfast, mac and cheese for lunch and a hot dog for dinner. I hope this continues.
Tomorrow is the big day for Michigan’s deer hunters . We have the day off of school and will probably relax at home. The kids actually still have therapies.
We hope you all had a good weekend.
Love,
Jane
If anyone is interested in Let’s Kick MLD in the Butt merchandise, please click on the link below.
Friday, November 12, 2004 6:29 PM CST
Dear Friends,
Nothing too exciting here. Max has had a good week in school. Maddie is still the same with congestion. Sam is full of energy. We are looking forward to the weekend.
Please pray for Carolyn Wyman. She has really been inspirational to us and many other Caringbridge families.
Love,
Jane
Wednesday, November 10, 2004 5:05 PM CST
Thursday morning update: This was put in our guestbook last night. I wanted to make sure everyone saw it. Please say prayers for Carolyn.
Hi Jane & Jeff. Hope you don't mind me using your guestbook to get word to your many Prayer Warriors. Many of you know Carolyn Wyman, you either know her personally, know her cancer surviour story, or you just know her as a very special lady who writes almost daily in the guestbook and at many other caringbridge sites. Tonight I ask you all to pray for Carolyn. She hasn't been feeling well for the last few weeks and today it took it's toll and she was admitted to the hospital. She is receiving IV fluids for dehydration and because of extreme weight loss, she is hooked up to a heart montior and to oxygen. Her cancer doctor has been running test and the results are not looking good. We need a lot of prayers and the first place I thought of was the Trimper web site. Carolyn has became a part of many families lives and has toched many with her wise words and her southeren charm. She now needs your faith and prayers. Her latest message was "I've beaten this cancer before and I'll do it again", lets give her a helping hand doing it. Once again, thanks Jane and Jeff for letting me get the word out to so many.So glad to here the kids are doing good. We continue to pray for you all.
Lisa
Dear Friends,
Each day is so different. One brings worry. One brings joy. Most have some of each.
Jeff took Sam and Maddie to the doctor this morning. Maddie had lost another pound. I was relieved it wasn’t more. Everything continues to look good. Her blood work came back great. Her lungs checked out even better than last week. Dr. Konstantelos thought she even looked better. He is going to call Duke and see if they want him to do anything else. Jeff called and told me about the appointment while I was at school. I felt better after hearing about it and again after the lab work results were faxed to us. Sam also did very well.
Each night Max brings home an assignment notebook telling us what he did through out the day. Under science it said they talked about the three states of matter: solid, liquid and gas. Max just identified all three for me in the kitchen. Go, Max!
I started the day worrying about Maddie and ended it joyful that Max is processing information and able to communicate what he means. Each day is a blessing. Thank you, God.
“LET’S KICK MLD IN THE BUTT!” MERCHANDISE
Jeff has added a link at the bottom of this page. It takes you directly to our other website where we have MLD merchandise for sale. He has listed the prices and pictures of each item (Thank you, Corby for the pictures.). Penny is in charge of orders and shipping. Thank you, Penny. All money will go to our foundation account and will be used for research. There are frisbees, long sleeve t-shirts, sweatshirts, water bottles, travel mugs, note pads, etc.
We hope you all had a good day.
Love,
Jane
Monday, November 8, 2004 5:12 PM CST
Dear Friends,
Monday morning- back to our routine. Maddie and Sam had school with Mrs. Helms. Max had a half day at school and then went to Grand Rapids with Jeff to get new orthodics (braces) made. My dad, aka Grandpa Strawberry, came and watched Maddie and Sam. Thanks Dad.
Maddie ate a little more on Sunday and a little more today. We are starting her on another med to increase appetite. Other than that, she remains the same. She has congestion and decreased appetite but feeling fine and active. She is doing a lot of puzzles, playing in the basement, etc.
We hope you all had a good day.
Love,
Jane
Saturday, November 6, 2004 5:57 PM CST
Dear Friends,
It was a beautiful Saturday here. We enjoyed seeing the sun. Jeff stained the back deck. Max had a lazy (and well deserved) morning on the couch. Sam played around the house and helped Jeff outside.
Maddie still is not feeling 100% and took a nap this morning. She isn’t eating as much as she needs and we increased her steroid to see if that will help. Jeff and I are starting to worry about how long this has dragged on for her (5 weeks) and how much weight she has lost (5 pounds). We are trying a couple of things and giving it a couple of days.
Sam lost his first tooth last night! He was very excited. He has really been waiting a long time for this big event. He left it under his pillow with a note to the tooth fairy to please leave the tooth.
As you can see form the pictures, we took advantage of the weather today and went for a walk/roll on the trail. It was nice to be outside and we had a good time.
Shrek 2 is playing tonight at the Trimper theater. The three kids are picking at their Halloween candy. It is a nice quiet weekend night. We thank God for how well the kids are doing and pray for Maddie’s healing.
Love,
Jane
Thursday, November 4, 2004 6:07 PM CST
Dear Friends,
Things are the same here. Max is handling school well. He continues to look so bright eyed at the end of the day.
Maddie and Sam are enjoying their time with Jeff. The had school today with Mrs. Helms. They are doing such great stuff with her.
Jeff cleaned the old basement. It is a yucky job and I am soooo glad he did it. I told you all that more stuff would start getting done with Jeff around the house.
Life is busy. Life is good.
Love,
Jane
Tuesday, November 2, 2004 6:05 PM CST
Dear Friends,
Everything is pretty steady here. Maddie continues to be congested. Tomorrow is the weekly doctor’s visit. I am worried that her weight is down. She just isn’t eating much. I think it is a combination of everything; the congestion, the potassium supplements and the antibiotic. Sam is full of energy.
Max had a very tired day yesterday at school but has perked up today.
Jeff is enjoying his time with the kids. I am enjoying being back at school but I am sure tired in the evenings.
We voted today and are anxious to hear the outcome. I got up early and voted before school. No matter who wins, I am so glad to live in the USA.
Love,
Jane
Sunday, October 31, 2004 11:34 AM CST
Dear Friends,
Sorry for the late update. We have been having a fun filled weekend. Jeff and I went to Mt. Pleasant for the night to celebrate his 40th birthday with Sally and Bill. We had a great time and were eager to get home to see the kids this morning.
Joanne and Jill came over and spent the day and night with the kids. They went to Chesaning to ride in the haunted woods at Grandma and Grandpa’s house with the cousins. They have been playing Bingo, Clue, puzzles, and lots of other games. Thank you to two amazing aunts for making it easier for us to leave for the night.
We are getting costumes ready for tonight. Jeff will post some pictures tonight of the three trick or treaters.
Last year Maddie and Sam were in the hospital. The year before that we had found out about Max six days before. We are really looking forward to tonight.
Love,
Jane
Thursday, October 28, 2004 5:09 PM CDT
Dear Friends,
Things are the same with us. Maddie is still congested but we are not worried. It takes her body a lot longer to get over a virus. Her chest XRay yesterday looked better than the last one with the pneumonia.
Sam and Maddie had school with Mrs. Helms today. Penny and Sharon, two friends, came to help and together they had a Halloween party of their very own. The kids had a great time. Afterwards they knocked on my outside door of my classroom and brought me a cookie they had made. Thanks Corby, Penny and Sharon. We are surrounded by such generous loving people.
Max has had a tired week. He is looking forward to Saturday and Sunday.
I am having fun at school. It isn’t always easy and I feel like I am flying by the seat of my pants, but it is a thrill to be the classroom again.
Tomorrow is a big day. A wonderful man and father turns 40. We haven’t prepared like we should. There is no big party. No fancy gifts. There is just a lot of love and a store bought cake. He has handled the past two years better than most men could ever hope to. The world knows he is an incredible father but they don’t know that as a husband, he is darn near perfect. I am proud to be his wife and the kids and I love him dearly. Happy birthday, Jeff.
Love,
Jane
Tuesday, October 26, 2004 5:22 PM CDT
Dear Friends,
It has been a topsy turvy week in the Trimper House. As Jeff and I have changed roles, life has been made even more interesting.
Maddie, Sam and Jeff have had two great days at home. They have been to the trail, have done school, replanted some trees, stained the deck and played some games. For all of you who know us well, it will not surprise you that way more will get done with Jeff home than me. He doesn’t even stop to watch General Hospital?!?!
Maddie and Sam miss me but not very much. My day goes so fast that I really don’t think about them too much. It is when I get home, I feel the difference. Evenings are so short. I miss all our time. I do think my going back to work will make things easier as Maddie and Sam each enter back into school life.
I am having a good time teaching. My kids at school are fun, lively, and game for anything. I am winging it a little right now and look forward to more routine. The teacher who was subbing for me was phenomenal. That made it easier for me.
Max is busy doing therapies. He is exhibiting a little attitude with the therapists. We talk to him about it but are deep inside we are proud too that he is showing independence.
I enjoy seeing Max at school. I wasn’t sure if it would be hard being around healthy ‘normal’ kids - seeing Max in that environment. It isn’t as hard as I imagined. The kids are kind. The teachers wise. He is happy. I wish he was running around on the playground, but I am not sure that running makes a person happier. On the way home, he was talking a lot, being funny, and telling me he had a good day. That is what I thank God for.
We hope you are having a good week.
Love,
Jane
Sunday, October 24, 2004 6:41 PM CDT
Dear Friends,
We had a nice weekend. The kids were just relaxing both days - especially Saturday with all the rain. They were pretty tired from the week at Duke and needed the time off.
I spent the past couple of days getting ready to head back to teaching. When I was deciding how much time to take off, Jeff and I looked at the calendar, figured out when we would be at Duke, and chose October 25th. We thought that would be good because we assumed Maddie and Sam would start school after the one year check- up. As the date got closer and we knew Maddie wouldn’t have a healthy immune system until January, I started questioning what I was doing. Be ready for school? We would be just getting back from Duke. And the week before Halloween? What was I thinking?
It hit me in the middle of the night last week. Monday, October 25th is the anniversary of when Max was diagnosed and we first heard the words metachromatic leukodystrophy. I can’t think of a better day to go back to work, celebrate ‘normalcy’ and enter back into the real world. Someone had perfect timing, and it wasn’t me.
It has been a challenging, worrisome two years. Jeff and I have talked a lot about all that has happened, how it could have been so different, and how we thank God for the miracles we received.
Love,
Jane
Saturday, October 23, 2004 9:07 AM CDT
Dear Friends,
We made it home. Max received Botox injections in his legs yesterday morning, we met with Dr. Kurtzberg, and we headed home.
The meeting went well. It is such a calming and inspiring event to sit and talk with Dr. Kurtzberg. The only thing missing was Sue or nurse practitioner. She was working on the BMT floor and we really missed her.
All the results this far show no changes from three months ago. Sam is really doing well. He is off all his meds but Hydrocortisone. This will take a four month wean.
Although Maddie is doing well, she will be on her meds for a while yet. She is still congested and the pneumonia appeared in both her CT Scan and her chest XRay. Dr. Kurtzberg put her on a new antibiotic but doesn’t seem too concerned.
Dr. Kurtzberg thought Max looked good and was processing quicker (quicker responses to questions, etc.)
We are really so thankful for how well all three kids are doing.
The trip home was long, but the kids were good travelers. They all fell asleep around 9:00 pm. We arrived home around 2:00 am. They all snuggled in bed and Sam was the first one up 7:30 am. It feels good to be home. It seems like it has been longer than a week.
Unless something comes up, we will not need to make another trip to Duke for 6 months.
So much to be thankful for. So happy to be home.
Love,
Jane
Thursday, October 21, 2004 7:50 PM CDT
Dear Friends,
The tests went well today. Maddie and Sam had echoes and MRI’s. All three kids had their eyes tested. The doctor said they were all ‘looking good’. Sorry. I am tired.
We meet with Dr. Kurtzberg tomorrow and will hit the road. We are tired of all the appointments and yet we are continually thankful for them.
Love,
Jane
Wednesday, October 20, 2004 6:31 PM CDT
Dear Friends,
Today was a slightly shorter day. We had an early start and Maddie and Sam had EEG’s and BAERs. This means there were a lot of wires stuck to their heads. They had to lay still all morning. They did a good job. It was an almost four hour process.
While in the EEG lab, Dr. Kurtzberg called and told us they had flu shots available for parents of transplant children. We went to 5200 where the kids were transplanted and got the shot. While there we saw many of the nurses and Sue, our nurse practitioner. We were so glad to see them - especially Sue. We also saw Cory, our little MLD friend. He looked great and was being discharged today. They are such a nice family.
It was Maddie, Sam and Max’s turn. We went to clinic. Max received six shots - one of which was a flu shot. The only response to the shots was ‘Ow.” He is such a cool kid. Maddie and Sam each received a flu shot too. They both did amazingly well.
We came back to the hotel, ate lunch, and went to the mall. They have an outdoor area with fountains and it was good to get out.
We did the laundry, watched TV and relaxed. We are ready for EKG’s, eye exams, and MRI’s tomorrow.
Love,
Jane
Tuesday, October 19, 2004 8:32 PM CDT
Dear Friends,
I will make this real quick tonight. We just got home a little while ago and are finishing dinner. Late night for us.
We went to UNC and all three kids were evaluated for their development in a variety of areas. Maddie wasn’t feeling the greatest, but both Jeff and I felt like all three kids did well. They were really tired when we left after five and a half hours.
We came back to the hotel and ate lunch. We then went to clinic to see Dr. Kurtzberg. Tuesday clinic is always a long wait but she is always worth it. Sam has only one med left. (Hooray! Hooray!) Maddie is going to continue on her list of meds but she looks good. After all she went through at the end of the summer, her system just isn’t where Sam’s is. We will finish our week’s worth of tests and will meet with Dr. Kurtzberg for the final evaluation.
Great news today about some great kids (We are admittedly biased).
Love,
Jane
Monday, October 18, 2004 6:18 PM CDT
Dear Friends,
We had a nice drive to North Carolina. Our kids are really pretty good travelers. We spent Saturday night in West Virginia and drove the rest of the way on Sunday.
We were up and going early this morning. Maddie and Sam had nerve conduction tests at 8:30. This can be painful, but our kids handle it really well for some reason. After the nerve conduction tests, we went to the clinic and drew labs. It was good to see the familiar faces of the nurses and staff at the BMT clinic. We ate some lunch. The afternoon was spent doing pulmonary function tests, chest X-rays and a ct scan for Maddie. As with all medical appointments, we spent a lot of time waiting. Max was with us all day. Although he was bored, he was a good sport.
We are now tucking in for the night. We will have an early day with Dr. Escolar at UNC in the morning. One of the fellow is working there with her. They will evaluate the development of all three kids. We will meet with Dr. Kurtzberg in the afternoon.
Maddie is feeling fine but is still congested. We are going to try a little Children’s Benadryl tonight and see if it helps.
We will give a quick update each night. The week will end with a meeting with Dr. Kurtzberg to summarize all the findings. The one thing we won’t find out is the results of the immune studies. That will take a few weeks.
We hope all is well with each of you.
Love,
Jane
Sunday, October 17, 2004 3:29 PM CDT
We made it to North Carolina. It was a nice drive through the mountains today. Mixed emotions about being down here. We just hope everything goes as planned (good news from all the docs and out of here Friday). Have a good week.
Jeff
Friday, October 15, 2004 8:14 PM CDT
Hello.
Maddie and Jane made it home! We've had a crazy week and are heading into a crazy weekend and week. But, we're moving forward. It sure is great having everyone at home. Not much else I can say.
Have a good weekend.
Jeff
Thursday, October 14, 2004 4:58 PM CDT
Dear Friends,
Maddie is still in the hospital. She is having diarrhea but the fever has stopped. They found a spot of pneumonia in her right lung. There is also something ‘brewing’ in her urine sample. They have her on IV antibiotics and if all stays the same, she will hopefully be leaving the hospital tomorrow and going on oral antibiotics.
Maddie is doing puzzles, working in school with Mrs. Helms (Thanks, Corby), playing cards, etc. She is really feeling okay and handling the whole hospital stay well. It is the hardest for Jeff and me as we try to stretch ourselves between the hospital and home (and school for Jeff). Thanks to Grandpa Strawberry and Joanne for filling in the gaps.
We are still planning on leaving for Duke on Saturday.
Thanks for all the prayers. Right now, Maddie seems to be on the mend. Thank you, God!
Love,
Jane
Wednesday, October 13, 2004 6:09 PM CDT
Hello again.
Maddie is back in the hospital to give her IV meds and to keep an eye on her. She had a fever, chills and her sinus stuff was not getting better. Jane, Maddie and Sam went to their usual Wednesday visit at the doctors. They looked at Maddie, called Duke and to be safe they admitted her in this morning.
I went over this afternoon. Jane came home to bring Sam home and to see Max. They're not sure if they'll keep her in for one or two nights. So, the boys are at home and the girls are on a "get-away" for the night. Bob came over to watch Max and Sam. He'll be back tomorrow so Max and I can go to school (thanks Bob).
We are still planning on heading to duke this weekend. We have a lot to do but we'll make it. The good news is everyone is feeling good. Maddie was in a good mood when I left. Pokeman is over, time for the boys to go to bed.
Jeff
Tuesday, October 12, 2004 6:45 PM CDT
Hello,
Well, Maddie continues to worry us. Only a week before going back to Duke and her throat, nose, cough... is not getting any better. She spiked a fever today and Jane took her took Greenville Hospital. I think (I’m sure I’m getting it all wrong) they were going to start her on another antibiotic through her port. They were going to give her some other meds also. They called around 5pm and said they won’t be home until after 8pm. Sounds like Duke clinic. We just hope she’s doing better before we head south. This WILL be a ONE week visit.
Sam has been doing great. We forget to mention him sometimes because he’s doing so well. He is an ACTIVE five year old. They cleaned the basement for me today. What a great treat to be able see the floor. Thanks kids (and Jane).
Max had another busy day. Full day of school and therapy starting at 8:30 am. He told me school was “great” today. We’re real happy with how things are going, thanks to a lot of hard work from a lot of people.
Me, well, my leave was approved by the board last night. I will take next week off (Duke), then I will go back after Thanksgiving. We should know more about Maddie and Sam’s immune system by then. Jane goes back to her classroom October 25th. I think she’s getting real excited about it. She has not taught in almost two years! Wow! So pray, cross your fingers... that we will return one week from Saturday. Thanks.
Have a good night.
Jeff
A quick update. Jane took Maddie to the doctor this morning. They've decided to admit her to Greenville Hospital to give her more meds and to keep an eye on her. Jane didn't sound too worried. So, I will be off to the hospital soon here. More details later. Jeff
Sunday, October 10, 2004 3:15 PM CDT
Dear Friends,
It was a nice fall weekend. We had a good time in Charlevoix. The weather was cold on Saturday and the Applefest was a little too crowded for us. We ended up going to the beach of Lake Michigan. Maddie picked up shells. Sam and Max walked out to the end of the pier. The waves were rolling in. The wind was blowing. There were even two guys in wet suits surfing.
We went back to Applefest this morning. It was beautiful and sunny. There were not many people at all. We walked around, bought some carmel apples and then went to the beach again.
It was good to see Grandma Up North. Grandpa is away on a trip. Aunt Jenni and Uncle Mark came for visits too.
No school for Max tomorrow. Maddie needs to get her potassium checked again. We are going to go pumpkin purchasing. We are going to try to make a stuffed scarecrow too.
We hope you all had a good weekend.
Love,
Jane
Friday, October 8, 2004 11:03 AM CDT
Dear Friends,
Yesterday Sam and Maddie had to have their blood drawn for labs. Maddie’s potassium was really low. We went back to do a recheck. It was still really low and she has started supplements. We are also pushing bananas and potatoes. She will get rechecked on Monday.
We are busy this morning getting packed up to head up to Applefest in Charlevoix for the weekend. Jeff has only a half day due to parent teacher conferences. It is a nice to get an earlier start and the kids are really excited to see Grandma.
I hope that all of you who were partners in our fellowship idea received the newsletter this week. If you didn’t get a copy or if you aren’t a partner but would like to read the update, please click at the link at the bottom of this page.
I also wanted to fill you in on what is happening with us in the job area. I am planning on going back to teaching on October 25th. If the school board approves his request, Jeff will be taking time off from then until the end of November. When we go to Duke, Maddie and Sam will have their immune system’s checked. It takes 3-4 weeks to get the results. Although it is unlikely, we are hoping they are normal and the kids will start school. More realistic is the plan that the kids will go back in December or January. We will see.
We hope you all have a good weekend. We will stay busy strolling downtown Charlevoix, munching apples, watching the water, and enjoying each day. We will update again on Sunday. I am sure Jeff will have some great pictures.
Love,
Jane
Wednesday, October 6, 2004 7:42 PM CDT
Dear Friends,
We have had an active two days. Maddie and Sam have taken to watching CNN en espanol. They laugh and repeat the words. Maddie greeted me with an ‘hola’ yesterday. They went to the doctor today. Although Maddie is as congested as ever, they both received good reports. They will go back to the hospital tomorrow to give blood and Maddie will receive her IV med to prevent GVH.
Grandpa Strawberry came in the afternoon and watched Maddie and Sam while I took Max to a neurology appointment. It was with a new pediatric neurologist in Grand Rapids. It was a good appointment and the most exciting news was that Max gained more than 2 pounds since June. He needed it. His teachers and para pro at school are really pushing the snacks and eating. It is obviously working.
Max has been busy with school and therapy. He continues to look really bright eyed at night. He is much stronger than last spring.
Thank you for the prayers for the Joiners. There is nothing for me to write about them that could possibly express how I feel. Please continue to pray.
Love,
Jane
Tuesday, October 5, 2004 7:51 AM CDT
Dear Friends,
Please pray for the Joiners.
www.caringbridge.org/tx/joinerboys
Love,
Jane
Sunday, October 3, 2004 6:01 PM CDT
Dear Friends,
Today was the first anniversary of Maddie and Sam’s stem cell transplants. What a year. Aunt JoJo came over with a cake yesterday. (It was really good.) My mom and dad came over this morning. Dad helped Jeff finish up the pool fence. Sally, Bill and the kids came over to play too. It was a fun and busy weekend.
Max, Jeff and I went to church this morning. It was the first time Max has been to church since his transplant. It felt good to have him out and about. He did very well and I think he really had a good time. I couldn’t help but remember his last time there - Christmas before his transplant. I was so worried he would trip and fall walking down the aisle. The MLD was moving quickly and we were waiting to go to Minnesota. He isn’t walking down the aisle right now, but he heard everything and spoke about Jesus on the way home.
One year post transplant. I consider this the start to our journey out of the woods. Maddie’s immune system, and even perhaps Sammy’s, isn’t back to 100%. We will know more after our week at Duke.
We thank God for how well the kids are doing. It is certainly about His glory. At the same time, I spent a lot of time today thinking of the kids we met along the way who never made it to a year post transplant. We remember them all. We have the mission ahead to get back to normal and yet never take each day for granted, knowing our outcome could have been so very, very different. I don’t spend time anymore even trying to understand the why’s of it all. It is all beyond my limits. I just know tonight when I tiptoe in Max, Maddie and Sam’s room to give my nightly kiss, I will praying the whole time - giving thanks for all we have.
Love,
Jane
Friday, October 1, 2004 6:07 PM CDT
Dear Friends,
When we decided to raise money to fund two medical fellows at Duke, we asked for donations and told you we would keep you informed. We are happy to tell you that the first official newsletter was mailed today. We originally told you it would be emailed, but due to its length, pictures, not everyone having email and Mac vs. PC issues, we decided to make a paper copy.
For those of you who joined together to create a team, I sent multiple copies to each team’s contact person. We know some of these contact people were prepared to send the newsletter via email. We will add a link on the bottom of this page where people can access the newsletter. Team leaders just need to inform their people that the link is there. Thanks so much for your help.
We are very excited and hopeful about the work being done at Duke. We hope you are very happy after reading the descriptions sent by Dr. Escolar and Dr. Kurtzberg, as well as their words of thanks.
If you are a partner and don’t receive your newsletter by the end of next week, please let me know. I am sure I have made a mistake somewhere. I would like to perfect this system so the next newsletter will go off without a hitch.
Max, Maddie and Sam have all had a good week. Maddie is congested and has a bit of a headache tonight. It doesn’t appear to be anything serious, just the gunk we have passed around this house.
We hope you all have a great fall weekend. We will be celebrating one year post transplant on Sunday for the two little guys. Maddie informs me that we need a cake. We shall do just that. We thank God for one year of ups and downs that have saved the lives of our two kids. Wow!
Love,
Jane
Wednesday, September 29, 2004 7:31 PM CDT
Dear Friends,
Everything is fine with us. We had a great day. Thank you, God. I received this email though and wanted to pass the message. Sanfillipo is a disease in what I consider a cousin group to the leukodystrophies. Time is everything.
Thanks, prayer warriors.
Love,
Jane
Jane,
My name is Margo Manser. I learned about your family through my friend here in Texas, Rhonda Frachiseur. I've followed your families journey for about a year and I'm amazed at the strength and love you show every day. Rhonda and I both work for a company in Texas called Perot Systems. Another gentleman that works for Perot, Richard Lafferty, has a three year old niece that is suffering from Sanfilippo syndrome. Her name is Lauren Reed. Lauren has a caring bridge site and I was wondering if you could mention Lauren's site on yours, as you've done with some of the other families that are facing MLD and other terrible diseases. Lauren's site name is:
http://www2.caringbridge.org/az/lauren/ When I talked with Richard about his niece this week, he let me know that she is at Duke, going through some of the preliminary testing for a stem cell transplant, working with Dr. Kurtzburg and her team. Dr. Kurtzburg has told the family that Lauren needs to have the transplant by November for it to be effective. Her younger brothers umbilical cord was saved and will be used for the transplant.. The problem is the families insurance company will not pay for the transplant and the family needs to raise $600,000 over the next few months. I was hoping that by posting Lauren's site information on your families page that more people would become aware of her struggle and be willing to help.
I've never contacted a stranger, asking for help before, especially for someone that I don't even know but your family has touched so many people and I'm hoping that you can help with Lauren's fight as well.
Thank you Jane,
Margo Manser
Tuesday, September 28, 2004 5:24 PM CDT
Dear Friends,
It is quiet here. The colds are getting better. Maddie was a little tired today. She took a two hour nap this morning but was perky by dinner and keeping us entertained with her sense of humor. (Think songs about trick or treat, feet and underwear)
Max is having good days at school. He is not even close to as tired as he was last year. He doesn’t complain and even shares some things about his day.
Sam keeps busy playing with Pokemon, talking about Pokemon and watching Pokemon. He is at the same age Max was when he went Pokecrazy. It is funny how those things happen.
Tomorrow is doctor day. We don’t need to give blood though. They get the week off.
I have finished the partner newsletter. I am going to take it to the printers tomorrow. I will have it in the mail by the end of the week. I have to admit it took me longer than I had anticipated. I fought with the computer several times but came out victorious.
We go back to Duke on October 16th. All three kids will have appointments and we will be busy. We are really hoping it stays a week long visit and nothing new arises.
There is so much for which to be thankful . We are feeling pretty blessed.
Love,
Jane
Sunday, September 26, 2004 7:20 PM CDT
Dear Friends,
We had a really nice weekend. I went to my 20th (yikes!) class reunion last night. It was a lot of fun. I graduated with some really nice kids who have turned into really awesome adults. Jeff stayed with the kids. They had fun swimming and playing games.
When we were in North Carolina, Dr. Kurtzberg okayed Maddie getting her ears pierced. I took the kids to Mt. Pleasant today. We met up with Joanne and took Maddie to the store. In true Maddie style, she barely blinked when they put the earrings in. She is so brave and looks soooo cute! I think with the lack of hair, she is enjoying having such girlie ear lobes. Max wanted to pierce his tongue, but that wasn’t about to happen.
We had visitors today. My Grandma, my aunt Joyce and her friend came over to visit. It was so nice to see them and so good for the kids.
We hope you all had a great fall weekend.
Love,
Jane
Friday, September 24, 2004 8:08 PM CDT
Dear Friends,
We had such a nice ending to our week. We were the grand marshalls of the homecoming parade at Central Montcalm. We rode around the football field on the back of a truck and the kids had a great time. We were even able to watch the first half of the game from behind the endzone.
We agreed to be the grand marshalls thinking it would be good for the kids. I think it was really good for all five of us. We were all together, back in the swing of things. It just felt really right. Thanks, everyone.
Love,
Jane
Wednesday, September 22, 2004 5:58 PM CDT
Dear Friends,
This may be a strange entry. I am just going to keep typing and see where it goes.
I commented several times this weekend about how happy Max is. I was telling my Grandma, my sister, my friends. He is really laughing a lot and having a good time.
Tonight he was doing physical therapy in the basement after school and I could hear him crying. Jeni, our therapist, came up and got me. She said he was crying and upset and she couldn’t understand what he was saying.
I went down and asked him why he was crying. “I’m mad. I don’t like how I look.” I looked up and saw the new large mirror we had put up against the wall for therapy.
The next couple of sentences were: “I want to walk.” “I don’t want to have MLD, metachromatic leukodystrophy.” It is funny how with all his speech problems metachromatic leukodystrophy can roll off his tongue.
I talked with him about how much he has improved. I reminded him that he wasn’t going to get worse. The transplant has stopped the disease. I talked with him about how we both had a job. His was to work hard. Jeff and I (with lots of help) would keep researching and pushing until something medical can help too.
I know. I know. It seems sad. Doesn’t it? Ask Jeni. She had big ole tears in her eyes. There were a few in my eyes too. But this is really a break through. I think Max needs to get mad. He needs to fight. He needs to believe.
100
Just for the record, the night ended with all of us in the pool. Max was laughing, and laughing, and laughing.
Love,
Jane
Monday, September 20, 2004 4:40 PM CDT
Dear Friends,
We have had a couple of busy days. Yesterday Jeff came home from his day of football fun. We just stuck around the house and watched the Lions, played games, cleaned up.
Last night around midnight Maddie started throwing up. It lasted a few hours and she felt better in the morning. I am not sure what it was all about. We’re watching her closely and hope she feels good. Sam is still very congested.
Today Jeff and Max went to school. Maddie and Sam started their homebound school today with Mrs. Helms. (aka Corby) They said the pledge, read stories and had a great time. They are very excited to work with her. Thanks Corby for saying yes.
Max has been doing his therapies at school each day. It works out so well for him. I really miss the therapists though. The only one I get to see is Jeni when she comes to do physical therapy with Sam and Maddie. They are all so nice and do such a good job with Max, Maddie and Sam.
We have had dinner. We are watching some TV. Max has done his homework. Maddie and Sam are saving theirs for tomorrow. We hope you are all having a peaceful night.
Love,
Jane
Saturday, September 18, 2004 7:50 PM CDT
Dear Friends,
We have been enjoying the weather. Today Max, Maddie, Sam and I headed to Grandma and Grandpa Strawberry’s house to celebrate Aunt JoJo’s birthday. We enjoyed seeing the cousins and riding the golf cart around the spooky woods. It was a beautiful fall day. Happy birthday to Joanne. We also forgot to mention that earlier this month Uncle Don and my Grandma had a birthday too.
Jeff, meanwhile, probably had a great day. He left this morning to see U of M play football and then went to Lansing to see Michigan State. Football, Sun and great friends – I can’t wait to hear about it. I know he is having fun. He certainly deserves every minute of it.
We hope you are all enjoying the weekend. Our three kids laughed a lot today. Thank you, God.
Love,
Jane
Thursday, September 16, 2004 5:12 PM CDT
Dear Friends,
We continued to be spoiled. Everyone has been so nice to us - help in the yard, meals brought in and I forgot to mention that Marcey Barber cut Sam’s hair again this week. He looks so good.
Maddie and Sam have been keeping busy. They have had physical therapy the past two days. We all seem to be getting colds in this house though. Sam woke me up last night around 11:45 with a terrible croupy cough. We started the nebulizer right away. I was still worried. We took him to Sheridan Hospital for another treatment, a shot of hydrocortisone and they started him on an antibiotic. He still sounds croupy but with the nebulizer treatments he should be improving. I am sure Maddie is next.
Max is happy but tired from four days of school this week. His language is really improving. His speech is clearer and he uses such good vocabulary.
Aunt JoJo came over after school today. The kids just light right up. They have been playing Bingo and taking golf cart rides. They have had a good time.
I think we will all be in bed early tonight.
Love,
Jane
Tuesday, September 14, 2004 6:30 PM CDT
Dear Friends,
We have had a couple of really good days. Maddie, Sam and I have been playing around the house. I have also been working on compiling addresses for the partners and hope to have a newsletter out by the end of this week or early next week.
Maddie continues to feel well. It is so good to see her so happy and active. She and Sam have been playing together a lot.
Jeff and Max have had two good days at school. Max is happy about school and seems to feel really comfortable.
Marcia and Don (aka Grandma and Grandpa Up North) came down today to see the kids. The kids are having fun and Maddie and Sam have played lots of games. Marcia and Don watched the two little ones while Jeff, Max and I went to the open house at school. Jeff went as a teacher and I was able to go as a parent. I’ve never done that and it was wonderful.
Many of you may not know, but we periodically get dinners delivered by some wonderful cooks in the community. Tonight we had another great meal. Thank you, Meals on Wheel’s angels.
Love,
Jane
Sunday, September 12, 2004 6:03 PM CDT
Dear Friends,
It was a beautiful weekend. All three kids are healthy and well. We can’t ask for much more.
I am going to post all the MLD Caringbridge sites from the other people we have met along the way. Check them out if you are interested. (These are all children, but we can’t forget that it is also an adult disease). For being such a rare disease, there sure are a lot of sites. We could list just as many Krabbe sites and a few ALD ones too. I am so glad the two fellows in North Carolina will be helping to make a difference for all leukodystrophies. This is all thanks to you supporters.
Speaking of the fellowships, I will start the newsletter this week. I am anxious to share what is happening and tell you about the two fellows.
We hope you all had a good weekend.
Love,
Jane
www.caringbridge.org/nj/lucastheshrimpeater
www.caringbridge.org/nj/anthonyt
www.caringbridge.org/page/maddigan
www.corylewis.blogspot.com
www.caringbridge.org/wi/geissermld
www.caringbridge.org/tx/joinerboys
www.caringbridge.org/ca/emma
www.caringbridge.org/ca/mcgregormld (Emma has two websites)
www.caringbridge.org/tx/nathan
If anyone knows of any other Caringbridge sites, please let me know. Thanks.
Sunday, September 12, 2004 5:01 PM CDT
Dear Friends,
It was a beautiful weekend. All three kids are healthy and well. We can’t ask for much more.
I am going to post all the MLD Caringbridge sites from the other people we have met along the way. Check them out if you are interested. (These are all children, but we can’t forget that it is also an adult disease). For being such a rare disease, there sure are a lot of sites. We could list just as many Krabbe sites and a few ALD ones too. I am so glad the two fellows in North Carolina will be helping to make a difference for all leukodystrophies. This is all thanks to you supporters.
Speaking of the fellowships, I will start the newsletter this week. I am anxious to share what is happening and tell you about the two fellows.
We hope you all had a good weekend.
Love,
Jane
www.caringbridge.org/nj/lucastheshrimpeater
www.caringbridge.org/nj/anthonyt
www.caringbridge.org/page/maddigan
www.coreylewis.blogspot.com
www.caringbridge.org/wi/geissermld
www.caringbridge.org/tx/joinermld
www.caringbridge.org/ca/emma
www.caringbridge.org/ca/mcgregormld (Emma has two websites)
www.caringbridge.org/tx/nathan
If anyone knows of any other Caringbridge sites, please let me know. Thanks.
Friday, September 10, 2004 7:25 PM CDT
Dear Friends,
I remember telling friends before we left for our ‘one week’ visit at Duke, “I just want to hurry up and get it over. “ I never imagined it would last almost two months. We left with Maddie not feeling well. While there, it turned really miserable for her, and we left with a girl who feels great. Thank you, God.
It feels sooooo good to be home. Sam ran up to his bedroom and you would have thought that every old toy was a brand new one. “Look, Mom. Froggy. Do you remember him, Mommy?” Maddie just kept smiling. I actually stood in the kitchen and couldn’t think where the towels were. The trip was long but uneventful and worth every minute.
I can’t explain how grateful I am to have all three of my kids at home. It is really a fluke we caught both the gall bladder and the EBV with Maddie when we did. It could have been worse and her body really could have been put in a scary situation.
Max and Jeff had a good day at school. I think Max is going to have a great year. Sam and Maddie played and played - both indoors and outdoors. It was a beautiful day. I spent a large part of the day putting things away.
Dr. Kurtzberg and our wonderful Sue are traveling to France for a conference with the Myelin Project. Please pray for safe travels for those two. I hope they hear about great advances in repairing damaged myelin.
Love,
Jane
Thursday, September 9, 2004 6:05 PM CDT
Hello.
We've talked to Jane a few times today. The troops left about 7 am. They got a call in Virginia from Duke that Maddie's test came out fine and to keep driving! The last I talked to them they were in Ohio. I can't believe they're finally coming home. It's been a tough two months, but we made it, again. Thank you to everyone who has helped out. I've said it before, a lot of good people out there! Thanks.
Jeff
THEY MADE IT!!!!!!!!
Wednesday, September 8, 2004 4:56 PM CDT
Dear Friends,
Maddie woke up throwing up at 6:00 am. That lasted a couple of hours. We gave her some extra hydrocortisone and she felt a lot better. The bacteria culture they drew yesterday is still negative. The plan is still to leave tomorrow. We are packed and ready.
Jill hasn’t taken many long road trips and is up to the challenge. I just hope the kids travel as well as they usually do.
Tomorrow we might be home. Thank you, God.
Love,
Jane
Tuesday, September 7, 2004 6:25 PM CDT
Dear Friends,
This weekend was a busy one for family. Jeff, Max and Sally flew in Friday. Mom flew out Saturday. Jill flew in Monday and The trio flew home today. Now Jill and I are handling things for our last few days in Durham.
Today was long Tuesday clinic day. Sam received his hour and a half IVIG med. He gets this once a month. Maddie received her four hour med for the EBV. We met with Dr. Kurtzberg and Sue. They took a blood culture from Maddie to recheck the gram negative bacteria she had earlier. They said we could leave on Thursday if that test comes back okay. So that is the plan. We are tentatively planning on leaving the apartment on Thursday and getting home later that night.
Maddie is feeling well and looking cute. Sam is having fun and keeping busy. Jeff and Max and Sally made it home safely. The boys are getting ready for school tomorrow.
We hope you all had a great day.
Love,
Jane
Sunday, September 5, 2004 5:59 PM CDT
Dear Friends,
It has been a good weekend here in the Trimper apartment. Yesterday we had a quiet day. Mom had to leave in the afternoon (Thanks, Mom). Maddie and Sam will miss their Bingo partner. The kids had fun playing new games with Aunt Sally. She brought one called Slamwich that they really like. We all went to the pool for awhile.
Today was beautiful here. We spent some more time at the pool. We have to go late in the day and avoid the sun. Maddie and Sam are still on a med that requires avoiding UVA rays and the chemo will have affected them forever when it comes to sunscreen. It also wipes Max right out.
We had a nice dinner tonight which included corn on the cob. Maddie lost her two front teeth while eating it and Max lost a molar. It was a three tooth dinner. Very exciting. Maddie’s have been wiggling for so long and she was happy to see them go. I must say I didn’t think she could get any cuter but she is. Sam is very bummed and can’t wait to start dropping teeth.
Hope you are all enjoying your weekend. It sure has been a nasty one on the news. Between the hurricane and terrorists there are many many prayers needed.
Love,
Jane
Friday, September 3, 2004 6:46 PM CDT
Dear Friends,
Sam and I went to pick up the trio (Jeff, Max and Sally) at 10:00 this morning. It is so good to see them. Their flight went well and Max slept for most of it. He even slept through one of the landings. When we got back to the apartment, Maddie’s face was absolutely beaming. It feels so good to be together again.
Jeff and I took Maddie ot the clinic to get weighed and have her blood pressure and temperature taken. She looks good. She has lost a little weight but Sue says she is not concerned. Sue is very happy with how Maddie is doing. If we haven’t mentioned it lately, we really appreciate Sue and really love that lady.
Sam went swimming, Maddie took a nap, and Max watched some TV. Jeff and I went out for dinner. Sally and Mom played games with the kids.
We are all tucked in now. All three kids in pajamas and relaxing. It feels good and we can’t help but feel very blessed.
Love,
Jane
Thursday, September 2, 2004 7:28 PM CDT
Dear Friends,
Today was another quiet day. Thank you, God. We took blood in this morning to the lab and all her reports looked good. She is feeling well and having fun.
Tonight Emma and her mom Sam came over for dinner and a visit. you would all be thrilled to see Emma. She is doing so well and is a vision of hope for transplant patients with symptomatic leukodystrophy. We had such a nice time with them and are so glad they came over while in town for their check-ups.
Max and Jeff went to Williamston to stay with Sally and Bill. Their flight leaves at 6:00 am and we are so anxious to see them and Aunt Sally. Please pray for safe travels.
Love,
Jane
Wednesday, September 1, 2004 5:46 PM CDT
Dear Friends,
Another quiet day. We didn’t need to draw labs or go to clinic. Maddie continues to feel well.
We did more crafts, played more games and then the four of us went to the pool late in the afternoon. I carried Maddie around in the pool so her line didn’t get wet. Then she played catch with Grandma (There record was 56 consecutive catches). Sam and I played surfing and water skiing. Both games involve me pulling him around the pool and him laughing really hard.
Max and Jeff had school today. It sounds like both of them are doing well. Marcia and Don came down tonight to get their vehicle back (Thanks for letting us use it!!!). They brought dinner and were having a nice night.
I received a package from my Basement Bunch. Thanks ladies. I really appreciate it. You are one special group. Thanks Deb for the books you had sent earlier. I am so glad we have gotten to know each other.
Thanks too to the Barbers. You are so generous.
Hope you are all doing well. Halloween stuff is out in the stores. I love that holiday and it makes me even more anxious to get home. Max was diagnosed in the fall and I never thought I would enjoy it again. Things have really turned around in two years. Scarecrows, football, and 3 little trick-or-treaters - I love fall.
Love,
Jane
Tuesday, August 31, 2004 7:25 PM CDT
Dear Friends,
Today was Dr. Kurtzberg clinic day. It is usually a long one but we were out of there by 4:00 today. Maddie’s labs looked good. Her Epstein Barr virus test results came back. Anything below 50 is normal. Maddie was 0.2. That virus is gone! Dr. Kurtzberg thinks we need about two more weeks here. They are taking Maddie off of TPN tonight and off her IV antibiotic on Friday. Maddie looks and feels really good.
Sam and Grandma had fun at the apartment. They went swimming and did more crafts.
Max and Jeff had a good time at school. Both of them are tired again. Since we need to stay longer they are going to fly down with Aunt Sally on Thursday or Friday and stay for the long weekend. Aunt Jill will come down for the next week. We are so blessed with family and friends who are so willing to come and help.
Thanks you to the parent for the guestbook entry. It really touched me deeply.
Love,
Jane
Monday, August 30, 2004 5:17 PM CDT
Dear Friends,
The first day back to school. I spoke with Jeff and Max earlier and they both sounded tired. Jeff said Max had a good day at school. He enjoyed himself. He went to Cheryl’s (our daycare provider since Max was 4 months old) in the afternoon. He had fun there too.
We had another relaxed day. We didn’t send in labs today. Maddie just had to go in to get her patch changed. We are switching from half a patch to a fourth. The rest of the day was full of crafts. We made magnets, key chains, frames, pictures, etc. Thank goodness they sell stick on felt pieces already precut. I am not talented in art or crafts at all.
Grandma continues to play Yahtzee, Dominoes, and Bingo. Go Grandma!
We hope you all had a great day. Welcome back Anna. We missed you.
Love,
Jane
Sunday, August 29, 2004 10:50 AM CDT
Dear Friends,
It has been a lazy, quiet weekend in Durham. It feels good but makes time go a little slower. We aren’t complaining. We’ll take quiet any day. Maddie didn’t have to have labs done yesterday and today’s look great. Her hemoglobin is actually a little higher than it was 2 days ago. Everything else looked good too. We need to take her in to get weighed.
Due to the lack of medical excitement, we are having to fill our time in other ways. Sam and Maddie are making frames, door knockers, key chains, magnets and mugs. Grandma has played at least 23,476 games of Bingo and I am becoming an UNO whiz. Thank goodness there was a special Rugrats All Grown Up on last night.
Jeff and Max are filled with first day excitement. Well, maybe not excitement but they are preparing themselves. Backpack is packed, clothes are ironed, new markers are ready. I am sure they will have a crazy morning.
Here’s to the beginning of the school year and light at the end of this tunnel.
Love,
Jane
Friday, August 27, 2004 7:43 PM CDT
Dear Friends,
I am getting a later start so I’ll make this one a short one. We had a good day in Durham. Maddie needed to go to clinic to get the pain patch changed. She didn’t need any IV meds or blood. It was a quick trip. She has gained 7 pounds since going on TPN. Sue decided to start cutting the TPN in half. As long as Maddie doesn’t make any big changes in her weight they’ll keep her there. All signs look good today. They will continue to keep and eye on her. I am keeping watch on her stools and they all look good. Boy, am I having fun!
Sam continues to hang in there. He is such a good sport. He and I went to a party with the Krabbe families. It was to celebrate Ashleigh’s one year post transplant anniversary and Ryan’s going home. It is always great to spend time with such nice people. Thanks Michelle for including us.
Max went to Chesaning with Aunt JoJo today while Jeff worked. They started decorating the woods with spooky things. We will ride the golf carts through the woods all fall. It is a lot of fun for all the grandkids. Aunt Sally and Jackson were there too. It sounded like a fun day. They even swam in the pool. Michigan must have regained it’s summer weather.
Jeff spent two days getting his room ready to start the year at school and having teacher inservice. The beginning of the school year is exciting but a lot of work.
Have a great weekend.
Love,
Jane
Thursday, August 26, 2004 11:45 AM CDT
Dear Friends,
Speed Racer and Max made it safely home last night. They hit some construction and a big rain storm but were happy to be home. This morning they both sounded tired. Jeff worked at school all day and Grandpa Strawberry came and took care of Max. Thanks Grandpa.
Maddie had two normal stools yesterday. No blood. I never thought poop would make me so happy. It looks like the problem in her gut is clearing. Her labs were good both yesterday and today. She didn’t need to go to clinic yesterday but today she needed to run in and get a new line in her port.
Grandma is playing Bingo like a champ. Both Maddie and Sam are keeping busy playing games, doing activity books, etc. The better Maddie feels the smaller the apartment seems. They are both handling it very well though. Sam went with Grandma swimming at the pool yesterday. We have had beautiful 80 + degree weather. Maddie can’t go in the pool with her port accessed (She has an IV line hanging from it. It is just like their old lines that hung from their chest. The only problem is it has to replaced once a week - thus our visit today.)
We hope all is well with you. Best of luck to our teacher friends in Central Montcalm as you prepare to go back to school. I wish I was with you but know I will be soon enough.
Love,
Jane
Wednesday, August 25, 2004 8:31 AM CDT
Dear Friends,
Jeff and Max left this morning at 5:30 am. We miss them already. Max was wide awake, laughing and smiling. Jeff called a little while ago and already has a speeding ticket in Virginia. Hopefully it will be a one ticket trip.
Maddie’s clinic visit yesterday went well. All numbers point to improvement. Her CT scan showed that the lymph nodes were ‘markedly’ improved. That is radiology talk for good improvement. The fluid around her heart was also ‘markedly’ improved. It is now a waiting game, keeping the course of treatment and waiting for her to recover. Dr. Kurtzberg is guessing we will be here another 2-3 weeks. We are waiting until there are fewer blood infusions and better looking stool.
Her appetite is really pretty good. Her current meal of choice is spaghetti with meatballs. She eats it for breakfast, lunch and dinner. She is also receiving TPN (nutrition in a bag through her line) for 12 hours at night. She has gained 4 pounds. She looks better and is feeling stronger.
Maddie is also on an antibiotic through her line. This is to protect her body from getting an infection with the blood in her stool. All in all Maddie’s medical maintenance is pretty time consuming and I think I am now a certified nurses’ assistance.
Sam is keeping busy and is very funny. He is starting to ask when we can go home but is overall pretty content here.
Thanks for checking in and caring so much.
Love,
Jane and gang
Tuesday, August 24, 2004 7:50 AM CDT
Good Morning.
A quick update. We took Jane and Maddie to clinic around 2pm. She had another CAT scan done. We'll hear the results today and we’ll meet with Dr. Kurtzberg today at clinic. Yes, Tuesday clinic. It will be a long day. Maddie needed blood yesterday. Her hemoglobin was just a little low. She had another good day.
Claude (Jane’s mom) came in last night. A new fresh face and attitude for the kids. They were happy to see her and of course she brought raspberries from the farm. She will stay about a week or so. Then we’ll see where we’re at. We hope to find out today about a tentative time schedule. As of today, Max and I will head out tomorrow. I hate to leave them again. I hope they come home soon.
Time to run blood. Have a good day.
Jeff
Sunday, August 22, 2004 6:11 PM CDT
Hello.
We had a good weekend. The doctors gave us a good report Saturday on Maddie. They were real happy with what they saw. Her hemoglobin stayed up and all her other counts looked good. Two days in a row without getting blood. She had Sunday off of clinic! I know this may not seem like a big deal to some, but this is the first day off they had in...I don’t know. It was also just peace of mind for Jane and me. One day of not worrying about her and enjoyed her company. We still continue to take one day at a time. We loved today!
Jane took Max and Sam swimming tonight. Maddie played many many games today. She is now watching her favorite show on tv. This has been a good day for all of us. Again, one day at a time.
Claude (Jane’s mom) is coming down tomorrow. She’ll spend some time down here. If Maddie continues to improve, Max and I will head out Wednesday. This is not easy leaving here. People ask isn't it nice to be home, "No. Not without everyone." I start school Thursday and Max starts on Monday. So we have a lot to do before school starts. That is the plan for now. Things may change, but Maddie WILL continue to improve!
Jane may add more later.
Have a good week.
Jeff
Saturday, August 21, 2004 7:33 PM CDT
Dear Friends,
Each day can contain great ups and downs. Maddie had diarrhea through out the night and threw up first thing this morning. She slept until noon. We were very worried about her. When she woke up she was feeling better. We went to clinic and got some IV magnesium and a med to help with clotting. Her hemoglobin was above 9 and she didn’t need to get blood today. That was good news. We think the clotting med is helping. She felt well enough to do an art project with the art teacher, play cards, eat spaghetti for dinner, and watch a movie with the boys. It is amazing how in one day you can have intense worry and joy. What will tomorrow bring?
We all went to clinic together this afternoon. Sam also did an art project. Max and I did some work with markers and paper. I think things like that really frustrate him. Who can blame him? Right now all three are watching Disney. We continue to thank God for how far we have come in almost two years. We pray for 100%.
We will keep you updated.
Love,
Jane
Friday, August 20, 2004 7:50 PM CDT
Dear Friends,
Between meds, pumps and clinic, it has been crazy busy here. Maddie continues to be a little bit of a medical mystery. All of the problems she has had seem to inter relate and many of the meds have side effects that we keep trying to solve with more meds. Her most current problem is blood in her stool. There is quite a bit. It is a toss up regarding the cause. It is either GVH or Epstein Barr (and it’s med) . Time will tell. They will closely monitor her. She was in a good mood today and had more physical energy. This is most notable in her walking. She played cards and colored at clinic.
She has needed a blood infusion the past three days and may need one again tomorrow. There really doesn’t seem to be an end in sight to our visit but we know she is in under good care. If I had to guess tonight, I would predict another month in Durham.
Sam and Max went to Toys R Us today with Jeff. they enjoyed being out, even though it is very hot. Jeff says it is too hot to go swimming. Michigan could use a little of this heat. Jeff has been doing some PT with Max. Sam has been playing all over the apartment.
Have a good weekend. We’ll update again on Sunday.
Love,
Jane
Fellowship Partners,
We intended on getting a newsletter out by the end of the summer. We are sorry for the delay and the update will come this fall. The money has been sent and we were able to meet the doctor who is working on the MRI’s and the development of leukodystrophy patients. We haven’t met the other fellow who will be working on the program with stem cells and the spinal cord. Dr. Kurtzberg will be back next week and we’ll learn more from her. Thanks.
Thursday, August 19, 2004 5:09 PM CDT
Dear Friends,
Maddie has had her ups and downs. Her main issue right now seems to be hemoglobin. She was at a very low 5.3 yesterday. She received a transfusion yesterday and again today. They think it is because of the IV drug she gets for Epstein Barr. I would tell you the name of it, but I just can’t seem to remember it. She had a rough day yesterday (understandably with that low of a hemoglobin). Today was a bit better. She also started the IV nutrition last night.
Sam and Max have handled this whole thing very well. They stayed with Jeff during the day and are very easy to please. I am really proud of all three kids.
I have decided not to start the school year. It is an easy decision considering we don’t even know when we will be able to leave. Jeff and Max will go home next week and get ready to start the school year. I hope to be back to work in October.
That is really about it. Please continue the prayers for Maddie.
Love,
Jane
Wednesday, August 18, 2004 12:38 AM CDT
Dear Friends,
Yesterday was a big clinic day. We got there a little later than usual due to Maddie throwing up over and over. Poor girl. We aren’t sure what the problem is GVH, meds, etc. We’re trying to sort it out this week. I even hate to type this but she hasn’t thrown up this morning yet. It is 9:30. I know I have just jinxed us.
At clinic, she saw the doctor, received her EBV med, her GVH med and took a nap. Her weight was down a half a pound and we are going to start TPN this morning. (Nutrition in a bag that she will get through her port)
Sammy will give blood this morning. Maddie’s hemoglobin was low again this morning. So they needed to wait to give blood before she started the TPN. Then the boys will hang out at the apartment until we are done.
That is really all there is to say here in Durham. We hope Maddie continues to improve so we can see an end to out visit.
Love,
Jane
Tuesday, August 17, 2004 7:54 AM CDT
Dear Friends,
Sorry we didn’t update last night. I am not sure where the time went. Actually I do know, Sam, Max and I were at the pool. :)
We really didn’t do anything special yesterday. We were contemplating the zoo but decided not to go which ended up being a good thing. Maddie was not feeling great through out the morning and took a long nap in the afternoon. She has been throwing up each morning. As long as it stays just in the morning they aren’t too concerned about GVH. It could be the meds, the virus, etc.
Something we haven’t written about is Maddie’s physical state. She is really weak again from the month of little activity. She is also very thin. She is 8 pounds lighter than when she had the transplant. She eats some every day but isn’t back to her usual intake. Even if her immune system was normal, Maddie couldn’t have started school at the end of the month. She is getting a little better each week. Bring on the physical therapy!
Yesterday we ran some errands, walked around the apartment complex and went swimming. It never ceases to amaze me how every time we come to Duke we meet more great people. We sat at the pool and talked with another MLD parent and another family here receiving training at Duke. It is so amazing at such a difficult time there are such nice times mixed in too.
Today we head to clinic. Maddie will get her 4 hour IV med. Sam may need to go and give blood.
Thanks for your prayers. We pray and believe for 100% for all three kids.
Love,
Jane
Sunday, August 15, 2004 7:09 PM CDT
Dear Friends,
Well, we said good-bye to Aunt JoJo this morning. Although her flight was an adventure and her luggage is lost, she is home safely. She was a huge help and we miss her already. Thanks, Joanne.
Today Maddie and I went to clinic again. Her hemoglobin was below 8 and she needed to get blood. We hope the hemoglobin drops slowly and then stays steady. Maybe today was our last blood infusion. She also received some potassium. They also placed a new pain patch on.
The boys took a drive, went around the apartment complex, came to see us at clinic and hung out in the apartment.
No clinic tomorrow. We are hoping to do something as a family. We will see what kind of a mood we are in.
Love,
Jane
Friday, August 13, 2004 7:25 PM CDT
A really quick additional update: Jeff and Max made it safely to North Carolina. Yay. It feels good to be together.
Dear Friends,
We had lots of good news at clinic today. When they do a blood culture for Epstein Barr Virus (EBV), a 50 would be normal or inactive. When Maddie received a positive blood culture for EBV her number was 500. Last Friday they did another blood culture to check on it and her report came back today of 95. She is making big gains. She received another dose of Ritaxin for the EBV. This is not a cure for EBV but helps build up your b cells to fight against the virus. I hope I have all that right.
She also held her hemoglobin today. She was 8.4 yesterday and today. That is the first time since her gall bladder came out that she didn’t drop. Her platelets and white blood cell count were also up. Her potassium and magnesium were in the normal range also. That is really rare. We have no clinic tomorrow. We’ll draw blood again on Sunday. Maddie was perky again today but got irritable at night. She is tucked into bed.
Sam had fun with Aunt JoJo today. They hung out in the apartment most of the day. We will miss her when she flys home on Sunday.
We are anxious to see Jeff and Max tomorrow. Hopefully they will beat the hurricane. Although Hurricane Sam did blow through the apartment earlier spilling ice cream, red Gatorade and popcorn all over - not to mention trains, Pokemon and little plastic Hamsters. 5 is so fun.
Max and Jeff ran errands, saw some friends, and dropped off Kippy. They have had a busy week but got a lot done.
We hope you all have a great weekend.
Love,
Jane
Thursday, August 12, 2004 4:35 PM CDT
Dear Friends,
We finally have our Internet hook up in North Carolina. It feels good to be back on line. I have especially missed checking up on all our Caring Bridge Friend’s websites.
Maddie had a shorter day at clinic. She got some potassium and magnesium. Her hemoglobin continues to slowly drop. She will probably get blood tomorrow as well as her Epstein Barr med. She is perkier each day and her skin is looking much better. Everyday we get more glimpses of our old Maddie. It feels great. Many times people ask me how I am doing. This I know for sure: When the kids are good, I am good. When the kids are having trouble, I am too. Typical parent stuff.
Sam is doing very well. He plays a lot and is handling everything very well. I am very proud of him and so surprised by how much he has grown up this past year.
We miss Max and Jeff and are counting the days til they will be here (2). Maddie is very close to her Daddy and will perk up even more. I need to get my hands on Max. I miss him terribly.
The weather here is warmer than Michigan. (Sorry, friends.) But it is pretty lousy. It rained cats and Blue Devils here. The tropical storm should come through tonight followed by the hurricane tomorrow.
Our apartment is very nice. It is like the last one but with more living space and one less bedroom. A past tenant left two hummingbird feeders out on the balcony and we are enjoying watching the birds.
As we were driving the other day, Sam was looking up at the puffy white clouds and asked me what I thought Jesus and God were doing. I wasn’t sure how to answer and asked him what he thought. After a short pause he said, “I think they are carrying people.” They sure are, Sam.
Love,
Jane
Wednesday, August 11, 2004 6:43 PM CDT
Hello.
Good news from NC! I talked to Maddie on the phone for the first time since I’ve been home. Which means she had a good day. It was great to hear her voice. Jane said her GVH rash is looking much better. We’ll take one good day! Hope tomorrow is as good or better. They had the day off from clinic. It sounds like they had a relaxing day. Jane took Sam to the toy store for being a big help down there. He’s been great.
Carl, Cindy and Jenni came by today. Carl and Cindy are going to stay the night. Max is having a good time. We also had a huge feast delivered to our house tonight. We ate well tonight (thank you).
Not much else to report, just trying to stay warm in the cold Michigan weather. What a summer.
Jeff
Tuesday, August 10, 2004 6:43 PM CDT
Hello.
I just got off the phone with Jane. They were just heading home at 7:40 pm. Yes, another long day at clinic doing meds. Dr. Kurtzberg wasn’t in today, but the doctor who looked at Maddie said she looked good. Her GVH rash looked better. It sounded like Maddie has had enough of the clinic... They said they may have the day off tomorrow. They all deserve a day off.
The gang moved into an apartment last night. This will help save some money and their sanity. I think they’re all very happy to be out of the hotel. I want everyone to know who helped or bought something at one of the fundraisers for us, that because of you, we are able to make this medical “bump” manageable financially. Many people could not have done this and not do what was best for their child. We are very lucky to have three great small towns behind us and many more from far away. Thank you.
Max and I had another busy day. He had OT and PT today. He did better than yesterday and was real tired today (stayed up too late). I was busy taking care of school stuff, insurance stuff, banking stuff... Fun stuff! A good friend came by to mow the lawn today. Thanks!!!!! Max and I have had several visitors this trip home. It’s been nice to see people we haven’t seen in a while. My sister Cindy and her husband Carl are coming down for a couple of nights. My sister Jenni is also coming to visit. Max is excited to see them. Our plan is to finish out the week with therapy and head back down. But, as most of you know by now, that plan may change any time.
Speaking of fundraisers, a friend of Jane’s from Chesaning had her fundraiser a couple of weeks ago in Chicago. It sounded like a good time and help to raise money for the fellows in North Carolina. Thank you Beth (and helpers)!
Both fellows have been hired and have started to do their thing. We mentioned Jane met one of them a few weeks ago. We haven’t met the Duke fellow yet. Maybe soon. Time to put the big guy to bed.
Another good friend stopped over tonight. Thanks.
Good day.
Jeff
Monday, August 9, 2004 4:49 PM CDT
Hello.
Well, another long day at the clinic/hospital for Maddie and Jane. They put Maddie on another antibiotic (in her line/twice a week) to help with her GVH rash. It seems to be getting worse, but still in control. Maddie had another ultra sound on her stomach today, that looked good. She hasn't been eating much again. Both conditions, GHV and Epstein Barr are very serious and they're watching her closely. She will see Dr. Kurtzberg tomorrow in clinic. We hope she has some positive news. This has been a tough month on all of us. I think Max is real sick of driving from MI to NC and back again. Maddie (and Jane) want to come home so bad. Joanne sounds pretty good. Sam, well, he could stay forever. He's having a great time. Like I said before, I wish I could be five again.
Back in Michigan, Max has started therapy again. We haven't worked with him much (a whole guilt trip) because of everything going on. He was pretty "toned" when Jill worked with him. She did say he relaxed and was bending his legs better. I try to work with him between phone calls and doing things. Things pile up when you leave. Busy day.
So, hopefully we'll hear some good news tomorrow and start a new day. Keep pushing on!
Jeff
Friday, August 6, 2004 3:35 PM CDT
Saturday Evening: A quick update. Max and Jeff drove home today. They will spend the week in Stanton, doing therapies, taking care of bills, etc. They made excellent time - under 12 hours. Maddie had to get an infusion of blood today. She has been sleepy from both the patch and her Benadryl pre-med.
Dear Friends,
Well, we have figured out why Maddie's stomach is hurting. She had a blood culture come back positive for the Epstein Barr virus. This is not gall bladder related. They are treating it with an IV drug that she will get twice a week for two weeks and then once a week for two more weeks. Our stay in Durham has been extended for at least three more weeks. Ugh!
We have contacted our apartment group and will be moving into an apartment on Monday.
The only other treatment for Epstein Barr is to get rid of Maddie's immune suppressant meds that she is on. These are the ones that prevent Graft vs. Host Disease (GVH). I don't need to explain why this has us concerned. She currently has skin GVH. This in itself is not a worry. She will have to be monitored carefully. Because the drugs have been dropped, Maddie's T-Cells will be able to fight the virus. Epstein Barr can be very nasty for transplant children, but things do not look life threatening for Maddie. Dr. Kurtzberg did mention they have only had 8 cases here with transplant kids and Minnesota has had 5.
As transplant parents, we always know something can happen at any time - especially the first year. We have said many times that we take things day by day. We also always fear when one medical problem leads to another, leads to another We have seen too many kids start the beginning of the end. We aren't there yet. Dr. Kurtzberg has told us she will tell us when to worry and now is not the time. But please know that Maddie has a couple of mini battles before her. We aren't worried but we are concerned. We pray for healing.
Love,
Jane and Jeff
Thursday, August 5, 2004 6:50 PM CDT
Dear Friends,
Maddie had a good night’s sleep last night. That is her first in quite a while. She wasn’t in pain today and took a couple of long naps. The pain patch is working. Joanne and I took her to clinic today. She received some IV Magnesium. She also woke up with a rash this morning and we have started her creams again.
Jeff and the two boys took a drive and got some ice cream. They went to the pool and hot tub. They are now curled up together watching Pokemon.
Thanks for the prayers.
Love,
Jane and Jeff
Wednesday, August 4, 2004 1:59 PM CDT
Dear Friends,
Hello from Durham. Although we are getting better at ‘hotel living’, we are anxiously waiting to come home. It doesn’t look like it will happen anytime soon. Maddie is still having pain in her stomach and we will be here until early next week. They are waiting for a virus test to come back later this week and she will have another CT scan next Monday. We will meet again with Dr. Kurtzberg next Tuesday and go from there. At clinic yesterday they put a patch on Maddie’s back that contains pain medication. It takes a while to work so last night was rough - as was this morning. She fell asleep at 11:00 this morning and is still sleeping at 2:30. She is exhausted and we hope the patch gives her relief.
There doesn’t really seem to be an answer for why she is hurting. Her tests, scans, etc. are coming back fine. It could be a few different things. All of which just take time to get better. After many long days at clinic, we actually have today off. That has been nice.
Yesterday we did get back the results of Sam and Maddie’s immune studies that were done three weeks ago. Both of them still have weak immune systems and won’t be starting school at the end of August. Dr. Kurtzberg thought it would be three more months. That puts them at a year post transplant and is more realistic than August. We aren’t sure how we are going to work it or what we are going to do. We need more time to think and talk and see what we can come up with.
The boys have been great to have around. Sam plays and plays. Max gets really tired in the heat and enjoys the air conditioning more than the 90 + degree heat. He has been swimming with Joanne and we are going to go tonight when the sun is not so intense.
We aren’t sure of any time line right now. We are taking it day by day.
Thanks for all the great guestbook entries. They really help.
Love,
Jane and Jeff
Monday, August 2, 2004 6:53 PM CDT
Dear Friends,
Maddie received the best medicine yesterday. Daddy! It did me a world of good too to see all three boys and Joanne. They brought energy with them that was much needed. Maddie was walking a little faster today and whining a lot less. She still had a rough night but she didn’t nap at all today and we are hoping she will sleep through the night tonight.
Maddie is still having some tummy pains. They did another CT Scan yesterday and everything looked fine or improved. They are still running a lot of tests and we’ll see how the week progresses.
We canceled St. Louis and will have to reschedule with them. We really didn’t want to do it but the issues with Maddie need to be taken care of first.
Jeff and I went out for dinner tonight and celebrated twelve years of marriage. It sure seems like a long time ago we were newlyweds. I feel very lucky to be married to Jeff. He is an incredible husband, father and friend.
Tomorrow we see Dr. Kurtzberg. It always makes us feel good to see her and listen to her explain things.
Love,
Jane
Sunday, August 1, 2004 7:44 PM CDT
We made it down in record time. It is so good to see Jane and Maddie. The kids were happy to see each other. Back to HOTEL living!!!! We'll update more tomorrow.
Jeff
Saturday, July 31, 2004 4:05 PM CDT
We are heading back to North Carolina. Joanne "volunteered" to go back with us (teaching pays off sometimes). We may head to St. Louis from there, we'll see. We need to get Maddie and Jane back. Once again, thank you to those who are helping us out, again. Mom and Dad, you'll get your car back soon. Happy Anniversary Bob and Claude! Go have some fun! Jeff
Dear Friends,
I thought I would do the update tonight. Things are not going very well here in Durham. Remember how I spoke of having a nervous breakdown at some point. I think it has happened. Maddie isn't sleeping during the night. She alternates between ranting ("I want to go home. This is all your fault.") and whining. She is very unhappy and it is really wearing me down.
Her blood levels have continued to fall this week. They aren't exactly sure why but they think it is due to blood draws (hemoglobin numbers) and infection (white blood cell numbers). She is on three IV antibiotics and she needed to get a blood transfusion today. It is her second one in a week and that has me a little worried but the medical staff here is taking it in stride.
We are spending 8-11 hours daily in the clinic. We are both anxious to get home and we miss the boys terribly.
Please pray that Maddie feels better soon and God gives me a boat load of patience.
Love,
Jane and Maddie
Thursday, July 29, 2004 7:31 PM CDT
Hello.
Not much to report today (good news). Jane and Maddie went to clinic for meds... They sounded good on the phone. We're still not sure when they can head home. In the mean time, we're starting to make plans for St. Louis on Tuesday. Then, after that, we can relax before school starts. What a summer! Joanne took Max and Sam to their cousins to go swimming. Sounds like they had a good time. I got some things done around here. Lots to plan. Max has OT tomorrow, then we have the rest of the weekend off. I think Max needs some rest. He's pretty tired.
Have a good FRIDAY (for those who work tomorrow) and have a good weekend.
Jeff
Wednesday, July 28, 2004 5:58 PM CDT
Wednesday, good news. Maddie is feeling better. She ate some food today and Jane called me from Target at 5:30!!!! Hopefully things will continue. My Mom will fly home tomorrow. Jane and Maddie will finish up down there. Still no time of departure yet.
Hello again.
Another “interesting” day in North Carolina. They went to clinic at 8 am (still there 8 pm) and did blood work. Then Maddie had a ultra sound on her stomach. Then she had a cat scan on her stomach. Between those, she had more fluid infusions. We did get some news today. Her blood test came back showing gram negative bacteria. We'll know more tomorrow when they've identified the bacteria. I’m sure I hacked that up medically, hope Dr. K. isn’t reading this. So, they have an idea what is going on with her. The bad news is she will be getting antibiotic infusions twice-a-day for the next several days. She is still getting fluid infusions. Jane said they could be there another week, or they could head home in a few days. My bet is a week. We plan day by day around here now. Things seem to change by the hour. They will head back to clinic first thing in the morning.
Around the home front, Max a had therapy today. It was good to see him back to work. He did a nice job. Sam had PT and played all day long. I spent most of the day on the phone scheduling things.
Tomorrow, Sam has blood work and Max has three therapies. Busy day for every one.
I hope I got most of the medical things right. I tend to mix things up. Hope you all have a good week and weekend.
Happy Birthday Molly!!!
Jeff
Monday, July 26, 2004 4:51 PM CDT
Hello.
I just talked with Jane on the phone. Nothing much to report. They ran some more test on Maddie today. They did an echo on her heart again to check the fluid. It looked the same as before (good). All her counts looked good. Her FK level was very high. They're going to check why. Maddie is still feeling bad, not eating and drinking. They're thinking it's dehydration because she's still not drinking much. Jane has spent three long days at the clinic. She sounds tired, but hanging in there. They have to go back first thing in the morning. Sounds like Mom has been in and out. Thanks Mom for hanging in there. Jane said she's not coming home until Maddie starts drinking. So we'll see.
Joanne came over today to see the kids and let me get some things done. Lots to do after two weeks of being away. Thanks Joanne! She worked with Max and played with the kids.
Again, I want to thank all the people who helped out while we were gone. The house and lawn looked great. It's good to see Kippy. I have a feeling she was spoiled.
We also want to thank Bob for putting on the Crusher golf outing, all the people who played and donated items. I hear was a good time. I'll be there next year! THANKS BOB!
SO many people to thank (emails, guest book, calls, cards...). Lots of good people out there!
Jeff
HAPPY BIRTHDAY MOLLY!!!!!!!!!!!! Sorry we can't be there (again). One of these days we'll make a cousin's birthday party.
Sunday, July 25, 2004 8:22 PM CDT
Just a quick note to let you know the boys made it home safely. Feels good to be home, but wish everyone was home. Maddie's hemoglobin (sp) was low. It was a long day for them down there. We hope they'll be able to head home Tuesday. Then it's off to St. Louis for five days (we hope only five). Jeff
Dear Friends,
Maddie is still hurting and having a bit of a rough time. There doesn't seem to be anthing specifically wrong but just some all over yuckiness. We took her to clinic today to get fluids and are hoping this helps her a little bit. They also took blood cultures to make sure nothing else is going on.
Max and Sam are being kept busy by Grandma and Grandpa. Sam is having the time of his life.
If Maddie is doing well tomorrow, it looks like Grandpa, Jeff, Sam and Max may head home. (If anyone from Harbor reads the site, please start scheduling:) Marcia and I will look after Maddie until Dr. Kurtzberg can see her on Tuesday and then we will head home also. (We hope!)
I forgot to mention that we were able to see Nurse Emily (Maddie's favorite of all nurses). Emily came to visit when Maddie was still in the hospital. She is a very special nurse and it was so good to see her.
We hope you are all having a good weekend.
Love,
The Trimpers
Thursday, July 22, 2004 4:24 PM CDT
Dear Friends,
Maddie was discharged from the hospital today. She is very sore and disagreeable. Her belly and shoulders are sore. Both are to be expected. We are are thrilled the surgery is over and she did so well.
Max, Sam and Grandpa found a park with a beach today. They had a great time. Grandma did our laundry. Thanks to both of them. We will see how the next couple of days go and will start planning how all 7 of us will get back to Michigan.
Thanks for the continued prayers.
Love,
The Trimpers
Wednesday, July 21, 2004 3:31 PM CDT
Hello all. Good news. Maddie's surgery went well. She came out fighting and demanding (we would expect nothing less from her). She is in her room resting now. Mom and Dad are going to bring Max and Sam over to see her. We are VERY happy this is over. We hope it relieves her pain and she starts eating again. Thanks for all the emails, prayers, wishes... and of course everyone who is helping out at our house and with Kippy. We hope to be home soon. We miss home and Stanton. More info later. Jeff
New pictures tonight. Thanks to Duke 5200 computers!
Tuesday, July 20, 2004 6:35 PM CDT
Dear Friends,
Maddie's gall bladder surgery will be tomorrow at 12:15. We met with Dr. Kurtzberg and Sue today and it looks as if all is ready. We will be very happy when it is over. It looks like we will be staying in Durham until at least Tuesday.
Thanks for the prayers.
Love,
Jane and Jeff
Monday, July 19, 2004 9:59 AM CDT
Dear Friends,
I have a quick minute at clinic and thought I could update on their computer. We really miss ours!
Maddie just had her second echo done and met with the cardiologist. He thought the fluid looked stable and not large enough to warrant draining. He will speak with the anesthesiologist and they will come up with a safe choice of ansthesia. The plan is still to have surgery on Wednesday.
Don and Marcia (Grandpa and Grandma Up North) arrived Saturday night to help with the kids. This has helped with 'Hotel Living'. We are so thankful to have the help both here and at home.
Maddie continues to feel yucky. We will be glad when the surgery is over. Sam and Max are handling it all well. The Botox has kicked in with Max and his feet are looking better. They are not turning in as much. I think his physical therapists will be pleased. Sam is eating up a storm and making messes everywhere. He has fun at every moment - even just pushing an elevator button. We should all stay five.
We will update again soon. It will actually probably be easier once Maddie is in the hospital.
Thanks for the prayers. Please keep them going.
love,
Jane and Jeff
Saturday, July 17, 2004 12:36 AM CDT
Dear Friends,
Plans change quickly. Maddie will not be having her gall bladder removed on Monday. During her routine nine month post transplant echo, they discovered fluid around her heart. This is due to the FK drug she is on to prevent GVH. Normally we would leave and have it rechecked in Michigan in a few weeks. However because of the gall bladder issue, on Monday she will have another echo. The cardiologist and anesthesiologist will meet to determine if she cn safely have surgery or if the fluid will need to be drained. They have two days to mull that over and Maddie has surgery scheduled for Wednesday. That is our current plan but it can change quickly.
Please pray for Maddie and especially that the doctors make the right decisions about the fluid. Thanks.
Love,
The Trimpers
Thursday, July 15, 2004 2:42 PM CDT
Dear Friends,
We ahve received lots of good news in NOrth CArolina with a piece of bad news as well. All of the tests have come back as good as we could have hoped. Stem cell transplant wise, all is well. However, we have found out why Maddie is not feeling well. She has gall stones. The plan is to remove her gallbladder while we are here. We are meeting with the surgeon tomorrow to see if she can have it done lapriscopically (I slaughtered the spelling on that. Sorry) or will need a more invasive procedure. She will be admitted over the weekend and will receive IV antibiotics and the surgery will be done on Monday. It will either be a one night stay (lap...) or a three night (more invasive). This is the plan but we have learned the plan can change quickly. We will be here most of next week. (Chad and Penny: Mom and Dad will call and help with Kippy.)
For those of you who follow the other MLD kids, we really have Emma to thank. It was because of her troubles the topic was even brought up.
We thought we were leaving in the morning so now I have some laundry to do. Please pray for Maddie that the surgery goes well, doctors make good decisions, and she feels a whole lot better than she has in the past weeks.
At the same time, we praise God for how well all three kids are doing and the wonderful reports we have received. Especially with Max. He really did impress Dr. Escolar at UNC. Thank you so much to the therapists too.
We will update when we can. We realy miss our computer!!
Love,
Jane
Thursday, July 15, 2004 8:55 AM CDT
Hello all.
Things are going pretty good. A little crazy, stressful... going two different directions with the kids. It's very hot down here. It's only suppose to get up to 90 today (cool front). We've swam in the pool a few times and of course, Max loves his hot tub.
Medical news. Max did great with botox on Monday. Dr. Escolar (UNC) was very happy with what she saw in Max. He did a great job for here. Max's MRI has been put on hold until we come back this fall. SO, we thought we were going to be able to leave early. Maddie is having some troubles that may keep us here until ??. They (and us) want her feeling better and eating. She had a rough night at our meeting with Dr. Kurtzberg. So we'll see when we can leave. All the test on Maddie have come back great! MLD and transplant, things are great. We are changing some meds and making some changes with her. We hope it works. Sam, all his test came back great also. He is starting the decrease on all his meds.
So, medically everything is going well. Spirits are a little low. It's always hard being away from home and living in an hotel with three kids. Here, we're "sick" again. Home, we're our family.
Jane met one of "our" fellows yesterday. Exciting. It was good to see and talk to Dr. Kurtzberg as always. She's an amazing person. We also saw a nurse from 5200. It was good to see her and hear all the latest on the staff up there. Great bunch of people!
Anyway, Max and I are heading back to the clinic to find the gang. Hopefully we can head out today. If not, that's OK. We need to get Maddie feeling better.
Sorry about spelling and grammar. I'm in thte hotel lobby and Max is getting anxious to get going.
Jeff
Friday, July 9, 2004 1:33 PM CDT
Dear Friends,
This may end up being a long one. That will probably be a good thing since we leave for Duke tomorrow and probably won’t get a chance to update until mid week.
As I mentioned yesterday, we have had a couple of days full of friends and fun. It hasn’t all been fun though. On Wednesday, Maddie and Sam had to give blood and get IVIG. They handled in their usual style. All the blood work came back fine. Maddie is still not feeling well. I really think it is her magnesium supplements. They seem to really hurt her stomach. It is such a nasty cycle. Her GVH med makes her magnesium drop. The supplements give her a stomach ache. She feels yucky. She has also not been sleeping well which certainly doesn’t help matters. We aren’t worried about her but are starting to feel sorry for her. We are hoping they can help us make her feel better next week.
Therapies have continued as usual. The kids are working hard. They won’t have any therapies next week while we are in North Carolina.
Yesterday, I met some really good friends in Chesaning for dinner after an eye doctor appointment. It was so good to sit and talk. Thanks Janet, Dawn and Amy.
Meanwhile, Jeff and the kids had great company of their own. Matt, Nora and Kathy came over for dinner and brought their beautiful kids with them. Everyone had a good time - especially Sam. (See pictures) I made it home in time to visit with them too. They are such good friends, who have been so supportive over the past year and half. Thanks Lignells and Wades.
We have all had haircuts in the past two days. The kids look really good - especially Sam. He looks less like Eddie Munster. Thank you to Marcie Barber for coming to the house to give Sam and Maddie a trim.
I am going to include at the bottom of the page reminders about Beth’s fund raiser in Chicago this weekend and Bob’s Crusher golf outing later in July. The kids painted some pictures that will be part of the silent auction at Beth’s fundraiser. I am terribly bias, but I thought they were great. :) I just hope Beth gets them in time.
Earlier in the week, we received DukeMed Magazine in the mail. In it was an article about Dr. Kurtzberg and the new developments with stem cells. There was a section of the article about just the leukodystrophies. In it Dr. Kurtzberg was quoted as saying, “The diseases all cause severe neurological damage and death, but they can be corrected if the child is transplanted before symptoms become apparent.” (Maddie and Sam) The article also discussed that these non-symptomatic children are usually diagnosed because they had an older sibling who had died from the disease. Another reminder of how lucky we are to have all three children here with us and how remarkable Max is doing.
The article also said, “The transplants don’t necessarily produce a complete cure, (Max) but they have been able to stop the disease progression, presumably because the transplanted stem cells morphed into other cell types. “It seems like stem cells know how to get to places where there’s damage, and that may be because of chemical signals are sent out by those areas, “Kurtzberg says. “And we think cord blood stem cells work better than bone marrow in these patients because they’re more flexible and more able to turn into other cells, and therefore do a better job at correcting the enzyme deficiency.”
The article also told of two autopsies performed on two stem cell patients who succumbed from transplant complications. In one of the patients who had heart damage the donor cells were in the heart. In the other patient who had neurological damage, the donor cells made up 40 percent of the cells in the brain. Amazing.
Thank you, God. Thank you for Dr. Kurtzberg for her pioneering work with stem cells. Thank you for sending us to her. Thank you for the medical miracles you provide.
To read the article go to http://dukemedmag.duke.edu/article.php?id=7235
(Thanks, Marysusan!!)
We hope you all have a good weekend. We will be driving on Saturday and Sunday. We start our many appointments on Monday morning. We will actually have to rent a car because on two days we have to have Max at UNC and Maddie and Sam at Duke. We will be busy. Please pray for good results. We will try to update when we can.
Love,
Jane and Jeff
A high school friend of mine is having a fund raiser in the Chicago area. The former Beth Buckingham now Beth Reidinger wrote this in the guestbook:
Wanted to let you all know, our Trimper Fund Raiser here in Chicago will be on July 10th. I've sent out the invitations, but if anyone reading this wants to come out (and lives near...) it will be at Jack Sullivans Bar and Grill on Clybourn Ave. from 8pm-11pm. It's $35 per person. If you know anyone in Chicago, tell them to stop by!!!
Fifth Annual “CRUSHER” Invitational
Sponsor a Hole
For $50-$100 you can sponsor a hole. A Sign with your company logo or personal comments will be placed on the Tee box for all to see. (Anything can be put on a sign) Proceeds will go to The Trimper Children Fund.
DATE Saturday, July 24, 2004
(Tee times beginning at 10 am)
LOCATION Whispering Willow Golf Course (Livonia)
COST $65 per person
FORMAT 4 PERSON Scramble. Each team will have to use 3 drives from each golfer.
COST INCLUDES
18 HOLES AND A CART
HOTDOG, POP, AND CHIPS @THE TURN
PRIZES AWARDED FOR
BEST TEAM SCORE
WORST TEAM SCORE
LONG DRIVE FOR BOTH MEN AND WOMEN
CLOSEST TO THE PIN ON ALL PAR 3’S
PLEASE RETURN ENTRY FORM WITH CHECK BY JULY 02, 2004 TO, OR FOR MORE INFORMATION:
Make check payable to Bob Bieganski
BOB BIEGANSKI
29766 RICHLAND
LIVONIA, MI 48150
W(248)370-1394 H (734)425-4192
Jamiebieganski70@msn.com
Thursday, July 8, 2004 8:44 PM CDT
Dear Friends,
Sorry for the late update. I am going to keep it very brief (I am tired). We have been busy and our time has been full of friends and fun. The kids are doing fine. I will write a much longer more detailed entry tomorrow.
Good night.
Jane and Jeff
Tuesday, July 6, 2004 3:24 PM CDT
Dear Friends,
Boy, did we have a good time with the cousins. My kids are each lucky enough to have a cousin their own age. Sally and Bill’s kids match up to ours and have lots of fun. They kept us busy and yes, we could have used an Alice. The chaos and craziness and mess were all worth it. Last night (10:45) I was lying on the couch and listening to Molly and Max in his room talking and singing. I haven’t heard Max talk so much in a long time. Molly treats Max like she always has and adores being with him. She is very special.
Grace, 6, is wild and fun. Maddie wasn’t feeling her best and yet I heard her laugh several times at Grace. They had girl video time last night in our old bedroom.
Jackson, 5, had lots of fun with Sam. It is magical to watch two five year old boys play together. I mean fight together. I mean play together. I think you get my point. They snuggled in Sam’s bed last night to watch a DVD. I had the idea that if they all watched movies they would just fall asleep. Ha! They were all awake when I feel asleep on the couch.
It was great. My kids seemed so normal and it felt good. And of course, Jeff took some very nice pictures.
It does seem quiet now with just three kids. I think we will be in bed early tonight. Life really is good. Again I thank God for all we have and the health of those three little Carroll kids.
Love,
Jane and Jeff
Lying on the couch, laying on the couch. Sorry Kathy D. I never could get that right.
Sunday, July 4, 2004 6:43 PM CDT
Dear Friends,
Happy 4th of July!
The weather in Michigan didn’t really cooperate today. We had some outdoor opportunities to do today, but it was just too rainy and dreary. We tried to go to the movies, but the theater was too crowded. I don’t think the Garfield movie was the problem, which is what we wanted to see. It was just too crowded in the lobby with Spiderman fans. So we went to Blockbuster and rented some DVD’s. We took a drive around the area.
That is really about it. Yesterday was pretty uneventful too. It is sometimes hard not being able to take the kids out and about.
Tomorrow is Grandma Strawberry’s (aka Claudia) birthday. Happy birthday, Mom! Also, the cousins are coming to spend the night. My kids are very excited about that. Six kids! It will be just like the Brady’s.
Love,
Carol and Mike
We’re going to need Alice.
Friday, July 2, 2004 6:47 PM CDT
Dear Friends,
We had another nice day. Maddie, Sam and I went to church this morning for their children’s message and Sunday school time. It was really nice. Maddie retold the stories on the way home.
Max couldn’t go to church. He had PT during that time and his therapist said he did a good job. Maddie and Sam had PT when they got home. Max also had Occupational Therapy.
In the afternoon, we hung out in the house. Story Grandma came again and shared stories. They enjoyed it. Thanks, Kay.
The kids are doing well. Thank you, God! We hope you all have a great Fourth of July weekend.
Love,
Jane and Jeff
Thursday, July 1, 2004 8:24 PM CDT
Dear Friends,
Today was a good day filled with great people. We started the morning with speech therapy for Max. He did a good job.
One of our friends from Chesaning, Janet, came over for a visit this morning. It was great to see her. It felt so good to catch up on what is going on. Somehow she avoided the camera and we didn’t get a picture of her. It is a shame because she is such a beautiful person inside and out.
This evening we were able to meet another MLD family from DeWitt. The Osmars have a 16 year old son who was transplanted 10 years ago. It was so nice to sit and talk with them about our kids. It was a great night. They did not escape the camera. Thanks Mary, Steve and Patrick.
It was a blessed day.
Love,
Jane and Jeff
Wednesday, June 30, 2004 6:59 PM CDT
Dear Friends,
Where is all the time going? Days are flying by. We haven’t done anything too exciting and yet the time goes so fast.
Max has been busy with therapies. He has had OT, PT and speech the past couple of days. Maddie and Sam had PT. Our new physical therapist started today. Jeff and I didn’t get a chance to meet her. We had to go to a meeting but the kids said she is very nice.
I went to Shipshewana yesterday with Joanne and Mom. We had a good time. Jeff kept the kids busy at the Orchard and around the house.
That is really about it. All three kids are doing well. Maddie seems to be perking up. Max is eating more than usual. Sam is Sam. We are thankful.
Love,
Jane and Jeff
Monday, June 28, 2004 6:35 PM CDT
Dear Friends,
It was a beautiful fall day here in Stanton. Oops, I mean summer. We are actually loving this weather. I think we will melt when we go back to North Carolina in July.
Today was a nice day. Our OT, Jill, came and worked with Max. If I haven’t said it lately, we really like our therapists. The rest of the day was easy. The kids and I went to Greenville. We stopped at the book store. There was no one in there and it was perfect timing for the kids. I really need to get them out more often. They didn’t understand the difference between a book store and a library. Sam had a pile of about 30 Scooby Doo books he had found. He cleared off the whole shelf. We talked about making choices. Not an easy concept for my five year old. We lightened our pile and we were all able to leave with a smile.
Last night after I posted, Cheryl, our daycare provider came over with part of her family. They had gone out west and she brought each of our kids a Navajo healing necklace. They are beautiful and the kids were very excited about wearing them. Thanks Smiths. She also brought them whistles. We will get even Cheryl. Sam can’t wait to bring his to daycare! :)
That is really about it. We hope you all had a great day.
Love,
Jane and Jeff
Prayer warriors, please pray hard for the Geissers. Two transplants for Dominic and now Dennis is also going to start a second. They need our support. Please don't forget the Joiners either. And while we are at it, Lucas Viscomi has some serious surgery scheduled ahead. And Emma is having some stomach issues and may need her gall bladder removed. We pray things will perk up for our MLD buddies.
Sunday, June 27, 2004 2:13 PM CDT
Dear Friends,
This is an odd time of day for me to update, but I had the time and thought I would take advantage of it.
Team Trimper met yesterday. It was a very productive meeting. We discussed some fund raising ideas and are going to do some checking and then meet again. We would like to do a large scale raffle and work together with the group who has the annual February fund raiser. We are also going to be checking on what is going on in the medical community. Today I woke up and was hit by how blessed we are to have a team of people who are willing to work on this. God has surrounded us with so many caring individuals. It isn’t just the team members. It is all the people who have so readily helped us. Thank you so much team members and supporters.
Grandma Up North (aka Marcia) stuck around and spent the night with us. It was good to have some time with her. We did something new on Saturday. We took the kids out for dinner at Clifford Lake. They are allowed to sit outside at a restaurant. They had a great time and ate very well. The lake provided a beautiful atmosphere. It has been so long since they have eaten in public. Other than a few burps, we did okay.
We did take advantage of Marcia’s presence. Jeff and I went to a friend’s home in the evening for a while and Marcia stayed with the kids. It was very relaxing. She left this afternoon. Thanks Marcia.
Today has been relatively quiet. I went to church. The kids played outside and took golf cart rides. We are just getting ready to go to the trail. Maddie wants to ride her bike. Go Maddie!
We hope you all had a nice weekend. Happy Birthday, Aunt Sally!!
Love,
Jane and Jeff
Friday, June 25, 2004 7:10 PM CDT
Dear Friends,
Sorry I didn’t update last night. The time got away from me. Yesterday was pretty ordinary. Jeff took Maddie to give blood in the morning. She did pretty well. All three kids had physical therapy. Our therapist, Beth, is taking a new job and yesterday was our last day with her. We will miss her.
Max also had OT yesterday. We went to the library in the evening. It was a pretty quiet day.
Today was not much different. Story Grandma (aka Kay) came over and read books to the kids. She always does such a great job. Maddie was having trouble with her sinuses and not dealing with it very well. She had to miss most of the stories. Story Grandma left some books for us to read and plans to come back next week. Hopefully Maddie will be in a better mood.
The rest of the day was pretty quiet. We played some UNO, went for a golf cart ride, played outside, etc. Tonight I went up to the American Cancer Society walk at the high school. I bought some luminaries for the kids we met and lost this past year and a half. I want those parents to know that their children will always be remembered. I also thought of our friends who have lost loved ones to cancer and our friends who are currently battling. I will never miss the cancer walk.
Love,
Jane and Jeff
Wednesday, June 23, 2004 8:22 PM CDT
Dear Friends,
Sorry for the late post. I was chatting on the phone to another set of MLD parents. They are very knowledgeable and involved, and it was really good to talk with them.
We had a busy and usual day. Thank you, God. Max and I went for a walk/roll on the trail this morning. Jeff and the two little guys played outside. Max and I worked with some crayons and read some words on word tiles. The morning went quickly. We are really adjusting to summer schedule and today I was the only one up before 8:00.
Jen, the PT came and worked with all three kids in the afternoon. Then Max had OT with Jill.
That is really about it. Isn’t it boring? We sure like it this way.
Maddie gives blood again tomorrow morning. They need to keep checking her magnesium.
Love,
Jane and Jeff
Tuesday, June 22, 2004 6:40 PM CDT
Dear Friends,
Another quiet day here. The kids had PT this morning and Max had OT in the afternoon. We played cards, rode on the golf cart and walked with Max. He was walking very well today. Usually it takes him a while to take each step. Today he was moving foot after foot. They still cross over each other and he is using a walker, but it was good to see the processing speeding up.
We are planning the next Team Trimper meeting to discuss our next move. We are meeting Saturday and I’ll keep you all updated.
We hope you all had a great day.
Love,
Jane and Jeff
Monday, June 21, 2004 7:05 PM CDT
Dear Friends,
Not too much to report for today. Maddie and Sam gave blood again today. They wanted to keep an eye on Maddie’s potassium and magnesium. They both got a little upset. I gave blood too. I needed my cholesterol checked. I was brave.
Max had OT and PT. It was rainy and dreary. That is really about it.
We hope your day was more exciting - in a good way.
Love,
Jane and Jeff
Sunday, June 20, 2004 7:06 PM CDT
Dear Friends,
Happy Father’s Day. The father of this house was recognized with a Diet Coke in bed this morning and homemade cards. Jeff is an amazing father and a great model for Max and Sam to follow when they have their own children. We went to Mt. Pleasant this afternoon and Jeff and I did some shopping and went out for a bite to eat. Joanne watched the kids for us. Thanks Joanne. On the way home all the kids said why Jeff was a great dad. “He plays with us.” He rubs my face.” “He burps.” Jeff is an amazing dad.
Speaking of amazing dads, Happy Father’s Day Don and Bob.
As we did on Mother’s Day, we remember lots of people who are having a rough Father’s Day. These holidays aren’t always easy.
Love,
Jane
Friday, June 18, 2004 6:32 PM CDT
Dear Friends,
We had a fun summer day today. I took the three kids to Chesaning to pick strawberries and swim in Grandma and Grandpa’s pool. We had a good time. Maddie ate better today and seems to be perking up. Max ate a lot today. He loves Grandma’s strawberry pie and ate three pieces today. He did a good job walking in the pool. Sam rode around with Grandpa and helped him in the fields. I think Sam would love to live on a farm with a lot of tractors.
Jeff worked around the house and took Kippy to the vet. She has been acting odd for a while and we needed to get her checked. It turns out we have a depressed dog. She has started an anti depressant. Kippy is amazing and is probably very in tune with what is going on in the house - especially Max’s losses. Oh well, what’s one more med??
We hope you all have a good weekend and a nice Father’s Day.
Love,
Jane
Thursday, June 17, 2004 5:59 PM CDT
Dear Friends,
When I skip a day, I feel like I really have a lot of things to write. First of all, how about those Pistons?? I don’t think I have ever enjoyed a pro basketball game more.
Maddie and Sam gave blood yesterday. Maddie’s Potassium and Magnesium came back low and she had to go and give blood again today. Blood draws are not her favorite but she handled them all right. The potassium and magnesium are still low and they will start a supplement tomorrow. This may actually explain why she hasn’t been feeling the greatest.
Max has been doing a lot of therapy. He is tired tonight and ready to rest tomorrow. We played some Rugrat’s Uno today and he did a good job.
We had an exciting phone call today. Trish from the Stennis Foundation, an MLD group in Texas, called and they will be contributing $20,000 to the fellowship fund. The Stennis Foundation is named after and started in honor of Dr. Sam Stennis who has adult onset MLD. We are very happy that they believe in the effort of hiring fellows. Thank you Stennis Foundation.
To learn more about their group, go to www.stennisfoundation.org.
A high school friend of mine is having a fund raiser in the Chicago area. The former Beth Buckingham now Beth Reidinger wrote this in the guestbook:
Wanted to let you all know, our Trimper Fund Raiser here in Chicago will be on July 10th. I've sent out the invitations, but if anyone reading this wants to come out (and lives near...) it will be at Jack Sullivans Bar and Grill on Clybourn Ave. from 8pm-11pm. It's $35 per person. If you know anyone in Chicago, tell them to stop by!!!
Thanks, Beth.
Also don’t forget about the Crusher annual golf tournament. The information is below. Jeff will be there.
The days are flying by. We will be going back to Duke the week of July 12th. It will be here before we know it.
We hope you are all enjoying the summer days and summer rain.
Love,
Jane and Jeff
Fifth Annual “CRUSHER” Invitational
Sponsor a Hole
For $50-$100 you can sponsor a hole. A Sign with your company logo or personal comments will be placed on the Tee box for all to see. (Anything can be put on a sign) Proceeds will go to The Trimper Children Fund.
DATE Saturday, July 24, 2004
(Tee times beginning at 10 am)
LOCATION Whispering Willow Golf Course (Livonia)
COST $65 per person
FORMAT 4 PERSON Scramble. Each team will have to use 3 drives from each golfer.
COST INCLUDES
18 HOLES AND A CART
HOTDOG, POP, AND CHIPS @THE TURN
PRIZES AWARDED FOR
BEST TEAM SCORE
WORST TEAM SCORE
LONG DRIVE FOR BOTH MEN AND WOMEN
CLOSEST TO THE PIN ON ALL PAR 3’S
PLEASE RETURN ENTRY FORM WITH CHECK BY JULY 02, 2004 TO, OR FOR MORE INFORMATION:
Make check payable to Bob Bieganski
BOB BIEGANSKI
29766 RICHLAND
LIVONIA, MI 48150
W(248)370-1394 H (734)425-4192
Jamiebieganski70@msn.com
------------------------------------------------------------------------
Tuesday, June 15, 2004 7:52 PM CDT
Dear Friends,
Today was a quiet day. We took a walk on the trail this morning. Actually Max rolled in his chair and Maddie walked half the time and rode in a wagon the rest of the time and Sam rode his bike. It was a beautiful morning and it felt good to get outside. In the afternoon, all three kids had PT and Max did OT. That is really about it.
Last week we made the decision to get a pool. This wasn’t an easy decision. While in St. Louis, Jeff heard yet again the importance of water therapy. It seems to be a reoccurring theme. So, the pool will hopefully be in this summer. Thank you to our friends who have offered to raise money to get us a pool. Although we so appreciate your offers, we’ll do this on our own.
The past two years have been life altering. There was a time when the idea of a pool or an addition to the house would have thrilled me to no end. Now, it just seems like it is all just ‘stuff’. The excitement comes from watching the three kids. I can’t wait to see Max walking in that pool.
Love,
Jane and Jeff
Monday, June 14, 2004 5:59 PM CDT
Dear Friends,
Happy birthday dear Sam! Sam officially turned five today. He enjoyed his day and will probably be sad when all this birthday hoopla ends.
We had PT and OT this morning. We went to the library to check out some books and join the summer reading program. We played games and did some schoolwork. Sam played with his new toys.
We had a pizza birthday dinner and then we finished off the cake from yesterday. All three kids went face first into the cake. (See pictures tomorrow) They had a great time. Jeff and I just smiled knowing we would never have let them do this two years ago.
Love,
Jane and Jeff
Sunday, June 13, 2004 8:09 PM CDT
Dear Friends,
It was a lively weekend. Jeff went to Charlevoix with our good friend Jon to attend the 40th birthday party of another friend. Happy Birthday, Jeff M. They had a good time and spent the night up north. The kids and I were pretty lazy and hung around the house.
Today we celebrated Sam’s fifth birthday. His birthday is actually tomorrow (Monday, the 14th). We went to Chesaning and had a fun beach (pool) party with both our families. It was a day full of fun and food. Most importantly, Sam had a great time being the man of the hour. After all we have experioenced, we know each birthday is a gift. We thank God for Sam’s fifth birthday.
Max lost two teeth this weekend. They are under his pillow right now. We are tucked in and ready to root on the Pistons!!!!
Love,
Jane and Jeff
Friday, June 11, 2004 7:23 PM CDT
Dear Friends,
Today was a good day. It started out cold and rainy. I did some yard work outside while Jane took the kids to a special church session. The kids had a good time. Jane will have to tell you more about it. Max had OT after church. Another busy day. Max was pretty tired this afternoon. Big week for him. St. Louis and back and a full week of therapy. Maddie is still not feeling well. Sam is going a mile a minute from the time he wakes up until he falls asleep. He is doing great. Sue called from Duke this evening and all their lab work looks good.
Jane went to see Harry Potter with some friends tonight. The kids took the their meds well and are all in bed (Sam in and out). Have a good weekend. Sam’s FIFTH birthday party is Sunday. A good reason to celebrate! All is good.
Jeff
How about those PISTONS! Sorry west coast followers.
Fifth Annual “CRUSHER” Invitational
Sponsor a Hole
For $50-$100 you can sponsor a hole. A Sign with your company logo or personal comments will be placed on the Tee box for all to see. (Anything can be put on a sign) Proceeds will go to The Trimper Children Fund.
DATE Saturday, July 24, 2004
(Tee times beginning at 10 am)
LOCATION Whispering Willow Golf Course (Livonia)
COST $65 per person
FORMAT 4 PERSON Scramble. Each team will have to use 3 drives from each golfer.
COST INCLUDES
18 HOLES AND A CART
HOTDOG, POP, AND CHIPS @THE TURN
PRIZES AWARDED FOR
BEST TEAM SCORE
WORST TEAM SCORE
LONG DRIVE FOR BOTH MEN AND WOMEN
CLOSEST TO THE PIN ON ALL PAR 3’S
PLEASE RETURN ENTRY FORM WITH CHECK BY JULY 02, 2004 TO, OR FOR MORE INFORMATION:
Make check payable to Bob Bieganski
BOB BIEGANSKI
29766 RICHLAND
LIVONIA, MI 48150
W(248)370-1394 H (734)425-4192
Jamiebieganski70@msn.com
Thursday, June 10, 2004 7:16 PM CDT
Dear Friends,
Not too much to tell today. The kids did therapy and it was a rainy day.
There is information below about the Crusher Golf Outing. Jeff will be there to play. We hope some of you can join in on the fun. The money will be going into our foundation fund and all money will go for MLD research.
Love,
Jane and Jeff
Fifth Annual “CRUSHER” Invitational
Sponsor a Hole
For $50-$100 you can sponsor a hole. A Sign with your company logo or personal comments will be placed on the Tee box for all to see. (Anything can be put on a sign) Proceeds will go to The Trimper Children Fund.
DATE Saturday, July 24, 2004
(Tee times beginning at 10 am)
LOCATION Whispering Willow Golf Course (Livonia)
COST $65 per person
FORMAT 4 PERSON Scramble. Each team will have to use 3 drives from each golfer.
COST INCLUDES
18 HOLES AND A CART
HOTDOG, POP, AND CHIPS @THE TURN
PRIZES AWARDED FOR
BEST TEAM SCORE
WORST TEAM SCORE
LONG DRIVE FOR BOTH MEN AND WOMEN
CLOSEST TO THE PIN ON ALL PAR 3’S
PLEASE RETURN ENTRY FORM WITH CHECK BY JULY 02, 2004 TO, OR FOR MORE INFORMATION:
Make check payable to Bob Bieganski
BOB BIEGANSKI
29766 RICHLAND
LIVONIA, MI 48150
W(248)370-1394 H (734)425-4192
Jamiebieganski70@msn.com
Wednesday, June 9, 2004 6:14 PM CDT
Dear Friends,
Jeff put some pictures of the trip in the album today. Take a look. All three boys are looking cute.
Jeff and I talked about St. Louis last night. We look forward to going back and learning from them. The doctor was very happy with Max’s strength and his cognitive abilities. They will call us in the next week to schedule our next trip.
Today was a nice and busy day. Maddie and Sam gave blood this morning and went to see the doctor. There were tears and it wasn’t easy, but I will get used to it soon. :) Actually they both did okay.
Our physical therapist, Jen, came after we got home and all three kids did therapy with her. I went to lunch with some phenomenal women. Max had OT and speech in the afternoon. Then we went to see Shrek 2. We were the only four tickets sold. Jeff ran some errands while we watched the movie.
The kids had Crazy bread with sauce tonight for dinner. I was helping Max and he kept grabbing the bread, dipping it and eating it. I kept taking it from his hand so I could help him. I think we have discovered Max’s problem - ME! I want him to eat so bad I just keep shoving it in when he wants to do it himself. As I was cleaning the kitchen, I just couldn’t help but think how great that he would rather do it on his own. I am so proud of that boy! I will work on my own little problem.
We hope you all had a good day. It was steamy in Michigan. Summer is here.
Love,
Jane and Jeff
Fifth Annual “CRUSHER” Invitational
Sponsor a Hole
For $50-$100 you can sponsor a hole. A Sign with your company logo or personal comments will be placed on the Tee box for all to see. (Anything can be put on a sign) Proceeds will go to The Trimper Children Fund.
DATE Saturday, July 24, 2004
(Tee times beginning at 10 am)
LOCATION Whispering Willow Golf Course (Livonia)
COST $65 per person
FORMAT 4 PERSON Scramble Each team will have to use 3 drives from each golfer.
COST INCLUDES
18 HOLES AND A CART
HOTDOG, POP, AND CHIPS @THE TURN
PRIZES AWARDED FOR
BEST TEAM SCORE
WORST TEAM SCORE
LONG DRIVE FOR BOTH MEN AND WOMEN
CLOSEST TO THE PIN ON ALL PAR 3’S
PLEASE RETURN ENTRY FORM WITH CHECK BY JULY 02, 2004 TO, OR FOR MORE INFORMATION:
Make check payable to Bob Bieganski
BOB BIEGANSKI
29766 RICHLAND
LIVONIA, MI 48150
W(248)370-1394 H (734)425-4192
Jamiebieganski70@msn.com
Tuesday, June 8, 2004 5:50 PM CDT
Dear Friends,
Jeff called tonight. We only spoke briefly, but it sounds like the St. Louis trip was a positive one. We were told that they created therapy plans to retrain the brain. I don’t think they got too much into that. They spoke a lot about what is being done with Max and what else he would benefit from. They are going to schedule a three day visit during which Jeff and I will be trained on how to make therapy happen all day. Jeff sounded encouraged by the visit. They will be home tonight, and I’ll be happy to have them!
Maddie, Sam and I didn’t do anything too exciting today. Maddie has not been feeling well and hasn’t eaten too much the past few days. We had lowered her steroids and I don’t think her body was adjusting well. I emailed Dr. Kurtzberg and she gave us advice. I am hoping she feels better tomorrow and is more interested in eating.
Love,
Jane
Monday, June 7, 2004 6:53 PM CDT
Dear Friends,
Max, Jeff and Bill have made it safely to St. Louis. Their appointment is for 11:30 tomorrow morning (St. Louis time). The flight went well and they went to see Shrek 2. They were trying to decide what to do for dinner when I last spoke with them.
Maddie and Sam have had a lazy day. We’re watching a movie on the Disney channel and will head to bed soon.
The three boys will be home tomorrow night. We look forward to hearing about their day.
Love,
Jane and Jeff
Sunday, June 6, 2004 6:09 PM CDT
Dear Friends,
We hope you all enjoyed the weekend. We did. Yesterday we went to Mt. Pleasant. The kids and Jeff went to the District ball game. I went to Target with Joanne.
Today we went to a graduation party for another great kid. It was good to see other people and get the kids outside.
Dray Clark from WOOD TV8 called and left a message for us today. He and Andy, the camera man, won an emmy for the story they did on us. We are so happy for them. It couldn’t have happened to two nicer people. We thought they did a great job and obviously so did their peers.
Thank you to Loie for posting it in the guestbook. I actually read that before I heard Dray’s message.
The kids are well. Thank you, God. Max and Jeff leave for St. Louis tomorrow to meet with the ‘walking doctors’. (That’s what we are calling them here). Please say prayers that they make it safely and that if this is the answer, it is made clear.
Love,
Jane and Jeff
PS Happy Birthday on Saturday, Uncle Carl. We hope it was a good one!!
Friday, June 4, 2004 5:49 PM CDT
Dear Friends,
You know what Friday means? Church for the Trimper kids. We started the day with the Children’s message with Pastor Jamey and Sunday School with Corby. Since school is out for the summer, all three kids were able to go.
After church, we came home and cleaned the house. Max’s occupational therapist came and worked with him for an hour. The rest of the day was pretty relaxed. We enjoyed the sunshine.
We hope you all have a great weekend.
Love,
Jane and Jeff
Thursday, June 3, 2004 7:28 PM CDT
Dear Friends,
Today was a busy day here. Grandma Strawberry came over early to watch the little two while Jeff and I took Max to his appointments. We were doing meds right before we had to leave and kind of left in a whirlwind. Maddie and Sam had a good time with Grandma and played lots of games. Thanks, Mom.
Max had a little bit of PT in a hallway at Mary Freebed in Grand Rapids with Beth, his therapist. Then he had his orthodics adjusted. Because he had been bearing weight on them, he had some red marks and they made some adjustments to correct that. After that appointment, Jill, his speech therapist met us and had a session with him outside at a picnic table. His therapists are so flexible and do such a good job with him.
Then Jeff and I took Max out to eat at a very fancy restaurant (Wendy’s). He ate his chicken tenders in a public place, something he hasn’t done much in the last year and a half. It was really nice to have him out and about.
Then we went and met with the pediatric neurologist. There was an emergency at the hospital so we had to wait awhile. Better to wait then be the emergency. We have learned that. The doctor is very nice and her first response was about how good Max looked.
We didn’t get home until 5:30. Pizza, grocery shopping, meds, and pajamas: that pretty much wraps up the day. Busy but good.
Happy, happy birthday Grandma Up North: aka Marcia!!!!! We hope you had a great day.
Love,
Jane and Jeff
Wednesday, June 2, 2004 6:02 PM CDT
Dear Friends,
The last couple of days have been pretty routine. Thank you, God. Yesterday was the last day of school for the teachers. Jeff and I both went in and worked in our classrooms. He was cleaning his up and I was organizing for next year. The possibility of me going back to teach is just so extraordinary after all that has happened in the last year and a half.
Joanne came and watched Max, Maddie and Sam. Thanks, Joanne. Our physical therapist and occupational therapist came. Max had a tough day. He has lacked some energy the past couple of days, but he was much better today. I think the change in routine gets to him.
Today Max had a nice morning with Jeff and then he had PT, OT and speech in the afternoon. He did a good job and was worked hard.
Maddie and Sam went and gave blood this morning and received their monthly dose of IVIG through their ports. We were at the hospital all morning. They handled it well. There were some tears, but they are being brave.
That is really about it. The kids feel good and look good. We are very thankful. Tomorrow is a big day for Max. We are going to Grand Rapids to have his braces adjusted. PT and speech will meet us there. Then he has his first appointment with his new pediatric neurologist. We met her in the hospital when he had his seizure.
Also, Jeff, Uncle Bill and Max are flying to St. Louis Missouri next week to meet with a rehab doctor. This is the rehab group that has worked with Christopher Reeve and we are curious to see if there is anything they can offer Max. It is an hour appointment that could lead to a week’s worth of therapy training. We will let you know more when we learn more.
I hope the Joiners feel the power of the prayers. Please keep them in your thoughts.
Love,
Jane and Jeff
Monday, May 31, 2004 5:30 PM CDT
Dear Friends,
We are fine but there are others who really need the prayers. Please pray for the Joiners tonight asking God for a miracle.
Jane
Sunday, May 30, 2004 7:10 PM CDT
Dear Friends,
We hope you are all having a nice Memorial Day weekend. We have been busy and I am not sure where the time is going. Jeff did lots of lawn work yesterday. Max did lots of walking with his walker. He is needing less assistance. Jeff went to church today. We all went to the graduation party for our friend Michael. He is a great kid and our kids love him.
That is really about it. I just wanted you to know all is well at the Trimper house.
Love,
Jane and Jeff
Friday, May 28, 2004 7:52 PM CDT
Dear Friends,
Last day of school!! (At least for the kids.) Max is officially a third grader and seems very excited about it. He had a half day of school today. While he was at school, Maddie and Sam went to church for the children’s message and Sunday school. In the afternoon Joanne came over and the kids had fun. They went for golf cart rides, etc. There was a lot of laughter and smiles. We had a good day.
Love,
Jane and Jeff
Thursday, May 27, 2004 6:17 PM CDT
Dear Friends,
Today was a busy day. Last night Grandma and Grandpa Trimper came down to spend the night. This morning all four grandparents went to the school to celebrate Grandparent’s Day with Max. Max showed them his therapy room and other places in the school.
After that, there was the We Love America Parade at the football field. Since it was outside, I took Maddie and Sam up to the parade. We stayed away from the crowd and enjoyed being out. It was a beautiful day to sit and watch all the students singing patriotic songs and reading essays. Max was easy to spot in his wheelchair and we look forward to the parade when he walks around the track again. Jeff wasn’t as easy to spot but we found him too.
Max had therapies in the afternoon. It was a busy good day.
Love,
Jane
Wednesday, May 26, 2004 6:19 PM CDT
Dear Friends,
Another great day. Maddie and Sam went to the doctor this morning and had their blood draw. The kids look great and Dr. Konstantelos did not have any concerns. Both of the kids did well at the blood draw. Maddie cried a little when the needle went into the port and came out. But during the actual draw, she held strong. Sam didn’t make a peep. The doctors appointment and the blood draw combined only took an hour.
Then we had a meeting (IEPC) for Max at school. We feel really good about the plan for him next year. He is in good hands. Thanks Dad for watching the kids while I went to the meeting. (Thanks to Joanne for watching them yesterday when I went rollerskating. It takes a village.)
Maddie and Sam had PT in the afternoon. They have surpassed the goals set by the therapist. They are doing so well and are so strong. When we got home from North Carolina, Sam could not even walk on tippee toes. Now he walks across the room on his toes. Both Maddie and Sam would crawl up stairs. Now they walk foot over foot without holding on to anything. They have worked hard.
Beth, the therapist, also said that at school Max walked again for her as well as he ever has. That is two times in a row for those of you keeping track. We are very proud of all three kids.
Only two days of school left.
Love,
Jane and Jeff
Tuesday, May 25, 2004 8:03 PM CDT
Dear Friends,
Sorry for the later update. I am going to make it short but it was a great day. I went with Max on his school field trip this afternoon. ROLLERSKATING!! Of all the trips for Max. I was really looking forward to going but a little nervous about seeing Max with other kids. Jeff has had to face that every day but I haven’t.
Well, it was great. I strapped on some skates and pushed him around the rink. The kids pushed him. The teachers pushed him. He had a good time.
The other kids treat Max so well and so normal. Children are amazing and we have much to learn from watching them. The most wonderful thing of the day was that not once did I feel sorry for Max. Thank you, God. We are blessed. And Max is an amazing boy.
Love,
Jane
Monday, May 24, 2004 7:07 PM CDT
Dear Friends,
We sent Max to school today and then I picked him right up. He was looking awful today and had a day of rest at home. He took an hour nap (which he never does). I hope he is perkier tomorrow. He has a field trip to the roller rink.
Maddie and Sam had a day inside again. I hope the weather gets better soon. Unfortunately, there are now tons of mosquitos. Sam is itching to get outside with his tools and ride his bike.
Only four more days of school. I know we had a weird year, but it seems to have gone so fast. We are looking forward to our long summer.
Could you prayer warriors please say extra prayers for the Joiners? Coming home isn't easy and we can't imagine how much they are missing Ross. Could you also please prayer for the Geisser family in Germany? Both Dominic and Dennis are facing challenges right now.
Love,
Jane
Sunday, May 23, 2004 7:37 PM CDT
Dear Friends,
What a quick weekend. The kids and I got home from Mt. Pleasant this morning. We had a good time. Thank you so much Joanne.
Jeff got a lot done in his classes while we were gone. The kids were happy to see him this morning.
All three kids are congested. Max is really in rough shape. He is still on his antibiotic and we will see how he does as the week progresses. Sam had a constant runny nose. Bring on summer!!!
My Grandma and Aunt Joyce came to see the kids and the house today. It was really good to see them. Dad and Joanne came with them. Thanks you four.
That is really about it. It has been raining and raining and raining. The grass is a beautiful green.
Love,
Jane
Saturday, May 22, 2004 5:59 PM CDT
Dear Friends,
Friday was a busy day for everyone. Max and I went to school early to get a jump on the day and actually got there late. I’m not sure how it happens, but things happen and next thing you know, you’re rushing to get where you need to be. Max had a normal day at school, no therapy. On Friday’s, he follows the normal schedule. It has to feel good to him. He had a busy week and was tired from all the work and fighting the sinus stuff.
Jane, Maddie and Sam had a busy Friday. They went to Friday church. They really seem to be liking church. They have two GREAT people working with them. Thanks you two! As you can see by the pictures the kids really feel comfortable. This guy has been with us all the way. After church they went to a friend's house to play. I think Jane really enjoyed it also. Good company and a break from the routine.
Saturday (today), Jane and the kids went to Aunt Joanne’s for the night. It sounded like they were having fun. Back on the home front, I am working on my two classes. I know this may sound exciting to many of you, but I just want to get these things done. Luckily the weather has been bad so I’m not tempted to go outside and do yard work. I did plant a tree on one of my breaks though. Had to get out for a short time.
I’m going to call the kids, finish up another lesson or two and then relax and watch the Piston’s game. Have a good weekend.
One more Friday song, then Max and I are done!
Jeff
Thursday, May 20, 2004 6:09 PM CDT
Dear Friends,
Today has been typical for the week. We are celebrating that Max’s physical therapist said that Max walked better today than he has in a long time. Go Max! And that is with a whopping cold going on.
Love,
Jane and Jeff
Wednesday, May 19, 2004 7:52 PM CDT
Dear Friends,
Okay. Last night was a first for me. I totally forgot about the journal. I remembered when I woke up. I am sorry.
Everything is calm and quiet. Max is still congested and he started an antibiotic tonight just to be safe. He had school all day. We are now able to do therapies at school so he can stay all day. He had OT and PT there this afternoon.
Maddie and Sam had blood draw and doctor visit today. Maddie did very well with the blood. I am so proud of her. Sam did well too. He was a little grouchy though. He ended up taking an hour and a half nap after we got home. He was a tired little guy. Dr. Konstantelos said they looked good. They also had PT in the afternoon.
That is really about it. Thank you, God.
Love,
Jane and Jeff
Monday, May 17, 2004 7:15 PM CDT
Dear Friends,
There isn’t much to say about today. Max had PT and OT this morning. He went to school for the afternoon. He was very congested this morning and looked pretty tired when I sent him to school. When he came home, he looked pretty good. I wonder about allergies with him and Sam.
Maddie and Sam had PT this morning. Maddie took her daily noontime nap. Brennan and Dave came over to start working on a backyard deck area/ramp. Sam was thrilled. He went out and helped the guys. They are so nice to him. They let him kick some dirt and work on a piece of wood. The other night Sam fell asleep with his toy drill in his hand. Jeff will post that picture soon.
That’s really about it.
Love,
Jane and Jeff
Sunday, May 16, 2004 5:45 PM CDT
Dear Friends,
We hope you all had a good weekend. Ours was especially nice. On Saturday we had company at our house. My friend Lisa brought over Carolyn Wyman for us to meet. It was a wonderful visit. She is the cutest little thing. I am sure you guestbook readers know who she is. For those of you who don’t look into the guestbook, Carolyn has written us many inspirational entries. She has been with us since the beginning and it was such a delight to finally meet her. Thank you so much Lisa and Carolyn. Jeff will post a picture of her tonight. I know there are many CaringBridge families that would like to see what this angel looks like.
The rest of the weekend was pretty quiet. I went to church this morning. Jeff did a lot of mowing and then went golfing in the afternoon. Max did some exercises with us. We went for golf cart rides and went for a trip on the trail in town.
Maddie and Sam, although they look different, are really normal kids. Sam seems to be way more active than Maddie at this point. She is still struggling with mood swings and weariness. I am sure you can imagine how blessed we feel that they are both doing so well and will never have to endure the effects of MLD.
Max is still having a hard time getting around. He walked with his walker for me today. His left leg is still struggling but his right leg looked really good. His right leg is the one he hurt and he was really bearing weight on it well. His hands do not do what he wants them to and his speech is very slowed. This is the negative side.
On the positive side, his left hand is staying open for much longer lengths of time. We had to pry it open at the end of the summer. Now he will open it flat for a minute or more at a time. He is using a spoon much better than he was. His legs are bending easier and he is standing much better. In regards to speech, in the last couple of weeks, Max has initiated more conversation than he has in a long time. He is remember ing things better also. These improvements are small but we so joyfully celebrate each one. They are all small reminders that Max will keep improving.
Because Carolyn was coming over I actually dusted. (Jeff is hoping we have company every weekend now.) We have a lot of pictures all over the house. Remember how I used to hate them. Now I carefully cleaned each one and set it back. My favorite is one of the three kids running away from the ocean at the beach in Florida. Maddie and Sam were following their big brother’s lead. That is the past. Here is our present. But our future will have all three kids running on the beach. Thank you, God! I can not begin to express how humbled we are.
Aunt Cindy had a birthday yesterday. Happy Birthday, Cindy!! We hope it was a great one.
Love,
Jane (and Jeff)
Friday, May 14, 2004 6:13 PM CDT
Dear Friends,
Hello Friday! Only two more weeks of school. The time went fast.
Grandma Rhode came over last night so she could watch the two little guys today. I went to Rockford to a meeting at a school (For you school folks: NCA). Maddie and Sam had a nice time with Grandma. I think they missed their mom a little. Thank you Grandma. She even took them to church for their weekly messages with Jamey and Corby. Thanks you two.
Max (and Jeff) went to school all day. He looked so good tonight. There is such a twinkle in his eye.
We are ready for a weekend.
Love,
Jane
Thursday, May 13, 2004 6:02 PM CDT
Dear Friends,
There isn’t much new to tell today. Thank you, God. Max had OT and PT in the morning and school in the afternoon. Maddie and Sam had PT and we went to Greenville for a little while in the afternoon. We just watched Shrek and it is pajama time. We hope all of you are having a good night.
Love,
Jane and Jeff
Wednesday, May 12, 2004 5:47 PM CDT
Dear Friends,
Today was pretty simple. We went for blood draws and to see the doctor in the morning. The draws are not getting easier for Maddie. She really loses it. Sam, on the other hand, doesn’t shed a tear. It was good to see Dr. Konstantelos. We talked about the medication changes that occurred at Duke.
Max went to school in the morning and then we picked him up for afternoon therapies. He had OT and PT. It still hurts to walk on his right leg but he is standing on it better.
The rest of the day is a blur. We gave Kippy a bath, watched Brady Bunch, and cleaned the kitchen at least six times. Jeff took the kids on a golf cart ride.
Saw Charlevoix on CNN this afternoon. There was Cindy S. talking about the war. Nice job Cindy!! What a surprise.
Love,
Jane
Tuesday, May 11, 2004 8:07 PM CDT
Dear Friends,
Quiet day. Max had OT in the morning and went to school for the rest of the day. Maddie, Sam and I cleaned and made meatballs.
Jeff is the busiest in the family. He’s trying to finish up two college courses to renew his teaching certificate, working full time, and taking care of three kids. Yikes. Throw in some water in the basement, the lawn and the dog and you get the picture.
Tomorrow is blood draw. Hopefully it will go well.
Love,
Jane
Monday, May 10, 2004 5:42 PM CDT
** 8:00 pm update. Rumor from the guestbook says that Marilyn and Jan also wore Kick MLD shirts. Thanks Marilyn and Jan!!!
Dear Friends,
I felt so bad after I posted last night. I didn’t even tell you what the kids did all weekend and how wonderful Aunt JoJo and Aunt Sally are.
The kids had a great time. There was arts and crafts, golf cart rides and games. When I came home they had a T-shirt waiting for me painted by the kids. They had taken pictures with a digital camera and had made me bookmarks, magnets and a framed picture. It was all so great.
My laundry was done. My dishwasher was empty. My sheets were washed and put back on the bed. Can they come every weekend?
Since Sunday was Mother’s Day, Bill got his three kids up early and they were here to surprise Sally by 7:50 in the morning. The kids were still in their jammies. They had Donuts and McDonalds for breakfast and a pile of presents for Sally. Bill is unbelievable. Max, Maddie and Sam enjoyed seeing their cousins. It is really great to see how Molly and Max have stayed so close after all that has happened.
It was an exciting weekend for the kids. They were so well taken care of. Thank you so much Joanne and Sally.
I also wanted to mention that we had two runners wearing the ‘Kick MLD in the Butt’ t-shirts in the Grand Rapids Fifth Third Riverbank Run. Our occupational therapist, Jill wore one in the 5K and our friend Cort wore one in the 25 K. Thank you Jill and Cort. I think it could be really fun to see where all these shirts turn up. Anyone want to volunteer for the Boston Marathon????
Today was another busy day. Max went to school in the morning and had OT and PT in he afternoon. Maddie and Sam both did PT and Maddie’s teacher came. The rest of the night was mowing the lawn, grocery shopping and drying out our basement from all the rain.
Carolyn W. You asked for it and I'd do anything for you. I’m going to paste my speech from The Bethany’s Hope Gala below this entry for anyone who’d like to read it. Most of you have probably had enough of me for one night. I don't know how it will come across in writing.
Love,
Jane and Jeff
On April 29th, 1995, in a delivery room in Michigan, a doctor handed me a dark haired bundle of boy. My husband, Jeff and I named this baby Max and we had many hopes and dreams for him. We dreamt of the day Max would learn to drive, go to the prom, get married and have a career he would love. And we just knew Max was going to be one of the greatest minds of his generation.
At age 3, Max got a toilet training seat stuck on his head. We had to admit that Max was most likely not going to be one of the greatest minds of his generation. BUT he could still learn to drive, go to the prom, get married and have a career he would love.
At age 7, Max started to have some coordination problems and by the age of 7 and a half it was obvious something was wrong with him. He was diagnosed with metachromatic leukodystrophy. Our two youngest children were also tested and we found out that all three of our children had MLD.
In the past year all three of our children had a stem cell transplant using unrelated cord blood. Although this is a dangerous procedure, all three of our children are doing well post tranplant. Maddie and Sam were not symptomatic of the disease and still are not. The disease has, however, taken its toll on Max. He is in a wheel chair. He has limited use of his hands and his speech is slow and difficult to understand.
What I want you to know is that Jeff and I still have hopes and dreams for Max. Because of what is being done in the medical field, we look forward ot the day when Max will learn to drive, dance at his prom, get married and have a career he will love. We are very grateful to organizations like Bethany’s Hope and to all of you working to help all people with metachromatic leukodystrophy. Thank you.
Sunday, May 9, 2004 4:16 PM CDT
Dear Friends,
Happy Mother’s Day. The kids had many surprises ready for me when we got home. It was a beautiful surprise. As happy as I was, my thoughts are with the many people who miss their moms and children. Mother’s Day is not always easy.
We had a nice time in Canada. The Bethany’s Hope Gala Ball was beautiful. The theme was butterflies. Butterflies have always been associated with Bethany and it was a wonderful tribute and reminder. The meal was delicious. The people were supportive. Who could ask for more? Thank you to Dave and Lindey McIntyre for all they do and have done. This morning, they very generously gave me a framed copy of a print that Lindey had done. It is called ‘On the Wings of Hope’. We’ll show a picture of it soon. It is a very special piece of art.
http://www.bethanyshope.org/
We missed the kids. It is always good to get home. We hope you all had a fun weekend.
Love,
Jane and Jeff
Friday, May 7, 2004 6:08 PM CDT
Dear Friends,
It was a quiet day. Max went to school all day. Maddie and Sam went to church in the morning and played around the house the rest of the day.
Max and I went to the school carnival for awhile tonight. It was a nice day.
Tomorrow, Jeff and I are going to the Bethany’s Hope (an MLD organization) Gala Ball in Canada. There are 11 of us in our group. It should be a fun. We’ll update again on Sunday.
Love,
Jane and Jeff
Thursday, May 6, 2004 6:36 PM CDT
Dear Friends,
Not too much happening today. Max and I went to Grand Rapids to get his braces adjusted. They added some padding to some sore spots. He is still not putting weight on his right leg due to his fall. He has also been very tired and weak. I think the anti-seizure medication may be getting to him. If he doesn’t get used to it, we will have to back it down a bit. Other than a hot tub tonight and a golf cart ride, he didn’t do much.
Grandma Strawberry came and watched Maddie and Sam while I went to the appointment. They did some schoowork with her. Thanks, Grandma.
I hope you like the picture on top. So many of you made it happen. For those of you who didn’t know, that is Dr. Kurtzberg in the picture. We just think she is absolutely wonderful.
We hope you all have a good night. The final Friend’s episode. Big night! I can’t believe I’ve gotten to the place, where I can sit and enjoy a TV show. God has been good.
Love,
Jane and Jeff
Wednesday, May 5, 2004 6:22 PM CDT
Dear Friends,
What a Wednesday. It was a busy day here. Maddie, Sam and I went to Greenville for our lab draw and our monthly infusion of IVIG. We were there all morning. It is still very stressful for Maddie. Sam is handling it pretty well. I am glad it is over for this week.
We picked up Max from school and they told me he had fallen out of his wheelchair. He isn’t putting any weight on his right leg. It hurts. We can’t see anything unusual. There is no bruising or swelling.
Max had PT, OT and speech. Maddie and Sam played out side for their physical therapy today. They all did a good job. They avoided anything where he stood.
Good friends just stopped by so I’m going to stop for the night.
Love,
Jane and Jeff
Tuesday, May 4, 2004 6:04 PM CDT
Dear Friends,
Today was Jane’s @# birthday. Maddie wanted to give her breakfast in bed. So I poured the coffee and she carried the toast. Breakfast in bed. I think that was the best part of her day. Sounds like she had a rough morning with the kids and meds. They all were in a good mood by the time I got home from school, so I think things got a little better. Happy birthday Jane, you deserve a good one!
Max started out with school this morning. He had PT and OT after school. He went most of the day and then came home to therapy. He’s one tough kid. Maddie and Sam had therapy also. I really think they like working with Beth. Sounds like they have fun and they clean the basement for therapy! Thanks Beth.
All three kids are in their pajamas ready for meds. Jane is out for a few hours, so wish me luck on the meds. They usually take meds good for me when I’m by myself. They must feel sorry for me.
We are heading to Bethany’s Hope Gala this weekend in London, Ontario
( http://www.bethanyshope.org ) We had a nice time last year. Jane didn’t go, but this year she is. It will be nice to get away for a night, but hard to leave the kids. I think we have about 12 people representing the “Kick MLD in the Butt” gang going. I’m sure this year will be as nice as last.
Have a good night.
Jeff
Monday, May 3, 2004 7:11 PM CDT
Dear Friends,
Today was an ordinary day. Max had physical therapy and occupational therapy. Maddie and Sam had physical therapy. Max went to school for the afternoon. Maddie had school at 4:00.
We had a team meeting this morning with three of Max’s therapists. He is doing well and they are making good plans for him.
The speech therapist from school came after school and showed us what she is doing with him to help speed up his speech.
He is a very busy boy. He was a smart alec at school today. It is hard to talk to him about it when we are beaming with joy. Go get ‘em Max.
Love,
Jane and Jeff
Sunday, May 2, 2004 6:11 PM CDT
Dear Friends,
Boy, does it ever feel good to be home. We had a nice fun weekend. Yesterday, family came over for Max’s “Max-ican” Fiesta birthday party. It was a good time. The cousins had fun playing together. The grown-ups had fun catching up with each other. Max had a wonderful time. Nine will be a fantastic year for him.
Today was lazy. The kids were really tired and we didn’t do much of anything.
I wanted to tell you a little more about Dr. Kurtzberg and the fellowships. She was very pleased with the progress we made. She tried to thank us, but we told her we did so little and you all did so much. That is so true. We just asked. So many of you worked hard to make it happen. Thank you so much.
Dr. Kurtzberg believes the fellows will start this summer and they are all eager to get them in place. Big things will happen.
I spoke with Pat, a Minnesota MLD mom, and she is going to get things rolling at the University of Minnesota to start some leukodystrophy fellowships there. The more the merrier.
So much to be thankful for. We thank God for Max turning 9, great family to celebrate with, and three kids doing well.
Love,
Jane and Jeff
Friday, April 30, 2004 6:04 PM CDT
Dear Friends,
We are home. It feels really good. This week was not all that I expected it to be. First of all, I missed Max more than I thought I would. Six days didn’t sound very long, but it sure was.
We were also much busier than I had anticipated. I thought we would have more time to play cards, swim, and find adventure. The time just wasn’t there. Our main problem was that Maddie and Sam just were not feeling well. This created more vomiting than normal and other issues, such as Maddie’s blood pressure. It was actually a very stressful week.
The week of testing went very well though. The good news was really good and the bad news was not too bad. MRI’s, nerve conduction tests, EEG’s and echoes were all good. These kids are as close to normal as they can get. The testing done at the developmental center showed improvement. They have developed at the same rate a normal child would have. This is pretty impressive considering they have been through a transplant in that time. All the testing news was good.
The only negatives were that both Maddie and Sam have developed cataracts. It isn’t serious and it is due to the steroids. This is something to keep an eye on. Dr. Kurtzberg also believes Maddie is having some Graft vs. Host disease. Her hair is not coming in very well on the top of her head and they believe that is GVH. They are not concerned but they did switch her cyclosporine med to FK. There were other meds added for different reasons. For example, they are starting hydrocortisone due to a low level.
Nothing serious. These kids are normal and we are feeling very fortunate. Now we are just trying to get rid of colds and help them feel better.
We were able to visit with some of the many wonderful people we got to know in North Carolina. We saw quite a few other kids and families. Nurse Emily came to visit. I was able to visit with Janet Joiner and Trevor for a while one evening. Emma and her Grandma were also there. It was good to see them.
We were able to talk with Dr. Kurtzberg about the fellowships and they should start this summer. It is very exciting and we are anxious to start.
One hard thing was taking Maddie to the 5200 floor when her blood pressure was high. 16 rooms filled with new kids. It was a reminder of how many sick kids come in and out those doors. It was also a reminder of how hard it must be for the nurses and doctors. We leave and go home. They just keep getting new patients. It has to be tough.
Instead of getting depressed, I need to turn it around. Instead, I thank God that Maddie, Max and Sam are doing well. I pray the same for all the transplant kids.
Time to spend time as a family. We are all really happy to see each other. Max has been all smiles.
Love,
Jane and Jeff
Thursday, April 29, 2004 6:32 PM CDT
Dear Friends,
Well, I think Max had a pretty good birthday. He really misses his mom (I think Maddie and Sam too). He had PT, speech and OT this morning before we went to school. He was a little more with it today. He still seemed tired, but in better spirits. We just hung out tonight, took it easy.
Good and bad news. Jane had a great meeting with Dr. Kurtzberg today. She was very excited about the fellowship. Jane will write more about it, but a few things have change and it sounds great. All good news about the kids test. I just got a call from Jane. They stopped for the night already. Maddie has been throwing up for the last two hours. It sounded a bit stressful. They’ll have a long drive tomorrow. Max wasn’t happy with the news they won’t be here in the morning. But, they’ll be home tomorrow. Until then, have a good weekend.
Jeff
Wednesday, April 28, 2004 5:01 PM CDT
Dear Friends,
Well, one day closer to the troops head for home. Things went pretty good in North Carolina today. Eye doctor, MRI and EEG. Maddie said she was a little fussy for the MRI, but Sam was really good. Maddie hasn’t thrown up today. She’s still not eating much. Sam got sick this morning. They both sounded great on the phone tonight.
Max had a long day. I had early meeting this morning, so I had to wake him up. We never have to wake Max up. He’s always up early. I think he was just real tired all day. He had a rough time with OT and PT. He took a short nap. I checked on him about every 3 seconds. The old seizure is still too fresh. He ate a good dinner tonight and seems to be doing better. He’ll go to bed early tonight so he’s nice and fresh for his NINTH birthday tomorrow. The kid has come a long way since the first news October 2002. It’s great he gets to celebrate with friends at school. Great thing.
Jeff
Tuesday, April 27, 2004 6:06 PM CDT
Dear Friends,
Better news from North Carolina today. Jane and Maddie didn’t get home until 1 am last night. I think they were all a little tired this morning. Jane called earlier and said Dr. Escolar at UNC said the kids were doing great and they’ve shown great improvement. There’s a lot more details but, they were very happy with the kids. Great news. They a spent the afternoon at clinic. They saw Dr Kurtzberg. Jane sounded happy to see her. They’ll have their long visit on Thursday for all the test results. Maddie is still not eating and got sick a couple of times today. Sam sounds like he’s doing good.
They have a busy day again tomorrow. They start out with an eye exam, then their MRI, then they’ll end the day with the exciting EEG. Sounds like a fun day ey! But, it’s the last day of test. Then they’ll be heading home.
Max had a good day. He had PT and OT this morning and a good day at school. He really looks good and seems happy. Must be all this father son time we’re having. He told a couple of teachers we had a party here last night. Kid can’t keep a secret. He’s going to get us in trouble. He did have another visitor tonight. He sure does have fun. Another friend dropped off dinner tonight. Thanks! So, overall, a much better day than yesterday. Tomorrow will even be better.
Jeff
Monday, April 26, 2004 9:00 PM CDT
Dear Friends,
I’ll start out with our day. We had a nice relaxing morning. Max had OT and was a little tired this morning. He really seemed to come around by school time. We went to school around noon. He seemed to have a good day. When ever you ask Max about school, and he says he had a good day, he means it. He looked good. We had our good friend Matt over tonight. He brought dinner (all the way from Grand Rapids) and stayed for the Piston’s game. Some of you may remember Matt and Nora from the Stanton benefits. He is the one who got the Piston’s tickets that Penny Burlison went down for loaded with MLD material. Anyway, thanks for the great dinner Nora. It was good to watch a game with a guy. Guys have to do that once in a while. Max watched some of the game with us and then went to bed.
To North Carolina. It sounded like a long, very stressful day. Lots of test. Lots of crying. Lots of waiting. Maddie and Jane ended up going to 5200 (BMT floor) at 8 pm. Maddie’s blood pressure was high and they wanted to keep an eye on her. Jane called about 9 pm from the floor. She sounded tired and stressed. She wasn't sure how long they were going to keep them. They added a couple of meds for the both of them today. We hope they come back as healthy as can be.
Max and I both miss all three of them. Max got to talk to Jane again and his eyes just light up when he talks to her. A few more days and they all be home. They have a busy day tomorrow at UNC if all goes well. I hope to report better news then.
Jeff
Tuesday AM- Jane and Maddie got back to the hotel about 1 am. They called this morning on their way to UNC for more test.
Sunday, April 25, 2004 5:15 PM CDT
Dear Friends,
I just heard from the troops in North Carolina (6 pm). They were swimming in the pool. I guess they had to swim first before they called to let me know they made it down safe. Max and I miss them already. Max has been asking about Mom since she left. He got a big smile on his face when she called tonight. Their trip went fine. An easy two day drive. Jane said the kids (and Grandma) were good travelers. They hit the doctors office first thing Monday morning. We won’t know too much this week. Thursday’s meeting with Dr. Kurtzberg will tell us more.
Max and I just hung out this weekend. I got some yard work done on Saturday. Max helped a little. He didn’t think it was too exciting. Bob came over today and we put some stairs on our front porch. Thanks Bob. Other than that, we’ve just been hanging out watching tv. How about those Lions in the NFL draft! This is going to be THE year!
I’ll be going to school half time this week. I need to be home for Max’s therapy. We thought we were going to have things worked out with the school by now, but we don’t. So, it should be an interesting week going between home and school. Max and I will have fun.
I will try to update each night as I hear from Jane. If I miss a night, sorry. It just means Max and I have are having too much fun. Until tomorrow, good day.
Jeff
Friday, April 23, 2004 6:15 PM CDT
Dear Friends,
We are packed and ready to go. Maddie and Sam just had a bath. They are in their jammies ready to go to bed soon. They are excited about going back to Duke. They were rattling off names of the staff, asking if we would see them.
I am excited about seeing the people at Duke too. The long trip down doesn’t sound so good though. We’ll make it fun and we are glad my mom is going along.
Max had a full day of school today. He looks great and said that school was good. He’s also in his jammies watching some tv before bed.
We aren’t expecting any big results from all the testing. They’ll use the results and compare them to the original testing done. Well, Jeff will take over with the updating for a while. I’ll call often and tell him what we’ve done. He’ll start updating again Sunday.
We hope you all have a good weekend.
Love,
Jane and Jeff
Thursday, April 22, 2004 7:26 PM CDT
Dear Friends,
Our morning was busy. Max, Maddie and Sam all had physical therapy. Then Max had speech and occupational therapy. He didn’t have school due to an early release.
We rode bikes, went on the golf cart and cleaned the house up a bit. Max and Jeff went and got their hair cut later in the afternoon.
That’s really about it. Sam and Maddie are really congested and I’m glad Dr. Kurtzberg will see them next week.
Love,
Jane and Jeff
Wednesday, April 21, 2004 6:02 PM CDT
Dear Friends,
A busy Wednesday today. We were supposed to have the week off of labs and doctor’s visits, but due to Sam’s hacking cough, I took both Sam and Maddie to see the doctor. He said they were both okay and just to keep an eye on them. That is always good to hear and eases our minds.
We went and picked up Max from school at 11:30. He had Occupational Therapy and Speech Therapy. He did a good job and looked great tonight. His stamina seems to keep surprising us. Go, Max.
We are preparing for our trip. Sam packed three bags today (yikes!). One is an old red purse I had. You gotta love that kid. One of the biggest challenges is making sure I have enough meds to get through the week. I usually go to the pharmacy 3 times a week.
We hope you all had a nice day and have another good one tomorrow.
Love,
Jane and Jeff
Tuesday, April 20, 2004 6:52 PM CDT
Dear Friends,
Another busy day around here. Max had OT and PT. Both Maddie and Sam had PT. Then Max spent the rest of the day at school. I saw him a few times and he looked pretty good. A little tired at the end of the day, but he’s doing well. We thought we had another dog in our house this morning. Sam woke up with a horrible sounding bark for a cough. So he is on a couple of more meds. He was running a low fever tonight. Just enough stuff to keep us worried. Maddie continues to have a cough, but it seems to be getting better. We need to get into the warm summer days to get rid of all this crap. Long warm summer days, mmmm, can’t wait.
Jane has been getting things ready for North Carolina all week. It’s amazing how much planning you have to do for a week of travel, especially with all the meds. Max and I will miss all three of them. It will be hard not to tuck them into bed every night. But, it will be nice to hear all the great results from their test. Our next trip is to St. Louis this June for Max. We’ll go for a short exam and then they will determine if they can help or not. If so, we go back in July or August for a longer stay. THEN, it’s off to North Carolina again for all three. I think I need to show Jim W. how to run my lawn mower again.
Over all it was a pretty good day. Maddie is coloring, Max is finishing up Sponge Bob and Sam is running around doing karate chops. Now it’s off to bed with them all. Have a good day.
Jeff
Monday, April 19, 2004 6:25 PM CDT
Dear Friends,
Boy, did Max look good this morning. The twinkle was back in his eye. He had two therapies this morning and then he went school in the afternoon. The twinkle was still there by the end of the day. Go, Max!
Maddie and Sam did physical therapy in the morning. They had fun. They spent the rest of the day playing and coloring.
The time went very quickly today. Before we knew it, it was time for meds and pajamas.
Someone asked if we would update next week while we were at Duke. Jeff will probably be doing it from home. We won’t have access in Durham.
We hope you all had a good day.
Love,
Jane and Jeff
Sunday, April 18, 2004 5:34 PM CDT
Dear Friends,
It was a warm weekend in Michigan. It felt good to spend some time outside. We went for golf cart rides, rode bikes, picked up pine cones, etc. Grandma, Grandpa and Aunt JoJo all came for a visit this weekend.
Max’s strength has continued to increase and he will be back to his usual schedule tomorrow - half a day of therapy and half a day of school. He is still congested but seems much better. He walked with his walker for me and Aunt JoJo and he did very well.
Next Sunday we will be arriving in Durham, North Carolina for Maddie and Sam’s six month checkup. My mom will go with us. Max and Jeff will stay home. Maddie and Sam will have lots of tests done and we’ll get to see Dr. Kurtzberg. We should be home by the following Friday.
We hope you all had a good weekend.
Love,
Jane and Jeff
Friday, April 16, 2004 6:04 PM CDT
Dear Friends,
It was a beautiful day in Stanton, Michigan. The kids and I went to the church in the morning for Children’s Message and Sunday School. It is nice to watch the kids interact with Pastor Jamey and Corby. They ask such great questions. Thanks Corby and Jamey.
We then did something daring today. We went to the movie theater in Greenville for a 12:00 showing of Home on the Range. We went knowing we’d have to turn around if there were other people in the theater. Only one other lady was there. We went in, scrubbed down the seats with disinfectant wipes and enjoyed the show. It was cute and I think all three kids liked it. I know Sam and Maddie really liked being in a movie theater again.
Max hasn’t gone to school all week. The movie was probably pushing it. His stamina is pretty weak. He looks really tired tonight. We are going to plan on sending him on Monday for his half day.
The rest of the afternoon was spent on the golf cart, watching tv, and cleaning up the house. It was really warm and it felt so good to open up the windows.
A week ago, Max had a seizure. Anything can happen in the world of transplant and MLD. Today was a good uneventful day. Thank you, God.
I’m not going to update tomorrow unless something happens out of the ordinary. We’ll update on Sunday.
We hope you all have a good weekend.
Love,
Jane and Jeff
Thursday, April 15, 2004 5:52 PM CDT
Dear Friends,
We started our day with Physical Therapy and Occupational Therapy. Both of Max’s therapists thought he did better today than yesterday. He is stronger every day. His main problem right now is a lot of congestion.
Maddie and Sam had Physical Therapy too. They had fun and continue to get stronger.
We went in the hot tub and on a golf cart ride. We were all outside for a while, but Maddie and Sam were out most of the afternoon. It was a beautiful day.
There was a really good segment on 60 Minutes II last night about embryonic testing to avoid genetic diseases. Dr. Mark Hughes was on it. He is the doctor does the testing for MLD and other leukodystrophies. It was a good segment and he is a brilliant man. We hope some of you were able to watch it.
We hope you all had a good day.
Love,
Jane and Jeff
Wednesday, April 14, 2004 6:36 PM CDT
Dear Friends,
It is official. We have made 100 partners!!!! Let the remylination begin. Thank you so much to everyone who donated or encouraged people to donate. You are such a diverse group from all over the country.
If people ask or if you are working on something, please don’t think we are done. This is basically the first step for us. We have already been approached by another MLD mom to start the same kind of thing for the University of Minnesota where Max was transplanted. She is going to head that up and we’ll try to support her in any way. There are also some golf outing and other events planned to raise money for the foundation. There will be no stopping us.
However, tonight we celebrate. This past year has brought so many wonderful people into our lives. Some we knew and now see differently. Some we have never met and they feel like old friends. Many people from many places giving us comfort and hope. Thank you, God.
Love,
Jeff and Jane
PS The kids are good. Blood draws went fine. Max is still tired but less than yesterday.
Tuesday, April 13, 2004 8:34 PM CDT
Dear Friends,
I’m sorry I am so late posting. I just got home a little while ago. I said I’d tell you about the fellowships, but I’ll do that tomorrow. I think we are at 99.5 partners.
Max was a little better today, but he is still terribly tired. He did do an hour of PT and an hour of OT this morning. They took it easy on him. I was asked about his speech. It is tired too, but sounds much the same as pre-seizure. He really is doing well. Dr. Kurtzberg warned us that it could take a couple of weeks for Max to regain his strength.
Maddie and Sam are also doing well. Normal 4 and 6 year olds minus some hair.
Lots to be thankful for.
Love,
Jane and Jeff
I just looked at the pictures Jeff posted. Max looks great. Those are all from yesterday. He really is doing well.
Monday, April 12, 2004 5:21 PM CDT
Dear Friends,
Max slept well last night. Considering I kept feeling his head all night. I just needed to reassure myself he was there and not feeling warm. I restrained myself from shaking him awake every hour.
He woke up a little bit better this morning but still terribly drained. He was holding his head up better and eating more. Last night he had a hard time chewing and swallowing spaghetti. At lunch today, he had a Happy Meal. He did a little PT with Jenni, his therapist and then did some work with Jeff in the afternoon.
Maddie and Sam did therapy with Jenni and played for the rest of the day. Aunt JoJo sent Maddie a binder of activity pages. Maddie will sit for hours with that working away. Sam keeps going down into the old basement and getting toys. We clean them up and then he plays. He is single handedly bringing over all the toys one by one. He think s the old basement is this fabulous toy store. Max just smiles as he sees all his old toys fascinating Sam.
The day was full of setting up neurology appointments, getting prescriptions filled, and doing laundry. We were all together, so it was a good one.
Love,
Jane and Jeff
We’ll update you on the fellowship stuff tomorrow night. We have 98 partners and are ready to roll.
Sunday, April 11, 2004 5:15 PM CDT
Dear Friends,
Happy Easter. The bunny did make it to our house. Maddie and Sam had fun looking through their Easter baskets and finding eggs first thing this morning. After the morning fun and meds, I went to the hospital to be with Max and Jeff.
They started getting Max ready for discharge early. We were able to leave by 1:00 in the afternoon. Max’s MRI showed a sinus infection. He is on an antibiotic for two weeks and has started to take Kepra, a new anti-seizure medication that we are hoping has very few side effects. While in the hospital today, he saw the Easter bunny and received a basket from the hospital.
Max is very very tired. That is to be expected after the sedation he received, the anti-seizure meds and the seizure itself. We know this, but it still bothers us. We’ll be glad when he is feeling stronger. It is 6:20 right now and he just asked to go to bed. He’ll be sleeping with me tonight. I can’t let him out of my sight quite yet.
We were starting to forget to take it a day at a time. The reminder has worked.
We hope you all had a good Easter.
Love,
Jane and Jeff
Saturday, April 10, 2004 7:33 PM CDT
Dear Friends,
Thank you so much for the prayers for Max. They continue to carry us along.
One of the things I like best about the CaringBridge is it gets accurate information out to everyone. I’ll fill you in on the events of yesterday and today.
Yesterday, Max didn’t feel well all day. I n the morning he complained of an ear ache. I took him to the doctor, but his ears looked good and his lungs sounded clear. He had no fever. By dinner time, he really looked bad and didn’t want to eat. His nose was stuffy. We took him to his bed to watch tv and gave him some Benadryl. He looked really out of it. We kept checking on him.
Around 7:15 p.m. I went to check on him and he was having a seizure. His left side was jerking. Jeff was just leaving so I ran outside to stop him. We called 911 and acted completely panicked. We were yelling at each other, running around, etc. We were a mess.
An ambulance came within 10 minutes. They gave Max an anti seizure med and the seizure stopped. They then gave him oxygen.
Meanwhile, our neighbor and friend Sue came to help. Thank you, Sue. Then our friends MaryEllen, Eric and Nicki (Thanks guys!) came to take care of Maddie and Sam while we went with Max to the hospital. Remarkably, while Max was being wheeled through the house on a stretcher Maddie and Sam sat and colored and were not even phased by the whole crisis. Maddie told out neighbor, “Oh, Max is having a seizure.” Sam added, “Yeah, he’s going to the doctor.”
I gave Maddie and Sam their meds, called doctor Kurtzberg and met Jeff and Max at Greenville Hospital. They decide to give Max a breathing tube. Dr. Konstantelos came to the hospital and had them get an ambulance to take us to Grand Rapids. Thank you, Dr. Konstantelos. Meanwhile my sisters Sally and Jill came to take care of Maddie and Sam. Don and Marcia, Jeff’s parents came later. Thanks.
When we arrived in Grand Rapids at Spectrum in the pediatric Intensive Care Unit (PICU), we were in good hands. They had good knowledge about MLD, post transplant kids, and best of all, they called Dr. Kurtzberg. They had Max in for an MRI by 12:30 and the tube was out by 4:30 am.
The general guess at this point is that Max had an infection that led to fever that led to his seizure. They believe the damage caused by MLD makes him more susceptible to seizures. The pediatric neurologist we talked with today is planning to start him on a low dose of anti-seizure medicine.
Max is safe. I think he will be home in the next couple of days. As many of you know, our real worry right now is how the seizure will affect his body. Last night, one of my concerns that I fought hard to put out of my mind is would he lose his ability to speak. This morning in the hospital as he said, “I’m awake.” left me with joy I am sure you can imagine. Thank you God for continuing to hold this child.
We aren’t sure how weak he will be or what the physical outcome will be. He looks good and is in God’s hands as he has been all year.
We’ll fill you in tomorrow. Again, thanks for the prayers. The messages in the guestbook are incredible and help strengthen us.
Love,
Jane
Friday, April 9, 2004 5:23 PM CDT
7:30 Max had a seizure and is on his way to the hospital. Please say prayers for our boy.
We ended up at Spectrum PICU in Grand Rapids. We'll probably be there through the weekend.
Dear Friends,
The last day of spring break. (The weekend doesn’t count.) I took all three kids to church this morning for the children’s message and a Sunday school lesson. Thank you Pastor Jamey and Corby. Max has been dragging all week and this morning he looked terrible. At church he complained that his ear hurt.
I took him to the doctor. His lungs were clear and his ears looked good. By dinner time he was whipped. He wouldn’t eat. I took him to bed and gave him some Benadryl. He is congested. We hope he feels better in the morning. It feels weird to be taking care of a sick child with normal illness. Oddly enough, I am not sure what to do. Rash, shingles, fever, I know what to do. Common cold, huh?
Maddie and Sam played all day. They are feeling well and their blood work from Wednesday was fine.
We hope you all had a blessed Good Friday.
Love,
Jane and Jeff
Thursday, April 8, 2004 7:58 PM CDT
Dear Friends,
Rainy day. It was nice to wake up to a dark rainy day. We were all moving a little slower. Beth, the physical therapist, came and got us all moving. She worked with Max. He also had speech and occupational therapy too.
Sam, Max and I went to the library. It always feels good to get out. Other than that, we just goofed around the house. Jeff, Maddie and Sam cleaned up the basement. Max, Sam and I played Kerplunk. We read some books. Jeff got some work done outside. It was a nice day.
We hope you all had a good one.
Love,
Jane and Jeff
Wednesday, April 7, 2004 6:22 PM CDT
Dear Friends,
Today was a busy day. Maddie and Sam needed to give blood and see the doctor this morning. They did very well giving blood. They both were relatively calm this morning. They were also pretty good at the doctor’s office. We had a later start than usual this morning and maybe that helped.
Max had PT, OT and speech this afternoon. He went outside and rode his bike with Beth, his physical therapist. He hadn’t tried this since last summer and I was little nervous if he could still pedal. Beth said he was better than last summer. Thank you, God!
We all went into town and went on the trail to see the turtles at the pond. Max was in his wheelchair and Maddie and Sam rode their bikes. It was a beautiful day and it felt great to be outside. Maddie took off riding her bike ahead of us all (just like last year). Sam was all over the trail, riding like a crazy guy (just like last year). Max was laughing hard at both of them (just like last year).
How can we not be incredibly thankful?
Love,
Jane and Jeff
Tuesday, April 6, 2004 7:56 PM CDT
Dear Friends,
Busy day today. We started out at 8 am with PT for Max, Maddie and Sam. While Beth was here (PT), Jeff the plumber was here fixing some pipes for us, Jill the OT came in and then Brennan and Dave came over to work outside. Crazy morning. What a day!
We got a lot of yard work done today. More than I expected. It felt good to do it all in one day. Still more work to do, but we got a lot done. Max was busy inside. He is still looking real tired. He stayed up too late last night. I don’t think any of us have adjusted to the time change.
Jane emailed Dr. Kurtzberg today. We are trying to organize all the fellow information. We hope to have the first year’s donations all in place by the time Jane and the kids head to Duke later in April. We’ll contact the Saginaw Community Foundation next week to see how close we are. If you are a “team captain”, can you please let us know if all your members have sent in their donations. We hate to bother you with this, but it would help us to get things organized. We’re so excited that we’re so close to our goal and all this is a reality. This has been a fantastic experience for the both of us. We owe it all to the great people who have been following us and supporting us. THANK YOU!
Well, a few more days of spring break. Then it will be back to school and work for Max and me. Our friends will be heading north back to the cold weather. Hopefully, things will be in place for Max and school so we can finish the year with a bang. Have a good break for those of you on break and those of you who will soon have a break. Until next time, good day.
Jeff
Monday, April 5, 2004 5:09 PM CDT
Dear Friends,
We had a nice weekend. Yesterday, we forced ourselves to slow down and not do much of anything except enjoy the kids.
Today we had PT and OT. I went to Mt. Pleasant for a little while and Jeff went to Greenville for grass seed. Tomorrow he is going to have fun in the yard. Maddie and Sam are not throwing up very often at all anymore. They are also taking meds pretty well. Max has been really tired, but that seems to happen one week after Botox.
We hope you all had a good Sunday and Monday. We still think we are at 96 partners, but will let you know officially soon.
Love,
Jane and Jeff
Saturday, April 3, 2004 7:20 PM CST
Dear Friends,
Today was a nice Saturday. We were lazy in the morning. In the afternoon, Aunt Sally came over. Sally, Max and I went to the bowling fund raiser in Remus.
When we go there, there was no place to park and the bowling alley was full. There were two groups of bowlers and we got there as the first group was finishing up. It was a great event. Carolyn, one of the four organizers called a little while ago and the event raised $10,000. Thank you so much to Carolyn, Evelyn, Pauline and Joyce. Thank you to Bob at the bowling alley. He is an angel.
We have some figuring to do and some money to get into the account, but we think we are at 96 partners. We’ll try to get an accurate count soon. How can we ever thank you all?
We’re gong to take the night off tomorrow. Don’t worry. We’ll update on Monday. Have a great weekend.
Love,
Jane and Jeff
96 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Friday, April 2, 2004 5:33 PM CST
Dear Friends,
It was a beautiful spring day today. Maddie and Sam and I got outside to play for a while. Maddie and I took a dip in the hot tub in the morning. We had a nice lazy day.
Max had a full day of school today and went on a trip to MCC to see the play Charlotte’s Web. He enjoyed it.
Spring break starts tonight. Jeff and Max are off of school for a week.
Tomorrow is the bowling event in Remus. Sally, Max and I are going to go in the afternoon. Jeff will stay home with Maddie and Sam.
We hope you all have a good weekend.
Love,
Jane and Jeff
Thursday, April 1, 2004 7:21 PM CST
Dear Friends,
Sunny but not yet warm. Now that is an April Fools. We are glad March is over and look forward to spring and getting outside more.
Today was a rough day for us. Maddie on steroids isn’t easy. We are trying to work through it but it is hard to discipline an irrational child. It is especially hard when you are so happy they are alive and well but you have to be mean.
All three kids had PT this morning. Max had OT and speech. He went to school for the rest of the day.
As I’m sure everyone has, we had lots of extra frustrations through out the day. So much of our time is spent advocating for the kids and trying to get them what they need. It is amazing how different life is from a year and a half ago. I have such a new perspective now as a mother, a teacher and a community member.
I wrote a few days ago about how each day with the kids is a gift. We appreciate today and thank God for it but really look forward to starting a new one tomorrow.
Love,
Jane and Jeff
90 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 100 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Wednesday, March 31, 2004 6:10 PM CST
Dear Friends,
Today was blood draw day. Sam did well. Maddie was scared but not as scared as last week. They also had an infusion of IVIG. This is a medication they get monthly. They used to get it weekly in North Carolina. It takes a couple of hours and we watched Brother Bear while we waited.
My dad picked up Max for us because we weren’t sure we would be home in time. He had been at school in the morning and in the afternoon he had PT, OT and speech. He is a busy boy. All three therapists commented on improvement they had seen this week. His occupational therapist commented on how well and how long he held his left hand open. His speech therapist commented on how well he was doing remembering stories they were telling. His physical therapist commented on his overall strength and called me into the room to see how well he went from sitting to standing. He is working hard and is proud of his improvements. It’s a long road, but Max is moving along on it. Go Max!
We thought of our friends often and hope they found strength today.
Love,
Jane and Jeff
90 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 100 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Tuesday, March 30, 2004 3:49 PM CST
Dear Friends,
This is going to sound familiar. Unfortunately, it has been an ongoing entry topic this past year. We are again hurting for new friends.
Please say prayers for the Joiner family. Trevor’s second transplant did not work. They have dealt with more hurt in the past 6 months then anyone should have to endure.
On our last day of clinic, a little friend of ours named Julien gave me a kiss through his mask. He was a beautiful boy with amazing parents. He had been transplanted before Maddie and Sam and we had gotten to know his family. He had cancer but was doing well post transplant. The cancer came back after their return home. He died yesterday morning. Please keep the Mezey family in your prayers.
Too many kids. Too much pain. If there’s a purpose to this website, I hope it is that you will hug your kids a little tighter, knowing each day with them is a gift.
Love,
Jane and Jeff
Monday, March 29, 2004 7:10 PM CST
Dear Friends,
We started our day with physical therapy. All three kids worked today. Then Max had OT and school. He looked pretty tired tonight.
Maddie , Sam and I played and kept busy around the house. We tried to take a golf cart ride, but it was too cold.
Tomorrow, Max has therapy in the morning and the afternoon off due to early release at school. We’ll have to plan something fun for tomorrow.
We hope you all had a good day.
Love,
Jane and Jeff
90 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Sunday, March 28, 2004 6:34 PM CST
Dear Friends,
It was a nice Sunday. Maddie woke up feeling well. Aunt Joanne stayed around so Jeff and I could both go to church. Thanks, Joanne. Aunt Jill came for a visit. She had a good time playing with the kids. Max did some walking with his walker for her. He walked out to the old family room. I took off his braces and let him relax and watch TV. Then he said, "I want to walk." So we put his braces back on and let him go again. Darn, he is a great kid.
It was sunny and warm later in the day. We took another hot tub. Jeff worked outside on the lawn. It was just a nice and relaxing day.
We added later last night that Penny had a good time at the Piston’s game. She met George Blaha, Rick Mahorn and Walt Frasier. They took some MLD pens and pencils and some of the brochures we made. Thanks, Penny.
Carolyn, my dad’s former student, called tonight and it sounds like great things will be happening at the bowling alley in Remus next Saturday. Thank you.
We are up to 90 partners. We are counting Kathie Mayo’s new group, the Rachael’s 3’s. There is still an opening left if any is interested in making a $100 donation for this year and next. Just let her know. Her email is in the guestbook.
Thank you to St. Mary’s 5th and 6th grade class from Charlevoix. The SpongeBob blanket came. We’ll try to get a picture on soon. We love it. Thanks.
We hope you all had a good weekend.
Love,
Jane and Jeff
90 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Saturday, March 27, 2004 7:11 PM CST
Dear Friends,
I am going to make this a quick one tonight. Joanne has been here today and she’s spending the night. We are also watching the Pistons and looking for Penny in her mLD shirt.
Everything is well. Maddie has had a stomach ache most of the afternoon after eating an extraordinary amount of popcorn chicken. She just threw up and we are hoping she feels better and that is all that was wrong. The smallest of pains seem large post transplant.
We filled the hot tub up today. The boys and I went in for a nighttime soak. It felt good. It felt like old times.
Penny and her family had a great time tonight at the Piston's game. She met George Blaha, RICK MAHORN ( BAD BOYS), and Walt Frasier. They all took some MLD info with them and signed Penny's shirt. It would be great to become partners with the Detroit Pistons and Joe Dumars! Thanks Penny, I'm glad you guys had a good time!
We hope you are all having a good weekend.
Love,
Jane and Jeff
90 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Friday, March 26, 2004 6:38 PM CST
Dear Friends (have to start like Jane),
It sounded like it was a pretty good day around here and at the doctor’s office. Max had his botox injections today. He told me it hurt when they stuck the needles in, but Jane said he was very brave. He relaxed the rest of the day. We gave him the afternoon off of school. We’re so nice.
Maddie beat Grandpa Rhode at cards all morning. He wants to take her to Vegas also. Thanks Grandpa for helping out today. It sounds like they all had a good time with him.
One thing about being back to work is you REALLY appreciate Fridays again. I couldn’t have told you what day of the week it was when we were in Minnesota or North Carolina. So, it’s great to have Friday here and spend the weekend with the kids.
Good news from North Carolina today. Emma (MLD transplant) heard that she was 98% donor cells. We’re so happy for her and her family. Trevor will be right behind her. Those two families (and many others) are continually on our minds.
On a sports note: Charlevoix (my home town) is in the state finals for boys basketball Saturday. It sounds like the whole town is headed for East Lansing. Good luck Rayders! Remember, watch the Piston’s game Saturday night (7:30 pm) and look for the wild MLD fans court side. They’ll be on the opposite side of the players. Hope they see a win!
That’s all for today. Jane is out with some friends celebrating two birthdays. I’m glad she went out. She needed a break from the house. I'm off to set up camp tonight. Sleep out for the kids in our bedroom. Not a lot of sleep tonight.
Have a good weekend!
Jeff
On Saturday, April 3rd, Bob McCall, owner of Remus Bowling Center is hosting his yearly fundraiser for "Make a Wish" and all of the profits will go to the Trimper family for funding the fellowship at Duke. Bowling begins at 1 pm. Anyone wishing further information call 989-967-8251.
90 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Friday, March 26, 2004 6:35 PM CST
Dear Friends (have to start like Jane),
It sounded like it was a pretty good day around here and at the doctor’s office. Max had his botox injections today. He told me it hurt when they stuck the needles in, but Jane said he was very brave. He relaxed the rest of the day. We gave him the afternoon off of school. We’re so nice.
Maddie beat Grandpa Rhode at cards all morning. He wants to take her to Vegas also. Thanks Grandpa for helping out today. It sounds like they all had a good time with him.
One thing about being back to work is you REALLY appreciate Fridays again. I couldn’t have told you what day of the week it was when we were in Minnesota or North Carolina. So, it’s great to have Friday here and spend the weekend with the kids.
Good news from North Carolina today. Emma (MLD transplant) heard that she was 98% donor cells. We’re so happy for her and her family. Trevor will be right behind her. Those two families (and many others) are continually on our minds.
On a sports note: Charlevoix (my home town) is in the state finals for boys basketball Saturday. It sounds like the whole town is headed for East Lansing. Good luck Rayders! Remember, watch the Piston’s game Saturday night (7:30 pm) and look for the wild MLD fans court side. They’ll be on the opposite side of the players. Hope they see a win!
That’s all for today. Jane is out with some friends celebrating two birthdays. I’m glad she went out. She needed a break from the house.
Have a good weekend!
Jeff
Thursday, March 25, 2004 5:35 PM CST
Dear Friends,
Today has been quite a day. Max had three therapies in the morning. Maddie and Sam did PT. All three kids did well.
Then the Brady Bunch Hawaii finale was on. Maddie and Sam were glued to the TV. It just cracks me up.
Max went to school in the afternoon and Maddie’s teacher came later. During recess at school, Jeff looked out his window and there was Max being pushed and surrounded by many, many friends. Jeff claims there was an enormous grin on Max’s face. It was good to see him outside with kids.
While Max was at school, Maddie, Sam and I went to see my grandma in Remus. It was good to see her. It had been way too long. The two little guys really like to be home, but they had a good time at Great Grandma's house. Thanks, Grandma.
This was all great, but the big news is about the fellowship program. We are now up to 89 partners. We had a very generous donation from our brother-in-law Bill’s company, InSource Partners. Thank you Bill for working on that. We are so close to our goal. Thank you so much to all our partners.
We also wanted to mention that on Sturday night at 7:30 the Pistons play Knicks. At the Stanton benefit there were tickets for floor seats for that game. Penny Burlison bought them and will be at the game with three family members. They are going ot be wearing 'Let's Kick MLD in the Butt' shirts and passing out brochures, pencils and business cards. Tune in and see if we can spot them. They are in the second row on the floor. Thank you so much Penny. Go Pistons!
Speaking of basketball, Go Rayders! We heard it was a good game today.
Thank you, God for our many blessings!
Love,
Jane and Jeff
On Saturday, April 3rd, Bob McCall, owner of Remus Bowling Center is hosting his yearly fundraiser for "Make a Wish" and all of the profits will go to the Trimper family for funding the fellowship at Duke. Bowling begins at 1 pm. Anyone wishing further information call 989-967-8251.
80 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Wednesday, March 24, 2004 6:02 PM CST
Dear Friends,
Today was doctor day. We went and gave blood first. Sam didn’t cry at all. He did very well. Maddie didn’t handle it well. I am starting to feel really bad for her. She is just so scared. After the blood was done, we went to see Dr. Konstantelos. Everything looks good. Maddie’s rash comes and goes on her hands. But they are doing very well. Thank you, God.
Max had school in the morning and speech and PT in the afternoon. He was pretty tired today. Sam and Maddie also did PT. Beth, the therapist, also showed Jeff how to do the stretching of Max’s legs. He’ll try to do it on days when we don’t have therapy. It’s very painful and I couldn’t do it. I’m really proud of Jeff.
The biggest news around here for the past couple of days is that The Brady Bunch is in Hawaii. Maddie and Sam saw the first two episodes and the final one is tomorrow. I can’t believe how much they love that show. I can’t believe I actually taped it because we had to go get Max when it was on.
Our partnership is still holding at 80. It is overwhelming and we look forward to talking with Dr. Kurtzberg and getting it rolling.
We hope you all had a good day.
Love,
Jane and Jeff
On Saturday, April 3rd, Bob McCall, owner of Remus Bowling Center is hosting his yearly fundraiser for "Make a Wish" and all of the profits will go to the Trimper family for funding the fellowship at Duke. Bowling begins at 1 pm. Anyone wishing further information call 989-967-8251.
80 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Tuesday, March 23, 2004 7:53 PM CST
Dear Friends,
We started the day with some rest and relaxation. The physical therapist wasn’t feeling well and had to cancel. Max did have OT and then went to school in the afternoon. Maddie and Sam and I decided to get out of the house for a while. We picked up some prescriptions. There was only one car in the Family Dollar parking lot so we went in. Maddie and Sam wore their masks and had a great time picking out toys. Maddie bought all police officer/spy gear. Sam went more for the action heroes. They have been saving their money for so long just waiting for us to take them into a store. After that, we went to the library. We didn’t stay long, but it felt so good to be out and about in the ‘real world’. When we got home, they played and played with their new toys. Maddie had all her gear tucked around her and was wearing dark sunglasses. Sam just sat and watched and wished he had bought what she did.
We had to pick up Max from school today. I wish I had taken a picture of Maddie. She was sitting in the back of the van and had on her purple fur coat (an Aunt JoJo purchase) and her handcuffs. That’s my girl.
We hope you all had a good Tuesday.
Love,
Jane and Jeff
Monday, March 22, 2004 5:54 PM CST
Dear Friends,
Not much new tonight. The kids are all well. They had PT this morning. Max also had OT, and then he went to school. His legs are really toned up again as the Botox has worn off. He will get new injections this Friday. It is amazing how much stronger he is than before the first injections. Botox has been a good thing for us.
Maddie and Sam played all day. Due to grouchiness (all three of us), a mandatory rest time was instituted. It was good while it lasted. Those two have spent A LOT of time together in the past year.
This fellowship idea just isn’t stopping. We are now up to 80 members. Wow. Also, tonight in the guestbook, our friend Kathie from Minnesota is trying to create a new team called ‘Rachael’s 3’s. If you’d like to donate $100 for both years, look in the guestbook and contact Kathie. Kathie is even donating cards she made from her daughter’s artwork to each member. Thanks, Kathie.
Kathie actually posted her guestbook entry on Saturday, but our Saturday entries have mysteriously disappeared. I hope we are not missing something else important.
We have much to be thankful for tonight. As Ron said in the guestbook, “Blessings abound!” Thank you, God.
Love,
Jane and Jeff
On Saturday, April 3rd, Bob McCall, owner of Remus Bowling Center is hosting his yearly fundraiser for "Make a Wish" and all of the profits will go to the Trimper family for funding the fellowship at Duke. Bowling begins at 1 pm. Anyone wishing further information call 989-967-8251.
80 partners!! 20 to go!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Sunday, March 21, 2004 5:10 PM CST
Dear Friends,
We had a relaxing day today. I went to church in the morning. Max and I went to Mt. Pleasant for the afternoon. We did some shopping and saw Aunt JoJo. It was really fun to spend time with just him. Maddie, Sam and Jeff stayed home and played lots and lots of games.
Our fellowship fund currently has 79 partners. Only 21 to go. We’ve made some brochures that we will be sending out soon asking people or groups to become partners. We’ll try for individuals who do not read the website but may have interest and groups who normally give away to charitable funds. If you think you may know someone who would be interested, please let us know their name and address. We feel overwhelmed by how generous you have all been to us. We never dreamed that just by putting the information out on our website that we would collect this much. Many, many kids and parents thank you.
Time for baths. Thank you, God.
Love,
Jane and Jeff
79 partners!! Only 21 to go!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Saturday, March 20, 2004 7:20 PM CST
Dear Friends,
A quick one tonight. All is well in the Trimper house. Maddie hasn’t thrown up since we increased her steroid. Max and Sam are stuffy but good. Our friends Polly and Jon came for a visit. We had a good time. Our partnership numbers are on the rise. I’ll tell more tomorrow. We hope you all enjoyed your Saturday.
Love,
Jane and Jeff
77 partners!! 23 more to go!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Friday, March 19, 2004 5:16 PM CST
Dear Friends,
Central Montcalm didn’t have school today. It was a nice surprise for Max and Jeff. Max slept in until 8:00 and I think he really needed it. He is pretty congested.
Maddie was up twice last night throwing up. When she has thrown up before, it has always been around med time. Last night worried us a little because it was out of the blue. She threw up again this morning. We gave her her meds and emailed Dr. Kurtzberg. She suggested we give her more steroid. We did. Maddie took a long nap and looked better. She ate some popcorn chicken for lunch and two chicken legs for dinner. Her belly must be feeling better.
We are still moving along on the fellowship fund. We now have 76 partners. Yowza! Only 24 more to go.
Other than that, it was a quiet day. I am actually not sure where the time went. We hope you all have a great weekend.
Love,
Jane and Jeff
76 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Thursday, March 18, 2004 6:43 PM CST
Dear Friends,
Boy, not much to report tonight. Thank you, God. Max had PT, OT, and speech this morning. He took a field trip in the afternoon with his class and loved it. He came home happy as a clam. Maddie and Sam had PT this morning. They played and watched movies in the afternoon.
Maddie had school late this afternoon. Spaghetti for dinner. Kids are tucked in and tuckered out.
Love,
Jane and Jeff
Wednesday, March 17, 2004 7:09 PM CST
Dear Friends,
Happy St. Patrick’s Day. Truthfully, we didn’t remember until we heard it on the radio on our way to give blood. They did well today. Maddie gets very, very anxious before it starts, but they were better than last week which was better than the week before. The doctor’s visit was good too.
We had a team meeting this morning with all of Max’s therapists. They understand what his weaknesses are and are planning good things for him. My dad came and watched the two little guys while I met with the team. Thanks, Dad.
Max had a full day of school. Even with a cold, he is handling the full day well. He looked pretty good by the end of the day. Big sparkly brown eyes.
Maddie and Sam played and watched TV for the rest of the day. They are always glad when Jeff and Max get home.
Thanks to Corby, our friend, we had a great dinner of corned beef and cabbage. I feel Irish already and very full. Thanks, Corby.
Our partnership is up to 73. Thank you to all our members.
Love,
Jane and Jeff
73 partners!! Only 27 to go.
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Tuesday, March 16, 2004 8:23 PM CST
Dear Friends,
O.K. We’re a little late tonight. Sorry. All is well. The kids had a busy day. Max with PT, OT and school. Maddie and Sam with Brady Bunch, arts and crafts and Tarzan. Tomorrow is doctor day. We also have a team meeting with Max’s therapists.
Sam really wanted to watch Lilo and Stitch on the Disney channel today. We had to leave the house at that time. I told him I would tape it for him. I found an old tape and put it in just to make sure it wasn’t something important. It was of Max’s sixth birthday party.
I have mastered the ability to live in the moment. I have not been able to look back or think too far ahead.
Everyone was here. The kids were young and beautiful. It was so painful to watch how beautifully Max moved. How perfect his speech was. He ran across the yard. He made faces in Jeff’s camera. I had tears streaming down my face.
Maddie and Sam came in to watch with me. Maddie couldn’t figure out why I kept watching if it made me cry. How to even begin to explain??
I sat in some type of mourning. On Joan of Arcadia they called it mourning the future you had hoped for. I can’t explain it. My son is here. Others are not. My son is different. But he is still oh so Max. I can hold him. I can talk with him. I am so thankful for that. Yet, I still feel something I can’t explain.
As the video went on, Jeff got a close shot of Max. Actually, it was his ear. It looks just like his ear now. He zoomed back and I saw his nose and eyes. This is the boy I tuck in each night. I could hear his laugh. This is the sound that rings through our house. Maddie was following him around adoring his every move. Just as she does now.
By the end of the video, my eyes were dry. I felt a renewed fight begin to grow inside of me. I reminded myself of the hope that was within reach . I appreciated the fact that my boy was at school and would soon be home in his own house. Thank you, God.
Why am I telling you all this? I have no idea. It is something I needed to write down. When I enter these ‘types’ of entries, people feel bad for us. Don’t. Sometimes people call, thinking I want to talk. I don’t. I’m just sharing what I want to share. We are okay and living. Someday when Max is 100%, I will look back at his eighth birthday and remember how far we have come. I will thank God every day and every night, because only through our faith did we make it to that point.
Love,
Jane
71 partners!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Monday, March 15, 2004 7:15 PM CST
Dear Friends,
We were busy this morning with therapies. All three kids had PT. It is great how much stronger Maddie and Sam are getting. When we came home, they were walking and holding on to the next step going upstairs. Now they can walk up the stairs holding a ball. Max also had OT this morning. He wasn’t himself. He is also coughing. I think he’s catching another cold. It really drags him down. He did go to school for the afternoon.
Maddie took an hour and a half nap. Sam played and played. I cleaned out a closet. That’s about it.
We hope you all had a good Monday.
Love,
Jane and Jeff
We currently have 71 partners and will keep going until we have 100!!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Sunday, March 14, 2004 1:02 PM CST
Dear Friends,
Brrr. It’s a cold and dreary Sunday. The kids are playing in the basement with Jeff. Max took a walk with his walker. Jeff was behind him and I was in front. He’s a long way from independence, but we are really happy with how well he is doing. We’ll take another loop later in the day. Jeff went to church this morning. The kids watched a movie. Sam goes all around the house and plays with toys. Maddie loves to play rummy with anyone who is willing. That’s about all we’ve done today.
Yesterday Aunt JoJo came for a visit. The kids had fun, and Jeff and I went to Greenville. We also got a lot of work around the house done.
Nice and easy weekend. We are starting to take for granted that Sam and Maddie feel well. We have to remind ourselves that it isn’t over and take each day as it comes.
Jeff’s official comment about returning to work, “It’s good but hard to be away from the kids.”
We hope you all had a great weekend of rest and fun. If you’d like to read something inspiring go to
www.caringbridge.org/ia/sam .
Our Ronald McDonald House friend, Mary, wrote about her teenage son and it is beautiful. She is amazing.
Love,
Jane
March 2: 100 for 100 percent healing! We are currently at 71 partners with some others still pending.
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Friday, March 12, 2004 4:56 PM CST
Dear Friends,
I am going to do a quick update tonight. All is well. Max went to school all day. Maddie and Sam and I were at the house mos to f the day, but did get to go tot the church for Sunday School and the children’s message. Thank you again Jamey and Corby. I have got ot remember my camera next week. Today they were sitting at the piano with Jamey and it would have made a beautiful shot. It made a beautiful memory.
I’m going to do something rare this weekend. Unless something really interesting happens tomorrow, I’m going to skip the entry. Please don’t worry if nothing new is posted. I’ll update on Sunday night.
Someone asked in the guestbook about how Jeff’s return to teaching is going. I’m going to let him tell you about that. I know that we miss him around the house - especially Maddie. Maybe I can get him to write about on Sunday.
We hope you all have a great weekend.
Love,
Jane
We have 71 partners!
March 2: 100 for 100 percent healing!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Thursday, March 11, 2004 7:11 PM CST
Dear Friends,
We kept ourselves pretty busy today. Mighty Max had PT, OT and speech this morning and school all afternoon. Maddie and Sam had PT in the morning, and Maddie’s teacher came in the afternoon.
Our friends Kay and Wendy from Chesaning stopped by this morning. They brought cookies. Thank you. I did share with the kids.
My Dad came after lunch. He watched Maddie and Sam while Jeff and I had a meeting with the school to come up with a plan for Max.
We hope you all had a good day. It started out sunny and beautiful and turned into a cold winter mess. You gotta love Michigan in March.
Love,
Jane and Jeff
March 2: 100 for 100 percent healing! We are at 70 and need 30 more or $60,000.
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Wednesday, March 10, 2004 7:23 PM CST
Dear Friends,
Wednesdays are busy around here. Maddie, Sam and I left early this morning for our weekly doctors appointment and blood draw. The kids did better this week, but they really don’t like it. So far, all the finished labs look good. I am sure we will talk with Duke later this week.
Max had school in the morning and PT, OT and speech in the afternoon. He works so hard.
Maddie had school later in the afternoon. I went for a haircut. When I got home Jeff had them all in PJ’s. Sam and Maddie were waiting for meds. They are all tucked in now and fast asleep.
I’m going to post the fellowship information and journal entry below. We have stalled at 69 and we think that is fantastic. Team Trimper members are brainstorming people or organizations who may have an interest in this that may not read the website. We will see what we can do. The town of Remus, Michigan (just north of Stanton and my Dad’s hometown) is working on some things - one being a bowling event in April. Memorials are also being sent in honor of Ross Joiner. Our high school student council at Central Montcalm is also working on a dance fundraiser. We are so thankful for everyone’s help. I did want to mention that we had a call from the Saginaw Community Foundation and gift letters/receipts are running behind by 2-3 months due to an unusual number of donations-partially our fault. Hooray! If you don’t hear from them right away, don’t worry.
Love,
Jane and Jeff
March 2: 100 for 100 percent healing! We are at 69 and need 31 more or $62,000.
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Tuesday, March 9, 2004 7:18 PM CST
Dear Friends,
Thanks for the ladybug/Asian beetle suggestions. I kept vacuuming today. They sure congregate in the weirdest places. As a couple of you pointed out, how blessed we are to be worrying about insects right now. Thank you, God.
Max was worked hard this morning by his physical therapist and his occupational therapist. He looked pretty tired when I dropped him off at school for the afternoon. He looked great at the end of the day though. His sense of humor is so wonderful and he laughs a lot. He also brings out a wonderful side of Maddie. She loves him so much and turns on the charm as soon as he gets home. She really doesn’t see anything wrong with him and acts like the typical little sister who wants her big brother’s attention. It is magical to witness.
Maddie and Sam did a little PT this morning. They have become interested in Pokemon and played with Max’s old Pokedex (Thank you Scott P.) . It’s fun to see the toys make a second round.
Our partner list is growing little by little. I’ll give a bigger update tomorrow on it. Team Trimper is currently brainstorming how to make up the last 30 partners or $60,000. We’ll see what we can come up with.
Tonight I was reading Max a chapter out of Tales of a Fourth Grade Nothing By Judy Blume. The chapter was called ‘My Brother the Bird’. Before we started, I asked Max why the chapter might be called that (always a teacher). He said, “Because his head is in the clouds.” Darn good answer!
Love,
Jane
Monday, March 8, 2004 6:16 PM CST
Dear Friends,
Still no rash. Hooray. Maddie and Sam are having good days. Maddie was a little irritable today, but it’s okay. All three kids had PT this morning. Max also had OT and then went to school for the afternoon. I cleaned out a closet. I also vacuumed approximately 500 lady bugs/ Japanese beetles - what ever they are. I may be exaggerating, but I have declared war on those little critters. If anyone has a secret for ridding the house of them, please share it. They are harmless and almost cute but enough is enough.
We hope you all had a good Monday.
Love,
Jane
Sunday, March 7, 2004 7:11 PM CST
Dear Friends,
A nice Sunday. I went to church. The kids played most of the day. Max took two walks with our help around the kitchen.
Maddie’s rash has momentarily and hopefully forever disappeared. We know it can come back but we are thankful that it was manageable. Thank you, God.
Love,
Jane
We are up to 67 partners. Thank you.
March 2: 100 for 100 percent healing!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Saturday, March 6, 2004 7:04 PM CST
Dear Friends,
Today Maddie, Sam, Max and I went to Chesaning to see Grandma and Grandpa Strawberry. We haven’t been there since August. The kids had a lot of fun and I went off with Aunt Sally for ‘sister fun’. Maddie was ready for her mommy by the time we got back. We’ve become awfully attached in the past year. Thanks Mom, Dad and Sally. Janet K, if you are reading this, I loved seeing your big face on the billboard on M57. It made my morning.
Jeff stayed at the house and got blinds hung, rooms painted, and a whole bunch of other things done. What a guy!
We hope you all had a good Saturday.
Love,
Jane
Friday, March 5, 2004 6:07 PM CST
Dear Friends,
Max went to school all day. Maddie and Sam went to church today. Since they can’t go to church on Sunday due to the crowds Mrs. Helms and Pastor Jamey had their own little church. Pastor Jamey did a children’s message with them and Mrs. Helms did Sunday school. The kids really liked it. It got them out of the house and it was nice to see them looking around the church and remembering it. Thanks Jamey and Corby.
Joanne came over in the afternoon. She painted buckets with the kids and I got out of the house. Of course the kids had fun. Thanks, Joanne.
Maddie’s rash is looking better. We’ve increased her steroids for three days and it has helped. Sam continues to look good.
We hope you all have a great weekend.
Love,
Jane and Jeff
March 2: 100 for 100 percent healing!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Thursday, March 4, 2004 7:09 PM CST
Dear Friends,
Some days I just don’t have much to write about. All three kids had PT this morning. Max had OT and speech and then went to school for the afternoon. Jeff had parent teacher conferences again. We are all pretty tired tonight.
Maddie and Sam played outside for a while. I am sure it did them good, and I know it did me good to see them riding bikes again. Small simple pleasures. It’s what we are most thankful for.
The highlight of my day was getting Max dressed this morning. I was rambling on about what he was going to wear. He said,”I want to walk.” I just smiled. He smiled. He knows it’s going to happen.
Go get ‘em Max!
Love,
Jane and Jeff
Our partnership is up to 66. It just hasn’t stopped growing. We’ve had other MLD families or members join. It’s been good to talk with them or email them. It’s also so nice to have their support.
March 2: 100 for 100 percent healing!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Wednesday, March 3, 2004 5:20 PM CST
Dear Friends,
Today was doctor day. Maddie and Sam had a tough time giving blood today. They just aren’t getting used to the ports. They are fine once we leave. The staff at the hospital could not be nicer or more patient. Next week, I’ll give them the choice between port or arm. We’ll see how it goes.
After blood, we went to see the doctor. They checked out well. My only concern was Maddie has a rash on most of her body. When she had the rash before, the cream we were given made it disappear. It hasn't disappeared this time. I shared my concerns with Dr. Konstantelos and he is gong to talk with Duke. Since that time, I spoke with Sue at Duke and she was going to talk with Dr. Kurtzberg. We’ll figure it out and right now it is just a mild rash and a mild concern.
Maddie’s blood work looked better this week. Thank you, God. Thank you prayer force. The med adjustments seemed to work out okay. Tomorrow we will hear from Duke on them and I hope they also think they are better.
Sam is rolling right along. His walk is improving with therapy and there just aren’t any concerns about him at the moment. Again, thank you, God.
While we were at the doctor, Max was busy working at school. I think they liked having him fresh and ready in the morning.
Our afternoon was a revolving door of therapists. Max had OT, PT and speech. Maddie and Sam had PT. Maddie had school. I really, really like the people who come to our home. We are so lucky.
Pot Roast for dinner. This is shocking for people who know me well. It’s getting to be time for baths and jammies. I love my kids.
Love,
Jane and Jeff
PS- Two new members were added today. Our total is 64!!!!!!!!!!
March 2: 100 for 100 percent healing!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 percent.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophy will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Tuesday, March 2, 2004 7:19 PM CST
Dear Friends,
Happy Birthday Grace and Uncle Mark!
Another busy day for the Trimper family. Max started his day with an hour of OT. He then went to school for the rest of the day. Sam and Maddie and I kept busy around the house until after school. Jeff had parent teacher conferences tonight. Max, Maddie and Sam had PT. Throw in baths, meds and bedtime and that’s about it.
Our foundation fellowship drive now has 62 members. Thank you so much to our new additions. The reality of this is amazing.
We hope you all had a good Tuesday. Tomorrow we have our blood draws and our doctor appointments. Max has school, OT, PT and speech. Another busy one. Each busy day brings health and progress. Thank you, God.
Tomorrow will be a tough day for the Joiners. Please continue to pray for them.
Love,
Jane and Jeff
March 2: 100 for 100 percent healing!
Dr. Kurtzberg said a second fellow would “ make progress with leukodystrophies happen ten times as fast.”
Feb. 18: I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 percent healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max.
While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Monday, March 1, 2004 6:12 PM CST
Dear Friends,
We had therapists in the morning. Max had PT and OT. Maddie and Sam did PT. They all worked hard. Max worked particularly hard in PT this morning. It wasn’t fun. Beth, his therapist, called me into the room when they were nearing the end. She showed me 4 or 5 things Max could do that he couldn’t two weeks ago. It is progress and his hard work is paying off. He walked with his walker from the new room to the dining room. He didn’t like it, but it was the quickest I have seen him walk in a long time. Beth made the comment that his brain was relearning the walking motion. Go Max. We are enormously proud of him.
I took Max to Dr. Bloom , his rehab doctor in Grand Rapids this afternoon. He looked at Max’s braces and we discussed getting more Botox. He will have that done on March 26th. We then went and had his braces tweaked so they don’t hurt Max as much.
My dad watched Maddie and Sam while we were in Grand Rapids. When I came home the laundry was done. What a guy!
Our foundation partnership is officially at 59. Thank you so much. Team Trimper will be taking over and working hard until we reach the 100 mark. 100 for 100 percent h ealing.
Please continue your prayers for the Joiners.
Love,
Jane and Jeff
I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 ealing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max. While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Sunday, February 29, 2004 7:25 PM CST
Dear Friends,
We are home and healthy. Tonight we are going to write about someone else.
In the past 14 months, we have mourned the death of many children. In almost all the cases, we did not know the child well but had developed a relationship with the parents. Yet in every case it hurt.
The loss of Ross Joiner is different. We did know his parents, who are strong courageous people, but we also knew him. Ross was beautiful and perfect - and only two years old.
We first met Ross in their apartment. He was jumping from the couch to the coffee table to the floor. He was energetic and fun. He was laughing and loving the attention of his older brother Trevor.
The second time I saw Ross he was at the playground of the apartment complex. Max and Sam laughed as Ross ran around and around Max in his wheelchair. He kept grabbing and pushing at Max’s foot to get it back in place. He copied his brother and pushed at Sam’s cheeks. (They were huge from steroids and very hard.) He was laughing and smiling and having a good time. On the way back to the apartment, Max and Sam kept laughing and saying how cute he was.
The last time I saw Ross, he was lying in his crib-like hospital bed taking a nap in his diaper. He was beautiful but having trouble breathing. The respiratory therapist was there to give him a treatment. In his room were his mother and two good friends from home.
We know Ross has been healed. We know he is still beautiful and perfect. But our hearts ache for Janet, Joe, Trevor and the other family members we had the pleasure to meet. We can’t understand this.
We have always had the passion to work for an MLD cure. I can honestly say it was increased ten fold yesterday.
You are all so caring. Please don’t worry about us worrying. We hurt but will be alright. Please pray for the Joiners tonight. Not just for peace and strength but for complete engraftment for Trevor and a healthy full recovery.
Love,
Jane and Jeff
Saturday, February 28, 2004 6:14 PM CST
9:00 pm Our hearts are so heavy tonight. Please say prayers for the Joiners.
Dear Friends,
We are still having fun at Grandma and Grandpa's house. The kids have played a new board game. Jeff and I were able to get out for a while. It was a beautiful sunny day.
Grandpa listened to the kids' lungs and all sounded clear. Thank you God. It sure is handy to have a doctor in the family.
We hope you are all having a wonderful winter weekend, We'll write more tomorrow from home.
Love,
Jane and Jeff
Friday, February 27, 2004 7:29 PM CST
Dear Friends,
We had a nice day today. Max had OT in the morning and school in the afternoon. Maddie and Sam were busy around the house. One of their new daily highlights is watching The Brady Bunch on TVLand. They had the funniest conversation the other day in the car.
Maddie: "I'm a tattletale like Cindy."
Sam: "How come she never tells on the boys?"
Maddie: "She does."
Sam: "Oh, that's rght. She told that Greg was smoking."
Maddie:"Noooooo. That was Marcia!"
I feel like I am in a time warp. They think they have discovered the greatest NEW show.
The kids are still stuffed up. Hopefully they can clear up soon. We left in the afternoon to go see Grandma and Grandpa 'Up North' aka Trimper. They are excited to be here.
We now have 58 partners. Amazing!
So so much to be thankful for tonight. Thank you, God.
Love,
Jane and Jeff aka Carol and Mike
Thursday, February 26, 2004 7:26 PM CST
Dear Friends,
I did want to mention first off that there was an article on us in the Owosso Argus Press last Sunday. It was written by Judy Brown-Kurnik and it was such a nice article. Thank you so much Judy. It brought tears to my eyes.
The kids had a busy day. Max had PT and OT in the morning. Maddie and Sam had PT too. They all worked hard and did a good job. We took Max to school for the afternoon. Maddie had school today with Mrs. E. She did a good job, from what I saw and heard. She has matured so much the past year and does such a good job sitting down and following directions.
This foundation stuff kept me busy today. You are incredible. Every time I went to the computer, someone new had joined. We are now officially 48 members strong. I called Dr. Kurtzberg to let her know what was going on and to ask where we go from here. I know there are still some people thinking about joining and forming teams. I asked if she thought it would be best to use anything over 50 to create a third year for the fellow or start for a second fellowship. She said a second fellow would “ make progress with leukodystrophies happen ten times as fast.” Those were all the words I needed. We are going to go for a second fellow.
Please don’t misunderstand me. I am not telling you this so those who have donated will give more. Or so those who have decided not to or can’t donate will now do so. I just want those who are still working on a business or team to know the money is needed and will be used to help progress be made for leukodystrophy kids. The reality of this is huge.
Can you believe it? I am in awe. I think people we talk to are in awe. I think Dr. Kurtzberg was in awe. Thank you so much to the donors and those who have prayed for success. There are just no words.
Love,
Jane and Jeff
I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100ealing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max. While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100BR>For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Wednesday, February 25, 2004 6:45 PM CST
Dear Friends,
Our day started early today. Sam, Maddie and I were out the door by 7 a.m. to go and give blood and receive their monthly IVIG. All this was done at the hospital. This was the first time they had received an infusion through their port and they were scared. Over all, I think they did well. Dr. Konstantelos met us there and checked the kids over. They looked good. Sue, from Duke, called. Sam’s labs looked fine from today. Maddie had a few numbers that were out of the ordinary, but there is nothing to be concerned about. They are lowering her Acyclovir and watching her bilirubin. (I know most of you don’t want to know all that. I include it for the BMT families that know what the drugs mean.:) Sue didn’t sound too concerned. So, I ‘m not.
Max had a busy day. He went to school in the morning and came home and did three hours of therapy. He works so hard. I haven’t mentioned in a while, nut I am so proud of him. He complains so little and is put through so much.
Maddie and Sam also had PT in the afternoon. They are doing a good job following directions.
I didn’t think we would be adding new partners today after the big day we had yesterday, but I was wrong. We are now up to 37. Thank you to our three new members. It has really turned into an interesting list. We have people from Charlevoix, Stanton, Chesaning, and beyond. We have people we know and we have people we don’t know. We have groups, families, individuals and businesses. It is amazing how we have all been brought together by Caringbridge and three children. In our donation letter we used the following quote:
“ We cannot live for ourselves alone. Our lives are connected by a thousand invisible threads, and along these sympathetic fibers, our actions run as causes and return to us as results.” Herman Melville
As I watch this unfold, I am always reminded of how amazing this world is and how wonderful the human spirit is. Thank you, God.
Love,
Jane and Jeff
I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 ealing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max. While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 BR>For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Tuesday, February 24, 2004 7:13 PM CST
Dear Friends,
I forgot to mention last night that the viral battery tests that were done on Maddie and Sam didn’t show anything. That is good news and I don’t know how I forgot to tell you.
Today we had a meeting at school for Max. We are working hard at getting him everything he needs. This rehabilitation stuff can be exhausting! But well worth the effort.
Our friend Corby came and watched the kids while we were at the meeting. Thanks, Corby. The kids had a good time. They played for the rest of the day and then we all went for a drive.
Our foundation account grew more today. We now have 34 partners. I don’t know what happened today, but things really came together. I can not express how excited I am that this is going to become a reality. Thank you. I am going to provide our foundation account information to anyone who would like it. It will be after the journal entry.
We hope you all had a good day.
Still stuffy,
Jane and Jeff
Trimper Children Foundation
c/o Saginaw Community Foundation
100 S. Jefferson Suite 201
Saginaw, MI 48607
I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100ealing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max. While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100BR>For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guest book. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Monday, February 23, 2004 6:42 PM CST
Dear Friends,
We started our day with therapies. Max had OT and PT. Maddie and Sam had PT. While they were working, I got a lot done. I finally unpacked the rest of the kitchen and found some things I had wondered about. The whole time I was thinking, those beautiful ladies packed up a bunch of stuff. It had to be hard work and we are very grateful.
Max went to school in the afternoon. Maddie and Sam watched a movie and I cleaned some more. It felt good to be productive.
Our partnership is up to 25. A good friend called tonight to join. I cried. This is getting emotional and means so much. I think we have some more teams forming. Thanks.
We hope you all had a good Monday. It looks like a Christmas card outside with the beautiful snow.
Love,
Jane and Jeff
I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 ealing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max. While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 BR>For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guest book. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Sunday, February 22, 2004 7:38 PM CST
Dear Friends,
It was a sunny and beautiful Sunday. Those of you not in Michigan might not know that. Our southern friends would have found it cold, but it felt great to us.
We had a busy and nice day. Jeff took the kids out for a golf cart ride in the snow. They must have had fun because they were outside a long time. That has to be so good for them. Our friends Brad and Cheryl came over for a visit. Cheryl has watched all three kids in Daycare since they were about two months old. She is such a special person to them.
Max, Sam and I went to Mt. Pleasant to see Aunt JoJo. She watched them while I ran some errands. She is great and I loved the break!
Our friend Jon came over and had dinner with us. He is such a good sport about our kids. He ignores the burps at the dinner table. He pretends he can’t hear the whining. It was good to see him.
We have added two more partners. Our total is 24. We think this is remarkable progress and have caught wind of some other groups trying to organize. We are uncomfortable in our position as fund raisers, but Jeff and I will do anything for these kids. You wonderfully generous people have made it so much easier for us. We are such rookies at this and will learn through the process. Please keep sending up those prayers for guidance.
We, like most people, have a lot of stress in the house right now; colds, therapies, school, work, etc. We have much to be thankful for too. We thank God for these three kids we were given and that they are still here with us - stress or no stress.
Love,
Jane and Jeff
Saturday, February 21, 2004 6:51 PM CST
Dear Friends,
It was a quiet Saturday. The kids are congested but no worse than yesterday. Max had speech this morning. Brennan and Randy came and put in some more insulation. We had friends over for pizza. It was a good day. Thank you, God.
We are up to 22 partners and moving on up. Thanks so much everyone. I've heard that some of you are still working on it. The generosity is amazing.
Love,
Jane and Jeff
I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100% healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max. While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100%.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guest book. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Friday, February 20, 2004 5:11 PM CST
Day 140
Dear Friends,
It is amazing how busy I feel at home and yet I get very little accomplished. We kept Max home from school today. All three children are officially congested. I woke in the middle of the night worrying about this. I called first thing this morning and asked the doctor if we could do a viral battery test to make sure there isn’t anything else going on but a cold. They had had this done last time they had a cold when we were at Duke. Maddie and Sam went and did this later in the day and we should know on Monday.
I gave Max some cold medicine this morning and it really wiped him out. He was a calm little fellow all day and just vegged on the couch. I tried to get him to nap, but that didn’t work. I’m glad we decided to keep him home.
Jeff can appreciate the weekend again, after his first full week back. I think he has really missed the kids.
We are now up to 18 partners. I can’t even begin to tell you how much we appreciate it. For just 48 hours, I think that is very good. If you know of any people or businesses who may be interested, please help spread the word. Thanks.
Have a wonderful weekend.
Love,
Jane and Jeff
I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100% healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max. While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100%.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guest book. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Thursday, February 19, 2004 6:31 PM CST
Day 139
Dear Friends,
Today was a good day. Max was home in the morning doing therapies and went to school in the afternoon. Maddie and Sam just played around the house all day. They were both in a good mood, in spite of Maddie’s congestion. Both Max and Maddie are still stuffed up, but no worse than they were yesterday. It is a little hard to send Max to school knowing what is our there, but we need to do it. We made some cookies after dinner. They had a good time and were covered in flour by the time we were done.
Thanks for the response to yesterday’s journal entry. I am going to include our proposal at the bottom of tonight’s. So far, this is what has happened. We have had individuals call or email us ready to join in the partnership. There is a family who is going to join funds and become a partner. A business where a good friend works is going to join. A former student of my fathers is going to work together with past classmates to commit. This is where we hoped this idea would go. We thank Kathie for starting a ‘rag tag’ group going in the guest book and appreciate her volunteering to organize it. We really like and appreciate the idea of people coming together to donate the $1000. By joining together you make it manageable for us to keep you informed of what is going on. Just please give us a contact person. You can each send individual checks and will get a receipt from the Saginaw Community Foundation which helps us with our account. Right now we have 12 individuals/ groups who have called or written to us and committed to the two year plan. Jeff and I are each going to donate a $1000 each year also. (Actually we will try to make up the difference if we can get close enough to do so - unless we win the lottery and then look-out!)) That gives us 13 donations. We are hoping for 37 more. Please contact us if you would like to help. We’ll continue to keep you updated on how we are doing.
Please say prayers for the Joiner boys. They are both 100% their own cells. Ross is also still in ICU fighting through some stuff. That family needs a break. Also Dominic is facing a second transplant also in Germany. I spoke with his father this week. These boys need our prayers. Thanks.
Love,
Jane and Jeff
I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100% healing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max. While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100%.
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guest book. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Wednesday, February 18, 2004 5:34 PM CST
Day 138
Dear Friends,
A busy day for us today. Jeff and Max headed off to school this morning. Sam, Maddie and I went to give blood and see the doctors. The nurses and lab technicians at Greenville’s hospital are so nice to us. They were ready for us and even had coloring books and crayons ready. They give us one every time we go. They also gave the kids french fry coupon from McDonald’s. Both Maddie and Sam did well giving blood. I was very proud of them. I think they will be even better next week.
After our blood draw, we went to see the doctor. Maddie has a cold and is coughing. We’re a little worried about that with RSV going around. So far, she seems ok, but Dr. Konstantelos is going to keep an eye on it and talk to Duke about it. Our labs from this morning arrived while we were there, and everything looks good. Both kids had a good jump in their platelet counts and Sam’s hemoglobin has stayed steady.
Max had a good morning at school. He is also congested. He came home and had OT in the afternoon.
I want to tell you about an important decision we have made. Our plan for Max is to do intense therapy for the next two to three years and see how much improvement his body will do just by letting the new cells work their magic. We know that the new cells may not bring Max to the 100 ealing we are working towards. We continue to watch and research the latest that is going on with myelin repair.
If you were at the Stanton benefit finale, Jeff and I spoke to the group. We talked about the future and some promising things that are happening that will potentially help Max. While at Duke, we spoke with Dr. Kurtzberg many times about what they are doing and how they can help patients like Max. They have many things on the horizon. They are working on sending stem cells up through the spinal cord to help repair the myelin that surrounds the nerve cells. This is essentially Max’s problem. He needs, as do other patients from many other diseases, myelin repair.
They currently have the MRI equipment at the University of North Carolina that can look at a patient’s brain and see where the myelin has repaired post transplant and where it hasn’t. She believes in five years they will be able to treat the areas that have not repaired. We whole heartedly believe Duke is going to help Max on his way to 100 BR>
For $50,000 we can pay to have a doctor continue his or her learning with a fellowship at Duke. He/she will work under Duke doctors to make the information above become reality. Jeff and I have brainstormed many times how we can help achieve this. We believe a doctor assigned specifically to leukodystrophies will greatly help these kids. I am going to ask for your help.
We would like to find 50 individuals or groups to help us reach this goal. We are asking for a $1000 donation this year and again the following year. The money would go to our foundation account. It is tax deductible and we have a MICS number available upon request.
As a partner, we will keep you updated on the progress being made. After two years we will assess how it is going and go from there. Dr. Kurtzberg said we could name the fellowship anything we wanted. I spoke at the benefit that I would love to hear this prestigious doctor refer to himself or herself as the “Kick MLD in the Butt Fellow.”
Are we eager to do something? Yes. Are we asking too much? Maybe. We are absolute rookies when it comes to this. Are we committed? Absolutely. We are talking about saving and bettering lives.
If you think you could commit to this, please let us know. Call us, email us, write in the guestbook. Our information is listed at the bottom of this page. If you can’t help financially, we would still greatly appreciate your support. We have gone from being very private people to opening our lives to save children in just 15 months. We would appreciate prayers asking God to continue to guide us and help us make a difference.
I was just ready to post this and was walking through the house quite nervously. I passed Max on the couch and told him I'd be right back. My nervousness is gone. I want my son to be able to get up and come get me if he needs or wants me. I want him well. I want Trevor, Emma, Dominic, Lucas, Madigan, and on and on well too. Thanks.
Love,
Jane and Jeff
Tuesday, February 17, 2004 5:56 PM CST
Day 137
Dear Friends,
Max and Jeff headed off to school again today. It is so strange to not have Jeff around. Maddie, Sam and I got a slower start. Sam threw up again during meds. Maddie held her own. They were both very grouchy today. Our friend Corby stopped by and she was witness to behavior I hope she never shares with another soul.
We picked Max up from school at noon and he came home for lunch and OT. He had PT later in the day. Max had a hard time today. He looked very tired and we’re hoping he isn’t catching something. Sam and Maddie also did some PT. Maddie had school with her teacher again today. She really likes it.
Our house is busy in the afternoons. Therapists are in and out. Maddie’s teacher comes a couple times a week. It is a busy schedule, but the people coming are wonderful.
We hope you all had a good Tuesday. There was always a checker at Kroger in Durham who would say “Have a blessed day.” whenever we left. We are wishing for all of you a ‘blessed day.” There was also an older lady who called me baby every time I went in. I loved that. So, have a blessed day, baby!
Love,
Jane and Jeff
Monday, February 16, 2004 5:48 PM CST
Day 136
Dear Friends,
Today wa s busy one. Jeff headed back to school this morning, Max in tow. It just seemed so normal to watch them go. Maddie, Sam and I scrambled around and finally got meds down (Maddie & Sam threw up), got dressed and headed to Greenville so Sam could give blood.
Giving blood was harder this time for Sam. He cried before they started. Then his port did not give blood right away. We finally got it to work and we headed home.
We weren’t home too long and then we went and got Max from school. He ate lunch quickly and then it was time for OT. He really likes his new therapist.
The rest is pretty routine: Laundry, making beds, playing Sorry. It’s the every day stuff for which we are thankful.
We did get a call later in the day. Sam's hemoglobin went from 8 to 8.5. That's good news. Maddie's cyclosporin level was wwwaayyy too high and we need to adjust that med. All else looks good. Thank you, God.
Happy President's Day.
Love,
Jane and Jeff
Sunday, February 15, 2004 6:12 PM CST
Day 135
Dear Friends,
Today was a nice day. Joanne spent the night last night. She left pretty early this morning. Jeff went to church. The kids and I played and watched tv. It was a quiet morning. In the afternoon, Sally, Bill and the cousins came over. It was so good to see them. They had fun playing in the house. Sally brought a pińata and had prizes for Bingo. Last weekend was Jackson’s birthday (Our 4 year old cousin/nephew). We couldn’t go to his house because they had all been sick. So Sally brought the party to us this weekend. Thanks Sally.
Jeff is ready to head back to work tomorrow. We have been so blessed to have had the time off of work. But as a good friend of ours pointed out, this is the next step and it’s a good thing because it means things are going well. Thank you, God.
Busy day tomorrow. Max has a half day of school and then will come home for therapies. Sam will go and have his hemoglobin rechecked tomorrow. We hope you all have a good Monday.
Love,
Jane and Jeff
Saturday, February 14, 2004 5:54 PM CST
Day 134
Dear Friends,
Happy Valentine’s Day. The kids are having fun with Aunt JoJo. Jeff and I enjoyed our time out and about. We hope you all had a good day. We’ll update better tomorrow.
Love,
Jane and Jeff
Friday, February 13, 2004 3:55 PM CST
Day 133
Dear Friends,
Max had a full day of school today. They had a Valentine’s Day party in the afternoon. He had a good time and looked tired by the end of the day. (He also looked handsome and happy.)
Maddie and Sam had a nice lazy day. They played in the basement a lot. We washed a lot of the play food and dishes and they played house for quite a while. Jeff and I got a lot done while they were playing. Today was Jeff’s last day off. He becomes a teacher again on Monday.
We got a call about the lab work done yesterday. All the liver numbers looked better. Sam’s hemoglobin dropped quite a bit. We are going retest Sam’s blood on Monday and see what it is. If it continues to go down, he will get an infusion at some time through his port. All in all, their labs looked good and there is nothing to worry about. They look so good and feel so good, you forget something could go wrong. We are thankful for today.
That’s about it here. Joanne is coming tomorrow to watch the kids and Jeff and I are going off for the day. They love Aunt JoJo and are sure to have fun.
We hope you all have a good Valentine’s Day. Please continue prayers for the Joiners and Geissers. I’ll include their websites at the bottom. Also, our new friend Emma has started the transplant process this week. I’ll include hers as well. Emma and the Joiner boys are at Duke. The Geisser boys were at Duke, where we met them, but needed to go to Germany. We met all five of these kids and they are beautiful wonderful children. I hope they all do a whole lot of MLD butt kicking.
Love,
Jane and Jeff
www.caringbridge.org/tx/joinerboys/
www.caringbridge.org/wi/geissermld/
www.caringbridge.org/ca/mcgregormld/
Thursday, February 12, 2004 5:30 PM CST
Day 132
Dear Friends,
Today was doctor day. We went to see our doctor in Greenville. He looked over the kids and talked with me about the next steroid wean. He was going to call Duke and see what they wanted done. The kids looked good and talked the whole time we were in the room... at the same time...while the doctor was talking....then they started hitting each other... It was fun. Really, it wasn’t that bad, but you can tell they have spent A LOT of time together. It may also show that we haven’t disciplined in a year.
We then went and gave blood. Maddie was very frightened. She cried quite a bit before we started. The actual blood draw was not bad and I hope she will feel even better next week. Sam did very well and didn’t really cry at all. He fussed a little right before the needle. The nurses and lab technician at the hospital are so nice. They are wonderful about getting us to a room right away and not allowing us to wait anywhere with people. I’ve never had to say a word. They were already on top of it.
Max had speech and PT this morning and then went to school for the second half of the day. He looked pretty tired by the end but he had a good day.
We should find out labs sometime soon. Max is going to school tomorrow for the whole day and have his Valentine Party. It is so good to have him back with kids.
Please say prayers for the Joiners and the Geissers. Our MLD boys are having some problems. May God heal them soon.
Love,
Jane and Jeff
Wednesday, February 11, 2004 7:05 PM CST
Day 131
Dear Friends,
How amazing is our support system? You are so sweet with your guestbook entries, but don’t feel bad for us. It is so amazing that you would pray for us when we are praying for other people. It is funny how we are all linked. I should pray tonight for a ll of you who are praying for us as we pray for our friends, ..... This could really be something.
I need to give a vomit report so I remember this in the future. Med time has become a time of stomach upset. Sam usually loses it in the morning during meds. Maddie usually loses it in the evening right before meds. We don’t know why and have tried lots of things. It is a good reminder of how much their bodies have been through and how much more they need to heal. They are tremendous sports about it. Jeff and I used to get stressed about it, but now we just know to have the ole pink puke bucket from the hospital handy.
Even with out tummy troubles, the kids are doing very well. They are having fun and are pretty energetic. They no longer nap at all and go to bed around 8:00. Soon we can wean the steroids again and when we are no longer on them, we can drop a couple of other meds. We give blood tomorrow and hope for better liver numbers. Maddie had school today with her homebound teacher. She did a good job and we are very proud of her. She really enjoyed it.
Max is doing half days at school. This afternoon, he had OT and speech. Ginger and Michael came over and had rowdy fun with the kids. Max laughed and laughed and had a good time.
Thanks for your continued support.
Love,
Jane and Jeff
Tuesday, February 10, 2004 7:00 PM CST
Day 130
Dear Friends,
It’s been an emotional day. Jeff and I have been dealing with Max’s school and therapy issues for the past couple of days. Of course, we get emotional about it because we want the best for Max. We have been hit with many reminders to keep it all in perspective.
All around us devastating things are happening to our close friends and to people we barely know. Sad losses and pure heartbreak. Jeff and I have spent much of the last year thinking about how things are supposed to be and why things happen and how God is in control of it all. Then you watch other people’s lives seems to spin out of control and it just leaves you speechless. We don’t mean to sound cryptic. We try not to mention other people’s problems on our site. We chose to make our aches and pains public, they have not. It is just that after the day we had, it is hard to write about anything else.
Our hearts are heavy. We pray for strength, peace and comfort to our friends.
In hope and faith,
Love,
Jane and Jeff
Monday, February 9, 2004 5:40 PM CST
Day 129
Dear Friends,
It was a cold and windy Monday. We kept busy though. Maddie and Sam played most of the day. We read books, played Sorry and watched some cartoons. They are feeling good and are very active. Sue, our nurse practitioner, called and overall, their lab results looked good. Their liver numbers were much higher than normal. Since both kids had higher numbers, Sue thinks it may be related to anesthesia. We’ll see what this week’s numbers hold.
Max had a half day of school today. There are some issues about how we are going to coordinate school and therapies. Jeff and I worked on that most of the day.
The kids were playing in the basement. Jeff and I were relaxing. Now it is time to get jammies and meds ready.
For those of you who are guestbook readers, Jeff Glasscock is in the photo album. He is hands down our most enthusiastic guestbook writer. We were able to meet him on Saturday at the benefit. We’ll work hard at getting a picture of Anna S. and Carolyn W. soon. Incredibly, we had never met any of these three before we started this journal.
Love,
Jane and Jeff
Sunday, February 8, 2004 5:40 PM CST
Day 128
Dear Friends,
I am starting early and hope this update is a little more detailed. Jeff and I were still talking about yesterday’s benefit. It was great to see so many people that we missed while we were away. We are inspired again by the generosity of others.
The benefit has really gotten us talking about the future and where we want to send funds. Although Max will have a couple of years of improvement through intense therapy, he will need the future medical advances that will happen. 100% has always been our goal. We have had people ask how they can contribute. The information is on our other website. www.trimperchildren.org. There is a link at the bottom of this page.
This morning I went to church. It was good to be back and the music and the sermon touched me. Every time I go to church I feel like the music and Jamey’s message are always picked just for me. I am either terribly vain or the words hold meaning for us all. I think that is what makes our church and Pastor Jamey so special.
The kids had a relaxing day. Max and I went to KMart to get his Valentines for school. Jeff got a lot of things organized and cleaned in the house. We make a good couple. He’s Felix and I’m Oscar.
My kids have never watched much of Charlie Brown. Tonight Sam picked out the Charlie Brown Christmas video to watch. He yelled out to me “Which one is Charlie Brown?” I told him the one in the yellow shirt. About ten seconds later he yelled, “Has he had a transplant?” It took me a minute.
Love,
Jane and Jeff
P.S. Charlie Brown is bald. (For those of you who it took more than a minute.)
Saturday, February 7, 2004 9:00 PM CST
Day 127
Dear Friends,
I am so sorry that we are late posting. It was a great day full of great friends. Today was the benefit in Stanton for MLD. It was well organized and fun. I can’t even begin to explain how good it was to see everyone. We love our community.
Family and friends from out of the area were able to come and be a part of everything. They stopped to see the kids and we got to bed later than usual. We’ll update more tomorrow and include some good pictures.
Thanks so much to Penny and Tammy for organizing today’s event. Thanks to all the people who helped and came to eat and participate in the auction. We’ll update more tomorrow.
Love,
Jane and Jeff
Friday, February 6, 2004 7:37 PM CST
Day 126
Dear Friends,
We had an early start to our day. Today was the day Maddie and Sam got use their new ports. We met with our new doctor. He looked the kids over and sent us to the hospital for the blood draw. The kids were very nervous and cried a lot. The ports worked very well. I am hoping now that the first time is over, it can start to go better. We should find out lab results on Monday.
Max stayed at school all day today. He looked pretty good by the end of the day and did pretty well. He didn’t have any therapies today - just school.
Each day, we get to see more and more people we have missed. If we haven’t told you lately, it so good to be back in Stanton.
Love,
Jane and Jeff
“Lets Kick MLD in the Butt” Benefit 2004
The fundraiser is on Saturday, February 7 from 3:00 pm to 7:00 pm at Central Montcalm Upper Elementary in Stanton, Michigan. Things will run a little different this year. Instead of dinner, it will be a dessert buffet. Raffle will be mini drawings. Items will be set up on the perimeter of cafeteria and gym with coffee cans in front of items. Tickets are purchased and place in as many or few cans that you want. Silent auction will be the same. There will be drop off times for the baskets and desserts as follows: Friday, February 6 from 4:00 pm to 7:00 pm and Saturday, February 7 from 8:00 am to 10:00 am. If you have any questions, please contact Penny Burlison at: pburlison@cms.maisd.com or call at 989-831-2300 (ask for Penny)
Thursday, February 5, 2004 8:39 PM CST
Day ??? (I know it’s Thursday!)
Hello.
The day started out as usual. Max getting ready for school, getting meds ready for Maddie and Sam, Dad taking Max to school (getting out of giving meds), kids NOT LIKING their meds. Not sure if there was any throwing up this morning. It was another busy day around here.
Max has been doing great at school, so we all decided to let him eat lunch and go a bit longer today. I think he did a good job. He then came home and had an hour of PT with Beth. He was tired tonight. Max got a new bed today. Big guy bed. It sits higher up so we don’t have to bend over to change him. It felt great on my back tonight getting him into his pajamas. It has a head board with shelves, so we put his favorite things on them. He really likes it. After the year this kid has had, he deserves a new big guy bed! Tomorrow, he may go a full day. We’ll see how he does. We don’t want to push it too hard.
Maddie and Sam had a nice day in the house today. Lots of action (as usual). They also worked with Beth (PT) tonight. They think it’s a game also. Maddie’s too smart, she catches on, realizing it’s work and doesn’t want to do things. They are doing great. They both go for their first blood draw through their ports tomorrow. Unfortunately, I can’t be there. I have to take Max to school. I’m sure they’ll do a great job!
We had some good friends come over tonight for a pizza party. I think they were happy to see the kids and the kids were happy to see them. It sure is nice to sit and talk to good friends. Thanks for coming over guys (Gotta BELIEVE!).
We had a good day, crazy, but good day. One day at a time!
Hope to see many of you at the benefit this weekend. We’ll kick MLD in the butt!
Jeff
“Lets Kick MLD in the Butt” Benefit 2004
The fundraiser is on Saturday, February 7 from 3:00 pm to 7:00 pm at Central Montcalm Upper Elementary in Stanton, Michigan. Things will run a little different this year. Instead of dinner, it will be a dessert buffet. Raffle will be mini drawings. Items will be set up on the perimeter of cafeteria and gym with coffee cans in front of items. Tickets are purchased and place in as many or few cans that you want. Silent auction will be the same. There will be drop off times for the baskets and desserts as follows: Friday, February 6 from 4:00 pm to 7:00 pm and Saturday, February 7 from 8:00 am to 10:00 am. If you have any questions, please contact Penny Burlison at: pburlison@cms.maisd.com or call at 989-831-2300 (ask for Penny)
Wednesday, February 4, 2004 7:33 PM CST
Day 124
Dear Friends,
We had a good day today. Jeff and my dad put in some shelves. I bought a shower curtain and towels for the bathroom. Max had his half day of school and then three hours of therapy. Maddie and Sam had a good time playing in the house. Tomorrow we need to give blood and have the kids checked over. Other than that, life is boring. Thank you, God.
Love,
Jane and Jeff
We hope to see you at the benefit.
“Lets Kick MLD in the Butt” Benefit 2004
The fundraiser is on Saturday, February 7 from 3:00 pm to 7:00 pm at Central Montcalm Upper Elementary in Stanton, Michigan. Things will run a little different this year. Instead of dinner, it will be a dessert buffet. Raffle will be mini drawings. Items will be set up on the perimeter of cafeteria and gym with coffee cans in front of items. Tickets are purchased and place in as many or few cans that you want. Silent auction will be the same. There will be drop off times for the baskets and desserts as follows: Friday, February 6 from 4:00 pm to 7:00 pm and Saturday, February 7 from 8:00 am to 10:00 am. If you have any questions, please contact Penny Burlison at: pburlison@cms.maisd.com or call at 989-831-2300 (ask for Penny)
Tuesday, February 3, 2004 6:01 PM CST
Day 123
Dear Friends,
We are still adjusting to being home. There is a lot of stuff to put away and things to find. The kids are having a great time. Maddie and Sam are getting a little stir crazy. We better go for a drive tomorrow.
Max had his half day of school and had PT in the evening. He doesn’t look too tired tonight. We hope to start increasing his time at school. He is very entertained by Maddie. She has a lot of fun with him.
We made a lot of phone calls today setting up things at home for Maddie and Sam. They need to give blood in the next couple for days. Dr. Crittenden, our great doctor, is no longer in Greenville so we are making new connections. Sue, our nurse practitioner from Duke, talked with us today and is helping us with meds and setting up the blood draw. We are feeling very comfortable about being here and still taking care of our medical needs.
We hope you all had a good day.
Love,
The Trimpers
“Lets Kick MLD in the Butt” Benefit 2004
The fundraiser is on Saturday, February 7 from 3:00 pm to 7:00 pm at Central Montcalm Upper Elementary in Stanton, Michigan. Things will run a little different this year. Instead of dinner, it will be a dessert buffet. Raffle will be mini drawings. Items will be set up on the perimeter of cafeteria and gym with coffee cans in front of items. Tickets are purchased and place in as many or few cans that you want. Silent auction will be the same. There will be drop off times for the baskets and desserts as follows: Friday, February 6 from 4:00 pm to 7:00 pm and Saturday, February 7 from 8:00 am to 10:00 am. If you have any questions, please contact Penny Burlison at: pburlison@cms.maisd.com or call at 989-831-2300 (ask for Penny)
Monday, February 2, 2004 5:14 PM CST
Day 122
Dear Friends,
There is no where like home. It feel soooooooooo good. Last night, I looked at my three kids sitting together on the couch and was overwhelmed with emotion. We are a family of 5. It isn’t over, but it is looking good.
Today was a adjustment day. We are getting used to the new addition and working hard at finding things. Sam thinks every toy is wonderful and new, even if we have owned it fro 7 years. In North Carolina, Sam and Maddie were tired and didn’t want to move. From the time we walked in the house, they have been up and down stairs, running from room to room, playing nonstop. In North Carolina, they were ‘sick’. At home, they are ‘well’. I think Stanton is the best medicine they have received.
Max had to go to school today. He really likes school and that is great. He only goes half days right now, but we hope to keep adding time. In the afternoon, he had speech and OT. It is a full day. He was tired today. We all are.
There is lots to do and it all feels terrific. As we blend the new part of the house and the old, we also blend our old life and our new. It has been a crazy 13 months and we could not have done it without everyone’s support and prayers. God has given so much.
I am going to include the information on the benefit in Stanton this Saturday after the entry. The money is going to be used for MLD/leukodystrophy research. We read on another site, that 7 out of the 16 rooms on the Duke transplant unit are filled with metabolic patients. Yet, they call these diseases rare. Too many sick kids. Too many deaths. We have a lot of work to do and we are so touched that others are helping us fight.
Time to finish baths, put on jammies, give meds and tuck the kids in, all while thanking God that we can.
Love,
Jane, Jeff, Max, Maddie and Sam
“Lets Kick MLD in the Butt” Benefit 2004
The fundraiser is on Saturday, February 7 from 3:00 pm to 7:00 pm at Central Montcalm Upper Elementary in Stanton, Michigan. Things will run a little different this year. Instead of dinner, it will be a dessert buffet. Raffle will be mini drawings. Items will be set up on the perimeter of cafeteria and gym with coffee cans in front of items. Tickets are purchased and place in as many or few cans that you want. Silent auction will be the same. There will be drop off times for the baskets and desserts as follows: Friday, February 6 from 4:00 pm to 7:00 pm and Saturday, February 7 from 8:00 am to 10:00 am. If you have any questions, please contact Penny Burlison at: pburlison@cms.maisd.com or call at 989-831-2300 (ask for Penny)
Sunday, February 1, 2004 7:30 PM CST
Hello.
Jane, Bob, Maddie and Sam made it home! PARTY TIME! Oh my! Is it ever a party. Maddie was the life of the party as usual. Max laughed all night. Things are good.
For those of you who read the web site last night know that it was still a last minute decision whether to go or not. Maddie got sick twice and her port area wasn’t looking any better, but not any worse. Jane emailed Dr. Kurtzberg and she still gave them the OK to leave. This reminds us to take things one day at a time. We are home, but not “out of the woods” yet. Maddie and Sam have been doing as well as we could have hoped they would do and Duke was all we could have hoped it would be. There is a loss of security about being away from Duke. In a way, this is one of the most stressful times. As I know from the past two weeks, adjusting after being away for six months is tough. Moving into the next stage of our fight against MLD is going to be a long journey. We will fight this and keep fighting this.
We would like to thank all of you who have supported us over the past 15 months. It’s been a long rocky road. Without all of your support, it would have been a harder journey. Please keep all the other families in your mind and hearts who have just begun their battles with MLD and all the other terrible diseases. They need all the support they can get.
For now, we will celebrate our victory. We will enjoy being home together, seeing friends and family and just enjoy watching the kids play.
Things are CRAZY!!!! Glad to be together again!
Jeff
Saturday, January 31, 2004 6:53 PM CST
As of 8:10 p.m., I think we are leaving tomorrow. If we don't update tomorrow, please don't worry. We are unpacking, looking at the house, hugging Jeff and Max, etc.
Day 120
Dear Friends,
Maddie’s site is very similar to yesterday but isn’t as red. Dr. Kurtzberg gave us the ok to go home tomorrow. Later in the day, Maddie threw up twice. We’re waiting to see what Dr. Kurtzberg says about that. The van is packed but we are still not sure if we are leaving. I’ll update again as soon as we know.
Love,
Jane
Friday, January 30, 2004 8:15 PM CST
Day 119
Dear Friends,
Today Maddie and Sam were both hurting a little from the surgery. Sam had a little bruising but Maddie had a big bruise all the way around it. (Or so we thought). I ran some errands to get ready to go home. I went to the hospital to visit with the Joiners, the Texas MLD family. Please say prayers tonight for Trevor. They have a big bump in the road to get over. www.caringbridge.org/tx/joinerboys
The kids and I went to meet with Dr. Kurtzberg and Sue. Both of them looked at Maddie’s port site and knew there was a problem. They told me it was infected. This is not serious, but Maddie needed to start an antibiotic and if it isn’t better by tomorrow we won’t be coming home on Sunday. As disheartening as this seems, we are so glad it isn’t anything too serious and glad we have started the antibiotic. Dr. Kurtzberg drew with marker around the red circle. If it lessens or stays the same by tomorrow afternoon, we are good to go. If it is worse, we will head to clinic. Both Dr. Kurtzberg and Sue were relaxed about it and told me it is treatable and not to worry. Prayers for Maddie would be great though.
That’s about it. I think Dad is being entertained watching me do meds and being manipulated by the kids. I am sure none of us Rhode girls acted like this (at least that is the way we remember it).
Max had another good day at school today. He also had OT in the afternoon. Don and Marcia, Jeff’s parents, came down from Charlevoix and are spending the night in Stanton.
We hope you all had a good week.
Love,
Jane
Thursday, January 29, 2004 6:28 PM CST
Day 118
Dear Friends,
It was surgery day. We went to the hospital/clinic at 7:45 this morning. We didn’t have to wait long and were able to head back to pre-op. Maddie was in surgery by 9:30, out by 10:40. Sam went back right after Maddie and got out around 12:30. They are both doing pretty well. Maddie is acting like nothing happened. Sam is sore. Their lines are gone and the holes have a bandage. Their port is in and the incision has a strip on it. They look good and this takes us one step closer to going home. I am hoping Sam feels better tomorrow. He had a long nap when we came home.
Grandpa was a big help at the hospital today. He also kept Maddie occupied with Sorry when we got home.
Max had a good morning at school today. He is really enjoying it and Stanton Elementary is taking such good care of him. He had PT at home in the afternoon. He and Jeff went to Mt. Pleasant in the late afternoon and Max visited with Aunt JoJo.
We are thankful for successful surgeries today. We thank God for watching over our kids.
Love,
Jane
Wednesday, January 28, 2004 5:54 PM CST
Day 117
Dear Friends,
Durham has the most fantastic snow and ice removal system here. It is called sun and warmth. I hope they can try it in Michigan.
We have thawed and the roads and parking lot are good now. It was a pretty day. Sam and I went to clinic to fill him up with platelets before he has his line removed and port put in tomorrow. Both kids seem ready for the procedure and we will be there at 7:45 tomorrow morning. Maddie’s surgery is at 9:15 and Sam’s is at 10:30.
Dad has been playing a lot of Sorry. We only have one tv now and I am sure he has had his fill of cartoons. The kids are really enjoying having someone new to play with.
Max had a snow day today in Michigan. He went to Ginger’s house to play so Jeff could get some things done. He also had speech in the afternoon. It is good to have Jill, his speech therapist working with him again. We have been so lucky to have good therapists in North Carolina and good ones back in Michigan.
Love,
Jane
Tuesday, January 27, 2004 7:18 PM CST
* I forgot to mention earlier that Dad did make it to town. The kids were so excited to see him. They have already taught him how to play Sorry.
Day 116
Dear Friends,
I am going to keep it really short today. We had clinic today and spent over eight hours getting IVIG and blood for Maddie. It was quiet. I think some people stayed home because of the ice, but the roads were really pretty good. It was a long day. Dr. Kurtzberg says we are still on schedule for a Sunday departure. The highlight of clinic is seeing the other families. We have met some tremendous people. Thank you, God.
Max and Jeff went to school and worked with the PT and OT. They talked about how to move Max and help him make transitions.
Hope you all had a good day.
Love,
Jane
Monday, January 26, 2004 5:20 PM CST
Day 115
Dear Friends,
Capital BRRRRRRR today. And I hear it is much worse in Michigan. The ice came last night and the roads are slick. We didn’t leave the apartment today. Considering we have spent two days in the apartment, I think Sam and Maddie are doing extremely well. They bicker a little with each other. We don’t actually eat meals but eat whenever we feel like it. We’ve played lots of games. They are calling for more ice tonight. We need to go to clinic tomorrow so we hope it isn’t too bad. We aren’t sure if Dad will make it tomorrow between the weather in Michigan and the weather in North Carolina. We will wait and see.
I spoke with Jeff and he said that Max had a good day at school today. He met his health care aide and spent time with Mrs. Gurecki, Mrs. Deacons and the kids. They spent over two hours there and Max was tired when they left. Jeff felt really good about the day.
That’s about it. Tomorrow is clinic day and we hope we are still on schedule to leave this weekend. We’ll find out.
Love,
Jane
Sunday, January 25, 2004 5:32 PM CST
Day 114
Dear Friends,
Brrrrr. How does it go from 58 degrees to a few inches of snow from one day to the next? It was pretty sitting inside the apartment and watching the snow fall. A couple of inches accumulated. We went outside and played a little. Sam lasted longer than Maddie. Other than that, it was an uneventful day. We just played and watched tv.
Max and Jeff went to Williamston to see the Carrolls and Aunt Jill. Jeff had some stuff to pick up in Lansing and Max stayed and played. They were home early so Max can be well rested for his visit at school tomorrow. Jeff will take him for a quick visit and the next day they will work with the OT, PT and his health care aide to talk about his needs. Little by little he will get back in the swing of things. Please say an extra prayer for him. It is so hard to let go.
Hope you all had a good weekend. This hopefully will be our last Sunday in Durham.
Love,
Jane
Saturday, January 24, 2004 6:55 PM CST
Day 113
Dear Friends,
Today was a dull day for us. That’s ok. We like them with out medical emergencies. We hung out in the apartment. Maddie never officially got dressed. She took a bath in the afternoon and put on new pajamas. Sam did actually put clothes on. (Me, too) We went for a little drive and got some french fries. Sam’s potassium was low so we are working on eating things with it in them - like potatoes. It’s a good excuse for McDonalds. It was 58 degrees and sunny. The weather has been just beautiful but tomorrow there is a winter storm watch.
We played lots of Sorry, had a tea party, watched Spirit and played cards. We had tacos for dinner and right after meds, the kids asked if they could go to bed.
Jeff and Max had a busier day. They were able to see some friends. Aunt JoJo came to watch Max while Jeff got some things done. He did a major grocery shopping spree. My mom and dad came over and brought Kippy home. Max was very excited to see her.
It’s a boring journal entry. Thank you, God. My dad arrives Tuesday to help and ride back with us. We should be leaving a week from tomorrow.
Love,
Jane
Friday, January 23, 2004 7:03 PM CST
Day 112
Dear Friends,
Today turned into a busy day. We got ready early (9:00 for us) and went to clinic for our pre-op appointments. Sam and Maddie were checked over and then the child life specialist met with us and showed the kids what their ports would look like and how they would work. Maddie is not thrilled about getting one, but I think she felt better after the meeting. They changed our schedule so both kids will get their lines removed and ports put in next Thursday. We should be able to leave on Sunday if nothing goes wrong.
Sue, our wonderful nurse practitioner, came while we were at our visit and asked us to come upstairs to clinic after we were done. Maddie has had some GVH rash on her legs and she wanted to take a look. We went there when we were done and are going to continue to put cream on them three times a day. It is pretty mild.
After our clinic visit we went home for a while and played. We went later in the afternoon to North Pavilion to have Dr. Escolar look at how Sam is walking. He has a funny gait. He did a little when we got here but it is different now. She watched him for a while and just thinks he is really weak. She suggests both Sam and Maddie have PT when we get home twice a week. I felt good because I was concerned that it was MLD related. In the big picture it would not be life altering like the deterioration Max has had, but I am hoping for very little change over the next year. Anyway, Dr. Escolar thinks he just needs to build back muscle. She said after we are done with steroids it will get better too.
We ordered a pizza, took our meds, put on our pajamas and the kids actually asked to go to bed at 7:30. They are tired. I can hear them talking still and listening to the Spirit Soundtrack CD.
I miss Max and Jeff but am so glad they are home. They had a busy day unpacking the Uhaul. My dad came and helped. Thanks Dad. 8 more days and we will head home soon.
Joan of Arcadia is on. Gotta go. I hope you all have a great weekend.
Love,
Jane
Thursday, January 22, 2004 6:01 PM CST
Day 111
Dear Friends,
At 5:45 this morning, Jeff, Max and Bill headed out. We talked a little while ago and they were in Michigan but not quite home. I am glad they are there and have made it safely. I am not one to worry about travel much, but it was on my mind today for some reason. Maddie and Sam really miss Jeff and Max already but we still had a good day.
I took them to clinic this morning so Maddie could have school. Sam and I bummed around for an hour. When Maddie was finished, we went to that small toy store and book store that Dr. Kurtzberg okayed. We had fun looking around. They were both very good.
That’s about it for today. I’m waiting to hear from Jeff that they officially made it home. Thank you, God.
Oh by the way, I got so warm today due to the sun shining so brightly, that I had to take off my coat and walk around in my sweatshirt. I thought you Michiganders would appreciate that.
Love,
Jane and Jeff
Wednesday, January 21, 2004 8:12 PM CST
Day 110
Dear Friends,
Sorry. I got a late start tonight. We’ve been busy packing up the UHaul all day. I say ‘we’ but what that translates to is ‘Jeff’. I kept the kids busy while he worked. We have accumulated a lot of stuff.
Max had OT, PT and speech today. It is hard to say good-bye to the therapists. They have taken good care of our boy. I think Max is excited to come home. I will really miss him and can’t believe I will spend 11 days away from him. I am sure it will be hard for Jeff too.
Maddie and Sam had a busy day in the apartment. They played lots of games. We got a call that Maddie also has 100% donor cells. Thank you, God.
We were all really excited to see Uncle Bill in the afternoon. The kids liked having someone new to play with. By the way Sally, I think Bill REALLY wants a puppy.
Jeff, Max and Bill are ready to go in the morning. Thank you for all the safe travel notes. Please say a prayer that they make it safely. We will really miss them.
Love,
Jane and Jeff
Tuesday, January 20, 2004 7:37 PM CST
Day 109
Dear Friends,
We started out the day with both kids holding down their meds! Yahoo, no cleaning up puke first thing in the morning. Drew blood, ran blood, got Max fed, dressed and ready for OT. Got Maddie and and Sam ready for clinic. We were exhausted by 8 am. This routine is getting old, but thankful for it.
Max had a good day with OT, speech and PT. He was very tired after PT. It was his last day with Amy today. Thank you Amy! He rested very little between therapies. I did some more packing. We need a bigger Uhaul! I can’t believe all the “stuff”. Jane should have a light load with her on their way back to Michigan (sounds nice). Max and I went to clinic to say good bye (for now) to Dr. Kurtzberg and some others. We didn’t get a chance to see her, so Dr. Kurtzberg, “We’ll see you in about three months and THANK YOU SO MUCH for all you have done for our family. You have given us hope for a bright future.” Thank you to all the other people I didn’t get a chance to say good bye to. 5200, thank you SO much. Duke is a wonderful place!
Jane had a long day at clinic with the kids. All blood work came back good. We are still on schedule for their return the first of February. The kids “Best Buddies” came by to play with the kids. They also had school.
That’s about it. Hope you all had a good one. See you tomorrow Bill.
Love,
Jeff (and Jane)
Monday, January 19, 2004 6:25 PM CST
Day 108
Dear Friends,
It was a cold day in Durham (42 degrees). We kept ourselves pretty busy. Max had PT in the morning. We went to the mall and walked on the outside street to see the fountains. We wouldn’t dare take them inside. There were people all over. They didn’t have school here due to Martin Luther King day.
We came home and made some Shrinky Dinks. I helped Max color a couple and Sam and Maddie did a few. We played some Sorry. We did lots of packing and can not fathom how we collected so much stuff in 5 months. Max’s therapy equipment alone would fill the van.
The highlight of the day was a visit from the Joiner boys’ grandparents. They brought the kids some hats. They say ‘Kick MLD in the butt’ and has their name on the back. They were made by their friends the Wallaces and they are great. It was also nice to talk with them. I even learned what peanut patty was. MLD has really brought some nice people into our lives.
As I type, Sam is playing with his trains. Maddie and Jeff are playing cards. Max is watching SpongeBob. Life is nice. Thank you, God.
Love,
Jane and Jeff
Sunday, January 18, 2004 6:26 PM CST
Day 107
Dear Friends,
Well, today was a little bit wild. We started this day taking meds. Sam has been having a harder time keeping them down. He threw up right away while taking his meds. Jeff kept going and when they were done, he threw up again. He rested for half an hour. We gave him his meds again. About 40 minutes later he threw up. This time it was bloody. I was a little nervous.
We called clinic and they had us come in. They drew labs (His platelets went up again. Yeah!). They weren’t too concerned with the bleeding. First of all, Sam looked and felt great. They think the first two times with all the retching started the bleeding. Due to his low platelet count, something started bleeding. They gave him some platelets in case he throws up later. The nurse practitioner also thought the new antibiotic was making him nauseous. All in all they were not concerned.
When they did his lab work, they noticed his hemoglobin was low. This has been going down slowly and we were expecting to get blood sometime soon. So we stayed and Sam was infused today. This surprise visit lasted 7 hours. Sam and I were pretty tired by the time we got home.
Maddie, Max and Jeff played games and hung out. Jeff is packing like a mad man and he did all the laundry and even made chili.
Now we are all settled in and relaxing. We thank God that Sam’s throwing up was nothing to worry about.
Love,
Jane and Jeff
“Lets Kick MLD in the Butt” Benefit 2004
The fundraiser is on Saturday, February 7 from 3:00 pm to 7:00 pm at Central Montcalm Upper Elementary in Stanton, Michigan. Things will run a little different this year. Instead of dinner, it will be a dessert buffet. Raffle will be mini drawings. Items will be set up on the perimeter of cafeteria and gym with coffee cans in front of items. Tickets are purchased and place in as many or few cans that you want. Silent auction will be the same. There will be drop off times for the baskets and desserts as follows: Friday, February 6 from 4:00 pm to 7:00 pm and Saturday, February 7 from 8:00 am to 10:00 am. If you have any questions, please contact Penny Burlison at: pburlison@cms.maisd.com or call at 989-831-2300 (ask for Penny).
Saturday, January 17, 2004 6:21 PM CST
Day 106
Dear Friends,
Happy Birthday, Maddie! It is hard to believe our little baby girl is 6. She was very happy that it was her birthday. She opened gifts (Shrinky Dinks, Barbie chair, Barbie Disco ball, makeup kit and fashion toy) , ate cake (Powerpuff Girls), and picked out dinner (KFC chicken legs). She had a good day and enjoyed the calls she received and the cards in the mail. It was a good day.
Besides her birthday, nothing else was really going on. We played games and hung out.
Our tentative plan for coming home is set up. Jeff and Max will be leaving early Thursday morning. Uncle Bill is flying out on Wednesday to ride with them. Maddie, Sam and I will be leaving two weeks from today. The plan may change if Dr. Kurtzberg has any concerns. We’ll know more Tuesday.
We received more good news last night. Both Maddie and Sam have normal enzyme levels. Thank you, God.
We continue to thank God for how well the kids are doing and that Maddie was able to have a sixth birthday. We pray that MLD stays away from Maddie and Sam this year as their new cells spread and make enough arylsulfatase A to keep them healthy. This isn’t over yet. We look forward to Maddie’s seventh birthday where she is a perfectly healthy young girl.
Love,
Jane and Jeff
Friday, January 16, 2004 5:51 PM CST
Day 105
Dear Friends,
It is Max’s 1 year anniversary for the new cells today. We celebrated with cake. Strawberry- his choice. It has been a rough year for Max, but he has done so well. We are so incredibly thankful. We have sad moments at times when we see what he has lost, but we are so hopeful for his future. He has a lot of work ahead of him. Go Max!
Another celebration in our near future is Maddie’s sixth birthday tomorrow. Six years ago God gave us this incredible girl, full of strength and confidence. She will be spoiled tomorrow.
We took blood this morning from Maddie and Sam. Sue, our nurse practitioner called and said that their numbers looked good. Their hemoglobin is slowly going down so they may need a transfusion one more time in the next week or so. Their magnesium is also slowly going down from cyclosporine use. We are going to start adding supplements twice a day.
The best news was that Sam has 100 percent donor cells. Thank you, God. That is 100 percent ‘Arylsulfatase A’ making cells! Maddie’s results aren’t back yet. We should know next week.
Max had school, PT and OT today. He is working hard. When he was done we went for a drive.
That’s about it. Tacos for dinner. After dinner walk. Crazy game of Sorry. It was a good day. Thank you, God.
Love,
Jane and Jeff
“Lets Kick MLD in the Butt” Benefit 2004
The fundraiser is on Saturday, February 7 from 3:00 pm to 7:00 pm at Central Montcalm Upper Elementary in Stanton, Michigan. Things will run a little different this year. Instead of dinner, it will be a dessert buffet. Raffle will be mini drawings. Items will be set up on the perimeter of cafeteria and gym with coffee cans in front of items. Tickets are purchased and place in as many or few cans that you want. Silent auction will be the same. There will be drop off times for the baskets and desserts as follows: Friday, February 6 from 4:00 pm to 7:00 pm and Saturday, February 7 from 8:00 am to 10:00 am. If you have any questions, please contact Penny Burlison at: pburlison@cms.maisd.com or call at 989-831-2300 (ask for Penny).
Thursday, January 15, 2004 6:17 PM CST
Day 104
Dear Friends,
According to the weather channel, it was a nicer day in Durham than Stanton Michigan. It was colder today in the 40’s and 50’s. It was sunny and beautiful, but we still wish we were home.
We continue to be stir crazy. Max had only one hour of therapy today. Maddie and Sam didn’t have anything. We are still watching too much TV. There just isn’t much for the kids to do. Or the adults. We are playing lots of games.
Don’t get us wrong. We’d rather be bored than facing a medical emergency. We thank God daily for how well the kids are doing. You would think that after all we have been through this year we would cherish every moment with our kids. A small glimpse into our lives tonight (all within a few minutes): Maddie was just talking a mile-a-minute about “nothing”. Sam was entertaining himself (yelling like a crazy sailor) in a storage tub, tipped over and hit his head. Max was just hanging out taking it all in and laughing. Jeff just looked at me a little while ago and said, “Do you realize we have spent every day (almost) of this year (2003) with our kids?” You had to see the look on his face.
It sounds negative, but I think anyone who has taken a long family vacation can relate. We adore our kids. We thank God for them. We just have to get out of this apartment!!
Love,
Jane and Jeff
“Lets Kick MLD in the Butt” Benefit 2004
The fundraiser is on Saturday, February 7 from 3:00 pm to 7:00 pm at Central Montcalm Upper Elementary in Stanton, Michigan. Things will run a little different this year. Instead of dinner, it will be a dessert buffet. Raffle will be mini drawings. Items will be set up on the perimeter of cafeteria and gym with coffee cans in front of items. Tickets are purchased and place in as many or few cans that you want. Silent auction will be the same. There will be drop off times for the baskets and desserts as follows: Friday, February 6 from 4:00 pm to 7:00 pm and Saturday, February 7 from 8:00 am to 10:00 am. If you have any questions, please contact Penny Burlison at: pburlison@cms.maisd.com or call at 989-831-2300 (ask for Penny).
Wednesday, January 14, 2004 5:33 PM CST
Day 103
Dear Friends,
It was a sunny, warm, beautiful day in Durham. I think it is God’s reminder that we aren’t in that big of a hurry to get home. We can wait a little bit longer.
Maddie and Sam did not give blood and didn’t have to go to clinic. They had a relaxing day at the apartment. We did make them take a short walk around the apartment complex and practice stairs.
Max had OT, PT and speech today. He also got outside and went for a walk/roll. He did a good job today. He has been a bit perkier lately.
We are still waiting to set a plan for going home. We’ll let you know when we know what is going on.
We hope you all had a good day.
Love,
Jane and Jeff
Tuesday, January 13, 2004 6:31 PM CST
Day 102
Dear Friends,
A busy Tuesday here in Durham. We started the day with a very big blood draw and then our regular med routine with Maddie and Sam. Jeff ran the blood and I got Max ready for 8:30 OT. At 8:20, I called Stanton Elementary and we discussed Max’s return. Stanton Elementary is full of wonderful people and they seem very ready for ole Mighty Max.
After the phone call, Maddie, Sam and I went to clinic. Their platelets continue to go up. We still are not sure when we will be able to go home though. We thought we (the two little guys and I) would be leaving two weeks from tomorrow and Jeff and Max would leave this weekend. Our nurse practioner, Sue, called later in the day and told us she couldn’t schedule the line removal and port placement until January 28 and 29. Yikes. They are working on it and we’ll see what happens. We hope we can get in sooner. There were other changes too. Their IV steroids are switching to oral tonight. They cut another blood pressure med dose. We have gone from 4 to 1. Maddie’s Amicar (med due to bloody noses) was eliminated. A sinus issue showed up on Sam’s MRI, so we are starting an antibiotic for that. It is IV and will require a pump but only lasts a week. Overall, things are going as they should and we thank God.
Max had PT and speech after we left. He then met us at clinic and got his immunizations. He did a good job.
Pizza for dinner tonight. We all look pretty tired. It’s time for jammies. Hope you all had a good day too.
Love,
Jane and Jeff
Monday, January 12, 2004 5:31 PM CST
Day 101
Dear Friends,
It was a pretty sunny day in North Carolina. Maddie and Sam started the day with an EEG. Jeff took them and they did a good job. They were back at the apartment in about two and a half hours.
Max had PT and school today. During PT he stood up with his walker for 40 minutes. We were playing catch and kicking a ball around. He did a good job.
Jeff took the kids for a long drive trying to find a Uhaul place. We played games, etc. Tomorrow will be a busier day with clinic. Max will also start to get immunizations tomorrow.
Someone asked if we would be keeping up the journal after we got home. We will continue it. It will have to end sometime, but we aren’t out of the woods yet.
Happy birthday Aunt Jill! Hope you had a good day.
Love,
Jane and Jeff
Sunday, January 11, 2004 6:29 PM CST
Day 100
Dear Friends,
Day 100 was a good one for us. Jeff took in Sam’s blood this morning. They called us with the results and his platelets went from 10 to 15. Maybe Sam is on the move. His white blood cell count was only 3.0. We hope this goes up so we do not have to give him the GCSF. Both kids do not give blood again until Tuesday. We hopefully will find out more about when we can go home.
Other than that, it was a long boring day. The apartment seems to be getting smaller. It was cold out, and we did not get out much. We played some Sorry and watched way too many cartoons.
We hope you all had a good weekend.
Love,
Jane and Jeff
Saturday, January 10, 2004 7:33 PM CST
Day 99
Dear Friends,
It was a very cold but sunny Saturday in Durham. It was cold enough to keep the snow around. There were even ice patches on the sidewalk. Brrr.
We had very good news on the blood draws this morning. Neither Maddie nor Sam needed anything. Maddie seems to be on the move. Her platelets keep rising little by little and everything else looks good. Sam was on the border today. His platelets were 10. If they are less then 10, he needs to come in. We are taking blood from him tomorrow and would love to see this number at 11 or higher. His white blood cell was 3.1. Below 3, he gets growth factor. He was really testing the limits today. Once both kids are making platelets and looking good, they will have their lines removed and will have a port put in. This will make life easier for them. Good-bye bandage changes. Hello deep baths! Maddie today, for the first time in a long while, wore jeans today. Snap and zipper pants. Her steroid belly has gone down. We will try Sam tomorrow. I suspect they will fit.
Max had a good day today. He still looks very tired. We started him on Vioxx again and aren’t sure if it is dragging him down. It isn’t supposed to. Jeff did a lot of work with Max standing. They tried to take a walk, but it was too cold for them.
We played lots of Sorry and cards today. The computer was busy with games too. The days are getting long in this apartment, but a boring day is a good day. Thank you, God.
Love,
Jane and Jeff
Friday, January 9, 2004 5:26 PM CST
Day 98
Dear Friends,
“It’s beginning to look a lot like Christmas.” Oh wait. It’s January. We woke up to a half inch of snow this morning. All the schools were closed and the local weather reporters were excited. It kept snowing all morning and it was beautiful. Jeff was loving it and was ready to pack up and drive to Michigan. Snow just made us miss home all the more. It was 33 degrees which was chilly. We aren’t complaining we saw the temps in Michigan.
Maddie and Sam had the day off. They took advantage of the time and went out and played a little in the snow. Poor Ellie, Max’s OT, never saw the snowballs coming as she was walking into the apartment.
Besides OT, Max also had PT. It was a tough day for him. He has good days and bad days. He didn’t really want to do much.
Because of the weather outside, we snuggled in, ate chili, played games and watched tv. It was a nice day. We did get outside as a family for a little bit. We tried to take advantage of the snow before it melts.
We really want to say a huge ‘Thank you’ to everyone who is helping get our house ready. Whenever we call, we never know who is going to answer. They are busy cleaning all the building mess up and putting finishing touches on everything. We are so grateful. I am afraid to mention names because we aren’t exactly sure who is there right now. Mom tells us that Corby and Penny are incredible workers and organizers. Thanks to everyone.
We are really hoping that Jeff and Max can leave next weekend. We’ll know more on Tuesday. We are anxious to get Max back to school and help him adjust . We talked about it last night with him and he says he’s nervous. Who could blame him?
We thank God for the wonderful people He has put in our life. We ask him to hold Max tight as he moves forward and tries to fit his current body into his old llife.
Love,
Jane and Jeff
Thursday, January 8, 2004 7:16 PM CST
Day 97
Dear Friends,
Well, this Caring Bridge site is officially one year old. We started it on January 8, 2002, 2 days after Max entered the hospital. In some ways, it seems much shorter than a year. In other ways, it has been a decade.
Sam had his MRI this morning. He couldn’t have anything to eat or drink when he woke up in case he needed to be sedated. He made it through the 45 minute procedure wide awake and sitting still. We are very proud of him.
Because he couldn’t eat or drink, he couldn’t take his meds this morning. As soon as we got home, I gave him his meds and he threw up. I gave him his meds again and he was fine. Maddie, meanwhile was throwing up in the bathroom. They both felt fine and ate Doritos and Cheetos. Maddie ended up throwing up again before bed. Then she was as happy as can be. Post transplant bodies are so weird.
We took blood this morning and dropped it off. A nurse practitioner from clinic called and neither Maddie nor Sam needed anything today. We’ll check again Saturday. That means Maddie will have made it 10 days without platelets or blood. Sam will have made it a week. Maybe the end is near after all. Look out Michigan!
Jeff took Max to the University of North Carolina for an evaluation. These are always hard and somewhat emotional because they focus on what Max can’t do. They made many good suggestions for helping him and will evaluate him again in three months. I forgot to mention yesterday that he went back and got his braces checked over. They added a little padding and all is well.
That’s about it. It is still cold. We are wearing our winter coats. It may even snow a little tonight or tomorrow.
Love,
Jane and Jeff
Wednesday, January 7, 2004 6:20 PM CST
Day 96
Dear Friends,
Brrr. We actually had to wear winter coats today. We also had to turn on the heat. I’m sure all of you in Michigan feel real sorry for us.
Maddie and Sam had an eye doctor appointment this morning. They did a good job and their eyesight is normal like it was before transplant. When we got home Maddie threw up and took a nap. I think the Pentam from yesterday upset both Maddie and Sam’s stomach. She must have been fine because she ate tacos for dinner with great gusto. In the afternoon, Maddie went for an MRI. She did the 30 minute test without sedation. I was very proud of her. It is Sam’s turn tomorrow and I hope he can do as well.
Max worked hard today. He had PT, OT, and school. He and Maddie played Disney Sorry this afternoon on their own. She is so good with Max and helps him so much. As I am typing this she is throwing jelly beans in his mouth and telling him they are his meds. He of course keeps tipping over laughing. Life is so good.
We have gotten other results back on Maddie and Sam. The pulmonary function tests were good. The echos were good. The nerve conduction tests were similar to before transplant. They are not normal but not too concerning. We hope as we have these tests done at 6 months and a year that the results are as good.
That’s about it. It was a good day. Tomorrow Sam has the MRI and Max will go to the University of North Carolina for his development tests for his one year studies. We’ll take blood in the morning and see if Maddie or Sam need anything. Maddie has gone 8 days without platelets. Yay!!
Love,
Jane and Jeff
Tuesday, January 6, 2004 7:51 PM CST
Day 95
Dear Friends,
It was a crazy busy day. Maddie and Sam and I headed out at 9:00 this morning to go to appointments and clinic. We went and had echocardiograms. The kids handled it well and it was pretty easy. We then went and had pulmonary function tests done. Maddie and Sam did very well with these too. We then went to clinic and gave blood for 100 day studies. They didn’t check for donor cells and enzyme levels. We’ll do that next week. While at clinic, they got their IVIG med in their lines. This takes an hour and a half. They then had to do a breathing treatment that prevents pneumonia (Pentam). You could hear my angels yelling and crying through out the whole clinic. I have never seen Sam carry on the way he did. Nurses kept walking by to see if we needed help. The other parents were watching me closely. By the time I was finished with Maddie, I think they just wanted to see if I’d break. I kept it together pretty well, but I was worn out by the time they finished. The one thought that cheered me right up was that next time they get the treatment, we will be home and no one will hear them scream. :)
Then we met with Dr. Kurtzberg. Things are going well. Maddie hasn’t needed platelets in a week. We’ll check on Thursday for both kids. Dr. Kurtzberg and Sue lowered their steroids and cut out one of their blood pressure med dosages. I am hoping we will have a better idea on how they are doing with blood and platelets by next Tuesday. We’ll see.
One thing I really like about Tuesdays is seeing all the people we’ve met. Some people are just getting off the floor and many are like us - biding our time before going home. It is nice to se them and talk with them. We have met some great families.
Things were busy at the apartment with Jeff and Max too. Max had PT, OT, speech, and school. They took a long walk. Jeff did lots of cleaning.
Our night ended with meds and Sam throwing up (We think it was the Pentam) and Jeff cleaning up again.
Busy, busy day. Now its three kids tucked into bed and two grown ups watching tv and talking. Thank you, God.
Love,
Jane and Jeff
Monday, January 5, 2004 7:34 PM CST
Day 94
Dear Friends,
Today was the beginning of Sam and Maddie’s 100 day studies. They both went to get nerve conduction tests. They went well. Sam got a little upset when the doctor was putting the tape on his leg. Maddie got a little upset because she had to put on a hospital gown. Neither got upset when they were supposed to - during the shocks sent up their legs. They handled it well. They didn’t have anything else planned for today.
Max had PT this morning. He did some walking with Barbara and his walker. It is very hard work.
Sally left this evening. It was fun to have her here. The kids had a great time and she must be exhausted. Thanks Bill, Molly, Grace and Jackson for letting her come. Thanks Sally. We’ll see you soon in Michigan.
We had a call today with a new MLD family from California. They have an 8 year old daughter who is recently diagnosed. They are waiting to hear about their other two children. Jeff and I are happy to help other people but will not be satisfied until no one else needs to call because there will be a treatment where 20 f the kids aren’t dying. There has been talk about a benefit in Stanton again. We really appreciate that others want to help support research in MLD and all the leukodystrophies. Many of you know Sam, Maddie and Max. This isn’t about just them. It is about Emma, Lucas, Maddigan, Nathan, Aroma, Trevor, Ross, Dominic, Dennis, and Sarah and all the other kids who haven’t called yet. These are just the MLD kids we’ve gotten to know well. There are the kids and adults we met when Max was first diagnosed and Sally and I went to the MLD conference. If we listed our friends with the other leukodystrophies, you would be amazed. Jeff and I will always be trying to help a cure be found. The fact that so many of you want to help too is awe inspiring and overwhelming. Thank you.
Love,
Jane and Jeff
Sunday, January 4, 2004 6:04 PM CST
Day 93
Dear Friends,
A nice Sunday in Durham. It was very warm and I even had to put shorts on today.
Sam had to go to clinic today and get blood. Sally and I took him and we were there for a few hours. We were the only ones there. It was quiet and peaceful.
Jeff, Max and Maddie stayed at the apartment and had a good time. They went out for a drive and did some laundry.
That’s about it here. We heard about all the snow in Michigan. Sally flies out tomorrow evening and hopefully she won’t have any problems with flights. No clinic tomorrow but Maddie and Sam will start their 100 day studies. They have nerve conduction tests in the afternoon.
Love,
Jane and Jeff
Saturday, January 3, 2004 5:57 PM CST
Day 92
Dear Friends,
What a beautiful day in Durham. We tried to spend a lot of time outside without exposing Maddie and Sam to too much sun. It was so warm Jeff switched back to shorts.
Sam had to go to clinic this morning and get some platelets. He made it 6 days. That is progress. They will both give blood tomorrow and Sam may need blood and Maddie may need platelets. All three kids are feeling good and acting great.
We went over to the playground at the apartment complex. Maddie and Sam had no problems climbing the stairs to get to the slide. Max had a good time on the slide too.
Sally has been keeping the kids very entertained. She answered all of Sam’s 506 questions during the Stitch movie. What an aunt!
Tomorrow it is supposed to be up to 74 degrees. We are going to enjoy it before it gets colder. Jeff may even get some golf in. Last year on this day we made the decision to transplant Max (Thank you, God) in the freezing cold of Minnesota.
We hope you are all having a good weekend.
Love,
Jane and Jeff
Friday, January 2, 2004 5:54 PM CST
Day 91
Dear Friends,
We started the day drawing blood and giving meds. We had a meeting with Dr. Kurtzberg about Max at 9:00, so we had to rush. Sally stayed with Maddie and Sam while we headed out of the apartment.
The meeting was good. Whenever we meet with Dr. Kurtzberg, we leave feeling great. We call it a ‘Kurtzberg buzz’. She is so hopeful and positive about what Max’s future will bring. All of the tests they ran came back with good news. His immune system is normal. His enzyme level is normal. We haven’t found out about the donor cells yet, but since enzyme level is good, donor cells should be good. His MRI has not changed at all since his original one in October, 2002. All positive news. We are encouraged to keep working with Max and giving him time to regain skills. We’ve always believed, but it is so reassuring to hear the same belief from a doctor. Go Max! Thank you, Dr. Kurtzberg. Thank you, Dr. Krivit. Above all, thank you, God.
When we got home, we found out that Maddie and Sam did not have to go to clinic. Max had PT in the afternoon. He did a good job.
Sally has kept the kids very entertained playing games and reading books. Sam is especially attached to her. These kids have such great aunts and uncles.
We hope you all enjoy the weekend. According to the forecast, temps will be in the ‘70’s.
Love,
Jane and Jeff
Thursday, January 1, 2004 5:30 PM CST
Day 90
Happy New Year!!!!
Dear Friends,
Day 90. Wow. It is hard to believe. Today was a nice sunny day in North Carolina. Maddie and Sam had the day off of clinic. Max had OT this morning, but he had the rest of the day off. We had a good time with Aunt Sally. It was a great day to take a walk around the apartment complex. All three kids did some stairs too.
Tonight I gave Max a bath. I hadn’t really done that much (maybe twice) since we have been here. It was surprising to see how much he had changed. When we got here in August, he hated the bath. His bottom and back would hurt from sitting on a hard surface. He would just lay back in the water. Tonight he had a deep bath and had a great time. From the laying position, he could get himself up to sitting. With nothing in the tub to help, like bars, it was so awesome that he could do it. It was very impressive and a great example of how his overall strength has improved. Go Max.
After being on the antibiotic for two days, Maddie has really become more spunky. Things are looking good. Thank you, God.
Love,
Jane and Jeff
“In 2003, we kicked MLD. In 2004, we’ll kick it some more.” Anonymous
Wednesday, December 31, 2003 4:39 PM CST
Day 89
Dear Friends,
2003. Good-bye. I have very mixed emotions about this year. It was a hard year and I have experienced more pain this year than any other. It was also a miraculous year and I am so grateful for all that has happened. I want to burn my 2003 calendar and at the same time I never want to forget all that has happened and all we have learned.
On this last day of the year, Maddie was tested for an infection in her urine. She was put on an antibiotic and they do not seem too concerned. Max had OT today. Sam had the day off.
Aunt Sally (my sister) flew in last night and has been playing with the kids all day. We are very happy to have her here. Thanks Bill, Molly, Grace and Jackson for sharing her with us.
Tonight we celebrate the start of 2004. We remember all of our friends, new and old, who have suffered great loss this past year. We hope 2004 brings peace and joy to you all.
Love,
Jane and Jeff
I need to correct the information I gave last night about the Owosso Argus Press. It probably will not be in this Sunday's paper but one of the following Sunday editions. Sorry.
Tuesday, December 30, 2003 5:42 PM CST
Day 88
Dear Friends,
Joanne left this morning. She left before Sam and Max woke up. Maddie came out just in time to say good-bye. Jeff took her to the airport. We can never thank her enough for coming to North Carolina with us. We could never have done it without her. She took such good care of not only Max, but the rest of us as well. She did our laundry every single day. She was constantly picking up and made the most normal activity more fun. The kids are very lucky to have her. It was not an easy task that we asked of her, and she never complained. Thanks Vestaburg schools for letting her come and help. Thank you so much Joanne. We love you and miss you.
Maddie and Sam had clinic today. It was Tuesday and we saw Dr. Kurtzberg. They both got IVIG and Maddie received hemoglobin. Dr. Kurtzberg thinks we will be able to go home in 2-4 weeks. I’m predicting we will be at the longer end of the time frame. She would like to be done with platelet and blood infusions before we leave. That may take some time. As much as we would like to go home, they are taking very good care of us. We will do anything Dr. Kurtzberg says.
She also told Sam and Maddie they could have salad again. You should have seen the look on their faces. The first thing they did when they got home was have a salad with Catalina dressing. They have been asking every night for one. It is so odd as a mom to have to say no to salad. She also okayed apples with no peel. Sam had one of those too. These are just two examples of the small steps we are taking to get back to ‘normal’.
Maddie and Sam are playing nurse right now. It is so funny to hear them talk about solumedrol and GCSF. They keep asking where their syringes are. They are now giving Max medicine (water) out of a syringe and telling me "You child needs to take this three times a day." They have nearly drowned him. It has been a wacky year.
Love,
Jane and Jeff
I need to correct the information I gave last night about the Owosso Argus Press. It probably will not be in this Sunday's paper but one of the following Sunday editions. Sorry.
Monday, December 29, 2003 5:53 PM CST
Day 87
Dear Friends,
Today was a quiet day. Maddie had blood drawn this morning but did not need to go to clinic. Sam had the day off too. It was beautiful - in the 60’s and sunny. We took some walks.
Max had PT this morning. We talked with his therapist, Barbara about his new braces and she always has such good advice. She always seems to light a fire under us. His braces have been hurting him a bit and she reminded us that the goal is to wear the braces all day. We hadn’t been good about it over the weekend, but after talking with her, he wore them for most of the day. Max, like the trooper he is, did not complain much at all. Barbara also reminded us how far Max has come in the few months she has worked with him. It was great to hear.
We bought our New Year’s Eve hats and noise makers. Jeff took some great pictures and we are ready to ring in the new year.
Joanne is packed and will leave bright and early tomorrow morning. We feel mixed emotions about her departure. Sad because we will miss her. Happy because her leaving signals the beginning of the end. We, too, will hopefully leave before too long. Go, platelets, go! We’ll get all mushy about her in tomorrow’s journal after she leaves.
Love,
Jane and Jeff
For all of you Chesaning readers, the Owosso Argus Press is writing a story about us for next Sunday’s paper. It will either be in the living or neighbor’s section.
Sunday, December 28, 2003 6:30 PM CST
Day 86
Dear Friends,
Today was another slow day. We drew labs from Maddie and Sam this morning and took them in. Both of them needed platelets. Into clinic we went. It didn’t take very long, and with their colds, we were happy to have someone see them and listen to their lungs. They sounded clear. Meanwhile, everyone in the apartment has a cold.
Other than that, it was a long day. We took some walks. It was beautiful outside. We went to a park with a mill. We didn’t stay long but will go again.
I took Sam for a walk around the apartment complex tonight. We were talking about Max walking again and Sam said, “You should listen to God.” I was a little stunned but asked Sam what God was saying. “If Max works hard, he will walk again.” Thank you, God.
Love,
Jane and Jeff
Saturday, December 27, 2003 4:55 PM CST
Day 85
Dear Friends,
Fifteen days away from day 100. Great! After day 100, hopefully we will soon be home. We will have to see what Dr. Kurtzberg says.
We didn’t draw labs this morning. Therefore there was no clinic today. We’ll draw blood tomorrow and most likely Sam and Maddie will both need platelets.
We now have 5 stuffy noses in the apartment. Jeff is the only one who seems unaffected. Of course, for those of you who know Jeff’s sinuses, a common cold would be nothing. We pray that we all have something simple and it doesn’t develop into anything worse for Sam and Maddie.
Joanne is flying home on Tuesday. It is hard to believe she only has two more days left. It will be hard on all of us when she leaves.
It was a beautiful day in Durham. We took walks and Maddie and I sat by the pool and played Fashion Rummy (a new Christmas card game).
We are starting to get very bored. That’s a good sign that it is time to go home. Thank you God for making that happen.
Love,
Jane and Jeff
Friday, December 26, 2003 7:20 PM CST
Day 84
Dear Friends,
Happy day after Christmas. We spent much of the day playing with yesterday’s toys -especially Sam. We had to take blood from Sam and Maddie this morning and drop it off. They called and said Maddie’s hemoglobin was suspiciously low. I took her to clinic so they could take it again, and it came back fine. While we were there, we also had her glucose checked and that too was fine. Sam’s white blood cell count was below 5 so he gets a dose of GCSF tonight. All three kids have a stuffy nose still but are doing fine. No labs tomorrow.
Max had OT today. All three kids watched a lot of TV, went for walks, and put our Christmas stuff away.
It was a boring day with mostly healthy kids. Thank you, God.
Love,
Jane and Jeff
Thursday, December 25, 2003 6:35 PM CST
Day 84
Christmas Day
Dear Friends,
A year ago: During the Christmas program at church, I watched Max walk up the aisle and prayed he wouldn’t trip and fall. He was having a hard time moving his legs well. On Christmas Eve, the Rhode family gathered and tried to act normal, knowing we were leaving for Minnesota in 4 days- not knowing if we were going to actually do a transplant with Max. Leaving my parents house Christmas Eve night was one of the most painful memories. There were many tears in the living room, on the porch and in the car on the ride home. At church that night, Pastor Jamey sang and played the piano. I remember looking at Jeff seeing my pain mirrored in his eyes. Then we went to our friends’ house after church. Santa came to visit and spoiled our children and us. Leaving their house wasn’t easy either. On Christmas day we went to Charlevoix. We all tried to be upbeat but there was an underlying sadness to the day. We had no idea what the future held for us.
This year: I have two bald kids with cheeks and bellies that look ready to pop. I have a beautiful eight year boy who laughs often. I sat and watched my Sam play with his trains, Maddie listening to a portable CD player and Max just soaking up all the excitement. They enjoyed their gifts so much.
It wasn’t a perfect Christmas. We miss our family. It would have been nice to see snow. Maddie belched (loudly) during grace. Santa brought toys that were WAY too much work for the grown ups. But it was so much easier than last year’s.
It still isn’t easy to watch Max not able open up his gifts or manipulate the toys by himself. This Christmas was better than last year’s. But next year we are going to celebrate Max’s improvements and the amazing healing of all three kids.
We hope you all had a wonderful Christmas with people you love.
Love,
Jane, Jeff, Joanne, Max, Maddie and Sam
Wednesday, December 24, 2003 4:56 PM CST
Day 83
Christmas Eve
Dear Friends,
We’ll make this short and sweet tonight. We need to prepare for Santa. Maddie and Sam both had a runny nose today and Maddie had a temp of 99.4. We emailed Dr. Kurtzberg and she had us come in for a viral battery test. We called clinic a little while ago and found out they both tested negative for a whole bunch of stuff - including the flu. Dr. Kurtzberg called right after we hung up and said the same thing. Merry Christmas. Thank you, God.
Jeff Suppes, a Chesaning native now a Durham native, and his wife Patty brought us dinner today. It was wonderful, turkey, potatoes, pie, etc. They have been so nice to us and we can never thank them enough.
The kids have opened some presents and are enjoying some new things. We hope you all have a wonderful night. Merry Christmas.
Love,
Jane, Jeff, Joanne, Max, Maddie and Sam
Tuesday, December 23, 2003 6:30 PM CST
Day 81
Dear Friends,
Tuesday is our big clinic day. Maddie and Sam received their IVIG through their lines. They were both getting low on platelets and could have waited another day, but they gave them to them today so we could have the next couple of days off. So no running blood for two mornings. Yay. Merry Christmas. Everything else looked good today. They decreased the steroids and we are ending the GCSF. All positive strides.
Max had OT, PT and speech today. His new braces came in so Joanne took him to get fitted and he used them in PT. They are a big step forward (no pun intended). They hold his ankle down like it has never been down before. They will take some getting used to, but he will do it.
I forgot to mention yesterday that the kids got a letter from Santa in the mail. We had a mailed a letter to him to let him know where we are and we got one back. Pretty exciting.
There was an article about us in the Daily News today. We thought it was very good. They even included mom’s journal entry about the three acts of a play. She even had her own byline. If you would like to check it out go to http://www.thedailynews.cc/ . Thanks Shelly.
We overdid it a little yesterday. Maddie’s legs were hurting from the stair climbing. In our memories, we could faintly hear Dr. Kurtzberg’s words of warning that she had given us a few weeks ago. Something about not over doing it, legs hurting, etc. She was right again. We gave Maddie the day off of stairs.
Love,
Jane and Jeff
Monday, December 22, 2003 5:37 PM CST
Day 80
Dear Friends,
For some reason, I am very emotional right now. Tears are close to the edge tonight. I can’t really explain why. I’ve always told Jeff that about 4 months after we get home, I will probably lose it for a few days. The reality will hit of how close we came to losing the kids. Maybe it’s hitting a little tonight, but I think it is other stuff.
Max had two more tests to be done for his one year anniversary. While at clinic, we saw the Joiners in the waiting room while their boys were in surgery getting their lines. I understand what all of you have meant that you always wanted to "just do something” for us. The memories of taking Max in for his line came flooding back and I would have done anything to help them. There was nothing we can do. So we visited with their family members for awhile and will say extra prayers tonight. Although they are very strong and are an inspiration, transplant is just not easy. The tears may be for them.
The tears may be for relief. Maddie and Sam went up a whole flight of stairs today with little help. They are getting stronger each day and continue to stay healthy. Max did well during his tests and is just beautiful to watch.
The tears may just be about Christmas. Last year’s Christmas was very hard on us and our families. We went through the motions in a shell shocked state. This year, although we wish we were home and with our families, we are better prepared to enjoy every moment with the kids and truly celebrate the birth of Jesus. We can’t believe how much has changed in a year.
So here I sit. Maddie is eating Goldfish crackers. Max is grabbing her blanket form her. Sam is soaking in the tub. Jeff is entertaining Sam. Joanne is cleaning and taking care of all of us. I want to cry from relief and happiness. I want to cry for the Joiners and tell them it is all going to turn out o.k. I think I’ll hold the tears back for tonight and save them for four months from now. We’re going to play instead.
Love,
Jane (and Jeff)
Sunday, December 21, 2003 7:35 PM CST
Day 79
Dear Friends,
Top 5 most exciting things about today.
5. Maddie went and got platelets at clinic.
4. Jane went grocery shopping.
3. Jeff, Max, and Sam practiced going up stairs.
2. Max was in his jammies until noon.
1. Joanne and I wrapped some Christmas gifts.
Not too exciting, huh? Thank you, God.
Love,
Jane and Jeff
Saturday, December 20, 2003 7:11 PM CST
Day 78
Dear Friends,
It was a quiet day. No blood draws. No clinic. No therapies. No school. Just some walks, rides and movies. Jeff took the kids to the park. Kelly from Hunters Hope came over. Thanks Kelly. Thank you also to those of you who have sent Christmas cards. Thank you to those of you who helped on the addition today. And above all, thank you God for another day of good health.
Love,
Jane and Jeff
Friday, December 19, 2003 6:59 PM CST
Day 77
Dear Friends,
Today started with a blood draw from Sammy. Max, Jeff and I took the blood and dropped it off and then went for Max’s MRI. We had decided to try it without sedation because the sedation meds wipe him out for days. Well, he did it! He laid still enough to get the MRI pictures. The MRI staff was very nice and gave him a stuffed moose for being so good. We were very proud of him. When he came back to the apartment, he had OT and PT. Jeff included a picture of him curled up in a chair in the photo album. He was sitting like that by his choice. Seeing his legs curled up like that is wonderful. Go Max!
Maddie had the day off but Sam ended up going to clinic for platelets. They also called this evening and said his CSA level was a little high. Oh boy! We take more blood on Sunday and hope his level is down.
Loreeta, Grandma to the Joiner boys made us a pecan pie. Oh my my. It was very good. Texas Grandmas must really know their pie. Thanks Joiners.
I have to admit I am enjoying no snow. Every time I hear about the snow in Michigan, I am so glad we are not dealing with it. Jeff, I am sure, feels the opposite. We have had to wear winter coats and have even had to scrape car windows a few mornings, but it is so nice to go outside for walks and get the kids exercise.
Max’s new braces should be in next week. We look forward to getting them on him. The weekend should be slow and boring - just like we like them.
Love,
Jane and Jeff
Thursday, December 18, 2003 7:45 PM CST
Day 76
Dear Friends,
Another busy day. Max had to have a nerve conduction test this morning. He did so well. The first time he had one ( a year ago) he smiled and talked through the whole thing. The next two he had (April and July) he cried all through them. Today’s was quicker than the others and he never even complained. The doctor told him he was one tough kid. We then went to have Max’s hearing checked. He did well. Max also had school in the afternoon at the apartment.
Maddie needed to send labs in this morning. She ended up needing platelets so we took her in the afternoon. Her teacher came while she was in clinic and workedwith her. She is doing well and has learned many letters and their sounds.
Sam had a good day hanging out at the apartment. He has learned a lot this fall. He is writing his name now and asking about letters all the time. He took my stocking and wrote my name on paper. He couldn’t even really hold a pencil when we got here. ( I do have to admit it is very hard to write this journal though while he is asking me 1000 questions. Any one who has ever traveled or worked with Sammy knows he is the question man. Right Buddy?)
In the evening, we went to Raleigh and drove through a Christmas light display. It was two miles long and we had a nice time. They had a lot of clever displays.
Last week the apartment complex had an open house in the office. Joanne and Max went and visited. We received a call today, and Max won the door prize. They pulled his name out of the box today and he won a basket of gourmet treats. The kids were so excited. One of the things in the basket was a ‘champagne like’ bottle of apple juice. We’ll save that for the kids on New Year’s Eve. They have a lot to celebrate. Thank you, God.
Love,
Jane and Jeff
Wednesday, December 17, 2003 6:23 PM CST
Day 75
Dear Friends,
It was a busy day for us. Maddie’s cyclosporine (CSA) level was unusually high yesterday in the 400’s. That is the drug that Max had the toxicity that led to his seizure. His seizure was the cause of the code blue and a big decline in his abilities. We are very paranoid about the drug and level. At the right level, it is the best drug to prevent graft vs. host disease. At the wrong level it can cause a seizure and for MLD patients can cause decline. That ‘right level’ is different for each person and can vary from week to week. They check the level continuously. (That was CSA 101.) We took blood from Maddie again this morning to recheck the level. It came back in the upper 200’s, much better than yesterday. We felt instantly better. I hadn’t realized how much it had been weighing on me today. We got a call later that Dr. Kurtzberg wanted to lower both Sam and Maddie’s CSA dose just a little. We felt even better.
As much as we worried about Maddie’s CSA level, it is a small concern in the transplant world. We thank God that that is one of our biggest worries.
Max started his one year post transplant work up today. Jeff and I took him to an eye doctor this morning. We had taken Max to the same doctor in September. Everything looked good with his eyes. In September, his left vision field was weaker than his right. Today the left was as good as the right, and they were both pretty good. Go Max! He has worked hard in OT and it has paid off.
He also went and had an EEG. There were lots of wires stuck to his head and he laid as still as possible. After the EEG, he went to clinic and gave blood. Lots of blood. They will test his enzyme level, donor cell percentage, etc. After all the testing, we will meet with Dr. Kurtzberg and Sue, our nurse practitioner, and discuss all the results. Duke will also send the results to Minnesota.
Sam had a “lazy stay at home” day. I just switched him from one pair of jammies to a new pair. He loves his days off. Maddie got dressed, but still lounged around most of the day. They certainly deserve a day off.
Someone asked about Kippie in the guestbook. My sister Sally and her family have Kippie until we get home. They took her when we were in Minnesota and Kippie was very depressed when she got back ot our house. They take very good care of her. Taking the dog is a very generous gift.
Hope you all had a good day.
Love,
Jane and Jeff
Tuesday, December 16, 2003 6:28 PM CST
Day 74
Dear Friends,
Today was our long clinic day. We usually see Dr. Kurtzberg, but she is working the BMT floor for the next two weeks. Another of the great doctors here came and saw the kids. They are doing very well. We reduced their steroids and cut their GCSF ( a growth factor to promote white blood cell growth). We started talking about who the kids will go to when they go back to Michigan. It is great to here them talk about us going home. I’ll feel better when we find someone well versed in transplants and MLD to take care of the kids. Sam needed blood today and that took a while. They both had school. The teachers are wonderful and do such a good job teaching in chaos. Blood pressures are taken, blood is drawn, and we are in and out. I guess we all teach in chaos but it just seems different here. It was long, but it was a good clinic day.
Max had OT and school today. We started him on Vioxx last week. He has some knee and elbow pain. It seems to wipe him out though. We’re giving it time, but he hasn’t been real sparkly lately.
We hope you like the Christmas picture. My mom sent the PJ’s. She makes them Christmas pajamas each year. They had a good time taking the picture. Thanks Grandma.
It has been a long time since I mentioned how much I appreciate all of you stopping by to see how we are doing. The guestbook entries are great, but I also appreciate the silent readers and prayers. I get so emotional as I read our guestbook see how so many of us have come together. This past year has been remarkable. You have all carried us through it and have helped to save our kids’ lives. We thank you so much.
We visited with Janet Joiner and her two boys, Trevor and Ross at the playground in the apartment complex. It was good to see them. The boys look so good running around. Janet is very strong. We look forward to meeting Joe soon.
There is another family in Germany who is transplanting their two MLD sons, Dominic and Dennis. They are the Geissers and their story is unfortunately eerily like both ours and the Joiners. They have a symptomatic child and one who hasn’t shown any signs but has tested positive. They are also transplanting both children and can use many prayers. The parents’ names are Alex (mom) and Chris (dad). We met them a couple of months ago at Duke, but they had to return home. They have signed the guestbook and their website is www.caringbridge.org/wi/geissermld/ . For those of you interested, they would love to hear from you.
Max starts his one year post transplant work up tomorrow. One year. Thank you, God.
Love,
Jane and Jeff
Monday, December 15, 2003 7:19 PM CST
Day 73
Dear Friends,
Today both Maddie and Sam had to go to clinic and get some platelets. They had school while they were there. Maddie’s teachers are nice enough to include Sam in her lessons and he loves it. While we were there we were warned again about the flu. Three BMT kids have gotten it. We are so paranoid about it. We just finished our Christmas shopping and don’t plan on going anywhere. We actually may start to wear masks to the grocery store. We don’t want to bring anything home with us.
Max had PT, school and speech today. He did very well in PT. He was lifting each foot up to the bench and bringing it down over and over. He steadied himself with the walker. This is very tough and he worked hard.
That’s pretty much it. I know these journals are becoming short, but time goes so quickly. Hopefully one of these nights, I can write a more detailed entry. We thank God for how well the kids are doing and pray for good health.
Love,
Jane and Jeff
Sorry. I put the entry in moments ago and just had to come back and add to it. I just looked throught the Joiner guestbook and saw how many of you wrote into them. I have finally gotten to the point where I don't cry every time I read our guestbook. Seeing your names in theirs made me cry all over again. You have all taught me so much. Thanks.
Sunday, December 14, 2003 6:47 PM CST
Day 72
Dear Friends,
Today we drew labs from both Maddie and Sam this morning. Maddie had to go to clinic and get blood today. That takes a lot longer than platelets and we were there over 4 hours. Sam had the day off. They will probably both need platelets tomorrow.
Aunt Cindy and Uncle came over again today. They were supposed to fly out this evening, but due to snow in Albany they will be here until morning. It is a nice surprise and the kids are happy.
Overall it was a quiet weekend just like we like them. We are thankful for what we don’t have: fevers, rashes, pain, etc. Thank you God.
Love,
Jane and Jeff
For you guestbook readers,
We were able to meet the Joiners (The MLD family who wrote in) when they got here last week. Janet is strong and her boys look great. Janet left their Caringbridge site address in the guestbook and I thought you might like to check in on them.
www.caringbridge.org/tx/joinerboys
Saturday, December 13, 2003 7:13 PM CST
Day 71
Dear Friends,
We had a nice day with Uncle Carl and Aunt Cindy. No one was up in the apartment until 8:00. We didn’t have to draw blood this morning and didn’t have to go to clinic. Jeff went to Home Depot and looked at celing fans. Joanne and I went and did some Christmas shopping.
Cindy and Carl played with the kids most of the day. They had a good time. We took Max to the hotel they are staying at in the evening to go in the hot tub. He loves the hot water.
We were saddened this morning to hear that our friend Leo passed away. It is times like this that it is toughest to be far from home. Our hearts are in Stanton tonight.
Love,
Jane and Jeff
Friday, December 12, 2003 6:10 PM CST
Day 70
Dear Friends,
It was another good day. Maddie went to clinic to get platelets. Jeff took her. She had school while she was there. The buddies also came and played with her.
Max was really busy today. He had OT, PT, speech and school. He was a little perkier today but not quite himself yet. He is really tired tonight after all the hard work.
Sam played in the apartment. He just had fun. He even took a nap.
Now we are all waiting for Aunt Cindy (Jeff’s sister) and Uncle Carl. They are flying in from Albany and staying the weekend. The kids are excited to see them.
Aunt Sally ( my sister) requested new pictures in the photo album tonight. Jeff hopes you like them Sally. :)
Love,
Jane and Jeff
Thursday, December 11, 2003 8:05 PM CST
Day 69
Dear Friends,
We had a good day here in North Carolina. We started the day with our morning blood draw. We called the clinic later and Sam needed platelets and Maddie didn’t. I really thought they would both have to go today. It is the first time in a long time Maddie didn’t need them every other day. We will almost certainly going back with her tomorrow. Sam was great at clinic. He is such a big boy. His teacher came and he does such a good job with her. He has grown up a lot in the past year.
Maddie really enjoyed her time at the apartment and kept Joanne busy playing Crazy Eights and other games. She took two naps today, but she really perked up this afternoon.
Max had OT, speech and school today. He had a rough day and was not in the mood to work. I was a little worried that he was getting sick. He didn’t look very good. He said he felt fine. My mom reminded us that last time he got Botox he acted the same way 6 days later. There may be some connection. He looked better by evening but was still a little grouchy.
I had a meeting this afternoon with Dr. Kurtzberg to talk about a new drug for Max. It was so good to talk to her. We are ready to start his one year post transplant evaluations. We are going to meet again and talk about him on December 31st. I can’t put into words how happy I am that he is doing so well one year post transplant and am so hopeful of his future.
Jeff made it back to North Carolina. It was such a quick trip home for him. He was able to finalize many things on the new addition. He video taped it so the kids and I could see what has been done. It is going to be great for Max to have a bedroom downstairs. He will have a tub and shower that will make things easier for him. Most exciting is the flat flooring that will make it easier for him to walk. As much as I love all of this for him, I rejoice over the day when none of it is necessary. Brennan, our builder, has done a great job.
Tomorrow is 10 weeks post transplant for Maddie and Sam. Thank you God for all you’ve done for Maddie and Sam and for bringing us to Dr. Kurtzberg and Duke.
Love,
Jane and Jeff
Wednesday, December 10, 2003 6:40 PM CST
Day 68
Dear Friends,
Jeff made it safely to Stanton. We talked to him briefly and he thinks the addition looks wonderful. Joanne and I had a good day with the kids. It was a rainy dreary day here in North Carolina (as well as in Michigan). We watched a lot of movies and lounged around. Max had OT and PT this morning. I’m going to make it quick one tonight. Double med duty with Jeff gone.
Love,
Jane
Tuesday, December 9, 2003 7:07 PM CST
Day 67
Dear Friends,
It is Tuesday which in North Carolina means long clinic day. It actually wasn’t as long as we thought it would be. Both kids got IVIG in their lines and then Maddie got platelets. The labs looked good and we are very blessed. We started talking about going home with the doctor and the nurse practitioner. We are hoping to leave around day 100. (January 11) The platelet issue needs to resolve itself first. Once the kids no longer need to be infused with blood products and no new problems occur, we will be ready to go home. That is a great thought and a scary one. We also had to have an eye test as part of a drug study here. that took a couple of hours. No clinic tomorrow.
Max had PT, OT and school today. He and Joanne did a little Christmas shopping. He went for three walks/rolls. It was another beautiful day.
Jeff is going to make a quick trip home tomorrow. He is flying out in the morning. He’ll spend the afternoon and evening checking on the addition to our house and making final decisions. He’s flying back on Thursday morning. I can’t wait to hear from him what the new addition is like.
A day full of reminders of how well Maddie and Sam are doing. Thank you, God.
Love,
Jane and Jeff
Monday, December 8, 2003 6:49 PM CST
Day 66
Dear Friends,
We had a beautiful day here in Durham. It was sunny and in the 50’s. Maddie had the day off of clinic. She was pretty laid back today and took a couple of naps. Sam did have to go to clinic. He needed platelets and wasn’t gone long. Max had PT this morning. His therapist, Barbara, has been gone for two weeks and he was glad to have her back. They did a lot of work standing and sitting on his new therapy bench.
Max and I went to see Haunted Mansion in the afternoon. We were the only two people in the theater. It was great. We had a great time. Max said the movie was “sweet”.
Other than that, our day was pretty quiet. We took a few walks outside around the apartment complex. Maddie and Sam are getting a little stronger each week. They are still pretty whipped. Maddie is much quieter than her usual self. We know from our experience with Max that recovery is long.
Thank you for your continuous support. We don’t thank you enough. The guestbook entries inspire us and give us constant reminders that we are not alone.
Love,
Jane and Jeff
Sunday, December 7, 2003 7:00 PM CST
Day 65
Dear Friends,
Today was a nice day. We took blood from both Maddie and Sam’s lines this morning. Sam’s labs looked good but Maddie needed to go to clinic for platelets. That was predictable. She needs them about every other day. Maddie’s white blood cell count is 19.8 and Sam’s is 21.9. Most likely they will soon be getting less GCSF, an infusion drug to promote white blood cell growth.
Maddie took a couple of small naps today. Sam didn’t nap at all. Max had a lazy day. Tomorrow he’ll be back to work.
For you guestbook readers, Janet, the MLD mom who wrote in arrived in Durham tonight with her two sons and her mother. She is very strong and her boys look wonderful. They are staying in our apartment complex. We delivered their Kick MLD in the Butt shirts to them. Please keep the prayers going for the Joiner family.
Tonight, Joanne and I piled the kids in their jammies to look at Christmas decorations at an adjacent neighborhood. They had luminary bags lining the streets and it was beautiful. We also put up our Christmas tree and decorated it. Thank you so much church friends. It was so nice to read the names on the ornaments. We left them on so next year we can read them again, and the next, ... Anyway, we are really getting into the Christmas spirit. I can honestly say, Christmas has never had more meaning for me before. Thank you, God.
My mom sent us the message pasted below to share in the journal. As you can imagine, MLD has had a profound impact on many family member, especially the grandparents. I am so proud of my mom for having such a positive outlook and giving God all the credit.
Love,
Jane and Jeff
Dear Friends,
I have asked Jane and Jeff for permission to use the journal page to share some of my feelings with you. I was driving to Saginaw this past Thursday and started reflecting on this past year as 2003 is coming to a close. As I thought about it, I realized that I have been a part of a three act play. GOD has been the Director and the rest of us have had major or minor roles. None of us would have auditioned for a part in this play. GOD has chosen us and directed us as we have gone through each day. The three acts are as follows:
ACT ONE: THE TRAGEDY
ACT TWO: THE TREATMENT
ACT THREE: THE TRIUMPH
Let me begin.
ACT ONE: THE TRAGEDY
Act One opened as 2003 found our daughter and her family in Minnesota searching for treatment for Max, who had recently been diagnosed with MLD. We knew, as well, that Maddie and Sam were also MLD children. GOD had directed us to Dr. Krivit at Fairview Children's Hospital. It was a difficult time for everyone. We were feeling so much pain for Max and were still searching for answers. The cast of characters were the hospital staff and the wonderful people who were at the Ronald McDonald House where the family stayed. The Ronald McDonald House is a wonderful place for families who are dealing with difficult health issues with their children. There was a fully stocked cupboard for parents to use to cook their own meals and, each night a group came in and cooked dinner for all the families. Many lasting friendships were formed there. Act One had a huge cast of wonderful people in it. Jane and Jeff were both able to be there together because so many people had donated money to help the family. Once the family returned to Stanton in March, a research group was formed to see what help was out there for Max, Maddie and Sam. This group was called Team Trimper. Fourteen family members and friends gathered once a month to discuss what they had learned. We researched what was being done in Italy, Japan, England, Germany, Spain, Canada, and the United States. We studied myelin repair, breaking down the blood-brain barrier, NORD (National Organization for Rare Disorders), and how we could get our story told in the news media so that someone out there would see it and know something that would help us. All the time GOD, Our Director, was leading us toward the answer.
ACT TWO: THE TREATMENT
One of our Team Trimper members, a high school friend of mine, knew of a man who was doing medical research in St. Louis, Missouri. She contacted him and he lead her to Dr. Kurtzberg at Duke University Hospital. She relayed the information on to Jane and Jeff. They went to visit Dr.Kurtzberg in July and she gave them hope for their children's future. Our daughter, Joanne, volunteered to take a semester off of teaching to go to North Carolina to be Max's caregiver. The cast members had changed. Now we have another group of health professionals who are so caring and loving. We have Ellie, Kathy, Amy, Barbara and Beverly who are working with Max to help repair the skills he has lost. We are told to work hard for two years after a stem cell transplant. Maddie and Sam begin the chemotherapy so that the new cord blood stem cells will be accepted. The worry begins.The nurses on the Bone Marrow Transplant Floor are our angels. They cannot be thanked enough for the work that they do. The new cells arrive on October 6. We throw a big party in the room as the cells are introduced into their bodies. Pastor Jamie is there to celebrate and pray with us. The cells are engrafted and Maddie and Sam are released from the hospital and wait until day 100 so that they can return to Michigan. Once again, Jane and Jeff could be together in North Carolina because of the cast of thousands who have given money to help support them during this time.
ACT THREE: THE TRIUMPH
As I have said, GOD has been directing the play. HE has lead us to find the best treatment for MLD. HE has blessed us with wonderful people who care about us. Although some of us have had major and minor roles, the most important people have been THE AUDIENCE. YOU have supported us with your love and prayers. I kept asking myself, "Would I care this much if it was someone else's grandchildren?" YOU have sent notes and cards. YOU have called to see how we are doing. YOU have read the journal faithfully. YOU have asked for prayers for the Trimper Children in small rural churches, large city churches and missions around the world. I know it has been the prayers that have been the "glue" that has held us together. It is why we know that the final words of this play will be .... AND THEY LIVED HAPPILY EVER AFTER.
I thank you for your love, Claudia (Gramma Strawberry)
Saturday, December 6, 2003 7:09 PM CST
Day 64
Dear Friends,
A free day. It was nice to wake up, stay in jammies, drink coffee and not have to run blood to the lab. It was an overall lazy day. The kids stayed at the apartment all day. We took a walk for exercise with Sam, Max and Maddie. We took Max to the pool to walk a lap around it. He did well.
We are planning on taking blood tomorrow. Maddie will most likely need platelets and have to go to clinic. We have an artificial tree to set up. We’ll do that tomorrow too.
Hope you are all having a good weekend.
Love,
Jane and Jeff
Friday, December 5, 2003 6:24 PM CST
Day 63
Dear Friends,
A very busy day for the Trimpers. We started our day taking Max for more Botox in his left leg. Joanne stayed with Maddie and Sam while we took him to the doctor. Have we told you lately how thankful we are for her? The doctor ended up putting Botox in three muscles in his left leg and one in his right. We hope they will continue to help him. It was more painful this time, but he handled it very well.
After we got him back to the apartment, we took Maddie and Sam to clinic. Grandma Strawberry sent them scrubs that she had made. They were adorable and the kids wore them to clinic. Grandma even put a pad of paper and a pen in the pocket. They had ID’s that they were given when they were admitted to the hospital. The only problem with the outfits was they looked so much a like. The nurses at clinic had to look twice. Thanks Grandma. They LOVED them.
The kids look good and their labs are right on target. They both received platelets and do not have to go back tomorrow. We’ll send blood on Sunday and see if they need anything.
While we were at clinic, Joanne took Max for a haircut. Have we told you lately how thankful we are for her? He looks beautiful. Then Joanne got him back for OT. Have we told you lately how thankful we are for her? We had a visit from some of my parent’s friends, the Foxes. They came while we were at clinic, but Joanne and Max were able to meet them. Thank you, Carolyn and Charlie for the ornaments. They are so cute.
We are now watching Finding Nemo (for the 10th time) and eating popcorn. It was a good day. We continue to thank God for how well our kids are doing.
Love,
Jane and Jeff
Thursday, December 4, 2003 6:43 PM CST
Day 62
Dear Friends,
We had a day off of clinic!!!! It was very nice. Maddie’s platelet count was good. Tomorrow both Sam and Maddie are scheduled to go. We enjoyed the day off but it went quickly.
Max had OT, PT, speech and school today. The tech team came back and set Max up with a joystick to use in place of the mouse. He did pretty well with it. He used one once in August and it was good to see how much easier it was for him now. Go Max!
We all went to the toy store today. It was dreary, rainy and very cold. The store became crowded towards the end so we cut our visit short. Sam bought a horse and barn and Max bought a grabber (It’s hard to explain.). Maddie didn’t find anything and was very quiet. When we got home, she threw up. We aren’t sure if it was from the new med she was put on or the pudding she had right before we left. The pudding had milk in it and she wasn’t supposed to have milk. I didn’t even think about it. At any rate, she felt much better afterwards. She ate dinner and even had popcorn with a movie.
Overall, a good day. We received a great package from some church friends full of Christmas things. Thank you so much. We are going to be here for Christmas and intend to make the most of it.
Love,
Jane and Jeff
Wednesday, December 3, 2003 5:29 PM CST
Day 61
Dear Friends,
Another busy day in Durham. We took a sample of Maddie’s blood this morning and checked her platelet level. She needed them, as was suspected. We went to clinic in the afternoon and she had school and received a bag of platelets. Hopefully tomorrow she won’t need them.
Max had OT, PT and school today. Jeff walked with the therapist and Max two times around the pool and was very impressed with Max. The therapist even commented that he did his best job yet on walking. He had to go and give blood at clinic in the afternoon too.
Sam had the day off and enjoyed every minute. He even went to the pool and watched Max walk.
I have never been fond of the word ‘flu’, but right now it absolutely frightens me. It is very scary to think of these kids getting sick right now. Our hands are getting raw from the constant washing. I can understand how people become obsessive/compulsive about it. Germs seem to be everywhere. Meanwhile, the kids are so anxious to actually go somewhere. It is a constant balance between the possible and the dangerous. Dr. Kurtzberg did ok a trip to a small toy store owned by a one time nurse. We may try to check that out tomorrow. There will be a lot of Purell involved.
Hope all is well with you. We had another successful day. Thank you, God.
Go MSU basketball team! Go Duke medical team! Big game tonight!
Love,
Jane and Jeff
Tuesday, December 2, 2003 6:16 PM CST
Day 60
Dear Friends,
It was a long day at clinic for us. Both Maddie and Sam received IVIG - an IV drug, and a breathing treatment that they get once a month to prevent pneumonia. Sam had to get platelets too. We talked with Dr. Kurtzberg and Sue, our nurse practitioner. We changed some drugs from IV to oral. Their only infusion drug lasts 30 minutes. That will free us up a bit in the mornings and evenings. Sam has two days off of clinic. Maddie may have to go in tomorrow and get platelets. We’ll have to see what her morning blood work shows. She will have either tomorrow or Thursday off. Max actually goes to clinic tomorrow to give his monthly blood draws. All in all, the kids are doing very well.
Max had a tech team come and set up his new computer gear. We are very excited about the new tools he has to use. They are perfect for him and will help him learn and type. He also had OT and PT. He is a busy boy. He and Joanne headed out to the movies after he was done with all his work. They saw Cat in the Hat and Max said it was very funny.
We are tired but thank God for giving us another good day.
Love,
Jane and Jeff
Monday, December 1, 2003 6:25 PM CST
Day 59
Dear Friends,
DECEMBER 1!!! WOW!!!
Another beautiful day in North Carolina! Sunny and in the 70’s. Too bad Jane and Sam spent the whole day in clinic. Sam ended up needing blood today. They didn’t get home until after 6 pm. Maddie and I came home and took a nice long walk in the sun. Max had OT, speech and school today. It sounds like he worked hard as usual. It’s days like this where you wonder where the time went. One day seems to run into the next. There is no Monday, back to work feeling, or the excitement of a Friday and a weekend. So, I’m not exactly sure what we did today (or yesterday...).
Dr. kurtzberg will be in clinic tomorrow. We have not seen her since both kids were in the hospital. She has been on vacation (good for her). Tuesdays will be our “long” day in clinic, but it will be worth it to talk to her. We have so many questions for her and can’t wait to see her.
It was a long day and we’re all tired. I hope it’s an early night so we all can get some rest. So, until next time, it was good talking to you all.
Jeff
Sunday, November 30, 2003 6:13 PM CST
Day 58
Dear Friends,
We had a very quick day at clinic today. Maddie and Sam’s labs looked good and they didn’t need platelets or blood. We were out within an hour.
It was a beautiful day here and everyone went out for a quick walk. Joanne and I took Max out and had him walk about 200 yards. It was awesome! His right leg is taking perfect steps. His left is crossing over. We are hoping that with more Botox in his left leg on Friday, it will help. We are also waiting for his new braces. Those will help a lot too.
We talked with Marcia, Don and Cindy. They had a great time at the Hunter’s Hope gala. They even saw Dave and Lindy from Bethany’s Hope in Canada. It sounded like a beautiful night. We hope to make it ourselves next year.
That’s about it. A quiet Sunday. Thank you, God. We can’t believe it is already December tomorrow.
Love,
Jane and Jeff
Saturday, November 29, 2003 5:50 PM CST
Day 57
Dear Friends,
Another day at clinic for us. Maddie’s WBC count was 8.1 and Sam’s was 10.1. Sounds good to us. The nurse practitioner told us they looked good and their labs were great. They both needed platelets though. Since we started keeping the platelets high, Maddie hasn’t ahd a bloody nose. Joanne and I took the kids this morning.
Jeff took Mark to the airport bright and early. Thanks for coming Mark. The kids had a great time. Then he hung out with Max. They made a trip to KMart and came home with the game Kerplunk. Remember the game with all the little sticks with the marbles on top?? This is a fancier revved up version with sound. It is a good game for Max to practice OT. We had fun with it today.
Remember how we were wearing shorts this past week? Well, today I had to run to TJ Maxx and Marshall’s and buy winter coats for the kids. It was chilly. It was a beautiful day with blue skies though.
Grocery shopping, walks, and pizza for dinner. Just a normal day. Thank you, God.
Love,
Jane and Jeff
Friday, November 28, 2003 4:57 PM CST
Day 56
Dear Friends,
Another day at clinic for us. Maddie’s WBC is 7.5 and Sam’s is 8.4. The cells are on the move. All their labs looked good and Maddie needed platelets. They are keeping her parameters pretty high to avoid the nose bleeds. Sounds good to us. Their appetites are still going strong. Their cheeks look ready to blow and their bellies are putting all their elastic to the test. Steroids! I am so glad they wean them each week. They are pretty tired too. They both had a good nap here at the apartment and Sam fell asleep at clinic for a while.
Max had speech and OT today. He is at the hotel in the hot tub right now. He loves the heat. He is really getting a kick out of Maddie and Sam. His appetite has increased too. I think it is because he is always watching MAddie and Sam eat.
Hunter’s Hope is having their big gala in Buffalo tonight. Jeff’s sister Cindy, her husband Carl, Marcia and Don are all attending. We wish we could be their. We really respect what they are doing for the leukodystrophies and their focus on myelin repair. Have fun guys.
Mark has to leave tomorrow. We hate to see him go. He has taken over the job of blood runner and has played and played with the kids. Thanks Mark.
I forgot to mention that Bob, my dad, made it home on Wednesday in time for Thanksgiving. He was a a lot of help. Thanks Dad.
Good day. Healthy day. Thank you, God.
Love,
Jane and Jeff
Thursday, November 27, 2003 5:18 PM CST
Day 55
Dear Friends,
Happy Thanksgiving. It was a good day here in Durham. Max had OT in the morning. Maddie and Sam had a short day at clinic. Sam needed platelets and Maddie didn’t need anything. Maddie’s white blood cell count was 6.6 and Sam’s was 7.1. Everything looked good.
When we got back from clinic Maddie had an hour nap and Joanne and I went to get the food. It was a good dinner. We had plenty to eat. After dinner, Sam had a two hour nap, Joanne had a half hour nap, Jeff had a half hour nap, Jane had a 20 minute nap, Mark had an hour and a half nap, Maddie went back for an hour and a half nap and Max stayed wide awake. It was a pleasurable lazy afternoon.
We hope you all had a great day.
Love,
Jane and Jeff
Wednesday, November 26, 2003 6:25 PM CST
Day 54
Dear Friends,
Maddie’s food list for the day: bagel with cream cheese, cheerios and milk, 2 mini hamburgers, 2 chicken tenders, tortilla chips, mini sugar free candy bar, spaghetti with meatballs, corn, 2 rolls, 2 plates of Doritos, sugar free jello, popcorn, and still going strong. She actually just said, “I’m hungry” while I was typing. These steroids are amazing.
We went to clinic this morning hoping for a short day, but Maddie and I ended up having a long day. She needed both platelets and blood. It works out well, because she shouldn’t need blood tomorrow. That gives us a short day for Thanksgiving. Sam didn’t need anything except to be checked over by the nurse practitioner. They both looked good and labs were great.
Maddie and Sam are very spoiled right now. They are getting used to doing things for themselves now that they are not attached to an IV pole. Last night Maddie actually called me into the bedroom because she had crumbs on her chest. We have a long way to go.
Max had OT and PT today. He won’t have school for the rest of the week. He went grocery shopping with Joanne and Mark.
Tomorrow we have dinner ordered from Boston Market. We have much to be thankful for. God has given us a huge task but is carrying us through it. Of course we will miss Michigan and family, but we are going to enjoy the 70 degree weather and count our blessings.
Have a wonderful Thanksgiving. Hug your family tight - especially the children.
Love,
Jane and Jeff
Tuesday, November 25, 2003 6:29 PM CST
Day 53
Dear Friends,
It was a big day of clinic for Maddie and Sam today. Tuesday will be a lengthy one each week because it is the day they see Dr. Kurtzberg. She was actually on vacation this week so we didn’t see her, but it was a busy place. Both kids received an IV med called IVIG. Maddie needed platelets. While we were there she had two massive nose bleeds. They checked her platelet counts after her dose and decided to give her another half bag. Hopefully, she won’t have any more nose bleeds for a while. Maddie ended up in clinic for seven hours. She and I were both very tired.
Max had a very busy day. He had PT, OT, and school. Then Grandpa took him to the Looney Tunes movie. Then they went to the hotel and Max was able to soak in the hot tub. He had a good time and loves the hot water. He is very tired tonight and ready for bed.
We think Grandpa is going to go home soon. We will miss him and will have to find a new blood runner. He has been a lot of help.
Love,
Jane and Jeff
Monday, November 24, 2003 5:49 PM CST
Day 52
Dear Friends,
Sam is out of the hospital. Yeah! He was able to leave at noon. It is so good to have us all under one roof. Sam is very happy to be at the apartment and hasn’t stopped smiling. They threw confetti as he paraded off the floor. There is a nice picture in the photos of Sam with Ingrid, his primary nurse, and Jennifer, his ‘girlfriend’ who came in on her day off to say good-bye to him. They are so special on 5200.
Maddie had a long clinic visit today. She was there for 5 hours and received blood. Her sugar was still a bit high, but things look good. She took a nap for a while and ate lunch. Her teacher came and did school with her too. I have to tell you that MAddie on steroids is a hoot. She is eating us out of house and home. Her appetite is amazing. I’ll try to compile a list for you tomorrow.
Max had PT, speech and school today. He walked again 200 feet one way and 200 feet back with out tears and much help. Go Max! He and Joanne had a trail set up for Sam to the decorated apartment door. He also went swimming today at the hotel where Grandpa and Mark are staying.
Grandpa ran the blood this morning and helped at the hospital as we got everything ready for Sam’s discharge. Uncle Mark went to clinic with us and helped watch Maddie while I ran back and forth between the clinic and hospital. We could never have done this without all the help we have received from family. They have been remarkable.
As Thanksgiving approaches, we have much to be thankful for. Thank you, God.
Love,
Jane and Jeff
Sunday, November 23, 2003 5:45 PM CST
Day 51
Dear Friends,
Maddie: WBC 4.1 ANC Not sure but high
Sam: WBC 3.1 ANC 1400
Both kids are doing well and Sam should be home tomorrow. Hopefully we won’t have any surprises and he can leave around noon. You never know when a fever will pop up. He was able to come back to the apartment for four hours again today. He was so cute and had so much fun. He is still very weak and walking up a few steps is very hard for him.
Maddie had clinic today and it could not have gone better. She didn’t need platelets or blood. Her sugar level was good and the labs looked great. The whole visit took only 50 minutes. When we got back to the apartment, she took a two hour nap. She too is weak and has some trouble even stepping up on the curb. They need a lot of exercise.
Max had fun hanging out at the apartment, visiting Sam and going for walks/rolls.
Overall, it was a boring day. Thank you, God.
Love,
Jane and Jeff
Saturday, November 22, 2003 5:13 PM CST
Day 50
Dear Friends,
We are halfway post transplant before we can go home to Michigan! Yeah! Both Maddie and Sam are doing very well. I don’t have white blood cell counts or ANC’s. I’ll try very hard to post them tomorrow. Maddie was 3.something with WBC and Sam was 2. something. Sam spent the morning at the hospital and was able to come home for four hours in the afternoon. It was so good to see him and so hard ot send him back. Maddie, after receiving her infusion meds this morning, spent four hours at clinic. She needed platelets and stayed longer so she could get her sugar level checked again. It is still out of whack due to the steroids. We are going to watch it closely. She fell asleep for a while in the clinic (she gets Benadryl before platelets). She was pretty tired most of the day. Both Maddie and Sam need conditioning. They are weak.
Max had a relaxing day at the apartment. He went and visited with Sam at the hospital. He also did a little grocery shopping with Joanne.
Uncle Mark arrived this evening. It was good to see him and the kids were very happy. I think they needed a new face.
Grandpa is keeping busy. He is my blood runner in the morning. I draw Maddie’s labs and he runs it to the drop off at 7:00 am. What a guy!
Joanne is mega busy with Max. With Maddie coming home, most of my attention is with her and meds. Joanne has really taken such good care of him.
Go Blue!
Jane and Jeff
Friday, November 21, 2003 6:18 PM CST
Day 49
Dear Friends,
I am not sure about the white blood cell counts and ANC’s today. It all looks good and Sam’s is as good as Maddie’s. It was a tough day though. Having three kids going three separate ways keeps us very busy. Maddie needed to get all her meds at home, which includes 2 two hour infusions, 2 one hour infusions, and 5 morning oral meds and 3 oral night time meds. She then went to clinic and received platelets. We had a little excitement last night when she had a bloody nose. She had another in clinic today. Hopefully the platelets will help this. They are planning on giving her them each day for a while. Sam meanwhile is still in the hospital until at least Monday. This really bothered us. We were hoping he would be going home this weekend. He did get a four hour pass today. I was sitting at the apartment feeling bad that I had only seen him for a few minutes today and in he walked. Jeff had brought him home for a visit. Sam had his mask on and you could just tell his eyes were smiling. It was great to have him here for even a couple of hours. It did me a lot of good.
After that paragraph, I am so so happy to announce that we found out about donor cells today. Sam is 93 onor cells and Maddie is greater than 99 onor cells. We are very happy about this. It means both transplants are successful at this time. Thank you God. We continue to take one day at a time.
Max spent his day with therapies at the apartment. In the midst of all this maneuvering and planning, we also had an IEP for Max with Durham schools. They are putting together a plan, which includes goals that we can bring back to Stanton.
Max’s big exciting news is that he walked up 18 stairs with help and down 18 stairs with help during physical therapy (no tears). This is very hard and we are incredibly proud of him.
We watched the third segment from WOOD today on the computer. I thought it was so well done and I was glad they focused on the positive side. I loved Jeff’s end quote about life still being good. We are very grateful to WOOD TV 8 for the nice job. We are so pleased we were able to get to know Dray and Andy a little bit. They portrayed our children so well.
It was a beautiful day in Durham. We were back in shorts. Joanne and Max even saw two people laying out by the pool today. We are very thankful tonight and REALLY look forward to Sammy coming home.
WOOD TV 8 is airing our family segments Saturday and Sunday at 6 pm.
Love,
Jane and Jeff
I think I forgot to mention that my mom, Grandma Strawberry left this week to head back to Michigan. Thanks Mom for all the help. Uncle Mark arrives tomorrow. It will be fun to see him.
Thursday, November 20, 2003 6:28 PM CST
Day 48
Dear Friends,
Maddie: WBC 2.4 ANC 1606
Sam: WBC 2.6 ANC 1080
Sam passed his big sis in the white blood cell count. He also had his second day above 500 with his ANC. Great news. Maddie was able to leave the hospital today. She was very happy to leave. She almost had to wait until tomorrow because her sugar level was a little on the high side. They decided she could go though. Yeah! The nurses here gather people around and throw confetti or blow bubbles at the kids when they leave. It was nice and Maddie really enjoyed it. Sam handled her leaving very well. He knows he will get his chance soon. Hopefully they will discharge him in the next couple of days. On the ride home, Maddie just chatted away. It was amazing how fast she perked up after leaving the hospital. When Maddie and I got back to the apartment, Joanne and Max had left paper footprints making a trail to the apartment door. Each print had a word on it that spelled out a big long message. On the door were decorations, toys, signs, and even microwave popcorn. We are so happy to have her back at the apartment, but it is so hard to be away from Sam.
Max and Jeff had to go to the adaptive technology meeting this morning. They came home with a keyboard and should be getting other things. I haven’t heard too much about it yet.
The discharge nurse came over tonight and helped get everything set up for Maddie. It is a lot of information. She has four different meds that she needs to get on four different pumps. She also has all her oral meds. It is amazing how much we pump into their bodies – all of it working together to help the new cells enter her system.
We were able to watch segment two from WOOD. It was nice to see Dr. Kurtzberg on tv talking about the transplant. We look forward to tonight’s.
Nurse Emily, if you are reading this, I am so bummed I didn't hug you in the midst of the discharge chaos. I never said a proper good bye. You are a wonderful nurse and person.
Love,
Jane and Jeff
Wednesday, November 19, 2003 5:52 PM CST
Day 47
Dear Friends,
Maddie: WBC 2.4 ANC 1704
Sam: WBC 1.6 ANC 896!!!
Sam finally broke 500 on his ANC, and he did it in a big way. Maddie wasn’t discharged due to her sugar. We are hoping for tomorrow. If Sam can keep his counts up for a few days, he’ll be coming back to the apartment soon too.
Max had a busy day with PT, OT and school. He came for a visit at the hospital with Joanne in the evening. It was rainy and dreary here so he didn’t get outside much. Tomorrow we are taking Max to a adaptive technology facility and the school here has put a team together to see if there is anything that we can do to help him with schoolwork. We look forward to seeing what is available.
We were able to watch the WOOD TV 8 segment on the computer today. We thought it was well done. I can’t figure out how living it is easier than watching someone tell about it on TV. I sometimes forget they are talking about us. We look forward to tonight’s segment. If you do not live in the Grand Rapids area, you can go to www.woodtv.com and view it if you have the right plug in. They have videos and ours is called Fight For Life.
We have mentioned many times how hard it is to see all these kids struggling. Here in North Carolina we lost one of the kids on the floor this morning. I can’t even put into words how hard it is. Our sympathy and empathy for the family goes without saying. It is the guilt that we carry that is surprising. When your child is doing so well and others are struggling, you feel guilty. We are very blessed and thank God for every good day. We pray for the families who have lost their child, ones we have known for a long time and the ones we have met in the past year.
Love,
Jane and Jeff
Tuesday, November 18, 2003 5:38 PM CST
Day 46
Dear Friends,
Maddie: WBC 2.7 ANC 1458
Sam: WBC 1.3 ANC 404
Looking good. We can’t complain. The kids feel good and look good. They have their grouchy moments. Steroids aren’t fun. They told us that Maddie will probably go home tomorrow, but her sugar level is up and that could delay us while we learn how to manage that. It is a temporary situation that is caused by steroids, but she still needs insulin. Sam won’t be able to leave until his ANC is over 500 for three consecutive days and they have him on oral cyclosporine (CSA). He has to be able to take it orally because of his self performed line removal from earlier this month.
Max had a very busy schedule today. He had OT, PT, speech and school. He walked with help across the road and back with his PT with no tears or complaints. Go Max! He came to the hospital later in the day for a visit.
Let us know how the segment is tonight on WOOD TV 8. We wish we could see it. We think they are going to have a link to each part on their web site so you can watch it over and over and over...
www.woodtv.com
Love,
Jane and Jeff
Monday, November 17, 2003 8:31 PM CST
Day 45
Dear Friends,
Late update. Sorry. Maddie: WBC 1.6 ANC 960. Sam: WBC 1.1!!!!! ANC 341. A great day for white blood cells. We are hoping for even better tomorrow but know they can go down a little too. Overall, the kids are doing very well and we thank God.
Today was a big day for us. I’ll go about this in chronological order. First we found out about the white blood cells. Then Maddie was able to leave the floor for a while. Jeff took her outside of the hospital. She hasn’t been outside for 55 days. She loved it. She is ready to get back to the apartment.
Later in the day, Jeff and I went out for dinner. When we got back to the hospital Jan Russell, from Stanton Michigan was here! THE Jan Russell. We had no idea she was coming to North Carolina and I can’t tell you how good it was to see her. She is here for a training. We wish she could stay longer - like until January.
Then, later in the evening I had a phone call from the mom who just found out her seven year old has MLD. Some of you may have read her entries in our guestbook. It was so good to talk to her. I only pray that I could provide for her the hope that I believe is out there. It wasn’t long ago when we were there in her shoes trying to understand this new disease.
We are thinking of and praying for the Klooster family. We really wish we could be there tonight and tomorrow.
Our first segment is on tomorrow on WOOD TV 8 at 11:00 pm. We wish we could see it. Dray and Andy who who were instrumental in putting it together were such nice people and very good at their jobs. We know they will do good work.
Love,
Jane and Jeff
Sunday, November 16, 2003 5:45 PM CST
Day 44
Dear Friends,
Maddie: WBC 2.1 ANC high no problem
Sam: .8 ANC 16 too low
Dear Friends,
Bad news, good news. I’m going to give an overview of WBC 101. Sam’s WBC is low. However he has many, many monocytes, new white blood cells that will be the future neutrophils, which are measured to determine the ANC. Got it? For those of us not into fancy shmancy words, that reads that the ANC is coming. We just have to wait.
Both Maddie and Sam also gave blood on Friday to test for donor cells. These results will be back at the end of the week. We are hoping by Friday we will know about both kids. Please pray for donor cells.
The kids continue to feel well. Maddie will probably go home the middle of the week. We are playing lots of games and Maddie and Sam usually have movie time together each day.
Max has had two lazy days. He has loved them. He came to the hospital each day and took some walks/rolls around the apartment complex. It was beautiful here today in the lower 70’s.
It was a salon day on the BMT floor. A very kind stylist came and colored and cut anyone’s hair who wanted it. Joanne and I each got a haircut. It was very nice and needed in my case. My bangs were blinding me.
Grandma and Grandpa went to church at Duke chapel again. It was great. We will all have to go sometime.
Hopefully tomorrow Sam will be bursting with white blood cells.
Love,
Jane and Jeff
Our three segments will be shown on November 18, 19 and 20th at 11:00 on WOOD TV 8.
Saturday, November 15, 2003 5:15 PM CST
Day 43
Dear Friends,
Maddie WBC 1.8 ANC 884
Sam: WBC .8 ANC 144
Dear Friends,
Why do we choose to worry? This morning was filled with worries again. Worries about Sam’s ANC and then worries because Joanne called to tell us that Max had a rash on his arm. The rash on the arm put me a little over the edge. Everything turned out fine. We brought Max to the hospital. They weren’t concerned. They told us to put some Hydrocortisone cream on it and keep an eye on it. Dr. Martin, who is working the floor, came on rounds and is very happy with how both kids are doing. He said they are both on the discharge board. Maddie for this week and Sam for next. Sounds good to us.
We are almost to the half way point past transplant. We thank God how well they are doing.
Love,
Jane and Jeff
PS We are all officially in pants. It hasn’t snowed but it is pretty cold. Jeff and Joanne held out the longest. Max probably would have but his mother made him dress warmer. Poor guy.
Friday, November 14, 2003 6:19 PM CST
Day 42
Dear Friends,
Maddie: WBC 1.3 ANC 700
Sam: WBC .8 ANC 304
Well, well, well. Sam made quite the jump in both his white blood cell count and his ANC. It is interesting how fast worries can start disappearing. We will feel even better if it stays close to the same or even better tomorrow morning. Both kids had a rough night of sleeping last night and were napping by 10:30 this morning. The rest of the day was full of games. They had art time in the lounge and Maddie and Sam made turkeys. They were really cute. I always forget to mention it, but Maddie and Sam have school every week day too. Their teachers are very nice and do great things with them. Sam’s teacher calls him a sponge and Maddie’s are impressed with how well she is doing with letter recognition and sounds. I’m so glad they have teachers here to teach them because it is far off in my mind.
It was so nice to be home last night and be able to be at the apartment when Max woke up. He is so beautiful in the mornings. He has such a sweet smile when he wakes up and his hair is all messed up. He had school, OT and PT today. His teacher and therapists keep complimenting him on how well he is doing and telling him how much he is improving. Go Max!
I wanted to write again about the nurses at Duke. Yesterday two of the nurses sat and played Candyland and Crazy Eights with Sam for an hour. They are so sweet to our kids. Emily, Maddie’s primary. stayed for an hour after work one night and played cards with her. She came in today on her day off and stayed for two and a half hours playing. Sam’s nurse and new girlfriend, Jennifer played too. They are extraordinary. Our care has been exceptional. It amazes me that they can care so much and handle all the pain that comes with that. It’s a tough job.
Jeff and I are at the hospital tonight. Max is at the apartment with Joanne, Grandma and Grandpa. They are going to get pizza tonight.
We continue to thank God for how well the kids are doing.
Love,
Jane and Jeff
PS As you can tell by the pictures, Sam and Maddie's cheeks look like they are going to pop thanks to steroids. They look so cute but pretty different. As you can tell from Max, that goes away. I can hardly remember when he was like that.
Thursday, November 13, 2003 6:48 PM CST
Day 41
Dear Friends,
Maddie: WBC 1.2
Sam: WBC .7
Sam went up a little bit. It was a day of worry though. The doctors originally told us that they don’t worry about engraftment until day 42. Well here we are at day 41 and Sammy’s ANC is about 28. It needs to be at 500 to be considered engraftment. Four doctors reassured us today that they are not worried. Sam is heading in the right direction. We then worried that the doctors may not tell us the truth so we don’t worry. One of the doctors at the end of the day, the poor dear, assured us that yes she would tell us if she was worried. As you can probably guess, we may be driving them crazy. The thing that probably eased our minds more than anything was word from Dr. Kurtzberg not to worry. They are doing tests on both kids tomorrow to check for donor cells. Please say prayers that things are going well and the donor cells are engrafting for both Maddie and Sam. Thanks.
Max had a busy day with OT, speech and school. Joanne commented tonight that Max has not whined once during therapies this week. He is such a tough kid.
We were really upset about the loss of a very close family friend from Charlevoix. It’s times like this that it is so hard to be so far away. Our prayers are with the family.
Love,
Jane and Jeff
Wednesday, November 12, 2003 7:40 PM CST
Day 40
Dear Friends,
Maddie: WBC 1.3
Sammy: WBC .6
Slowly but surely Sam is heading in the right direction. Maddie woke up with a fever this morning. They drew blood from all her lines to see if there were any infections. There was some confusion over tests results but by the end of the day things looked fine. She probably won’t be leaving the hospital until Monday or Tuesday though. More time for Sam to catch up.
Sam had a grouchy day and then took a two hour nap. It made a big difference and he had a nice ending to the day.
Max had OT, PT and school today. He is working hard and tolerating it better each day. The botox has helped more than we dared to hope for. He came to the hospital this afternoon and had a good visit with Maddie. Sam was sleeping. I talked with Maddie about leaving the hospital and asked why she wanted to be back at the apartment. She said to be with Max. How great is that?
Emily, Maddie’s primary nurse, stopped by today with new pajamas for Maddie. She is so nice and we are really going to miss her when we leave. We didn’t think Maddie would have her for a nurse again but it looks like we will see her on Saturday night.
I did want to mention that I wore pants for two days this week. Even Max gave in for a day. We all had shorts on today. It was in the 70’s and sunny - a beautiful day. Joanne and Jeff hung tough and still wore shorts all week but I think pants are in the near future. Just thought you might like a fashion update.
Dad and I are at the hospital tonight. Jeff is tucking Max in. Hope you all had a good day.
Love,
Jane and Jeff
Our story will be airing on WOOD TV 8 on Nov. 18, 19, and 20 at 11:00 p.m. Each segment will tell a different part of the story.
Tuesday, November 11, 2003 5:18 PM CST
Day 39
Dear Friends,
Maddie: WBC 1.2
Sam: WBC .5
Go Sam. Catch Maddie. Both of the kids are doing very well. They have even started talking discharge for Maddie. They think maybe Friday. We aren’t getting too excited yet. Day by day. We have talked to too many people who thought they were getting discharged and then didn’t. We are also hoping Sam can catch up and maybe be discharged soon too or better yet - the same day.
Max is kicking butt in therapy. The botox has really helped. Today in PT he walked out to the carwash area (200 feet) without a tear. Jeff said he was even laughing when he saw him. I have to be very careful not to mislead any of you. He has a lot of help walking. Joanne holds on to his hands and the therapist walks behind him and swivels his hips a little. This is huge improvement for Max. His overall strength is improving – even trunk strength and arm strength. His speech is also improving a bit and his language skills are doing pretty well. The road is long for Max but he is taking small steps in the right direction.
It is an anniversary of sorts. One year ago we found about Maddie and Sam. I’m not going to go into a lot of detail, but it was the darkest day for me. I have often spoke of this time. Only through prayer did we make it through that week. I am so grateful to our friend who came and spoke with me that week and helped pull me out of the haze. Thank you God for sending her.
Love,
Jane and Jeff
Monday, November 10, 2003 6:37 PM CST
Day 38
Dear Friends,
Maddie: WBC 1.2 (Can you believe it?)
Sam: WBC .4 (Can you believe it?)
What can we say? Maddie jumped way up over night. Sam is holding steady but we hope he jumps tonight. Last night I wrote about ANC levels. Maddie’s ANC was 1008 today. She can go down in white blood cells and still have an ANC level over 500. Sam’s ANC level was 100 something. He has a way to go. They both continue to look good, take walks, and play games.
Max had PT and school today. He went to see Elf, the new movie out. Max really liked it. He came to the hospital for a quick visit and now we are back at the apartment. Mom and Jeff are at the hospital tonight.
The entries are boring. I’m so sorry but so thankful. We feel very blessed and humbled by all that is happening. We take each day as it comes and just hand over each one to God.
Love,
Jane and Jeff
Sunday, November 9, 2003 5:57 PM CST
Day 37
Dear Friends,
Maddie: WBC .7
Sam: WBC .4
Overall, a good day with white blood cells. It is quite an event each morning finding out. They draw the blood at 2:00 am and usually know around 4:00 am what the labs were. We keep waking up and asking ourselves if we want to know early or wait until sun up. Sometimes we get up and ask. Other times we wait. We are glad today that Maddie went up and Sam stayed the same. The kids continue to feel well. They look so good. They have their moments of ‘roid rage’ from the steroids but are doing amazingly well. Thank you, God.
Max came for an early visit this morning. He played some Crazy 8’s with Joanne and Maddie. Grandma and Grandpa went to church at Duke chapel this morning. They said it was a wonderful experience. The guest minister was from South Carolina. When they got done with church, Jeff and I went home and hung out with Max and showered. Now Joanne and I are going to spend the night at the hospital.
Have we mentioned that we are so sick of Candyland? But we thank God that the kids are here and able to play it with us.
Love,
Jane and Jeff
Someone asked in the guestbook how high the white blood cell count needed to be to get out of the hospital. There is no exact number. They go by the ANC which is an equation that the WBC plays a part in. The ANC needs to be over 500 for three consecutive days. Maddie's was 260 the other day and then 125 the next. When we have a WBC around 1, I think we will be there. We shall see. I have probably confused some of you.
Saturday, November 8, 2003 6:12 PM CST
Day 36
Dear Friends,
Maddie: WBC .6
Sam: WBC .4
Sam is back up where he was two days ago. They both are feeling really good. I did forget to mention that yesterday Maddie threw up. After she was done, she looked at me and said, “That’s the first time I threw up in the hospital. Huh, Mom?” She doesn’t remember any of the yucky days.
Max has been pretty tired lately. Today we gave him a lazy day. He watched Home Alone and Home Alone 2. He hadn’t seen them before and liked them.
It was a boring day. Just the kind we like. We thank God for how well the kids are doing.
Love,
Jane and Jeff
Friday, November 7, 2003 7:10 PM CST
Day 35
Dear Friends,
Maddie: WBC .6
Sam: WBC .3
Maddie stayed the same. Sam went back to .3. We shall see what happens tomorrow. Hopefully they will each be a little higher. They are both feeling well and eating lots.
Max was very tired today. He is ready for the weekend. He came to visit today and Maddie in particular was very happy to see him. She asks for him often. They are so cute together.
Grandpa and Jeff are at the hospital. Max has the three ladies to himself. Thanks Nancy for the update that WOOD TV 8 was at the school. We look forward to the finished project on the 18th, 19th and 20th. Have a great weekend.
Love,
Jane and Jeff
Thursday, November 6, 2003 6:47 PM CST
Day 34
Dear Friends,
Maddie: WBC .6
Sam: WBC .4
Yay. They each went up .1. Hopefully we’ll keep on moving. Everything looks good. The IV poles are slowly emptying as we switch over to oral meds. This is all a good sign that they are healthy. The biggest thing they have going is they are eating well which lets us know all is well with the digestive track. We are incredibly thankful.
Max continues to work hard. He had OT, school and speech today. He even took a nap! He hasn’t done that in a long time. He was whipped. He came to the hospital for a quick visit. Jeff is home with him tonight (and Grandma and Grandpa). Joanne and I are at the hospital.
Our buddies, Stacy and Maria, just left. They were here playing games with Maddie and Sam for two hours. They are so good with the kids and had them both in Sam’s room. I remember being way more selfish as a college student. They are so sweet.
Hope you all had a good day too.
Love,
Jane and Jeff
Wednesday, November 5, 2003 6:53 PM CST
Day 33
Dear Friends,
Maddie: WBC .5
Sam: WBC .3
Not much new on the white blood cell front. Sam stayed steady. Maddie went back up to .5. Everything looks good and they feel well. Thank you, God.
Max came to visit today. He had OT, PT and school. He went to Walmart with Joanne and had a good time.
At day 5 you sweetly chant “Grow, cells grow”. By day 20, you gruffly say, “Grow cells, grow.” By day 33 it would be easy to say, “Grow, &%#@ cells, grow.” It is all perspective. On day 33, Max was in intensive care after his CSA seizure. We are constantly reminded that others have it worse and today we have it pretty good. So we will sweetly chant, “Grow, cells grow.” And Thank you, God.
Love,
Jane and Jeff
Tuesday, November 4, 2003 6:46 PM CST
Day 32
Dear Friends,
Maddie WBC .4
Sam WBC .3
Not much has changed in the white blood cell counts. Each day we wake up hoping it is higher. We are not worried about it at this point. Maddie and Sam had good days. The played games and walked in the halls. They are both eating a lot and are completely off their TPN. We are just waiting for the cells. Grow, cells, grow!!
Max had a very busy day. He had OT, PT and school. Joanne and I took him in the afternoon for a casting for new braces. They will be hinged at the bottom and should move better. It is his third pair. His needs keep changing. The botox has relaxed his legs enough that he could be fitted and hopefully the new braces will bend and move easier. Barbara, his therapist is hoping to try stairs to help strengthen his legs.
After the casting, Max came to the hospital for a movie and popcorn. My mom bought two copies of Finding Nemo today. One for the kids and one for the lounge here at the BMT floor. That was very nice of her to think of everyone. Our kids really like the movie and I think really enjoyed watching it together.
After the movie, Maddie and Sam each ate two helping of goulash. Then their buddies came to play. Dad and I are at the hospital for the night.
Sadly, we had to take Uncle Bill to the airport today. Thanks again Sally, Molly, Grace and Jackson for sharing him. Thanks Bill. You always bring fun with you.
We continue to thank God for how well these three kids are doing. We pray for continued good health and continuous improvement for Max. Thanks for checking on us.
Love,
Jane and Jeff
PS As I was entering this, Dr. Kurtzberg came by. She says all looks good. Engraftment is going how donor engraftment would. It all sounded good and we really appreciate her stopping by. She works too hard.
Monday, November 3, 2003 5:58 PM CST
Day +31
Dear Friends,
The day started with Maddie’s WBC count at .5 and Sam’s at .3. Yay! I think they have had enough of the hospital though. Sam was a little whiny. He got very upset when his bandage had to come off his new line and get replaced. Maddie got another bloody nose and was more upset than usual. When their teachers came they both wanted me to stay with them. I came home for the evening and they both had a hard time with that. I think they are just ready to go back to the apartment. Hopefully it won’t be too long. Grow cells, grow!
Max had very exciting news today. During PT he walked from the couch to his therapist’s car (200 feet) and back without crying. Barbara, his therapist was behind him helping to swivel his hips and Joanne was in front holding his hands. Last week he would cry going across the family room. This is marvelous improvement. We are so proud of him and so happy that U of NC suggested Botox. We are very hopeful for the next two weeks. Max also went to Brother Bear, the movie with Aunt Joanne in the afternoon. They had a good time and both of them enjoyed the movie. We look forward to taking him again with Maddie and Sam.
Bill and Jeff went golfing today in the 80 degree sunny weather. They went to the Duke golf course and were impressed. They had a good time and were able to hit the ball A LOT. We really appreciate him coming down and really appreciate Sally and the kids sharing him.
Happy birthday Grandpa Up North!!!!!!! We miss you. Hope you are enjoying the birthday snow.
Love,
Jane and Jeff
Sunday, November 2, 2003 6:11 PM CST
Day +30
Dear Friends,
November 2nd and 82 degrees outside. North Carolina is feeling pretty good. Needless to say, we are still in shorts today. It is beautiful.
Sam woke up with a WBC count of .2 and a tummy ache. His belly hurt for quite a while and they gave him morphine. We aren’t sure what causes it, but it has happened a few times and lasts about an hour and a half. He felt fine after a short nap. Then it hurt again alittle in the evening. Maddie has a WBC count of .3 still. She feels okay but is quiet and tired. Overall, things continue to look good and we wait for the cells. Both kids are eating and we hope the TPN (nutrition through their lines) is stopped before too long. They have started to cut back on it.
Max went for a long walk in the sun with Joanne today. He came up to visit the kids for a while. Maddie and Sam were napping at the time so it gave Jeff and me a chance totake him for a walk and spend some time with just him. He enjoys his weekends with no therapies. The Botox have started to relax his legs and we are curious what will happen in the next couple of weeks.
Grandma and Grandpa Rhode have played lots of games with the kids. Uncle Bill is a big hit too. He brought the whole first season of Spongebob on DVD!! We hope you all had a good weekend.
Love,
Jane and Jeff
Saturday, November 1, 2003 5:39 PM CST
Day +29
Dear Friends,
Sorry about the loss Hornets. It sounded like a tough one. Hope everyone had a good Halloween last night.
Sam’s WBC count was .3 this morning. Maddie’s stayed at .3. They are neck and neck. All other labs looked great. We did notice this morning that Sam’s double line was hanging out farther than it should have been. It must have been pulled in his sleep. We were talking with the nurse and waiting for someone to come from the ‘line’ group when he itched his belly and it all came out. They were not going to put another Hickman line in. They decided to put a PICC line in his arm. It looks a lot like an IV and was not fun to put in. He had a chest x-ray after to make sure it was in the right spot. Nope. Too far by 3 cm. They had to undo the bandage and pull it out. It isn’t the best, but he really needed another port.
Uncle Bill came to visit today. He is my sister Sally’s husband. The kids were happy to see him. Jeff was looking forward to watching the MSU and U of M game with him today. No luck. The ABC station here played Nebraska vs. Texas.
My dad and I are going to spend the night at the hospital. Hopefully tomorrow we will have a bigger cell count to report.
Love,
Jane and Jeff
Thanks so much for the packages, cards and emails. I have been caring around guilt about not sending thank you’s. Please forgive me. We appreciate how kind everyone has been. The kids have really enjoyed it all.
Friday, October 31, 2003 6:11 PM CST
Day + 28
Dear Friends,
We had a busy day today. Jeff and I left the apartment early this morning with Max for his Botox appointment. The doctor we met with did a good job explaining the purpose of Botox. He wanted to make sure we knew it was not going to make Max’s legs normal. It will just relax the muscles so he can do more in PT. The effects won’t happen until 72 hours and after two weeks, the effects will be maximum. The injections will last up to 6 months. It only took about a minute and a half total for the doctor to give the 6 shots. Max was incredible brave. He did not cry at all and told us that they weren’t that bad. Both Jeff and I thought the injections would be worse than what they were. Now we will just wait to see what will happen. We are so proud of Max.
Maddie and Sam stayed steady with their WBC counts. They didn’t go up or down. They took good naps today but felt good and were able to play.
Happy Halloween. I have always loved Halloween. I have wonderful memories of trick or treating and dressing up. However last year, Halloween was one of the toughest nights. We had found out about Max the week before. As we walked along the sidewalks, he kept tripping. He even fell at one point. We tried so hard to put on a brave front but at every friend’s door , our devastation was mirrored in their faces. It was miserable and I never thought I’d enjoy this holiday again.
Oddly, I was really looking forward to today. The kids put on the costumes and met in the family lounge here. They were able to see the other kids. There wasn’t much for them to do, but I don’t think anyone had more fun than Max. He laughed and threw three balls in a big Halloween Tub. Maddie was very tired but liked seeing the other kids. Sam enjoyed being Spongebob but he wouldn’t wear the tights. I wouldn’t have wanted to either. I was sad for a moment looking around the room seeing all the sick kids suffering from all kinds of horrible diseases with such a little Halloween. It just doesn’t seem right, but I think they were all pretty tired and weren’t up to much fun. Next year, God willing, they will all be out knocking on every door.
Max will do more trick or treating tonight with Joanne and me. I know we’ll have a good time. She makes everything fun for him. Marcia and Don are leaving tonight for Michigan. Thank you. You wouldn’t believe the number of Crazy 8 games they played.
Our eyes are on the future. Next year’s Halloween is going to rock!
Love,
Jane and Jeff
Tonight: Go Hornets!! Go Michael!!
Tomorrow: Go green!! Go blue!! We root for everyone here.
Thursday, October 30, 2003 7:30 PM CST
Day +27
Dear Friends,
We started the morning with a .3 WBC count for Maddie and a .2 for Sam. That was good news. We just hope they keep going up. The kids are feeling great and doing well.
Max had a busy day. He had OT, school and speech. He came to the hospital for a visit and tomorrow is Botox day. Jeff and I are both back at the apartment so we can take him to the appointment tomorrow. Don and Joanne are at the hospital. It was hard to leave but Max really needs us.
Grandma and Grandpa Strawberry (aka Bob and Claudia) arrived this afternoon. It was good to see them. Grandpa hasn’t seen the kids since we left Michigan and the look on his face was priceless.
I keep forgetting to include Lucas’ address. It is www.caringbridge.org/nj/lucastheshrimpeater . He is doing better but still needs prayers.
Thanks.
Love,
Jane and Jeff
Wednesday, October 29, 2003 7:28 PM CST
Day +26
Dear Friends,
Today was Jeff’s 39th birthday, as you can tell from the pictures. We had a good time at the hospital celebrating. He got great gifts from the kids. Maddie made him a book, a card and got him some Spongebob boxers. Sam got him a hammer and two screwdrivers. Max got him a great green shirt. It was fun. Don and Marcia came to the hospital tonight so Jeff and I could go out for dinner. Then Jeff headed home to have birthday pumpkin pie with Max. Happy birthday, Jeff. You deserve a great one.
Maddie was steady with a .2 wbc count and Sam too with .1. Where are the cells? We are actually quite patient but are always eager in the morning to see if they have gone up. Both kids feel well and that is so important.
Max had therapies this morning. Joanne, Jeff and I have been discussing ways to get him to do more in everyday stuff. You feel like you can never do enough. We are very interested to see what the Botox will do on Friday.
Thanks for all the birthday wishes for Jeff. He received a whole box of birthday wishes from church. It was great. Thank you.
Hope you all had a good Wednesday.
Love,
Jane and Jeff
Tuesday, October 28, 2003 6:58 PM CST
Day +25
Dear Friends,
Actually for Max it is Day + 297. Can you believe it? Let’s start with him tonight. Max had PT, OT and school. He was done early and had the afternoon off. We got his labs back and everything looks good. His Immune Gobuline (sp?) test came back in the normal range (the lower end of normal). This is good but they still recommend masks in crowds. He came by the hosptial for a visit in the afternoon. I think he really misses the little guys.
Maddie’s white blood cell count was still .2 this morning. She continues to do very well and Iis an absolute sweetheart. She has always been wonderful, but right now she is just adorable.
Sam’s white blood cell count went back down to .1. He was in good spirits for most of the day. He is the cutest little bald man. Last night he had a problem. About 10:00 last night he was in pain. He kept saying it was his belly. He cried for an hour and a half. I felt so bad. They gave him morphine and it helped. He slept the rest of the night and didn’t hurt today. They think it was gas. Some gas!
Dr. Kurtzberg came to visit. She told us the kids were doing well. She was not at all concerned about their WBC count. It was good to hear it from her.
Jeff and Don are at the hospital tonight. Tomorrow is Jeff’s birthday. The kids are ready to celebrate with him. Jeff has had a heck of a year.
I have to tell you about the Duke nursing staff on the BMT unit. They are so good at their jobs. Last night when Sam was having his pain, a nurse that wasn’t even his came in to help and felt so bad for him. The kids just adore their primary nurses and have really done well with each new nurse. In a job that is so underappreciated, these people are top notch.
Time to tuck Max in. Hope you all have a good night.
Love,
Jane and Jeff
Monday, October 27, 2003 5:40 PM CST
Day +24
Dear Friends,
The big news of the day is that both Maddie and Sam had a white blood cell count of .2 this morning. Hopefully they will hold steady or improve tomorrow morning. They both felt great all day and played and walked in the halls. They are both eating and the hospital is starting to cut back on their TPN (nutrition through their lines). All in all, things are looking good. We thank God for today and pray for another good one tomorrow. It is scary how fast things can change here.
Max had PT, OT and speech today. We have not heard when he will be getting the Botox injections yet. Hopefully, it will happen soon.
Well, that’s about it. Joanne and I are going to spend the night at the hospital. Don and Marcia (Jeff’s parents) are leaving at the end of the week. Bob and Claudia (my parents) will arrive. We are getting ready for Halloween. There will be a party here at the hospital. Sam will be Spongebob. Maddie is Blossom, a Powerpuff Girl, and Max will be a skeleton. Hope you all had a good Monday. Thanks for praying for cells. Hopefully they will keep multiplying and we can get out of the hospital in a couple of weeks.
Love,
Jane and Jeff
Sunday, October 26, 2003 6:31 PM CST
Day +23
Dear Friends,
Good day here at Duke in rooms 5210 & 5209. Maddie felt well and her white blood cell count went up to .2. We’ll see tomorrow if it is anything to get excited about. It could be right back at .1. Sam felt well and his WBC count is still .1. The doctors tell us both children are doing well.
Max came to visit tonight. He brought Maddie a McDonald’s chicken nugget Happy Meal. (Sam ate a pizza Lunchable.) He watched some of The Little Mermaid with Maddie and some of the Powerpuff Girls with Sam. He also went to KMart with Grandpa today.
Marcia and Jeff are at the hospital tonight. Hopefully the labs tomorrow will show more white blood cells.
Love,
Jane and Jeff
PS How about that time change? It's only 7:30 and I'm ready for bed.
Saturday, October 25, 2003 6:17 PM CDT
Day 22
Dear Friends,
As you read yesterday. Today was our one year anniversary with MLD. Oddly enough, it was a very good day. We are still idle at .1 white blood cell count. Grow cells grow! We aren’t complaining. The kids feel good and are having about as good of a time as you can on a BMT floor. We played lots of Candyland, Crazy 8’s, Go Fish, Yahtzee and Guess Who today. Our friend Mike came to visit (and play). Max came to visit. Andy, the WOOD TV 8 cameraman came to film some more. It was good to see him again.
Not much else to report. It was a good day. Thank you, God. Lucas doesn’t have the ‘superbug’ they thought. He has an E Coli bacteria and they are treating it with two antibiotics. Thank you, God. Keep healing Lucas. Thank you to those who are praying for Lucas.
Love,
Jane and Jeff
Friday, October 24, 2003 5:28 PM CDT
Day +21
Dear Friends,
We are still patiently awaiting engraftment. They are both at .1 still. However, they are feeling great and everything else looks good. Thank you, God.
A year ago from yesterday Max fell on the playground. We took him in for a Catscan. A year ago from today they called and told us the catscan showed ‘diffuse white matter’ and we needed to go in for an MRI. Tomorrow is officially the one year anniversary of our relationship with metachromatic leukodystrophy.
I have had a couple of people ask me if the anniversary will be sad. I don’t think so. It is just a reminder. A friend of ours from Minnesota once wrote on their Caring Bridge journal that she and her husband made sure that finding out about her son’s cancer would never be a defining moment for them. I have always had that in the back of my head and would love to feel the same way. I have to admit that October 25, 2002 was a defining moment for me. There was life before Oct. 25 and then there was life after. This is more of a defining moment for me than my marriage, the birth of the kids, anything. Nothing we have ever experienced has had more of an impact or created more change and emotion for us. (I include Jeff into this because we have talked about this many times.)
Tomorrow is a reminder for us. It reminds us how fast life can change. It reminds us of how we are connected to so many people. It reminds us of how much we love these kids.
It reminds us how incredibly far we have come in a year. A year ago we had so little hope for Max. Now his life has been saved and we wait for more improvement. We didn’t know about Maddie and Sam a year ago, but the devastation when we found out is fresh. The thought of what these transplants can do for those two is miraculous. Three transplants in a year. Three miracles.
This summer when WOOD TV 8 was at the house doing an interview, they asked if people should feel sorry for our kids. I remember answering no so fast I surprised myself. I went on to ramble a bit about quality of life. I wish I could answer that question again. My kids have the means to be treated with the best medical knowledge in the world. They have hundreds of people praying for them a day. They have family that would leave their lives to travel across the country to help them get well. They have parents who would literally do anything for them. They have a God who loves them. They have a life story that can provide hope and faith to many as they grow older. I know people will feel sorry for them, but I still feel the answer is no.
God has been so strongly with us in the past year and continues to humble us and keep us in awe. We thank Him for helping us make it through this year.
Love,
Jane and Jeff
Thursday, October 23, 2003 6:24 PM CDT
Day 20
Dear Friends,
Another good day for the Trimpers. Maddie continues to improve each day. She took a few walks in the hall today and played Yahtzee, Go Fish, Old Maid .... Sam was fun today. He walked the halls in an elephant hat. He loves it. We’ll have to get a picture tomorrow.
Max had to go to clinic today and have his monthly blood draw for labs. They are going to test his immune system again. We are hoping it is normal and he doesn’t need his mask anymore. Max also had OT and school today.
Jeff and I went out for dinner tonight. We have been hearing about North Carolina bar-b-que. Everyone told us it was “vinegar based as opposed to tomato”. I didn’t really know what they meant. As soon as you try it, you understand. It is delicious. Then I had banana pudding for dessert. It’s like no pudding I’ve ever had before. Yum.
Enough about food. We have a lot to be thankful for. Pediatric ICU is just a short way from here. We thank God for how well Maddie, Sam and Max are doing. We thank Him for the day. - and the banana pudding.
Love,
Jane and Jeff
I needed to add one more thing on much more serious note. Please pray for our friend, Lucas. He is the 9 year old boy we met in Minnesota with MLD. The disease had progressed quickly for Lucas and he is now also battling an E coli bacteria. He is in isolation for two weeks and he has weighed on our mind heavily today. Please include Lucas and his parents Samantha and David and his little sister Abby in your prayers. As soon as I get their permission, I'll post their website. Thanks.
Wednesday, October 22, 2003 6:34 PM CDT
Dear Friends,
Today was a very good day. Maddie is feeling much better. We have really tried hard not to mess with her for the past few days, but I have to tell you it was so wonderful to hold her, talk to her, play games with her, and lay with her. We have all really missed her and it did us all good to have a bit of the old Maddie back.
Sam continues to do so well. He is very active and happy. The doctors aren’t concerned about anything with either one of them right now. Thank you, God. Both kids had time with their teachers.
Max was very busy today: PT, OT, speech and school. He is now eating chips and salsa and we’ll take him to bed.
Marcia and Jeff are at the hospital tonight. I’m back at the apartment. It was very hard to leave with Maddie being so cuddly. Being with Max is pretty darn good too.
Love,
Jane and Jeff
Tuesday, October 21, 2003 5:33 PM CDT
Day +18
Dear Friends,
We continue to wait for white blood cells. Maddie was a little bit better today. She worked with her teacher. Stacy and Maria, their ‘Buddies’ came to play, Maddie was able to play for about an hour before napping. Sam played the whole time and is acting like he never even had a transplant. It is so nice when the buddies come. Jeff and I actually go to talk with each other and play some cards.
Maddie took two fast and furious rides on the bike. Sam walked his baby in the stroller a few times and went to the family room for games. Grandma and Sam even went down for a music time this morning. Sam had a great time.
When the doctors came for rounds, they continue to tell us how happy they are with both Maddie and Sam. They are not concerned that the WBC count hasn’t started to rise.
Max had a very busy day. He had OT, school and PT. He was done by 12:30. Grandma, Grandpa, Joanne and Max then went to the North Carolina state fair in the afternoon. Max had a great time. He went on the logride with Grandpa and the Ferris Wheel with Grandma and Joanne. He won prizes for Maddie and Sam. They took lots of pictures. I’m sure they will be posted for a couple of days.
Speaking of pictures, Sammy made the home page for the pit crew group. If you would like to check it out, it is at www.pitcrewsforkids.org . If you go to the left and click on ‘our kids’, you will also see our family picture on the porch towards the bottom of the page.
We hope you all had a great day. Please keep praying for cells, donor cells.
Love,
Jane and Jeff
Monday, October 20, 2003 5:58 PM CDT
Day + 17
Dear Friends,
Nothing new today. We are still waiting for their while cell counts to rise. They each have a rash on their palms and their feet that indicates engraftment is happening. It is just a matter of waiting.
Sam is feeling very good and Maddie is still quiet and tired. Her weight has gone down quite a bit. She has lost about 5 pounds of fluid in the past two days. Yay! Sam's blood pressure was high again. They both took walks in the hall, Sam more than Maddie. Maddie is a terror on the go-cart bike. She drives really fast so her lap is done and she can go back to bed. Maddie's teacher came today and worked with her for a little while.
Max had PT, school and speech today. He is wearing his old braces again (Spiderman). His physical therapist, Barbara, adapted them so they would work. His teacher commented that she has seen good improvement in just the short time she has worked with him. His speech therapist was very happy with how he did today also. We thank God for all the small steps Max takes towards improvement.
Jeff and I stayed the night at the hospital last night and we will stay again tonight. We hope you all have a good night.
Love,
Jane and Jeff
Sunday, October 19, 2003 6:54 PM CDT
Day + 16
Dear Friends,
Much of the same today. Sam continues to feel well and is a little more active each day. Maddie just isn’t herself and we hope she perks up soon. We really miss our girl.
I have decided that a stem cell transplant = worry. I worry that Sam is feeling too good. I worry that Maddie is feeling too lousy. I worry that they won’t engraft. The worries are small but the list is long. When these transplants are complete and I know they are safe, then I will start to worry that MLD is going to rear it’s ugly head before the new cells really get in there working. I guess the reality is that moms worry - MLD or not.
The doctors feel good about their progress. Maddie’s weight has gone down thanks to lots of trips to the bathroom last night (poor Jeff). Both kids are having blood pressure issues still. Sam has become an incredible flirt. Have we mentioned that the nurses here are adorable - both in looks and personality?
Max continues to be happy and lap up all the attention. The weather has been beautiful here in North Carolina and Max has been able to enjoy it. The road will be long, but I can’t wait to see Max run again on a gorgeous sunny day.
Max came to the hospital tonight and ate dinner with Jeff and me. It was nice to have him to ourselves.
We hope you all had a good weekend.
Love,
Jane and Jeff
Saturday, October 18, 2003 7:27 PM CDT
Day +15
Dear Friends,
As you can see from the pictures we had some visitors on the floor today. We had visits from different racing crew members. Miss South Carolina was also there. They brought gift bags for all the kids on the BMT wing and also brought one for Max. It was very nice.
Maddie and Sam continue to stay consistent. Sam was very perky today and took a lot of walks in the hall. Maddie was very tired still and out of it. We lowered her morphine dose a couple of times today and hope she can perk up tomorrow. She had no fever today. Yay!
Max went to the North Carolina Zoo with Grandpa today. They had a great time and liked the polar bears best.
Jeff and Joanne are at the hospital tonight. Marcia and I stayed last night. We thank God for the day.
Love,
Jane and Jeff
Friday, October 17, 2003 7:10 PM CDT
Hello again. Yes it’s me. Jane was a little busy at the hospital tonight. I got to come “home” to spend some time with Max and try to get some sleep. Jane just called, Maddie is getting another dose of Lasix tonight at midnight (more pee pee runs to the bathroom). My mom is spending the night with Sam. He’s been pretty easy through the night.
We had a good day today. Both of the kids were walking in the halls and playing games in the rooms. Maddie has gained a little weight (fluids/steroids), so they are trying to get it down some (lasix). They are both taking oral medicine better these days (high blood pressure). They don’t like it, but they’re taking it. Maddie ate some Cheetos this morning and Graham crackers tonight. Sam had some Pizza Lunchables. Nobody threw up today!
Max had another busy day. I think Max likes Fridays as much as our friend Eric. He knows he has a couple of days off from work and time to play (just like Eric). Max and Grandpa went to Kmart to pick out his Halloween costume. He goes by the name “Bones” now. Maddie is going to be a Power Puff girl. Sam is going to be our old favorite, Sponge Bob. Maybe Aunt Joanne could be Patrick.
We had a good day today and continue to take one day at a time. It has been two weeks since their transplants and we are very happy with how things are going. Thank you all for the support from e-mails, gifts and cards. It keeps us going and keeps us focussed on our goal, 100% cure!
Jeff and Jane
Thursday, October 16, 2003 6:40 PM CDT
Day +13
Dear Friends,
Maddie had a tummy ache most of the day. They have changed her pain medication to morphine and that seems to have helped. She slept away most of the day. She did take a walk with me later in the afternoon. Sam felt pretty good today and took a few naps. He isn’t in any pain. Both kids are getting puffy from the steroids. They both have a white blood cell count of .1. It would be great to see that rise this week. The doctors assure us that both kids are doing well and there aren’t any concerns on their end. Thank you, God.
Tonight they had visits from their new friends through the ‘Best Buddies’ program here at Duke. Sam’s new buddy is Maria and Maddie’s is Sarah. Sam wasn’t really in the mood to play so Maddie got to read stories and play Yahtzee with both of them. Both Sarah and Maria are students at Duke.
Max had OT and school today. Joanne was eavesdropping on school and said that Max did a good job. The doctor from U of NC called today and they are setting up an appointment for Max to get Botox injections. The theory behind this is to inject the muscles, do major PT while the muscles are effected, get new braces for his feet and hopefully get quicker improvement. The Botox will last for 4 months. We are going to try it and see what it does.
Max came to the hospital today for a visit. He is becoming well known here and at the apartment complex. Lots of people say “Hi, Max.” We don’t know how he has met many of them.
It is 7:30 p.m. and both Sam and Maddie are having small bursts of energy. It is so good to see them playing and talking. Hope you all had a good Thursday.
Love,
Jane and Jeff
Wednesday, October 15, 2003 5:54 PM CDT
Day +12
Dear Friends,
Our Apple laptop was delivered today all fixed and ready to go. It’s good to be back on line in the hospital room.
Boring news today which is great news. Everything remains the same. Sam has no fevers but has a rash on his face and hands that looks like the start to engraftment. Yay! Maddie still has fevers, but everything else is the same. The doctor thought they looked good.
Joanne stayed at the hospital last night and Jeff went back to the apartment to be with Max. Tonight Jeff and Don will stay and I’ll head back to be with Max. It is a funny thing to stay at the hospital over night. If you stay with Sam it is pretty easy. He goes potty a couple of times in a urinal. If you spend the night with Maddie, you have to lug the IV pole into the bathroom and back. Her oxygen monitor often goes off for simple reasons. It is quite an adventure in that room. And we wonder why she’s tired??
The staff here is so friendly. They do sneak in quietly in the night. They are so sweet to the kids and very considerate of us adults. A couple of the nurses bought the kids transplant gifts and one brought us in a movie to watch. It has to be a hard unit to work yet they make it seem so nice. I have such new appreciation for nurses everywhere.
Max and Joanne came to visit in the afternoon. Maddie mentioned Max a couple of times yesterday. She misses him. He, on the other hand, is doing very well without us. Thanks to all the good family help.
I hope you all had a good day. The weather here was perfect. Not a cloud in the sky. We think we are the last people here still wearing shorts, but Jeff, Max, Joanne and I have committed to shorts until it snows.
Love,
Jane and Jeff
Tuesday, October 14, 2003 3:35 PM CDT
Day +11
Dear Friends,
The kids remain in good shape. Maddie's oxygen is still good and she hasn't thrown up in a couple of days. She still has low fevers but is doing so much better. Her white blood cell count is only .1 today. That is not surprising.
Sam is stilled tired (so is Maddie). He ate some chips and salsa today and threw up after. He hadn't thrown up in a couple of days. He is fever free and cute as a button.
Both kids are moody. They are perfectly delightful one minute and crabby the next. We are blaming steroids.
Max went to the museum with Grandma and Grandpa. They aren't back yet but I am sure they are having fun. He had PT and OT today.
Dr. Kurtzberg stopped by later yesterday. She reassured us that the kids look good and are doing well.
I had the opportunity today to check up on all my Caring Bridge sites. A few of them have us listed and are asking for prayers. Thank you. We have met some of the best people through this whole battle. (And have been reminded how great the ones we already knew were.)
Earlier in the car I said to Jeff, "Remind me to put that in the journal." I haven't a clue what it was. I am sure I will remember later.
We are thanking God several times during the day for how well Maddie and Sam are doing and how lucky we are to have them as our kids.
Love,
Jane and Jeff
Monday, October 13, 2003 2:45 PM CDT
Day +10
Dear Friends,
I have a quick minute so I thought I would update a little early today. Sam is doing pretty much the same. He is still very tired and is carrying some excess fluid. Maddie improves each day. She is also tired and carying extra fluid. They are on meds to help them 'output' more. Maddie's white cell count went from 0 to .2. It's a start. Sam is still at 0.
Grandma and Grandpa Trimper came over this morning so Jeff and I could go home and shower. Joanne and Max stopped by in the afternoon. Our friend Mike also came for a visit.
Maddie and Sam are taking walks in the hall. They don't want to. They would rather stay in bed, but the doctor is really encouraging it - especially for Maddie's lungs.
Max had OT and speech today. Of course, he worked hard. He just left to go grocery shopping with Grandma and Grandpa.
We were going to really try and get better at sending Thank You notes this time around with transplant. We again find it difficult with being at the hospital so much. Please forgive us and know how much we have enjoyed the packages- especially the kids. Thank you. Julie S. - Thank you for the cookies. They are cute and delicious.
So much to be thankful for. As I watched Maddie's oxygen level keep rising, I just kept thanking God. Each day is an adventure and can bring something new. We are incredibly thankful for each good day.
Love,
Jane and Jeff
Sunday, October 12, 2003 6:49 PM CDT
Day +9
Dear Friends,
I am not sure how many of you were able to read the update. Maddie is doing better today and has not required oxygen. She may tonight but so far, so good. She has some low fevers but is overall much better. I did mention that she has been a bit grouchy. As soon as Grandma and Grandpa Trimper got here, she perked right up for a short time and then snuggled in for the night. Sam continues to do well but is very tired. Both Maddie and Sam are retaining fluid and we hope that gets better soon.
Max came to visit a couple of times today. It is always so good to see him. He is very happy.
Thank you so much for the well wishes and prayers. We appreciate it so much and it helps us get through each day.
Because our computer is out of service right now, I haven't kept up on the Caring Bridge sites that I check each day. I had a chance today to check on our friend Madigan, a BMT transplant patient we met in Minnesota. Her update was from Wednesday and was thrilling to read. After one year of not walking, she took steps this past week. She is using a walker and gettting assistance from an adult. This is incredible. Madigan is an infantile MLD patient with an amazing warrior mom. God has certainly worked miracles with that young girl. There is so much hope.
Hope you all had a good weekend. We thank God for Maddie's, Madigan, and Sam's improvement.
Love,
Jane and Jeff
Sunday, October 12, 2003 8:30 AM CDT
Day +9
Dear Friends,
Caring Bridge did what they needed to do quickly. Wow. I just wanted to give a quick update this morning. I need to be fast because Jeff has both the kids.
Sam is in good shape. He is having some pain when he urinates but he loves morphine. This seems to take care of all pain for him. He took a big lap in the hall this morning and is resting in bed.
Maddie right now is not on oxygen. She may have it for a little while through out the day but is doing much better. They think the fluid is lessening but we will have to keep working on this problem. Her fevers are not so high today either and she had a good night. She is a little grouchy today (can't blame her). She took a short lap in the hall and called me fat and ugly the whole time. I didn't mind since it was the friskiest I've seen her in days.
Jill and Claudia left this morning. We expect Don and Marcia later today. Thank you for the prayers. They are working.
Love,
Jane and Jeff
Friday, October 10, 2003 4:19 PM CDT
Day 8
I left last night's entry still on and just wanted to add a quick update. It is 11:20 am on Saturday. The bacteria that both Maddie and Sam had tested negative. They will continue on the antibiotics but it is looking good. Sam's fever has been gone and he is tired but a little perkier. We are concerned about our Maddie. Breathing is difficult and she is now on oxygen (a little mask on her face). They think there is some fluid in her lungs and will try to rid of it using lasix (and time). Her heart rate is fine, but she looks a little rough. They are concerned but not worried. We pray she will improve soon. Her fevers are continuing also. She had a chest x-ray this morning and we are anxious to hear the report. Hopefully Caring Bridge will not be down too long. Love, Jane
Day 7
Dear Friends,
A week has passed. It seems longer. We have been in the hospital for 2 and a half weeks. It seems shorter.
Today was much of the same. The kids were a little perkier though. Sam actually asked to have a book read to him. After two days of sleeping and not really talking, I was delighted. Maddie let me shave the rest of her hair off. She looks much better. She had such little hair left and it was making such a mess. She looks beautiful. Maddie also has the bacteria that Sam has. They are treating both with antibiotics. Maddie's rash has improved. Sam's liver tests came back improved. Now we just need to continue to battle high temps, high blood pressure, and vomit. They both had a bath today and look much cleaner.
Max came to visit. I haven't seen him in a couple of days. It was so good to spend some time with him even if for a short period.
Family will change this weekend. Jill and Claudia will leave Sunday and Don and Marcia should arrive Sunday evening. Jill and Claudia have really helped us take care of Max. Thanks.
Caring Bridge is doing some updating tomorrow evening. I will try to post before they start, but I am not sure if I will make it. The Caring Bridge will be shut down up to 72 hours. Please don't worry if you can't get on or if we can't change the entry.
We are very thankful that Sam and Maddie are improving. We will take every bit of improvement we can get. Thank you so much for the prayers. They fuel us daily.
Love,
Jane and Jeff
Also, Dray Clark from WOOD TV 8 called and our segments will air at 11:00 p.m. on November 18, 19 and 20.
Thursday, October 9, 2003 3:01 PM CDT
Day +6
Dear Friends,
Our laptop is on the fritz. I thought I better update now while the computer was free in the family lounge.
It was a long night full of fever, high blood pressure, and throwing up. Maddie and Sam each seem to have their own handful of problems.
Maddie has a rash covering her body which they think is due to a drug reaction. She has had a fever all day and has slept most of it away. She also has been throwing up and had a nose bleed.
Two of Sam's liver tests came back better and one was worse. He has had a fever all day and has also slept. He also tested positive for a bacteria and they are treating this with antibiotics. He had a bit of the same rash as Maddie but his has improved. Sam has also had high blood pressure.
It is awful to see them this way. The staff here does not seem too concerned so we are trying to keep worrying at a minimum. They said this could all last for days. Rats!
Max, meanwhile is happy and spoiled by the three ladies. Jill, Claudia and Joanne are doing such a good job keeping him safe and happy.
We need some sleep and to see our kids in better shape. Hopefully this won't last too long.
Love,
Jane and Jeff
Wednesday, October 8, 2003 6:24 PM CDT
Day +5
Dear Friends,
We had another long day. Maddie didn’t wake up until noon and Sam didn’t wake up until after 1:00. Time goes slow when there isn’t anyone to play with.
The effects of the chemo are strong. They are tired and feeling yucky. Sam has a stomach ache and is getting high numbers back on liver tests. They tell us not to worry and are checking things out. He had an ultrasound done and it looked fine. It was a rainy day here so the rooms were dark and quiet. I think the kids just needed rest. They were only awake for a short time and then napped the afternoon away. It is now 7:20 p.m. and they are tucked in bed. They are both running fevers.
Max had school, OT, and speech. He was tired this morning too and it took him a while to get ready to work. His teacher came at 8:00 and that may be a wee bit too early for him. What are we going to do when he goes back to school?
We thank God that there are no serious problems today. Please pray for the kids that the fevers go away, their energy returns and Sam’s liver is healthy. Thanks.
Love,
Jane and Jeff
Tuesday, October 7, 2003 7:16 PM CDT
Day 4
Dear Friends,
Today was a long day. The kids had little energy and did not want to do much. They each took a two-three hour nap in the afternoon. It made the day drag on. When Sam woke up he walked the halls a little. Maddie did a couple of laps but just wanted to go back other room. The back of her hair was an enormous tangle. She lost a lot of hair today but the back of her head itched because of the snarl. I took some scissors to it and cut out a lot of the mess. She has very little hair left and isn’t very happy about it. I must admit that it was very hard for me too. Harder than Max. I would give her my hair in a heartbeat. In the grand scheme of things, hair loss is not a big deal for a five year old, but it is just one more adjustment.
Everything else was alright. Blood pressure for both is periodically high. They both threw up a couple of times. Maddie received platelets. That is probably good because she had another nose bleed.
Max had OT and school. He came to the hospital for a visit. He looks great and is very happy.
The toughest news of the day was the loss of Baby Noah. I’ve spoke about him in public. We have had a special tie to Noah, and his death is tough. Please keep his parents Debbie and Greg in your prayers.
I am also a Caring Bridge reader. I faithfully check on 12 sites each day. Only 6 of those kids are still alive. I thank God for how well Collin, Lucas, Madigan, Presley, Hunter, and Taylor are doing, but my heart breaks for the other 6 families. This heart ache will never leave us. We have seen a scary side of life that we never REALLY knew existed. Life will never be the same.
Love,
Jane and Jeff
Monday, October 6, 2003 6:38 PM CDT
Day +3
Dear Friends,
We had such a good day. Thank you, God. Both Maddie and Sam were feeling perkier. There was less throwing up. The kids took a couple of cruises in the hall. We have them do laps for exercise. They can either ride on the go-cart bike or walk. We can tell they are stronger because the bike is going faster and we have to follow with the IV pole. They also spent a lot of time in the Family Lounge playing with toys. It was good to see them more like themselves.
Maddie’s bed has a lot of hair all over it. We will probably be able to pull off chunks soon. Sam’s is still intact. Maddie’s mouth also shows the beginning of mouth sores, but she is not in any pain.
Max is his happy self. He had school today with his teacher and had speech later in the afternoon. He came here for a visit. He and Maddie had a good time sitting in her bed talking. Jeff and Jill took him back to the apartment, and Joanne and I will sleep here.
A family brought dinner to the floor tonight and big bags of Halloween goodies for the kids. Their son was transplanted five years ago. He is a beautiful healthy blonde little boy. It was such a kind thing to do and a wonderful sight to see someone doing so well.
It’s a surreal place. You don’t have to look far to see someone who has it worse than you. I am sure some of the families look at us and appreciate the fact they only have one child being transplanted. We look down the hall and see doctors talking in hushed tones outside of another child’s room and are appreciative that our kids are doing ok. I am sure those parents are appreciative that their child is not in ICU. You get the pattern. We thank God for how well the kids did today and hope tomorrow is just as good. We pray nightly for all the kids at Duke and Minnesota. Every day can be an adventure.
Love,
Jane and Jeff
One funny story to share. on the way to the hospital Joanne was talking with Max in the car. Their conversation went like this.
Max: I want to be a gross dad when I grow up.
Joanne: Is your dad gross?
Max: Yes.
Joanne: Is your mom gross?
Max: Oh yes. I have a great family.
Gross is great I guess. Have a good day.
Sunday, October 5, 2003 7:23 PM CDT
Hello, it's me, Jeff.
We had a pretty good day today. I got a good night sleep and got to spend some extra time with Max. Max had two days off from PT/OT/Speech. He had a nice weekend.
Maddie had a couple of nose bleeds today. We finally got them stopped with some help from the doctor and nurse. They were great with Maddie. She was out and about in the halls a lot today. She is very tired tonight, but in good spirits.
Sam had a tougher day. He has had it with blood pressure checks. They have been concerned about his blood pressure. According to Sam, ("Oh no! Not again!") in his best southern accent, they do not need to check him anymore. He ended up sleeping most of the afternoon. He is doing fine tonight and has let the nurses check his blood pressure.
Jane is at the apartment with Max tonight. I just talked to them and they're laying in bed reading some books. Claude and Jill spent the afternoon cooking. Thanks for the great dinner and apple pie.
Well, not a great weekend for football, U of M lost, Lions were losing the last I heard, but, State did win (go green).
I hope next weekend is better for football fans in the state of Michigan.
Have a good week all.
Jeff
Saturday, October 4, 2003 6:01 PM CDT
Day +1
Dear Friends,
Day +1 sounds so much better than Day 0. Day 0 sounds like you are just spinning your wheels. On day +1, you are on the move.
Today brought a better day. Maddie was perkier and has only thrown up twice. She did have a bloody nose -twice. They had to give her some platelets to make up for what she used. Maddie was strong enough today to go out in the hall and ride the bike. She even went to the Family Lounge to play Candyland with a Child Life Helper. Her blood pressure was fine all day.
Sam had a good day. His blood pressure is still a little high but he is in good spirits. Neither Maddie or Sam likes to do mouth care (yuck) or get their blood pressure taken. We have created sticker charts and every time they do a good job, they get a sticker. Stickers lead to rewards. I can’t believe we are bribing them. Life was easier though after the charts started.
Max came to the hospital for a while. He had OT in the morning. He even went to the mall with Aunt Joanne. Joanne is at the hospital with me for the night so Jeff can go home and give Max lots of attention.
We hear that lower Michigan had a cool but sunny day. It was beautiful here. Hopefully Charlevoix and Northern Michigan can get some sunshine.
Love,
Jane and Jeff
Friday, October 3, 2003 3:58 PM CDT
Day 0
Dear Friends,
What a day! Maddie and Sam both threw up a little this morning. Maddie more than Sam. They keep giving her new meds for her tummy. She vomits louder than anyone I have ever heard. (I think the hospital staff would agree.) Amazingly neither child complains much about it. They are also having some blood pressure (high) issues that are due to a drug they are taking and the transplant. They are taking meds for that and the blood pressure goes down each time. It is amazing the drugs available.
Maddie was transplanted first. It was later than planned but went well. We partied (See pictures). It is a true celebration and a second chance for their bodies. Sam was transplanted in the afternoon. We partied (See pictures). Pastor Jamey made each child a poster with a scripture. He said prayers for both transplants. We then each put oil on each child’s forehead and said a prayer for them in private. It was very nice. Max was at the hospital for five hours. He did so well for waiting around. I think we were all very tired by the end of the two transplants.
The cells only take about 15 minutes to enter the body through their lines. The room becomes filled with the smell of creamed corn. Needless to say, we won’t eat corn for months. Other than that, it is an ordinary procedure.
Max had a rash on his back starting on Wednesday. We have shown the doctors here at the hospital it twice now and it doesn’t appear to be anything.
So many things to thank God for tonight. The mother and father who donated the stem cells, the baby who provided them, that Max’s rash is nothing serious, all the nice people who are praying for our kids and writing such inspiring words in the journal, the medical miracles we are able to perform. He is responsible for it all and we give thanks.
Love,
Jane and Jeff
Thursday, October 2, 2003 6:34 PM CDT
Day -1
Dear Friends,
It is amazing what we do to these little bodies to save them. Only one more night of ATG. Thank God. They have both been throwing up all day and have small patches of hives all over their bodies. They are very tired. Fevers have been minimal today. Maddie has had a very tough time taking oral Tylenol today. It became a mini battle. We hope this gets better. There are many meds yet to come.
The transplants are scheduled for tomorrow. One of them (we don’t know who) will be transplanted between 10:30-11:00 and the other one will be transplanted around 1:00. We will be praying for the new cells here and would appreciate prayers from all over. We pray the cells engraft and their bodies are not harmed in the process. We pray for no Graft vs. Host Disease and no organ damage. However, this is a day of celebration for us. The party hats are ready (and so are the feather boas). We all have our Kick MLD in the Butt shirts ready!!
Pastor Jamey came over to the hospital this afternoon. It was so good to see him and hear news from home. We are so happy he could come.
Max had a busy day. He had OT and PT. Unfortunately for many of you, he also got his haircut. I can’t believe how you all turned against me! :) Aunt JoJo and Grandma took him to the salon and got a trim and neatened it up. You all can still have your curls.
Jeff and I are very tired. I almost wrote ‘mighty tired’. Maybe we are turning into southerners. We are hoping for few beeps and less vomit.
Love,
Jane and Jeff
Wednesday, October 1, 2003 6:12 PM CDT
Day -2
Dear Friends,
It was a long night. Both kids had fevers, threw up, and went potty a lot. The nurses were in and out all night. Maddie and Sam each had small patches of rash on their body when they woke up.
They both were very tired all day. They are getting Benadryl every four hours. They received their last dose of Cytoxan and are getting their second dose of ATG through the night. Tomorrow will be the last dose of ATG and the new cells will enter their bodies on Friday.
Pastor Jamey is arriving tomorrow and will be here for the transplant. We are so happy he could once again come and help us deliver the new cells and ask God to help them do their stuff.
Now, the kids do not look so great. They are not complaining but certainly can’t feel too swell either. The important thing to remember is that none of these symptoms are serious. They are caused by the drug and will go away when the drug ends. When we have serious concerns, we will let you know. For now, we pray for comfort but know that this is an essential step for 100% healing.
Max, meanwhile, is working hard. He had all three therapies today (OT, PT, and speech). He is happy and well taken care of. He is in need of a haircut. It will be his first official one since transplant. There is some debate among the apartment. A certain Grandma and Aunt Jill like it long and slightly curly. We will see what happens. No matter what, he looks great.
As I finish this entry (I started it in early afternoon), the kids are into their second dose. No major changes for them. The fevers are staying slight and the rash is moderate. The doctors watch blood pressure very closely (every 30 minutes) and so far so good. We hope for a calm night. We thank God that Friday is close.
Love,
Jane and Jeff
Tuesday, September 30, 2003 6:58 PM CDT
Day -3
Dear Friends,
It was long night at the hospital for Joanne and Jeff. Lots of throwing up, lots of having to go to the bathroom and lots of pumps beeping. I on the other hand had a great night at the apartment with Max. It seems a little unfair.
Sam threw up once this morning. He was a tired boy today but still played games and walked in the halls.
Maddie continued to throw up for the rest of the day but felt good. She also played lots of games, walked in the halls and rode the go-cart bike. She was very tired too.
They both went to the Family Lounge and did a craft with some Family Life specialists. They had a good time. They also had a good bath and are very clean. They also spent some time with their hospital teachers. Sam painted a beautiful picture and Maddie drew pictures to go with each season.
Max had OT and PT today. He worked hard and PT hurt. He is getting stronger though.
Max, Joanne, Jill and Grandma all made it at some point in the day to visit. The kids like new victims to defeat in Yahtzee and Go Fish.
ATG started after 4:00 pm. They were given Benadryl and Tylenol before the ATG to lessen the reactions from the drug. ATG comes from horses, and we do not react well to it. It is not a chemo drug but an immune suppressant. It is getting their little bodies ready to take the new cells and kick MLD in it’s butt.
Both Sam and Maddie have thrown up since the ATG. They both have fevers. Sam looks like he also has a bit of a rash. It is 7:50 and he is sound asleep. Maddie is very sleepy too. As awful as ATG is, it makes a child very sleepy. We hope Maddie and Sam can dream their way through a lot of it.
Thanks for all the prayers. These two are in God’s hands.
Love,
Jane and Jeff
P.S. Thank you so much for all the wonderful guestbook entries. They are so kind.
Monday, September 29, 2003 7:18 PM CDT
Day -4
Dear Friends,
We had another uneventful day. Yay! Maddie and Sam both threw up this morning, but they felt fine afterwards. The rest of the day they played cards, Yahtzee, Legos, etc. They each had school with their teacher at the hospital. They didn’t nap at all. They played and visited with Aunt Jill and Grandma. Jeff and I even went out for dinner. I am now home in the apartment and Joanne went to spend the night at the hospital.
Tomorrow afternoon the kids start ATG. This is a tough drug and we hope they handle it well. They will have three days of that and then transplant day. They should be transplanted sometime between 10:00 am- noon on Friday.
Max continues to do so well. He had PT and speech today. We thank God for how well he is doing. Aunt Jill, Grandma, and Aunt JoJo keep Max entertained and happy. He went on lots of walks today and ate many raspberries that were sent by Grandpa Strawberry.
Love,
Jane and Jeff
PS Thanks to the Greenville Daily News we have a new picture at the top. Thanks.
Also: Here was a guestbook entry from the Barbers. Each shirt spreads awareness. Just let Penny know if you are interested.
Hi Trimper Troopers!
We have more MLD T shirts available, childrens sizes also. They are $10.00 donation.
Also, I am taking orders for white hooded sweatshirts with the MLD logo as the T shirts for a $20.00 donation and also "not" hooded sweatshirts for $15.00.
If you're interested you can contact us at barber1@cmsinter.net.
The proceeds will go to the Trimper Family.
Chad,Penny,Ryah and Rylie Barber
Stanton, MI US - Monday, September 29, 2003 10:44 AM CDT
Sunday, September 28, 2003 5:13 PM CDT
Day -5
Dear Friends,
Nothing big to report today. Isn’t that GREAT news? Maddie and Sam each threw up once this morning but really felt well all day. They started the IV chemo drug, Cytoxan today and have handled it well. We are so thankful for each good day.
Sally flew out this morning. Thanks for coming Sally. Jill and Claudia arrived in the afternoon. They came over and gave us a break. We have been with Max more than we thought we would. We are very thankful for that.
It is so nice to read the guestbook. We realize you don’t know each other but it is fascinating how we all tie together. There are so many entries from people we wouldn’t have ever met if circumstances had been different - families we met in Minnesota, people we have met through Caring Bridge connections, therapists.....
We hope you all had a good weekend.
Love,
Jane and Jeff
Saturday, September 27, 2003 6:34 PM CDT
Dear Friends,
It was a long night. Maddie threw up her meds again and they decided to give her an NG tube like Sam’s. Needless to say, she did not like it. We finally calmed her down, got the chemo down and then she was asleep around midnight. She hadn’t napped yesterday and was sooooo tired. It was a restless night for her. She got her chemo med again at 4 in the morning and threw that up too. They are now giving her a med for her stomach before the chemo drug and that seems to help. We are so glad this is the last day for the oral chemo drug Busulfan. Tomorrow we start a nastier drug, but at least it is IV.
Meanwhile Sam woke up all shaky, sweaty and with a stomach ache. They took an xray to make sure nothing was wrong. Then Sam too a long pee and a big bowel movement and felt all better. Some problems are so easy to solve.
Last night’s dilemmas started the thought process going. I think both Jeff and I were struggling seeing Maddie do something she so did not want to do. I then checked on our other Caring Bridge friends, and it was all a little too much. After some prayer and a perfectly timed email from a friend, the situation seems less dark and more hopeful.
We had a visit from our friend Mike today. It was good to see him. The kids had a good time playing with him.
Marcia made it safely back to Michigan. Sally will leave and Claudia (aka Grandma Strawberry) and my sister Jill will arrive tomorrow. We are so lucky to have all this help.
Tonight Joanne is spending the night with us at the hospital and Jeff will go home and stay with Max and take Sally to the airport in the morning.
On a lighter note, Sam was kicking back in bed this morning and said, “I’m chillin.” He can also say buh-bye with a perfect southern accent. In the other room, Maddie got great pleasure at throwing her stinky socks at Mike. It’s not all bad.
Love,
Jane and Jeff
Friday, September 26, 2003 5:18 PM CDT
Day -7
Dear Friends,
It is Day -7. The negative numbers work up to transplant day. Next Friday will be the big day for new cells and will be considered Day 0. We hope to be out of the hospital by Day 40 and head home to Michigan by Day 100. If either of those days is sooner, yay.
Sam had a hard time taking his chemo medicine last night (Busulfan). He tried twice and threw up both times. They put a tube in his nose (NG tube) and the medicine now goes right down that. This is not our first choice, but it isn’t a big deal either. Sam doesn’t even notice it.
Maddie had a tough time this evening taking her Busulfan too. She threw up but was successful the second time. She really does not want a tube up her nose.
Both kids are feeling fine and doing well. They have one more day of Busulfan and then they will move on to another chemo drug for 4 days. This may make things a bit more difficult. The drug that hit Max the hardest (ATG) will start on Tuesday. Yuck. The only concern right now is the outside of one of Sam’s lines. It is a little red and looks sore but isn’t. They are testing the line for infection and will put an antibiotic in it for a few days. We are not overly concerned but would appreciate prayers for no infections.
Sally and Joanne brought Max to the hospital this morning. We took him home with us while we showered and did laundry. He had PT with Barbara while we were there. I was so glad to be there. He cried very little and did an exceptional job. Barbara mentioned how well he was doing. I am so proud of him.
We then took Max to KMart to pick out some activities for Sam and Maddie. He found them each a Nemo coloring kit, a coloring book, Old Maid cards and Crazy 8 cards. They liked it all and it helped keep them busy.
While Jeff and I were gone, we had a visit from Dr. Krivit from Minnesota. He was in town for a conference. Joanne and Sally visited with him for a while. That was very nice of him to stop by and see how we are doing.
So, we thank God again for a good day. Our babies aren’t hurting and they are having a lot of fun. We are taking this all one day at a time and trying to make the best of each day. Hopefully the good days will continue.
Love,
Jane and Jeff
Thursday, September 25, 2003 7:48 PM CDT
Dear Friends,
The kids have started their second day of chemo. Maddie is acting very normal and is in no pain. She doesn’t like to take the oral medications and can be a bit of a diva. We do get them down. They talked about getting a tube for her nose that the meds would go down. This will only be a last resort for us. We know how many meds will be coming at discharge time and she will need to do it. Other than that, she is having a good time. She is coloring a lot, playing Candyland, and watching movies. She walks int he hall and goes to Sam’s room. They have a family lounge where she can go with us and pick out and play games. When she leaves her room, she wears a mask. She can not leave our unit in the hospital.
Sam’s turn. The kids are getting Dilantin to prevent seizures that the first chemo drug can cause. The dilantin gives Sammy a drunken sailor effect. He is very wobbly when he walks and shaky when he tries to grab things. The dilation can make you very tired, but it seems to have the opposite effect on Sam. He is very wired. He is better about taking his meds than Maddie. He is also coloring, playing Candyland, and walking the halls. He thinks he is on a big adventure. I worry a little. It seems that no matter how many times I try to warn Sam and Maddie about how awful they may feel in a few days, they just don’t seem to listen or understand.
As always in a hospital, it is harder to sleep, but I think we are all doing pretty well. Maddie and I have been sharing a room and we haven’t been getting up until 8:00. Jeff and Sam have a long conversation from 4:00-5:30 am and then Sam sleeps some more. I’m not sure about Jeff. Right now the kids do not have adjoining rooms, but they will tonight. We are waiting for a beautiful little girl to be discharged and then we will take her room. Our rooms are close now though. Just a room apart.
Max is doing very well. His therapies continue to roll along. Aunt Sally and Grandma are at the hospital right now so we can shower.
I’m not sure when we will have Internet access at the hospital. It will hopefully be soon. Thank you so much for the guestbook entries. They are so inspirational. We have such a long way to go and pray so hard that these kids will have successful transplants.
Today has been a good day so far, and we thank God for that.
Love,
Jane and Jeff
Wednesday, September 24, 2003 7:47 PM CDT
This is Sally doing the update from North Carolina. I am in the apartment and Jane and Jeff still don't have internet access in the hospital but hope to soon.
Maddie and Sam have made it through the first day of chemo and so far so good but they are expecting it to get rough in a few days. They should get their new cells transplanted a week from Friday.
Max had PT, OT and Speech. Once again, he worked hard. After therapies Max and Joanne visited Maddie and Sam at the hospital and they had dinner together.
Marcia and Aunt Cindy visited at the hospital while Jane and Jeff ran home to take a shower (separately) and see Max. We said goodbye to Aunt Cindy today. Thanks Cindy for all your help!
Tuesday, September 23, 2003 3:50 PM CDT
Just a quick update at 1:45 p.m. We ran home to shower. Cindy and Marcia are with Maddie and Sam. They are doing very well. They are both tired. We aren't sure when we will have Internet at the hosptial (hopefully tonight). Someone will update later this evening.
Dear Friends,
Well, we are actually still at the apartment, but we will leave tonight for the hospital. We are waiting for pizza to be delivered. We’ll have a nice dinner and then call and find out what time they want us to show up. We took Maddie and Sam to clinic today to be weighed and measured. They have started them on Dilantin and took their labs. Sam’s line had a little bit of ooze so they put some cream on that. We have a bag of jammies packed and a favorite blanket and pillow for both Maddie and Sam
We definitely have mixed emotions. We are glad to get going. It is very hard to leave Max. We are nervous and anxious.
Max had both PT and OT today. Aunt JoJo and Grandma say he did a good job. Tomorrow he will have more therapies and will come visit us at the hospital.
Chemo begins tomorrow morning. Thanks for all the prayers.
Love,
Jane and Jeff
Monday, September 22, 2003 6:35 PM CDT
Dear Friends,
Well, we are still at the apartment. We are hoping to be admitted tomorrow. One of the BMT kids had a problem and had to be readmitted. We certainly understand. Hopefully, tomorrow’s journal will be from the hospital. They say it is probable.
Max had PT this morning. Each time he has PT, he cries less and works hard. We are so proud of him. He was supposed to have speech in the afternoon but it was canceled.
We went to a mall and saw a fountain that worked with sensors. A hand could make the fountain shoot high or low. It was neat. Grandma, Cindy and Jeff took the kids to KMart. Aunt Cindy played Go Fish for an hour. Maddie and Sam had baths and got their bandages changed. They too cried less and didn’t seem to mind too much. JoJo bribed them with toys if they could be brave. Lucky kids.
That’s about it. We are waiting patiently but eager to get going. Time to sit and think about what we are about to do isn’t necessarily a good thing. Please keep the prayers going for all three of these kids. We pray that the new cells become engrafted. We pray that none of the kids will have graft vs. host. We pray that their organs will stay healthy. We pray for little pain and a lot of laughter.
We thank God that each child is happy and content.
Love,
Jane and Jeff
Sunday, September 21, 2003 6:03 PM CDT
Dear Friends,
Today was a nice day. Joanne finally had a little time to herself while the rest of us went to the zoo. It was about an hour and a half away and worth the drive. We saw lots of nice animals and had a good time. It was very warm today.
Jeff and I snuck out for dinner. It was good and probably our last chance to be alone for a long while.
We are still hoping the kids will be admitted tomorrow. We have to call in the morning and find out for sure. We hope you all had a good weekend.
Love,
Jane and Jeff
Saturday, September 20, 2003 6:25 PM CDT
Dear Friends,
Today was a nice Saturday. The weather was warm and sunny. Max started the day with OT. He did a nice job. After his therapy, Jeff took all three kids on a field trip. They went to a lake in Chapel Hill and then went to the Duke football game. They didn’t stay long. You can tell from the picture how tired Max was.
Marcia picked up Cindy from the airport around noon. It was good to see her.
The rest of the day was pretty simple. We sat by the pool and played some games. We are very thankful for a good day.
Love,
Jane and Jeff
Friday, September 19, 2003 5:21 PM CDT
Dear Friends,
After-hurricane weather is beautiful! We had a gorgeous day. Max had PT around noon and after that we went to the Museum of Natural Science. We had a good time in the butterfly house, in the museum and on the train. It was a nice afternoon.
We did get a call from our nurse coordinator. It looks like Monday will be hospital day. We hope so.
We hope you all have a good weekend. We have OT tomorrow and Aunt Cindy will arrive in the morning. We are thinking about going to the zoo on Sunday.
Love,
Jane and Jeff
Thursday, September 18, 2003 3:59 PM CDT
Dear Friends,
Well, we are still powered up in the apartment. The worst of the hurricane is due to arrive in the next little while. Right now it is windy and rainy, but nothing we haven’t seen in Michigan. We’ll see what happens in the next couple of hours. Jeff, of course, had to go out for a drive and reported down trees on Duke’s campus. We can watch small skinny trees falling outside our windows. Many local schools have closed down for both today and tomorrow. Our lights have flickered a few times and we cheer each time they come back on. So far so good.
In addition to the storm, Max had OT this morning. Other than that, we had school, played games, watched TV, and just relaxed.
Well, time to watch out the window. Nature is mighty and so is it’s maker.
Love,
The MIchigan 7 Hurricane Storm Team reporting from North Carolina, RD
Jane, Jeff, Max, Maddie, Sam, JoJo, and Grandma Up North
PS Obviously we had a hard time coming up with a catchy name.
Wednesday, September 17, 2003 5:55 PM CDT
Dear Friends,
Happy birthday dear Joanne. Happy birthday dear Joanne. Happy birthday, happy birthdayyyyyyy. Happy birthday dear Joanne. Are you 1? Are you 2? .............. Today was Joanne’s birthday. Probably not the most exciting of birthdays for her, but we enjoyed celebrating with her. We had a cake, balloons and flowers. We hope she had a good day.
Again, Max was the busiest in the family. He had OT, PT and speech today. He also had an appointment with an eye doctor, as suggested by U of NC. His vision tested well and he can see in all vision fields. His weakness is tracking and moving the muscles of his eyes. This is the same as we have heard before.
Grandpa flew out this afternoon. He went home to Charlevoix to prepare for his mission trip in Ethiopia. We will miss him and are glad that Grandma could stay.
Maddie and Sam are doing fine. We are still waiting and really hope we are able to be admitted on Sunday. They like to help ‘shoot’ their lines with the heparin solutions each night. They are experts already. Maddie even let Max help last night.
If you haven’t checked out the photos yet, go see Joanne’s birthday pictures and the beautiful cookies we received today.
Well, time to prepare for the hurricane. We are true rookies at this. It doesn’t look like it will be too bad in the Raleigh/Durham area. If for some reason we don’t write tomorrow, don’t worry. We might lose electricity.
Love,
Jane and Jeff
Tuesday, September 16, 2003 5:26 PM CDT
Dear Friends,
Max was the busiest today. He had PT in the morning. Then he went and gave blood (no tears). When he got home, he had OT. We are so proud of him. The rest of us just played, grocery shopped, took Max to the clinic, etc. Jeff went golfing in the morning with our friend Mike.
It is Baby Noah’s birthday. Today his parents have asked us to have a time of prayer in Noah’s honor. They have called it “Noah’s Day of Prayers for Hope and Healing”. Go Noah!!
Aunt JoJo’s birthday is tomorrow. We better prepare a celebration. We are so so thankful for her.
Love,
Jane and Jeff
Monday, September 15, 2003 8:14 PM CDT
Dear Friends,
Monday in North Carolina. Max had physical therapy this morning. He had speech in the afternoon. He was brighter eyed today than he had been for a few days.
Grandma and Grandpa Trimper had fun with the kids. They took a few walks and played in the apartment.
Jeff and I met with Dr. Kurtzberg and our nurse coordinator, Jayne this afternoon. We signed some papers to get the transplants done for the kids. It looks like they will be admitted on Sunday. Nothing is for sure.
Jeff and I actually had a dinner date tonight. It was a nice chance to talk about current times and funny college-time memories.
Max will give blood tomorrow and have his labs checked. He also has PT and OT tomorrow. Maddie and Sam have the week off.
We continue to be so thankful for all we have. We continue to wait and watch while the healing happens.
Love,
Jane and Jeff
Sunday, September 14, 2003 7:00 PM CDT
Dear Friends,
Well, we have officially been here for three weeks. The time has gone quickly. We hope this continues to be the case.
Grandma Rhode left very early this morning. She made it home safely. We are thankful for that. Thanks for coming, Mom.
We kept pretty busy today. Jeff, Joanne and I went out for breakfast. Marcia and Don took a ride with Maddie and Max. Jeff took the kids and Marcia and Don on a tour. Joanne and I took Sam to the mall. We don’t think anyone leaves this apartment complex more than we do. It was fun to have Grandma and Grandpa Trimper here today.
We hope you all had a good weekend. We will let you know when the kids will be admitted as soon as we find out.
Love,
Jane and Jeff
Saturday, September 13, 2003 6:41 PM CDT
Dear Friends,
A cloudy Saturday in North Carolina. Max had OT this morning. His therapist worked on eating breakfast with him. Around noon we went to an art fair by the University of North Carolina. A friend from Chesaning told us about it and met us there. It was fun. The kids learned how to make balloon dogs and flowers.
This evening Jeff went to the airport to pick up his parents. They aren’t here yet but soon should be. Joanne, and the kids and I went to a birthday party for a Krabbe baby named Noah. Some of you have heard about him or checked his website. It was a nice chance to meet other families.
We do not have much planned for tomorrow. Grandma is heading back to Chesaning. Hope you all had an enjoyable Saturday.
Love,
Jane and Jeff
Friday, September 12, 2003 3:47 PM CDT
Dear Friends,
We have had a few questions about the lines that Maddie and Sam had put in. Max also had a line in Minnesota. He had a double lumen Hickman line. It was one tube that came out of his chest. That one line split into two. They used the two ports to administer medicines, IV fluid, nutrition, etc. They also extract blood from the ports.
Maddie and Sam have two lines. One is a double lumen and one is a single. (Three ports altogether) That is the way Duke does it with children. Bigger children can have one triple lumen line. Maddie and Sam will give blood through the line every morning while in the hospital to check their labs.
Max’s line was removed at his 100 day visit. We will see how it goes with Maddie and Sam.
On a lighter note. Maddie’s ports are named Luna, Tuna and Funa. Sam’s are named Tanner, Mara ?(xxoo), and Ariel. The kids are still sore from the surgery, but they are doing well and having fun around the apartment. Max was very drowsy yet today from yesterday’s sedation. It took a lot to make him sleep and it takes a while to get out of his system. We are hoping he is back to action tomorrow.
A home care nurse came over this morning. She reviewed with us how to take care of the lines and change the bandages with Maddie and Sam. Maddie had to have her dressing changed with the nurse due to bleeding yesterday. It hurt.
Max had PT in the afternoon. WOOD TV 8 came and filmed while he worked. It hurt.
I think the four grown ups in the apartment had a hard time with Max and Maddie feeling pain. It is very tough to watch them so upset. Ironically, we thank God that we have the opportunity. We are so thankful that Max is here and that Maddie has the chance to have a procedure that can help her so much. We just pray for little pain and huge success.
It was a cloudy and warm day. We were lazy for the rest of the day and watched some movies. We hope you all had a good week.
Love,
Jane and Jeff
Thursday, September 11, 2003 7:36 PM CDT
Dear Friends,
This morning we took Maddie and Sam to the clinic to have their bandage changed from yesterday’s surgery. Maddie was a little sore when she woke up and the changing hurt her quite a bit. Sam did better with it. It still hurt him a little though. The good news was their sites looked good.
Max had an MRI in the afternoon. They sedated him for the procedure. He was very drowsy and is still sleeping.
Our WOOD TV 8 friends came over tonight. It was very fun. Maddie and Sam really like these guys.
We found out yesterday that the kids will not be admitted on Sunday. There aren’t any rooms available. We might be able to be admitted on Mon., Tues., or Wed. Most likely it will the following Sunday. That is all right with us because the only way to get a bed right now is to have someone get moved to ICU. We will gladly wait our turn.
So our schedule is moved farther out. A Christmas homecoming will be more difficult, but the kids are doing well and the weather is beautiful. Memories of a past September 11th were never far from our minds today.
Love,
Jane and Jeff
Wednesday, September 10, 2003 7:08 PM CDT
Dear Friends,
We are back to the apartment and the lines are in. We had to wait a long time due to some emergency surgeries but everything went well. It is better to wait than be the person having the emergency. The kids were incredibly brave. They went in well prepared (Thanks to the Child Life group). When Sam woke up he said, “Kissy.” What a doll! Maddie woke up cranky until the drugs wore off. She then asked if she had actually slept. They both ate crackers, lots of crackers. They drank Sprite. We got home around 7:30.
Our WOOD TV 8 friends were with us again. They were terrific and played with the kids while we waited. They did crafts and took walks. It really helped to pass the time.
Max had PT, OT and speech today. He did a good job. Grandma and Joanne took him on walks. Grandma, the speech therapist, helped with speech today.
On a sadder note, our friend AJ passed away yesterday. We are upset. Too many of the children from the RMH in Minnesota lost their battle. AJ was so brave and endured more pain and problems than probably any child we met. I don’t often think too much about what is fair and unfair, but sometimes things just don’t make sense.
We thank God that Maddie and Sam had successful surgeries. We pray for AJ’s family.
Love,
Jane and Jeff
Tuesday, September 9, 2003 6:01 PM CDT
Dear Friends,
It was a long day again. Max went to the University of North Carolina for the testing that Maddie and Sam had last week. It was hard to watch him work. We focus so much on what Max can do and it is their job to point out what he can’t. It is tough.
We brought him home and it was time to go to the clinic to have Sammy take a fine motor test and for the kids to do the pre-op work for tomorrow’s surgery. They had a child life specialist who talked with Maddie and Sam about what would happen tomorrow. It was very well done and they are prepared for the placement of their central lines. They each received a docto’rs bag of surgery ‘goodies’. Sam’s surgery is at 11:45 and Maddie’s is at 1:45. They will be very tired tomorrow night and probably sore at the incision site. Our WOOD TV 8 friends came with us for this appointment and filmed.
I was feeling a little down by the end of the day. I read from my Grace for the Moment book and the point of today’s reading was fear and faith. “At the beginning of every act of faith, there is often a seed of fear.” I think that is what I was feeling. Fear Max would not improve, fear for Maddie and Sam, fear that too much is happening too quickly. So I have to remind myself that this is out of my hands. We thank God and continue to let him lead the way.
Love,
Jane and Jeff
Monday, September 8, 2003 8:13 PM CDT
Dear Friends,
Busy day for the Trimpers. Max had PT in the morning. Barbara worked him hard. He worked on a ‘peanut’. It’s a large ball that looks like a peanut. He is working on balance.
In the afternoon Max had speech with Beverly. She had him categorize things and working on language.
While Max was doing speech, Jeff and I took Maddie and Sam to give more blood. We put cream on their arms that numbs the area for the needle. This worked well for Maddie. Sam had a tougher time. He was a wreck by the time he got in the chair. They are happy that this is the last time to get poked and they will have their lines soon.
Jeff and I met with two members from WOOD TV 8 tonight. They are going to be around this week to tape things for our four segments being aired in November.
Joanne and Grandma worked hard today. These kids are so lucky to have them.
The pool is getting colder. The weather was rainy this morning and sunny in the afternoon. We enjoyed both. North Carolina is beautiful and the people are so friendly.
We thank God for all the people who are helping us out so we can be here. People are taking care of our lawn, the building project, the mail, etc. I could go on and on. We could not be doing this without you.
Love,
Jane and Jeff
Sunday, September 7, 2003 6:21 PM CDT
Dear Friends,
We are so sorry that our friend Bret passed away yesterday. He was a sweet and courageous little boy.
As I look back at Bret’s page, I see the picture of him before cancer. I never knew Bret like that. The same was true for our friend Sam. We only knew these boys affected by cancer and the BMT treatments. Sometimes we forget that these were healthy boys living a carefree life. It’s a good reminder to take stock and appreciate all we have.
I’ve said it before, but it bears repeating. Watching these children die, getting to know these families and feeling their loss so deeply, these things have changed us forever. We know they are in heaven with healthy bodies, but it is so terribly sad too.
Grandma made it safely. Tomorrow will be busy. Tonight we pray for Bret’s family.
Love,
Jane and Jeff
Saturday, September 6, 2003 6:37 PM CDT
Dear Friends,
A slow Saturday for us. It was our first cool day. Max had OT today with his new therapist, Ellie. She is going to try to meet with him 4 times a week.
Maddie and Sam played all day. Maddie actually napped. Jeff watched the Michigan game. Joanne and I went out for lunch. Other than that, nothing new to report.
My mom, aka Grandma Strawberry, arrives tomorrow. We look forward to seeing her.
Joanne has been such an enormous help. We have a list of all the things we need to do with Max during the day to help him get stronger and gain back abilities. She does many of the things and it is great to have another set of hands.
So so many things to be thankful for. Hope you all have a great weekend.
Love,
Jane and Jeff
We are very worried about our friend Bret. His site is www.caringbridge.org/ia/bret .
Please include Bret in your prayers.
I'd also like to add a little boy named AJ to the list. He is in rough shape back in Minnesota and needs healing. His site is
www.caringbridge.org/mn/ajtoivola
When we were at the RMH, AJ was usually dressed as Batman. He is a little super hero. Thanks.
Friday, September 5, 2003 7:05 PM CDT
Dear Friends,
Before we left for Duke, my dad said, “I pray to God that he will tell us if this isn’t what we are supposed to do.” I thought that was a good idea so I added this to my prayers.
Every test, every meeting just continues to point us to transplanting these two kids at Duke now. We found out that their MRI’s look the same as they did six weeks ago. We are still early. They both have peripheral nerve damage so the disease has started. We thank God that we did not wait. We thank God for good matches for the kids. We thank God that their bodies are in good shape for transplant (no heart or lung problems, no hidden viruses, etc.).
Today Maddie had a nerve conduction test. Both Sam and Maddie had hearing tests. Their hearing was good.
Max worked very hard in PT. He knee walked across the room. He also met his new speech therapist, Beverly. She was very nice and he did a good job with her.
We are hoping the hornets did well tonight. We also need to add a Happy Birthday to Uncle Don.
Love,
Jane and Jeff
We are very worried about our friend Bret. His site is www.caringbridge.org/ia/bret .
Please include Bret in your prayers.
I'd also like to add a little boy named AJ to the list. He is in rough shape back in Minnesota and needs healing. His site is
www.caringbridge.org/mn/ajtoivola
When we were at the RMH, AJ was usually dressed as Batman. He is a little super hero. Thanks.
Thursday, September 4, 2003 6:04 PM CDT
Dear Friends,
It was a busy day today. Maddie and Sam were gone getting MRI’s all morning and part of the afternoon. Sam had to be sedated. It took him a long time to wake up. He came home and slept most of the day. Maddie did the MRI with out sedation. She laid so still. I think the nurses and technicians were impressed. I was.
While at the hospital, Jeff and Maddie participated in a radio-thon to raise money for Duke’s Children Hospital. Jeff shared our story on air and Maddie nodded. There were lots of people sharing stories about their kids. Duke has helped many families.
Meanwhile back at the apartment, Max had PT and went out and about with Joanne. When we got home, we did more exercises and school work with him. Maddie had a little kindergarten.
This morning, Maddie asked me if I got new cells when I was a kid. It is sad that they don’t know any different, but it will sure help them through this.
We had a long thunderstorm today. It was nice. There was lots of rain, lightning and thunder. Temps are in the 80's.
Hope you all had a good Thursday. Happy Birthday to Eric!
Love,
Jane and Jeff
Wednesday, September 3, 2003 4:55 PM CDT
Dear Friends,
Today Maddie and Sam had vision tests. Everything looked good. No pun intended. Jeff and I had to go and meet with our nurse coordinator to discuss what meds Maddie and Sam would be on. It was all pretty familiar.
We went swimming and did some school work. We thank God for Joanne tonight. She is a huge help and is absolutely spoiling the kids.
Love,
Jane and Jeff
Tuesday, September 2, 2003 6:22 PM CDT
Dear Friends,
What a day. It had its ups and downs. We are very tired.
Maddie and Sam had an early appointment at the Child Development Center at the University of North Carolina. We arrived at 8:00 and left close to 1:00. It was amazing how much they did with these kids. They were seen and tested by a physical therapist, a psychologist, a speech therapist, and a doctor. There was never a down moment. They told us a lot about each child’s development. There were some surprises. Maddie tested average on all tests. She had some mild problems with some of the motor tests. Throwing and catching the ball was a little troublesome for her. Sam displayed some troubles that the doctor considered peripheral nerve damage. This is the start of MLD. We were not expecting that. There are many ways to look at that. We thank God that we have Sam here and did not wait to start work up for a transplant. No one can tell us that God is not in charge.
Max had his first visit with his new physical therapist. She worked well with him. She saw lots of good stuff in him and is thinking big.
Max then went to the clinic and met Dr. Kurtzberg. It was about 5:00 in the afternoon. He was very tired. We were all very tired. However, we were not disappointed. She took a look at Max, talked with him and had him walk a few steps. She looked at his last lab report. She thought he looked good. She then told him to keep working hard so he could walk again and use his hands better. I teared up. I love the attitude here at Duke.
Some people will read this journal and feel bad for us. Others will join us in thanking God for good timing, thinking big in PT, looking good to Dr. Kurtzberg, and three kids who will affect many. We are worn out but forever hopeful.
Love,
Jane and Jeff
Monday, September 1, 2003 4:23 PM CDT
Dear Friends,
It was a quiet Labor Day for us in North Carolina. We went to the pool. It was a nice day with temps in the 80’s. Other than that, we didn’t do much.
Next week Maddie and Sam will do a neuropsych test, a vision test, a hearing test and another MRI. Maddie will have a nerve conduction test also. The following week we will prepare for surgery to get the lines put into Maddie and Sam and meet with Dr. Kurtzberg.
The plan is to be admitted on Sunday, September 14th. Chemo will start on the 15th. The transplant should happen on Wednesday, September 24th. We have to wait and make sure rooms are available. We are hoping they can both be admitted, but Maddie may have to go first by a few days. We will wait and see.
If all goes as planned(prayers, prayers, prayers), they should get out of the hospital around Halloween. Day 100 would be January 2nd. We warned Dr. Kutzberg that if all is going well we are going to start bugging her to go home by Christmas.
That is our general plan. Don’t hold us to any dates. We just have to wait and see. We thank God for the opportunity to try something to stop MLD.
Love,
Jane and Jeff
Sunday, August 31, 2003 5:46 PM CDT
Dear Friends,
We had a long and lazy Sunday. We hung out in the apartment for most of the morning. We took a little swim and then it started to storm. We watched some TV. Maddie and Sam went to the store with Joanne and me. We played camp out in the closet again.
A friend from Charlevoix came tonight. His name is Mike Fels and Jeff has known him a long time. He lives in North Carolina now, and we hope to see him often.
Other than that, there wasn’t much going on today. We hope all of you had a good Sunday.
Love,
Jane and Jeff
P.S. It is still raining. We are nice and snuggy and are enjoying it.
Saturday, August 30, 2003 7:08 PM CDT
Dear Friends,
Did anyone see 20/20 last night? They had a story on a little boy who had the ‘Bubble Boy” disease and had a stem cell transplant at Duke. Our doctor, Dr. Kurtzberg was in it quite a bit. It was a good story and seemed well done. The little boy is happy and well. We were glad we watched.
Today was a nice and quick Saturday. We were lazy in the morning and eventually got out of our jammies. We went for a drive around the area. We took Max and Joanne by the hospital and clinic. We went to Chapel Hill and saw some of the University of North Carolina.
After lunch, Maddie and Max took a nap. Joanne and I went grocery shopping. Jeff watched some college football. Sam played with his farm set.
In the afternoon we went swimming in the pool. Jeff and I went out for dinner. When we got home, Joanne and the kids were in one of the walk in closets playing camp out. They were having a great time. Joanne is incredible.
We have made some observations about North Carolina. It is very warm. But people here wear pants all the time and no one is ever in the pool. The bugs are huge. The people are very very friendly and polite. The service is great. And the ACC conference rocks! (At least that’s all we hear.) We can’t imagine what basketball season is like. Go Duke!?!?
Two more days of family fun. We thank God for every single day. We really love these kids.
Love,
Jane and Jeff
Friday, August 29, 2003 6:29 PM CDT
Dear Friends,
Hello from steamy North Carolina. We are having a relaxing Friday night and look forward to our three day weekend.
Sam had a busy day today. He had a nerve conduction test done this morning. He had an echocardiogram and a pulmonary function test done this afternoon. He was very good through all three tests but is always a little apprehensive when we start. Jeff, Sam and I took a tour of the BMT floor in the hospital. It brought back many memories of Minnesota.
Between appointments we tried to do some therapy/school stuff with the kids. Maddie is learning about the letter D. It is very different to try to teach your own child. Max did some reading and lots of stretching. He doesn’t like it, but we have to make him do it.
We went swimming tonight after dinner. Maddie and Sam are really getting to be good swimmers. Their lifejackets are off and they are diving down tot he bottom to pick up all the toys. It is amazing what they have started doing just this week.
It was a long week. We still feel good about what we are about to go through. Pastor Jamey, we really liked your words in the guestbook. These kids are certainly in the hands of the Great Physician. Hope all of you have a fun filled Labor Day weekend.
Love,
Jane and Jeff
PS I’ve told many of you about Baby Noah. I was able to meet him and his parents today. Noah is beautiful and continues to need prayers. I am so grateful I was able to meet them today.
Also our friend Bret continues to need prayers. It is such a hard road for all these kids, but the cancer kids face special issues. It is so hard to understand sometimes.
Thursday, August 28, 2003 3:27 PM CDT
Dear Friends,
Yay! We have Internet access in the apartment. We will try to make this a long one to make up for lost time.
Today we had a meeting with Dr. Kurtzberg. We met in a small room where their offices are located. They have a great train set on a small table and Maddie and Sam played with it while we talked.
We weren’t expecting any results back from tests we had done this week, but she had some for us. All the lab work looked good. They do not have any diseases waiting in their systems. For example, some people carry a CMV virus and never know it. That is one of the few that they check for. Maddie and Sam look good. Max was good too before his transplant. All other tests looked good except for a brain test to tell how the signals work when they hear. (This is the best I can explain this test. I wasn’t familiar with it.) They both came out slightly delayed. Dr. Kurtzberg believes this is because of MLD, but it is not significant at this point. It is just another indicator for us to get moving now and not wait.
That was the only thing on our schedule today. Maddie and Sam are swimming right now with Joanne. Max and I are sitting on the couch watching TV and enjoying the air conditioning.
Tomorrow Sam has the pulmonary function test and an echocardiogram. Maddie had these on Wednesday. Sam will also have a nerve conduction test tomorrow. Maddie has the day off and will do the nerve conduction test next week.
It says to expect rain this weekend. We will see. It is very hot right now. How can you miss this Carolyn? We have tickets to the Durham Bulls on Saturday. We will try to go.
Other than all that, we have been busy trying to make the apartment home. It is very nice and we have a lot more room than we did in Minnesota. We needed to buy silly stuff like magnetic clips for the refrigerator, baskets, etc.
We were already contacted by Max’s therapists down here. They will let us know when they are ready to start. Joanne has been keeping him busy though.
I am sure there is a lot I haven’t told you that I will think of later. Just know we are so thankful for your prayers. We continue to thank God for Max’s good health and the fact that we are here early with Maddie and Sam.
Love,
Jane and Jeff
Tuesday, August 26, 2003 5:21 PM CDT
Update 8/27
Hi everyone. We found a computer at the clinic and thought we would take advantage of it. Thanks for all the lovely notes in the guestbook. It means so much to hear from everyone.
Everything really is going well. The drive was fairly easy. West Virginia was beautiful. Our apartment is very nice and has lots of closet space. The pool has been wonderful and keeps us outside. It is terrific exercise for Max.
I thought I would start to feel anxiety when we arrived, but it really hasn't happened. We are looking at three weeks of work up before hospital time. Work up is going well. The kids get a little whiny towards the end of the day, but Jeff would probably say I do too.
It looks like there will be a good match for Sam and Maddie. Thank you, God.
If this isn't what we are supposed to do we really feel we will know. We are taking it a day at a time and have enormous expectations for these transplants. We pray for it all.
We hope to have internet in the apartment in the next couple of days. We will update more then.
Love,
Jane and Jeff
Good news and Bad news. Good news: Trimpers had a good day today. Bad news: Still no internet access so Sally is doing the update again. Both Maddie and Sam had a long session of tests. They had a BAER (some kind of brain test) and an EEG. They had to sit still for 3 hours. Maddie watched TV for a while and then fell asleep. They sedated Sam but he refused to go to sleep and the nurses were laughing at him. They were both brave and Sam only cried a little.
Tomorrow Maddie is having a Pulmonary Function Test and an Echo Cardiogram. Then on Friday it is Sam's turn and Maddie has the day off. Maddie and Sam had to do a 24 hour urine sample and it turned into a competition to see who could collect the most urine. I believe Maddie won the contest though those who know Sam well may be surprised to hear it.
Jane and Jeff took a drive through campus today and Jane and Joanne got out to do a little shopping. It was 96 degrees and humid there today so they spent some time in the swimming pool. They are meeting with Dr. Kurtzburg on Thursday. They have a 3 day weekend this weekend and hope to do some sight seeing. Hopefully they will be back on-line by this weekend.
Monday, August 25, 2003 6:58 PM CDT
Sorry to disappoint everyone but it is just Sally here again. I talked to Jane and they sound like they had a very full day. They met the BMT doctors, Maddie and Sam had blood drawn and had EKG's. They hope to have internet access later this week.
Sunday, August 24, 2003 8:00 PM CDT
This is Sally filling in again. The Trimper convoy has made it to North Carolina. They were very happy with their apartment. It sounds spacious and they are close to the pool. Some friends from Chesaning stopped by to visit and bring them dinner. They have a very busy day tomorrow filled with many appointments. It may be a few days before they have their internet up and running so if you don't see an update don't worry. Tonight I thank God for their safe arrival.
Friday, August 22, 2003 7:50 PM CDT
Dear Friends,
We had a busy and beautiful day today. We were able to spend more time outside. Jeff and I finished up some last minute details. Max didn’t have any therapies. Joanne came over tonight and we are ready to head out tomorrow morning.
Carolyn asked for a shingle and back update. The shingles haven't really bothered Max. There is no sign of them at all, but he is still on Acyclovir to prevent a reoccurence. Jeff's back is good, but golfing hurt a little. Not enough to make him stop playing.
We are filled with many emotions. It is very different from the trip this past December. We are not scared. We aren’t facing the unknown. We will take it all a day at a time and see how the next two and a half weeks play out.
Many things are going through my head. We won’t write tomorrow but will hopefully be able to on Sunday.
Love,
Jane and Jeff
“There’s no place like home.” Dorothy
“Nothing is impossible.” Willy Wonka
“I believe I can fly.” Max Trimper
“In God we trust.” Jeff and Jane
Thursday, August 21, 2003 6:26 PM CDT
Dear Friends,
We had an earlier start today. Max was awake a little before 7:00. His eyes still looked very tired. He had speech and Physical Therapy today. He did a nice job and we had to say goodbye to two more therapists. We look forward to seeing them again - hopefully as soon as January.
We had a visit from Mrs. Deacons. She brought a bag full of activities for us to do with Max. Thanks Tammy.
We also had a visit from the Mains. They brought the kids a gift. They love them. Thanks, Amy.
For dinner, we had friends over. They brought the meal. Thanks guys.
Busy day full of fun. It reminds us of how much we will miss home and how important it is that we go so the kids can have a long lifetime of days like this. Thank you, God.
Love,
Jane and Jeff
P.S. Our friend Bret is in need of prayers still. Thank you for helping them with prayers and guestbook notes. We have an amazing prayer army.
www.caringbridge.org/ia/bret
Wednesday, August 20, 2003 7:59 PM CDT
Dear Friends,
Today was a productive day. Grandma and Grandpa Strawberry (aka Bob and Claudia) came over early this morning and took the kids for the day. They had a good time in Chesaning - especially the swimming. Thank you.
With the kids gone, Jeff and I got a lot done. We are almost entirely packed. We learned after Minnesota not to take too much. We will be a little lighter this time. We also settled some more of the house plans. We even went out for breakfast. Thanks to the Simpsons for the nice surprise.
Uncle Mark came over for a visit. So did the Smiths. It was nice to see them but always hard to say good-bye.
Young friends of ours delivered some money they had earned from a lemonade stand to us to help kick a little MLD butt. Either it was very expensive lemonade or their customers were very generous. Thank you to the Postema’s. What a great family.
Hope you all had a good day. It had to have been awfully warm in the schools. We thought of you often and even discussed how it was weird not to be back at school.
We continue to stay positive and we thank God for that!
Love,
Jane and Jeff
P.S. More ‘Let’s Kick MLD in the Butt’ shirts have been ordered. If anyone else wants one just email Penny Barber at barber1@cmsinter.net .
Tuesday, August 19, 2003 7:52 PM CDT
Dear Friends,
First day of school today. We didn’t get up until after 8:00 (Jeff 5 am). I guess it isn’t all bad not going back.
Max had OT this morning. He did well and Sarah, the OT, has seen improvement in his moving of his eyes (tracking) and resting on his elbow on the floor (building upper body strength). Yay!
The Greenville Daily News came this morning and took some pictures of our family and interviewed Jeff and me. Shelly, the reporter is a doll. The article may appear Friday.
After lunch, Max had to go to Dr. Crittenden and have his blood labs drawn. He is so brave. He didn’t shed a tear and even laughed while the needle was still in his arm. We are so proud of him and reminded daily how strong he is.
After the appointment, we rode on the golf cart, watched some TV, and laid out on a blanket.
The WOOD TV 8 cameraman came by later in the evening to get a little bit more footage. Andy is so nice and the kids are so relaxed around him.
We hope the teachers and students had a great day. The first day is so exciting. As Pastor Jamey said, “We have our own curriculum to cover right now.” Tonight we thank God for Dr. Crittenden. He has done a lot for our family and we are so appreciative. We pray tonight for our friend Bret.
Love,
Jane and Jeff
PS We have our address for Durham, North Carolina aka DUKE!!
855-1B Ivy Meadow Lane
Durham, NC 27707
This will be our location as of August 24th. When Maddie and Sam enter the hospital we’ll include that address.
Monday, August 18, 2003 7:13 PM CDT
Dear Friends,
We didn’t wake up this morning until 7:45. That’s an hour later than our recent norm. How ironic that it was the first day back for teachers and our teaching friends had to start their early routine.
Max had OT and PT today. He did well with both was a b it whiny during OT. We had to say good-bye to the therapists because these two won’t be back again this week. I think Max will really miss them. His other four therapist will come later this week.
Tonight the kids had to go to a friend’s house because WOOD TV 8 came and did the interview with us. They are hoping to have a 4 part series on us in November.
Thank you to those of you who visited Bret’s site and for those who are praying for Bret. They think his leukemia is back and are already discussing a second transplant. He is very sick right now and really needs prayers. www.caringbridge.org/ia/bret His mother Michelle was so nice to us at the Ronald McDonald House and got to know Marcia quite well. She was always cooking and baking. They are a very nice family and have certainly dealt with their fair share of stress.
Tonight we are again reminded to be so thankful for how well Max is doing and that there are no signs of graft vs. host disease. Thank you, God. We pray Bret is healed soon.
Love,
Jane and Jeff
Sunday, August 17, 2003 7:21 PM CDT
Dear Friends,
A busy Sunday. Church was so nice this morning. They said a special prayer for us and we appreciated that so much. Prayer is so powerful.
Brennan, our builder, came over and we discussed the plans. It felt good to have some of the details worked out before we leave.
Jeff went and played some golf in the evening with some friends. He had a good time. He even said he played pretty well. We’ll have to check with the other boys about that.
The kids just hung out and relaxed. Max fell asleep again in front of the TV. It was a calm day for the kids.
We hope you all had a good weekend.
Love,
Jane and Jeff
I just checked a Caring Bridge site of a friend, and he really needs our prayers. His name is Bret and he has a horrible form of leukemia. He has been transplanted and has continued to suffer from many complications. He was admitted tonight with fluid in his lungs. Please pray for Bret.
www.caringbridge.org/ia/bret
Saturday, August 16, 2003 7:45 PM CDT
Dear Friends,
It’s me, so forgive all the typos and bad english. I aint no good like Jane.
We had a great day down and Bill and Sally’s house. We all got together so the kids could play together for the last time until Christmas (we hope). All the kids spent most of the time in the pool, while the adults swam and had a few laughs. Kids are SO entertaining!
Sunday will be a day of rest around here. Max was pretty tired all day and they should all sleep well tonight.
Well, not as good as my lovely wife, but we had a great day with family and look forward to a busy week.
I deleted most of the guestbook. Had to clean things up before we head out.
Jeff and Jane
Friday, August 15, 2003 8:28 PM CDT
Dear Friends,
We had a morning visit from a friend of ours and her two adorable granddaughters. They brought us some cool animals. They even took a ride on the golf cart with us. Thanks Jeanne, Mikayla, and Maddie.
Max had PT in the pool this morning. His heart wasn’t really in it and they stopped after about 35 minutes. Fridays tend to be his tired day. He took a two hour nap after lunch. When he woke up, we went back to Gurecki’s to swim some more with all three kids. It felt great on such a hot day. Thanks Ginger.
Tonight we had Erin and Scott babysit while we went and had dinner with friends. We were a little nervous about leaving them. They had a great time. I hate to leave them but know it is so good for them to be without me. The feeling is just like having newborns again. Thanks Erin and Scott.
As you can tell, we have many people to thank tonight. This is just one day. There are so many people doing so many things for us. Thank you.
Love,
Jane and Jeff
Thursday, August 14, 2003 6:49 PM CDT
Dear Friends,
Another busy day. Max had PT with a new therapist through our rehab group. He really liked her. She is coming again tomorrow and will take him in the pool. He ate 2-3 scrambled eggs for breakfast, a small salad for lunch, and 2, yes 2 McDonalds hamburgers for dinner. It has been a while since I updated his food. He isn’t much of a snacker, but he eats a good meal.
Some other things fell into place today. I cleared my classroom out for the new teacher. She was very kind and let me leave a lot of stuff behind. It was a little sad to know I won’t be back this year. I really love my job.
Jeff mowed the lawn. We cleaned the house because WOOD TV 8 was going to come tonight for an interview. They ended up canceling because of the power outages. We can’t argue with that. Their intent is to do a longer piece on us. They may even come down to North Carolina. We’ll let you know how it progresses and when it will air. It won’t be anytime soon.
The kids did some swimming at a friend’s house tonight. Max laughed the whole time. He likes to flip himself face first in the water. He loves it.
It was a hot day today. It was hard to play outside much. The heat seems to tire all the kids out (me, too).
Thanks for all the shirt orders. It was very nice how many we got. We are forwarding the orders to Penny Barber and she is sending the shirts. Thanks! You can still let us know if you’d like one.
We are stressed and busy but never forget how many things for which to be thankful.
Love,
Jane and Jeff
Wednesday, August 13, 2003 6:17 PM CDT
Dear Friends,
A beautiful summer day. Max had speech and PT (in a pool) today. He did a nice job. It continues to amaze me how little he complains. He is a good worker. He must have been worn out because he fell asleep in front of the TV later in the day.
Maddie, Sam and I went out for lunch today while Max was doing speech. We played at home and after PT we went to Anderson and Girls to feed the animals and get an ice cream cone. It was a hot day and makes you realize how nice and cool it has been this summer. We saw our friend Kay and were able to see pictures of her new grandchild. What a gorgeous boy!
This morning, Jeff, my dad, and Eric removed some decking to get ready for the addition. The kids and I supervised from the golf cart.
There are some ‘Kick MLD in the Butt’ shirts left over from Old Fashioned Days. If anyone would like to buy one just email us and we will forward your order to the Barbers or Fikes. They even said they could ship them. There are adult sizes and children sizes left. Jeff’s email is at the bottom of our Caring Bridge page.
We hope you all had a beautiful day too. We thank God for good health - especially Max and pray that the kids can stay virus free until North Carolina.
Love,
Jane and Jeff
P.S. Jon just came for a visit. The kids love their Soupy Poopy.
Tuesday, August 12, 2003 7:23 PM CDT
Dear Friends,
Max started this morning with some OT. They did a lot of stretching and exercising. She works a lot with his eyes. He is doing a good job.
I was invited this morning to the women’s fellowship at church. It was very nice. I spoke about our situation. The women are wonderful and I gained strength just by going and being around such caring people. Even the beautiful Anna Sisson was there. She is a legend among our guestbook readers. Thanks ladies.
The rest of the day was just the usual stuff. In the evening I went to another party for women. It was great, too. Good food, good conversation, beautiful home. Thanks M.E.
Now when I was off having fun and being inspired, Jeff was taking care of the kids. He is such a good dad and husband.
We would also like to thank the wonderful people who dropped off the cake for the kids tonight. They loved it. We made a great big mess!
Hope you all had a good day.
Love,
Jane (and Jeff)
Monday, August 11, 2003 7:29 PM CDT
Dear Friends,
Wow. Where did the day go? I have to admit you could feel a little stress around here. There are many phone calls to make, errands to run, etc.
Max had OT and PT today. Both therapists commented on how hard he worked. They had him stretching, exercising and walking with the walker.
Jeff and I were able to sign on the loan papers at the bank. We are ready to roll with the addition whether we are here or not. It will be so nice not to have to carry Max upstairs and have the extra space.
Sam and I went to Mount Pleasant this afternoon. Maddie, Max and Jeff played games and took golf cart rides.
Hope you all had a good time today. Joanne bought me a shirt that says “Life is good.” I love that.
Love,
Jane and Jeff
Sunday, August 10, 2003 5:45 PM CDT
Dear Friends,
Lazy Sunday. We did go swimming at a friends, rode in the golf cart and did laundry. Jeff returned from up north. He had a good time and said the party for Jon and Polly was beautiful.
On one of our many rides in the golf cart, I started talking to the kids about North Carolina. We hadn’t said much to Sam yet. I was really nervous about how he would react. He didn’t handle giving blood well. I started talking to him about going in the hospital, getting a line put in, losing his hair, etc. He got all excited about being bald. That was it. No questions, just excitement about being bald. Kids are amazing.
In two weeks, we will be in North Carolina. It is hard to imagine leaving home again. I have to admit though that Minnesota is a blur.
Hope you all had a good weekend. We had a good one.
Love,
Jane and Jeff
Saturday, August 9, 2003 5:33 PM CDT
Dear Friends,
Although it was a busy day in Stanton with Old Fashion Days, we stayed home. Now that we know Max’s immune system is still down, we aren’t very eager to take him into crowds. The youth group from church was going to be in the parade and sell “Kick MLD in the Butt” shirts, pencils and pins. We hope they sold many and had fun. We appreciate all the effort - especially from the Barbers and Fikes.
WOOD TV 8 came this morning and taped the kids at play. They are thinking about doing a longer segment on us. The cameraman was here for 4 hours and he almost became part of the family. The kids really like him (and so did Kippy).
Jeff went up north today for Jon and Polly’s post wedding bash. I’m sorry I couldn’t go but hope Jeff has a great time knowing the kids are ok at home.
I actually read from a book for fun today. It felt good. I think I even relaxed a little. The kids are happy and that is good enough for today. Thank you, God.
Love,
Jane and Jeff
Friday, August 8, 2003 5:48 PM CDT
Dear Friends,
Max is home. He had a great time at Camp Strawberry with cousin Molly. They were such good friends before MLD hit. We were a little worried about how they would do together with the changes in Max. Kids are awesome and they had a good time. He initiated more conversation on the way home than I have heard him do in a long time. It makes us realize we need to make sure he has lots of experiences - many without us. Thank you Grandma, Grandpa and Joanne for taking such good care of him.
Maddie and Sam had fun playing today. We are trying hard to keep them away from crowds so they are healthy for our trip to Duke. They went to Ginger’s house for a while today so Jeff and I could pick out some things for the new addition. We are funny shoppers. It doesn’t take us long to decide and we aren’t hard to please. “Yep, that looks good.”
We hope all of you have a good weekend. Thanks for all the kind words in the guestbook.
Love,
Jane and Jeff
Thursday, August 7, 2003 7:07 PM CDT
Dear Friends,
Max left for Camp Strawberry at Grandma and Grandpa Rhode’s house in Chesaning. It is so strange without him here. Maddie even commented about missing him. He is having fun and we know it is good for him to be away from us.
We have made all the official connections that we needed to do so we are ready to share what we know about our plans. We are leaving on August 23rd to head to Duke University in North Carolina. (Pending board approval about our jobs.) We arrive on the 24th and will be staying in an apartment about 10 minutes away from the hospital. Maddie and Sam will start a ‘work up’ period of two weeks where they will go through a whole bunch of tests - very similar to what Max had to do. After that, Maddie will be admitted and will start chemo to prepare her body for a cord blood transplant. Sammy may also be admitted at the same time and they may go through it together, but we are not deciding that until we go down to Duke. Although Maddie’s MRI showed some start to the disease, the tests they do during our initial two weeks will tell us even more about where she is in the progression - and also Sam.
Joanne, aka Aunt JoJo, is taking 4 months off of work (pending board approval) to join us and take care of Max. We will set up all his therapies down there and he will be very busy. There is an outdoor pool at the apartment complex so they will be able to do therapies in the water (and play too).
On the home front, we are having an addition added to the house that will give us two bedrooms downstairs and a handicap accessible bathroom. We are hoping that this will be completed while we are gone.
Between setting up the construction, talking with work places, setting up the apartment, preparing for another transplant, and praying, we are very busy. We can’t possible thank everyone enough for all the work and effort put into the benefits. We never thought we would need the money so soon. Thanks to you money stress is very minimal. Having Joanne come with us makes it possible for us to remain as a family and give Max the best. We thank God for your generosity.
Love,
Jane and Jeff
Wednesday, August 6, 2003 7:55 PM CDT
Dear Friends,
Max had three therapies today. He started with OT. They played a game and Max had to hold himself up while laying down to turn over cards. Hard stuff. He then had an hour of Speech. They read some Captain Underpants and wrote a story. He then had PT in a pool. He worked hard but enjoyed it in the water. The rest of the day was pretty normal - golf cart rides, tv, and a board game.
Maddie and I went shopping for new pajamas for the hospital. Maddie is handling the news about going in the hospital well. She got two sets that button down the front. They are silky and she looks like a princess. I am very proud of all three of my kids, but Maddie is showing strength that is truly amazing. We have been so proud of Max through out the past year. I believe he has been modeling amazing character for Maddie and Sam. Sam doesn’t know a whole lot yet, but neither do we. We just keep adjusting as we go along. We don’t want them to be unaware or scared.
We are still working out our plan and will let you know details very soon.
We continue to pray that Max stays healthy and continues to improve. We pray that Maddie and Sam have safe and prosperous stem cell transplants. We pray that they are not scared. We pray for 100% healing. We thank God for the hope and the strength that has gotten us this far.
Love,
Jane and Jeff
Tuesday, August 5, 2003 5:42 PM CDT
Dear Friends,
Another busy day. Max had PT this morning. He did a lot of work. He and I went to Grand Rapids in the afternoon to look at pieces of technology that would help him. There was a keyboard and a mouse that were easier to use. He also got some nighttime braces while we were there. They are a cool blue. He wasn’t too excited about having to wear braces at night, but I think he will be a good sport.
Maddie and Sam played in the yard and went to KMart with Jeff. We had to replace some of the things we lost with the lightning. We love home owner’s insurance.
Nothing else new to report. Please keep praying for all three kids.
Love,
Jane and Jeff
Monday, August 4, 2003 6:55 PM CDT
Dear Friends,
Busy day today. We had OT, PT, cable guys, etc. coming in and out of the house. We were calling home owners insurance, fax machine repair, etc. on the phone. No matter how busy we are, MLD is always lurking in our heads.
Max was very tired today. He was tired yesterday too. We are hoping he can perk up a bit tomorrow.
Maddie and Sam kept busy playing today. It rained for a bit, but we still managed to have golf cart fun when it was clear.
Please continue to pray for 100% healing for all three kids. We know it is possible.
Love,
Jane and Jeff
Sunday, August 3, 2003 6:38 PM CDT
Dear Friends,
We are with Internet tonight. We will be able to slow down and tell you all what is going on (as we currently know it).
We didn’t go into much detail about the Hunter’s Hope visit. It really is a well run organization. They are hoping to help fund a myelin research lab in the future. They work hard to help Krabbe families and those with other leukodystrophies. On much of their literature they include Jeremiah 29:11: “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” That really says it all.
Jeff and I had a nice time in downtown Buffalo. Much of the time was spent deciding what to do next. We were able to go out to a nice dinner and spent time talking about how blessed we are that Max is doing well. We seem to forget to slow down and really see how much we have accomplished with him. Thank you God.
Today I went to church. Jeff mowed the lawn. We had our family meeting at 4:00. It went very well. Jeff and I think a stem cell transplant for Maddie and Sam is in the very near future and we have the family support to help us through it. Thank you.
At church and again today with our family, we spent some time reflecting on how different things are from last October and November when we were told there was nothing we could do for our kids. How can we possibly not feel blessed? Our son Max has done very well with a stem cell transplant (so far), and his body is making Arysulfatase A. We have a possible treatment for the two small children. They could very well do even better than Max. We have people all over the country working on myelin repair. We have friends and family who are giving us amazing support. We thank God.
Love,
Jane and Jeff
Saturday, August 2, 2003 3:54 PM CDT
Dear Friends,
We are back from Buffalo. It was a very good trip. We learned a lot about Hunter's Hope. They are very well organized and have wonderful goals to meet that will help all children with leukodystrophies. We spent the day with Jacque, Hunter's Grandma. We were even able to meet Hunter and his parents, Jim and Jill. They were all so nice to us and we were so glad we made the trip.
Joanne and the boys did well at home. They kept busy. Our house did get hit by lightning on Friday. We lost a couple of TV's, a couple of VCR's, and a CD player (and our Internet again). I have to admit that I am starting to feel a little unlucky.
Maddie had a good time at Camp Strawberry. She will be home tonight and Sam goes to CS tonight.
We have our family meeting tomorrow. We thank God for our safe trip home and for all the fun the kids have had. Thank you Aunt JoJo for taking such good care of the boys.
Love,
Jane and Jeff
Thursday, July 31, 2003 5:26 PM CDT
Dear Friends,
We are up and running tonight. We have had crazy busy days this week. There have been lots of phone calls to make and lots of things to take care of. Jeff and I are still talking about our options and will let everyone know what we decide. We may take action this fall (sooner than we had expected).
Max had nothing planned today. He was able to stay home and did a lot of things with Jeff. They exercised, walked a little, rode in the golf cart and played.
Maddie and Sam had to go and give blood today. They don’t like it (big understatement). We can’t imagine going through a transplant with these two. They are not afraid to express their displeasure and can go on and on and on. We admire their strength and determination but fear it too. :)
Maddie left for Chesaning. She is doing ‘Camp Strawberry’ with cousin Grace. She was very excited and will be home Saturday.
Jeff and I will fly out of Lansing tomorrow morning to go to Buffalo and meet with the Hunter’s Hope group. We are looking forward to it. They have done some great stuff for the leukodystrophies. We will come home on Saturday. Aunt JoJo came tonight to take care of the boys. She is great.
We are having a family meeting on Sunday. We are really needing our family to help plan out how to make everything work this fall and meet the needs of all three kids. We are so lucky to have so much support. We thank God nightly for our families. Step two will be hitting up our friends again. We have become high maintenance friends. I often think how easy it would be to try to separate from the burden of it all. No one has. Everyone is so faithful and wonderful. We are very thankful. Our kids don’t realize it yet, but someday they will.
Love,
Jane and Jeff
P.S. Thank you so much for the guestbook entries. They really encourage us.
Wednesday, July 30, 2003 12:25 AM CDT
Dear Friends,
So sorry for the missed update. It is actually early afternoon on Wednesday. We are still having connection problems with our computer so this will be the update for the day.
Max has had two very good days. He had PT yesterday morning. He also had an appointment with his physiatrist (rehab doctor). It was pretty uneventful. Yay! We like uneventful. He had speech this morning and he is doing PT in the swimming pool at a friend's house. I am actually using their computer while he works.
His foot feels better and the shingles aren't as itchy. He is feeling pretty good and looks handsome.
Maddie and Sam are having summer fun. Jeff surprised us all with the golf cart that you saw in the picture. It is fun and really enables Max to be a part of things going on outside. We have a fort and trails and now he can ride around. He loves to push the gas pedal when we least expect it.
We are busy talking and making decisions about Maddie and Sam. They will have blood drawn tomorrow. There are two pieces of information that we choose to focus on. 1. We are not too late. 2. The transplant done early enough can stop the disease. In the back of our minds a mortality rate lingers. It is never far away. We are so thankful for prayers and are relying heavily on them. Thank you.
We will try to update tomorrow night. Hopefully our lovable Apple will be willing to cooperate.
Love,
Jane and Jeff
Monday, July 28, 2003 6:53 PM CDT
This is Sally filling in again. Jane and Jeff are having technical difficulties. They had a nice day unpacking and doing laundry. They are feeling good about decisions they have to make. They will write again tomorrow. (Hopefully)
Sunday, July 27, 2003 8:36 PM CDT
Dear Friends,
We are home again. It always feels so good. We had a nice time in Charlevoix and it is always good to see the Trimper siblings.
We did get a piece of bad news when we arrived home. We heard back from Duke and they had a different read on Maddie’s MRI. They saw ‘definite disease’. The doctor assured us that we were not too late but had better explore our options.
I am going to start venting a little now and let you in on a few of my thoughts. You may want to back out now.
One of the most frustrating things about dealing with MLD (and I would assume all rare diseases) is the lack of information and the inconsistency between medical professionals and facilities. It is so hard to be so scared and worried yet be put in the position to make decisions where there are just best guess estimates on what is going to happen. Our children's’ lives are truly in our hands. I don’t feel blame for this or feel that the doctors aren’t working hard enough or aren’t smart enough, etc. - I just feel frustration. I had no idea what other parents had gone through. I didn’t realize there were so many things not answered.
That leads me into the next topic. I was asked a couple of months ago, “So, are you really religious now?” I didn’t really know what to say. I didn’t feel like I knew enough to be considered among ‘the really religious’. People who know me well know that my journey in faith has not always been easy. I was full of questions and doubts. Jeff and I had always talked about going to church again but never seemed to do it. Finally last August we did. I remember feeling such strong emotions as I sat there each Sunday. I remember feeling that I was ‘back’. Then in October, we found out about Max. Since that time, I have learned a lot, read a lot, and listened a lot. I have grown in my faith. Today after talking to the doctor, I left to get the dog from the kennel. On the drive, I was feeling the frustration over who to trust, what to do, etc. I know there is only one we can trust. We have been trusting all along. We will continue to pray to God to help us get through this and ask that He will heal our children. So, am I really religious? Well, yeah, I think I am. I thank God for that.
So, every day can bring something new. We don’t know what to do with Maddie. We’ll do a lot of talking. God gave us a brain and a heart with which to make decisions and we will. It’s not going to be easy, but we can do it.
Love,
Jane and Jeff
Friday, July 25, 2003 6:22 PM CDT
Dear Friends,
Just another quick note. We are having fun. It was a beautiful day in northern Michigan. We took the three kids to the carnival in town. They all won a toy and rode rides. There weren't many rides for Max, but he had a good time. We also took Max on a boat ride. Tomorrow is the parade and we'll swim.
We won't write again until Sunday. We'll keep the kids busy and laughing.
Love,
Jane and Jeff
Thursday, July 24, 2003 4:19 PM CDT
Dear Friends,
We made it to Michigan. We arrived in Charlevoix at about 1:00 this afternoon. It is their big festival weekend and all of Jeff's brothers and sisters will be here. The kids are already having fun with aunts and uncles.
Yesterday's meeting went well except for one small test. Max's blood test that tested his immune system came back low. Dr. Krivit said it was nothing to worry about as far as Max's health or transplant, but he doesn't think he will be able to start school in August. We mentioned that Max is currently tapering off his immune supressant drug. We are hoping his level will rise after. We'll have him tested again in a month. They had suggested three months, but we don't want to wait. They agreed. He will also need ot keep wearing his mask in large groups and especially the doctor's office. We can handle that. Our answer has always been to keep him away from large groups unless we are really up for some fun (Mall of America).
We are so thankful tonight for friends and family. Gos has blessed us with good news this week. We have no limits for our hope for these three children (and all people with MLD).
Love,
Jane and Jeff
Wednesday, July 23, 2003 7:26 PM CDT
This is Sally filling in again. I got a call from Jane at 8:00pm and they had just stopped in the U.P. on the way to Charlevoix from Minneapolis. All is going well. They were going to get some dinner and then crash.
Tuesday, July 22, 2003 3:28 PM CDT
Dear Friends,
We are back at the Apple store again. We had a lot of the afternoon off and came to ride some rides at Camp Snoopy. Max had only two short appointments today. They were pretty uneventful. The two little guys are heading to Charlevoix today. We'll update again tomorrow. We are so thankful to God for so many things today that we simply can't pick just one tonight.
Love,
Jane and Jeff
Monday, July 21, 2003 6:50 PM CDT
Dear Friends,
I am going to make it another quick one tonight. Our Internet in our hotel room is out. We are in the Apple store at the Mall of America. Nice computer.
We have good news and bad news. The good news is really good and the bad news isn't too bad.
Let's start with the bad. Max had to be poked three times for blood. It hurt. He also had a nerve conduction test that was painful. The worst is over and the next couple of days will be easier. He is a tough kid. We are heading to the toy store next.
The good news was Dr. Krivit and the neurologist looked at Maddie's and Sam's MRIs. They said they looked perfectly clear. Praise God. We think the plan will be that they will continue to be checked every three months. Dr. Kurtzberg told us at Duke that if we can do a stem cell transplant on Maddie and Sam before they are symptomatic, they have a chance to be 'normal'. We were afraid we were too late, but things look good. When white matter appears, we have to make quick decisions. For now we have three months and hopefully more. Praise God.
Tears are now filling my eyes in the center of the Apple store. Thank you so much for your prayers. We are very thankful tonight.
Love,
Jane and Jeff
Sunday, July 20, 2003 6:46 PM CDT
Dear Friends, I will make this quick tonight. We have Internet through our tv. It is a different experience. Technology is wonderful. We made it to Minnesota in 10 hours. That is good for us. We didn't hit any bad weather and Max was a remarkable traveler. Maddie and Sam were able to ride the Showboat last night with Cousin Molly. They had a great time. We thank God for getting us here safely. We pray for good news this week. Love, Jane and Jeff
Saturday, July 19, 2003 6:36 PM CDT
Dear Friends,
What a beautiful day. Max, Maddie, Sam and I went to Grandma and Grandpa’s house in Chesaning to swim, play and ride the golf cart. Max and I were dropping Sam and Maddie off while we go to Minnesota. Aunt JoJo was there so Max got a lot of attention. He had a great time in the pool and didn’t complain about his foot.
We are packed and ready to go. We have the tv set up in the car for Max. We have some anxiety over the trip, but look forward to being in Charlevoix when it is done. Max has some spending money (Thank you, JoJo, Grandma and Grandpa.). We’ll make the trip as fun as we can. Maddie and Sam will have a great time for sure.
Max’s appointments for the next three days are a blood draw, meeting with Dr. Krivit, an appointment with a neurologist, a nerve conduction test, a pulmonary exam, and a neuro-psych test. No MRI this time. We will be able to leave Wednesday afternoon or late morning.
We’ll update while we are gone. Thank you for your continued prayers. We thank God for our prayer warriors.
Love,
Jane and Jeff
PS Last night for the Chesaning Showboat. We heard to show is great. It is the first time in a long time we didn't go. We heard Captain Bob was 'the berries'. Randy Travis wasn't too bad either.
Friday, July 18, 2003 6:08 PM CDT
Dear Friends,
Today was MRI day. We spent many hours at the hospital. Maddie was able to do it without sedation. Sam tried, but started moving towards the end. They decided to sedate him. He fought hard to stay awake, but he finally relaxed. I think many of you will be disappointed, but we didn’t get any results today. We have the actual MRI pictures with us. They make no sense to us, but we’ll show them to Dr. Krivit in Minnesota and a set was sent to Duke. We pray for no white matter. If that isn’t part of the plan, then we pray for very little so a transplant can stop the disease very early.
Max stayed home with Aunt Sally today. Thank you to Aunt Sally (and her family). He had OT in the morning.
Other than that, it was a lazy afternoon and evening. Sam was still looped up from his drugs and he couldn’t even walk safely. They said that would be gone tomorrow. We all stayed put and watched movies to help him take it easy.
Thank you so much for the prayers. They mean so much. Please keep them coming. We will face many challenges in the next week and beyond. Max, Jeff and I are heading to Minnesota on Sunday. Maddie and Sam will be shipped between families. We’ll all be back together again by next Thursday.
Thank you to the "Kick MLD in the Butt!" supporter who stopped by tonight.
Love,
Jane and Jeff
Thursday, July 17, 2003 5:26 PM CDT
Dear Friends,
We had a nice family day today. We read some books, played a game, went outside, took a drive, etc. Max’s foot continues to hurt him. I would say it was better today though. With everything that could go wrong, a sore foot is nothing.
Someone in the guestbook asked how Maddie and Sam are handling what is going on. They know very little. We spent some time today preparing them for the MRI. They are a little worried about that. I can’t even imagine taking them in for the work up for a BMT. We take it a day at a time and see what happens and keep mentioning it to them a little at a time.
We continue to be optimistic and hopeful. Faith keeps us charging ahead. We are so thankful.
Love,
Jane and Jeff
Wednesday, July 16, 2003 8:34 PM CDT
Dear Friends,
We had a nice day today. Max had speech and PT today. He was a bit more lively than he has been the last few days but still not himself. His foot felt a bit better but still hurts when he puts weight on it.
Maddie and Sam played both inside and outside. We had some men here getting rid of a damaged tree for us. The kids enjoyed watching the action. We also had an accident in front of the house. No one was hurt. Yay! It was a busy day.
We actually have nothing planned for tomorrow. Sam and Maddie will get MRIs done on Friday to see what is going on. We pray for good results - very little or no white matter. We thank God for a good day.
Love,
Jane and Jeff
Wednesday, July 16, 2003 8:34 PM CDT
Dear Friends,
We had a nice day today. Max had speech and PT today. He was a bit more lively than he has been the last few days but still not himself. His foot felt a bit better but still hurts when he puts weight on it.
Maddie and Sam played both inside and outside. We had some men here getting rid of a damaged tree for us. The kids enjoyed watching the action. We also had an accident in front of the house. No one was hurt. Yay! It was a busy day.
We actually have nothing planned for tomorrow. Sam and Maddie will get MRIs done on Friday to see what is going on. We pray for good results - very little or no white matter. We thank God for a good day.
Love,
Jane and Jeff
Tuesday, July 15, 2003 7:55 AM CDT
**An update**
Sorry. I know we are updating at weird times. Tomorrow night we'll be back on schedule. Max's doctor appointment went well. The x-ray didn't show anything serious. It still hurts, but we'll take it easy on him. Lazy day today. Sam actually fell asleep in front of the tv.
Dear Friends,
We made it. What a day! Up at 3:30 a.m. Home by 10:30 p.m. Needless to say, we are not used to those hours. It was all worth it. It was a good trip.
We met with Dr. Kurtzberg at Duke University. She is the head of their transplant program (Pediatric BMT). She knew a lot about the storage diseases and cord blood transplants. She stressed to keep going strong with PT and OT and that improvement can happen. They have seen improvement start even 2-3 years post transplant. We haven’t heard the word improvement much at all. She gave us something much needed and much prayed for: a little hope. She also stressed that we need to seriously consider a transplant for Maddie and Sam as soon as possible. Jeff and I have tough decisions ahead, but we are feeling more hopeful then we did 6 months ago.
The kids had a good time at home with Grandma and Grandpa. Thanks so much Don and Marcia. Max’s foot is still hurting. He is complaining a lot and not at all his happy self. He is going to go and see Dr. Crittenden right after lunch and hopefully have xrays done. We pray he is alright and will not need a cast which would really halt physical therapy.
Well, that’s our quick update. We thank God that he sent us to Duke University.
Love,
Jane and Jeff
P.S. We’ll add to this tonight and let you know how Max’s appointment went.
Sunday, July 13, 2003 7:27 PM CDT
Dear Friends,
Today was an interesting day. Jeff was at Sally’s house this morning helping her paint. The kids and I loaded up and went their to go swimming and pick up Jeff. We had a very good time in the pool. Max was having so much fun rolling around and moving. It felt great. Jeff and I were handing Max off in the pool, when he hurt his foot. We aren’t sure what he did, but it hurt badly. We weren’t sure if we needed to take him to the hospital or not. A call to Doctor Grandpa said we didn’t. His foot hurt on top and was only a little bit swollen. We have iced it for the rest of the day. Poor guy! We think we made the right decision. He’s sound asleep already for the night.
Some of you have responded about the Kelley’s story on 48 Hours. We thought CBS did a nice job. We didn’t realize all they had went through before even arriving in Minnesota until we saw it with our own eyes. We are so proud of them. It was nice to see the nurses and the doctors in Minnesota. They all took care of Max too. Baby Cooper was one of the highlights of our time on the BMT floor and clinic visits. He is such a cute and happy baby.
We are getting ready for our trip to North Carolina tomorrow. Grandma and Grandpa Trimper just arrived to watch the kids tomorrow. We will probably not update until Tuesday. We get home pretty late tomorrow.
We pray to God that Max is healthy tomorrow while we are so far away. It is very hard to leave.
Love,
Jane and Jeff
The Charlevoix Home Tour that is giving part of the benefits to us is going to be held on Saturday, July 19th. 10:00a.m.-4:00p.m. Marcia brought her ticket down for us to see. There is a nice picture of Max inside. Thank you to the chairpersons, Tricia Petrosky and Kendall Campaigne.
Saturday, July 12, 2003 6:02 PM CDT
Dear Friends,
What a nice day. We had a nice and easy start. Then Maddie, Sam and Max went to Cheryl’s house to play while we had our Team Trimper meeting. Cheryl took such good care of them and they had a great time-especially Max. He has really been wanting to go to her house. Thank you so much Cheryl!!
Our meeting went very well. Some new research bits cam out that we can check out. Everyone worked so well together and knows sop much. It is amazing what a group of people will collectively know. We are lucky to have so many people working for our cause. A big push for the group lately is sending a variety of researchers of pack of information and a thank you from us for doing their work. We have generated quite a list and will finish getting the packets out. We are going to keep the media blitz’s going and have some more meetings to set up.
It was a beautiful day and the kids were able to come home and play outside. We thank God for a great day. Now it is time to get the kids to bed so we can watch our friends the Kelleys on 48 Hours.
Love,
Jane and Jeff
P.S. Sorry about the pictures. Things aren't working on this end. We'll keep trying.
Friday, July 11, 2003 8:04 PM CDT
Dear Friends,
We had a very nice day today. Max had OT right away this morning. It was his therapist, Diane and her hadn’t seen her in quite a while. He exercised his eyes and arms.
Jeff and I got a lot of things done for Team Trimper today. We are sending information out to researchers.
Our friend, Kathy from Georgia stopped by with her kids and one niece in the afternoon. It was fun to have them over. They are beautiful and friendly kids.
Other than that, we had three very tired kids tonight. I can hear Maddie and Sam still playing in their beds. I think they will be asleep soon. We thank God for sweet dreams.
Love,
Jane and Jeff
Thursday, July 10, 2003 6:32 PM CDT
Dear Friends,
We had a nice and rainy day. Max and Jeff went back to Mary Free Bed to get his new braces. They are big. He has to wear them for one hour a day three times a day. They try to build up the length of time. His Spiderman braces were really starting to hurt. We hope the new ones work well. On the way home they stopped and saw our friend Kathy from Georgia. She and her kids were visiting the Lignells in Grand Rapids. Jeff said it was great to see her and her three kids. We’ll see her again up north later in the month.
Maddie, Sam and I ran some errands in the rain. It was probably a very boring day for them. Jeff and I continue to love those boring days and thank God for each one.
We talked with our media contacts today. They all seem to be trying to make it happen for us. They are so nice.
Hunter’s Hope contacted us today also and we are hoping to maybe team up with some contacts. We will see what happens.
Team Trimper meets again on Saturday. Jeff and I are going to North Carolina on Monday to meet with a doctor. We are planning a trip to Buffalo to meet with the Hunter’s Hope people. All of this is thanks to you. The support has allowed us to pursue every lead. Thanks! We also head back to Minnesota for Max’s six month check-up on July 20. Busy month.
Thanks for the Ladies’ Home Journal contacts. Keep them going if you can.
Love,
Jane and Jeff
Also their was an entry in the guest book about the home tour in Charlevoix. It is on July 19th. Part of the funds will go to our cause.
Also, Patty: That was Danny Tufts, Stuart and Lisa Swartzmiller in the picture.
NEW MEDIA BLITZ!!!!!!!!!!!!!
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected Ladies Home Journal as the media target to be contacted. If you have a few moments this week, please contact them at
lhj@meredith.com This is their email address. You will have to use your email account and send a letter to them. You could also choose to send one in the postal mail. The address is
Ladies Home Journal
125 Park Avenue
New York, NY 10017
Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
Wednesday, July 9, 2003 6:25 PM CDT
Dear Friends,
We had a nice and quiet day today. Max had a lazy morning but had all three therapies this afternoon. Jill, his speech therapist, said she hadn’t heard Max talk so much. She thought he looked great. Beth and Sarah, PT and OT, took him outside and had him ride his bike, walk and even try to hula hoop.
Maddie went to a make-up swim party at her friend Abby’s house. She had a good time this afternoon. Thanks, Jill. Sam just played around and even watched a movie.
We didn’t list the time for 48 hours this Saturday. We looked on the CBS website and it is 8:00. Our friends are the Kelleys. They are a great family.
Baby Hope: Saturday, July 12 at 8 p.m. ET/PT Correspondent Susan Spencer takes you on two emotional journeys -- with people who are going through great lengths to either save a life or create one. The choices they make may raise some tough questions. Don't miss an all-new 48 Hours Investigates.
Also, we did start a new Media Blitz yesterday. It is to Ladies’ Home Journal. We’ll include the information on the bottom.
One other thing we forgot to mention yesterday is a phone conversation we had. We spoke to a very nice lady from Hunter’s Hope. You may have heard of that organization. It is named for Jim Kelly’s (Pro football player) son. His son has Krabbe’s disease, a different leukodystrophy. This nice lady was actually Hunter’s grandma. We are planning a trip to Buffalo to meet with this group and try to support them any way we can.
Coincidentally, the 48 hours show will be about our young friend Hunter Kelley and Hunter’s Hope is named after a different small friend, Hunter Kelly.
Thanks for looking in on us. We thank God that so many people care.
Love,
Jane and Jeff
NEW MEDIA BLITZ!!!!!!!!!!!!!
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected Ladies Home Journal as the media target to be contacted. If you have a few moments this week, please contact them at
lhj@meredith.com This is their email address. You will have to use your email account and send a letter to them. You could also choose to send one in the postal mail. The address is
Ladies Home Journal
125 Park Avenue
New York, NY 10017
Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
Tuesday, July 8, 2003 7:26 PM CDT
The picture above was taken at Disney World in November.
Dear Friends,
Look out! We are back online. Our Internet is working again and we are ready for a long update.
As we wrote earlier, we had a great time up north. Max had a lot of fun and we realized that although we miss things he used to be able to do, he can still do so much. That is what they call quality life. It took him a day to adjust. We always ache a little for the grandparents. They are not only worried about their grandkids, but hurt for their child as well. All four grandparents handle the situation so well and stay tough for us. We appreciate all they do to make their grandchildren's (and children’s) lives wonderful.
Today Max was back at therapy. His PT came over and did some exercises with him. We thought he did wonderfully considering he hadn’t been active in over a week. His shingles continue to decorate his middle. He is feeling no discomfort. Thank you God and prayer army.
Maddie and Sam played and laid around today. Aunt JoJo came for a visit. It was a nice easy day at home.
This Saturday on 48 Hours they are doing a story on some friends of ours from Minnesota. Their son Hunter has Fanconi Anemia. They had a baby named Cooper who’s cord blood was used to transplant Hunter. They are a courageous and generous family. Tune in if you get the chance. They story may have conservatives a bit ruffled, but we really believe some views on cells may be changed if they were to meet the adorable Cooper and the strong Hunter. We look forward to seeing the show.
Some people have asked me why the wedding was emotional. It was small and simple. It was held in a beautiful chapel and Polly’s little boy walked her down the aisle. The groom and bride looked so happy. It was a terrific ceremony. I think everyone was a little teary.
Well, you have probably read enough. Tonight we are so thankful for you. We thank God for the prayers that go out every day for these kids.
Love,
Jane (and Jeff)
NEW MEDIA BLITZ!!!!!!!!!!!!!
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected Ladies Home Journal as the media target to be contacted. If you have a few moments this week, please contact them at
lhj@meredith.com This is their email address. You will have to use your email account and send a letter to them. You could also choose to send one in the postal mail. The address is
Ladies Home Journal
125 Park Avenue
New York, NY 10017
Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
Monday, July 7, 2003 5:11 PM CDT
This is Sally filling in for the Trimpers. They are having a problem with their internet connection. They arrived home safely and are all tuckered out from their weekend up north. Max is feeling fine and eating well.
Sunday, July 6, 2003 8:53 AM CDT
Dear Friends,
Sorry that we didn't update last night. The kids had a great day yesterday in Charlevoix. They even went to the beach. Max had a good time with Grandpa in a blow up boat.
Jon and Polly's wedding was beautiful. It was very emotional. We are so happy for them both.
We will update again Monday night. We'll include a media blitz. Jeff has taken some great pictures too.
Love,
Jane and Jeff
Friday, July 4, 2003 8:14 PM CDT
Dear Friends,
We did make it up north today. Max has not thrown up at all today. He is eating a little and is very happy to be at Grandma and Grandpa's house.
Maddie's eye looks perfectly normal. She still wants to take Benadryl. She had a little before bedtime.
Sam has had fun playing outside. He and Maddie splashed around in a small pool and on a slip 'n slide.
Max hasn't been to Charlevoix since Christmas. With all first time visits, it is always a little tough. You remember the last time and how things have changed so much. The good news is you get the first time over.
Hope you all had a good Fourth of July. We heard the latest news on the soldiers in Iraq and our prayers are with all the soldiers and their families.
Love,
Jane and Jeff
Thursday, July 3, 2003 6:19 PM CDT
Dear Friends,
Thanks for all the advice about Neurontin. It really helps to hear other people’s experience.
Max was throwing up again this morning. He looked much better afterwards. He did well for the rest of the day. He didn’t throw up again and he only took an hour nap. He didn’t have that drugged up look today. He isn’t feeling much pain from the Shingles. We are VERY thankful for this. He will say every once in a while that his back hurts. Thank you so much for the prayers.
Overall, we call this a good day. We thank God for each and every one of them. Thank you so much for the prayers. They are answered.
We are heading up north tomorrow for the wedding of two very, very good friends. We will continue to update for those of you who are interested.
Have a great Fourth of July. Our country has had quite a year!
Love,
Jane and Jeff
Wednesday, July 2, 2003 7:54 PM CDT
Dear Friends,
An interesting day today. Max was looking better. He drank a lot this morning. He ate a bit. He ate even more at dinner, and then threw up all over. Another problem he had today was after nap. He just never perked up. He was very groggy. We think it was one of his meds. It has a warning about drowsiness, but we didn’t think it would hit him this hard. Has anyone ever taken Neurontin?
Meanwhile, Our lovely Maddie came downstairs this morning with a swollen eye and caked on blood all over her face. Her eye was a bit swollen yesterday but worse this morning. The blood was a middle of the night nose bleed she must have had. She looked rough but was perky. Some Benadryl and ice took care of the eye and she was better. It is still a bit swollen, but it will hopefully be even better tomorrow. With her missing tooth, she looked like she had been in a big battle.
Sam is fine. Full of energy and fun. We hope Maddie’s eye is back to normal and Max gets more energy and a happier belly.
Thank you for the prayers.
Love,
Jane and Jeff
Tuesday, July 1, 2003 5:27 PM CDT
Dear Friends,
I just read yesterday’s entry. There were quite a few spelling mistakes. I’ll blame that on two things. We don’t have a spell check on our computer and I was very tired. I hope my high school English teacher did not read it.
Max was feeling a little better today. He did throw up twice this morning. He has not thrown up since. He hasn’t eaten either, though. He has been drinking Coke. We talked with our nurse coordinator in Minneapolis, and she said some people feel nauseous but start to feel better by the second day. We hope that happens for Max. He is not complaining about pain except for his tummy. He is one tough cookie.
Maddie and Sam had a lazy day. We forgot to include them in yesterday’s entry. Joanne took them to Chesaning to play and swim with their cousins. They had a great time. Thanks Joanne.
Our family members are still talking abut how nice the benefit was. There was one more thing that we wanted to mention. Jeff and I were so impressed with how the male half of the organizers gave credit for the success to their wives. Consistently when talking with the men, they mentioned how hard their wives worked.
Thanks for the prayers. We have really been lifted by them.
Love,
Jane and Jeff
Monday, June 30, 2003 10:46 AM CDT
QUICK ADDITIONAL UPDATE:
We were able to bring Max home tonight. Unfortunately he has been vomitting all day and night and is very tired. We are hoping he is less nauseous tomorrow. Thanks for your prayers. Please keep them coming.
Dear Friends,
I thought I’d better give another quick update. For those of you who missed last night’s posting, Max is in the hospital with the shingles. We had been warned that they were possible sometime during a year post transplant. When we got home from Cahrlevoix last night, Joanne told us that Max had some bumps on his back. We peeked under his pajamas and saw two small areas of little blisters. We knew what they were immediately. We called Dr. Krivit in Minnesota. He told us it was an emergency and to get Max to the hospital right away. He said that shingles are painful but more importantly, they can lead to other problems and we needed to give him a drug (I can’t remember the name. Lack of sleep??) intraveneously as soon as possible. With hands shaking yet again, Jeff, Max and I headed out. We went to Greenville, and they had just what we needed and started him on the IV at midnight. He was getting his second dose when I left his morning and will get a third this evening. The doctor in Greenville is going to call Dr. Krivit and if they both agree that that was enough Max will be sent home with the pill form of the same med tonight.
Are we worried? Yeah, a little. Right now things are under control, but we worry what may happen in the next few days. Please say a prayer for Max. The pain of shingles breaks our hearts of course, but he is tough and will handle it well. It is the other complications that concern us. We are thankful we caught it early. Thanks JoJo.
Now, sit back because I have a lot to write about the benefit. WOW! It was a very well organized event. Castle Farms is beautiful and we are very thankful that our organizers were able to use it. There was a lot of space and it is a remarkable setting.
Everything was so well done: The silent auction, the live auction, the music, the food, the volunteers. It is hard to believe the organizers were not professional. Equally impressive was the generosity of all the people there. Not only with donations, but with kind words, hugs, and support. We have said it a hundred times, but people are so good in this world.
Again I find myself saying thank you when it hardly says what I feel. Thank you to the organizers. Thank you to the people who came out. Thank you to the people who donated items. Thank you to the people who donated facillities, food, drink, etc. Thank you to out Stanton friends, Chesaning friends, and old college roomates who made the trip north.
It was also familiar names on the website. Toni and Linda, it was a pleasure.
When thanking some of the organizers, I heard a couple of people say, “It’s the least we can do.” Please don’t sell yourself or the generosity short. The reality is what the benefits have done is perhaps saved our kids lives. I am not exaggerating. The money raised could pay for the plane ticket that finds the person who can help. The money could be what pays for the media trip that leads us to someone who holds answers for us. The money could be that little bit that leads the researcher to the answer. It could save our kids lives, maybe improve them, and perhaps effect thousands of others. Thank you.
We thank God for the incredible gerosity and support we have recieved form our small town homes.
Love,
Jane and Jeff
P.S. I am sure I will think of things I forgot. We’ll probably write more tomorrow. Jeff will probably put two cents in, too.
Sunday, June 29, 2003 11:30 PM CDT
First, what a great day. A huge thanks to all the people who helped put on the benefit and made it out to the castle. Second, our day didn't end so great. We got home and had to take Max to the hospital. Joanne noticed some spots on his back. It's shingles. I left Jane and Max at midnight and I'll head back first thing in the morning. We hope we caught them before they get too bad.
More about the benefit and Max soon.
Jeff
Saturday, June 28, 2003 6:36 PM CDT
Dear Friends,
A quick note tonight. We had a good day. Max continues to stay away from the fevers, rashes, etc. Thank GOD!
We went to Aunt JoJo’s house today for a quick visit. She is coming to our house tomorrow to watch the kids while we go to the Charlevoix benefit. Jeff went up north today to see friends, hopefully help, etc.
Hope you all had a good Saturday. We got quite a bit of rain. Yay! Maybe our grass will be green again.
Love,
Jane
Friday, June 27, 2003 6:32 PM CDT
Dear Friends,
A quiet Friday. Max’s OT cancelled this morning so we had a free day again. We went to visit a friend in Carson City who used to work with Jeff. The kids had a lot of fun at Sue’s house. They played in her play house and had a picnic. Max was really into it too. They played Go Fish and got out her big tub of Legos. Thanks Sue.
Fox 33 out of Cadillac called last night. They saw a flyer about us. (I’m not sure if it was the original flyer or one for the Charlevoix benefit.) They want to come over Tuesay night and do a story on us. We’ll let you know how it goes.
Have a great weekend.
Love,
Jane and Jeff
Thursday, June 26, 2003 5:50 PM CDT
Dear Friends,
Another busy day for Max. He and Jeff went back to Grand Rapids this morning. Max had his legs wrapped to make casts for new orthodics. When they got home, Max had speech and one of his teachers, Mrs. Deacons, came to do some fun stuff with him. He was tired when all was finished.
Maddie and Sam went back to Cheryl’s for a good part of the day. They had fun. They love to play with their friends.
A friend, Dana, sent us an article today. It was from the June issue of Biography magazine. It was about a family’s battle with Hurlers disease (type MPS 1). Although Hurlers is quite different from MLD, it is also a disease caused by one missing enzyme. The article talks about that family’s battle and the new drug that is being used for their disease. It is a good article if anyone is interested and can give you more perspective on our ‘war’. Battles can be won.
We are thankful for the rain. It felt great and sure cooled things down. We hope you did too.
Love,
Jane and Jeff
Wednesday, June 25, 2003 6:40 PM CDT
Dear Friends,
Another lazy morning - busy afternoon. Max had PT after lunch today. He worked hard for an hour and did a good job. Maddie and Sam went to Cheryl’s for the rest of the afternoon so Jeff and I could take Max to the physiatrist. We met with Dr. Bloom and he was very nice. He didn’t want to put Max on medication for his tone or spascity (spelling??). He wanted to wait an dsee what happens in the next couple of months. We were glad to hear something somewhat positive. We go back in 5 weeks.
Maddie and Sam had fun at Cheryls. She kept them after her usual hours. They enjoyed having her all to themselves and playing in her house. She is so good to our kids. Thanks Cheryl. (Cheryl has done daycare for us since Max was just a few months old.)
Hope you all had a good day.
Love,
Jane and Jeff
Tuesday, June 24, 2003 7:48 PM CDT
Dear Friends,
It was a lazy morning with too much T.V., but we think we made up for it in the afternoon. Max had OT at noon today. Sarah, his therapist, did something with Mr. Potato Head and some ‘theraputty’. After they were finished, we headed to Chesaning to spend the afternoon in Grandma and Grandpa’s pool.
We have not heard Max laugh like that in months. He had such a good time and was not scared at all of the water. He stood so much easier in the pool but held on to us tight. He kept wanting to go under water. He was so happy. How can we not thank God for that?
Besides swimming, we went on the golf cart, picked strawberries, and ate. Max actually ate two ice cream filled popsicles. We think the swim made him tired.
Maddie and Sam had a great time too. They had already been there this year, but Jeff and I hadn’t seen them swim. It is amazing how much they have changed from last summer. Sam has no problem walking around in the shallow end with no life jacket. Maddie (with life jacket) was jumping off the diving board in the deep end. They are growing quickly.
It was a very nice afternoon. Thanks Grandma and Grandpa. We hope all of you were able to stay cool on this warm summer day.
Love,
Jane and Jeff
A few more things.:
Tomorrow Max is going to go to a physiatrist. That is a doctor who specializes in rehabilitation. We think he will put Max on a medication to reduce his tone. We’ll let you know how it goes.
Also the Charlevoix benefit is Sunday. We look forward to seeing all you northerners!! For more information go to www.trimperchildren.org.
I also wanted to mention that we do have an account going through the Saginaw Community Foundation. All the money that is put into that account must be given away to charitable organizations. For us that is MLD research. Team Trimper is looking into the best possible people to give that money to. We are looking at people doing research in gene therapy, myelin repair, and enzyme replacement. If you know anyone looking for a write off, please send them to our website (www.trimperchildren.org). The information is all there. We hope to make a big difference.
Also, we will start a new media blitz soon. I'll talk to Jill and Jeff. We are hoping that something comes of their NY trip, but we will still blitz.
Monday, June 23, 2003 6:38 PM CDT
Dear Friends,
Happy Monday. Max had a busy day. He had OT right away this morning. Both therapists came and they made a brace for his left hand. He was very good about keeping his hand still while they formed the brace.
We disappeared for a while and ran some errands with the kids. We came back and had Crazy Bread on a blanket outside for lunch.
Max had PT after lunch. He was very tired but did the stretches with the therapist.
He took a quick break and then we went to see Rugrats Go Wild. The kids really liked the movie. Maddie seemed to laugh the loudest. There were probably only 6 other people there. It was nice to not worry about germs. We saw Max's music teacher, Mrs. Bowen on the way out. He enjoyed seeing her.
We blew up two small pools today. Maddie and Sam had a wild time with them. Max put his feet in and eventually sat right in the smaller one.
Right now they have their jammies on and are watching TV in our bedroom. I don’t hear yelling, so things must be good. We thank God for that!
Love,
Jane and Jeff
Sunday, June 22, 2003 6:53 PM CDT
Dear Friends,
Church, mowing the lawn, quick trip to KMart, a ride/roll/walk on the trail, playing outside.
That pretty much sums up our day. Throw in a small nap for Max. Hope you all had a great Sunday. There are so many things to be thankful for.
Love,
Jane and Jeff
Saturday, June 21, 2003 7:10 PM CDT
Dear Friends,
Nice day today. Jane went shopping with Claudia today. She really enjoyed the break in routine. Aunt JoJo came over for the day to help with heavy lifting. She kept Max very busy. They were outside for much of the day. Sam and Maddie liked having JoJo around too. She and Jeff took the kids for ice cream. Jane came home in time for baths.
We forgot to mention earlier this week that we had have other company. Jon and Polly broke into our house left a nice gift and note, watered out flowers, sat on the porch for a while, and then left. We are sorry we missed them. We are also now locking the laundry room window.
Hope you all had a nice Saturday.
Love,
Jane and Jeff
Friday, June 20, 2003 5:46 PM CDT
Dear Friends,
Thank you again for the kind words in the guestbook. We have said it many times, but you all do so much for us.
Max’s OT called this morning and cancelled. A free day! We decided to go to John Ball Zoo in Grand Rapids. We have been there many times, but still enjoyed it. Max wanted to see the nocturnal animals and the penguins. Maddie wanted to climb the stairs of the waterfall. Sam really liked the lions. It was a beautiful day to be outside. Max even saw one of his classmates. He was shy about seeing her but happy to see a friend.
We had a peaceful day. We thank God for the good news He brings to other Caring Bridge sites. We are thrilled for those families. It also inspires us and helps build hope.
Love,
Jane and Jeff
Thursday, June 19, 2003 6:05 PM CDT
Dear Friends,
We had a busy morning. The man in charge of Max’s wheelchair came at 8:00 this morning and put the new foot rests on. The wheelchair is quite fancy and looks to be comfortable. It is very heavy though.
After the wheelchair, Max had OT and PT at the same time. They went outside and worked with bubbles.
Jeff and I had a team meeting with all the therapists after his OT and PT. It was very hard to sit and listen to the changes they have seen in Max. We started to talk about what we thought his needs for school would be in the fall. It was all hard to think about and just kept reminding us of what Max could do just 6 short months ago. By the end of the meeting, Jeff and I both needed time to gather our thoughts and find other things to focus on.
Max had speech next. He and his speech therapist wrote a story together. We didn’t have a chance to read it, but look forward to hearing his thoughts.
Maddie and Sam rode bikes, played outside, etc. We were able to go to the trail. Maddie is very quick on her bike and loves to call us slowpokes. Max was able to go in his wheelchair and enjoy the view.
It was a tough day. It is tough to keep the faith when everything around you seems to tell you to give up. We continue to hold on.
We thank God for patience!
Jane and Jeff
Wednesday, June 18, 2003 6:27 PM CDT
Dear Friends,
It was a good day. Maddie and Sam came back from Grandma and Grandpa’s house. They brought home 4 quarts of berries and they are delicious. Maddie could not look cuter now that she has a tooth missing. Sam went to the barbershop in town when he got home and got his haircut. He is looking pretty cute, too. Max had PT this afternoon.. It was hard work. A few tears were shed. Tonight we lit Jeff’s traditional Father’s Day gift (cheap junky fireworks). We sat on the deck and laughed a lot. It was very nice.
We want to tell everyone again how inspirational and kind the notes in the guestbook are. Many times when we are low, the words on the entries help us. Tonight I copied three recent ones that meant a lot.
Sometimes the entries make us laugh.
"What a drag it is getting old"
-Mick Jagger
Sometimes they say exactly what we feel.
"When God is going to do something wonderful, He begins with a difficulty. If it is going to be something VERY wonderful, He begins with an impossibility"
And sometimes they say something that we add to our nightly prayer.
"Oh, Lord, do not delay!"
Thanks to Matt, Carolyn, (2 of those quotes were theirs) and all of you who have taken such good care of us. We thank God for you.
Love,
Jane and Jeff
A special thanks to you too, Anna. You make me smile every morning.
Tuesday, June 17, 2003 6:28 PM CDT
Dear Friends,
Quiet day here in Stanton. Max had PT in the afternoon. He did a variety of things with us. We read books. We played UNO, Crazy Eights and Secret Square. We went outside and layed in the hammock chair. In the late afternoon, we went to see Finding Nemo again. It was a good day.
Maddie and Sam stayed at Grandma and Grandpa’s house for another night. We will see them tomorrow. We did talk on the phone. They were having fun swimming with their cousins today. The biggest news was that Maddie had lost her first tooth. She literally lost it. She doesn’t know if she swallowed it or if it fell in the pool. I am sure that even without the proof, the tooth fairy will leave her something. I was so excited to hear about her tooth. About 10 minutes later, I realized it was evidence of her getting older. That doesn’t feel so good. I just know that I am so excited to see her tomorrow. We’ll put a good picture of the missing tooth and the new hair-do on tomorrow.
Jeff’s back is still hurting, but he is better with each day. He needs to take it easy for a while.
Max asked this morning if he was still sick. We talked about how he couldn’t be around sick people, large crowds, etc. until fall. We talked about how his legs and arms are working differently. We talked about all the things we are doing to help that: PT, OT, meds, doctor, etc. We told him most of the MLD in his body was taken care of, but some of it still exists. This seemed like the best answer, and it seemed to give him what he needed. We talked about prayer today too.
Tonight we thank God for providing us answers to Max’s questions.
Love,
Jane and Jeff
Monday, June 16, 2003 6:12 PM CDT
Dear Friends,
We had a good day today (except Jeff). Max had OT and PT today. He worked hard, ate well, and took a roll on the trail.
Maddie and Sam went to Grandma and Grandpa Rhode’s house for the night. With Jeff’s back injury, it really helped lighten the load here. We know they will have a great time. Strawberries are in season so hopefully they will bring home enough to make shortcake.
Jeff is still hurting, but seems better than yesterday. I think it will be a while before he is comfortable moving or carrying Max. He has been able to rest and hopefully he will heal quickly.
I have to throw in a funny thing Maddie said today when we were driving over to meet Grandma. She asked, “Mommy, when babies come out are they naked?” I laughed and told her yes. She said, "O.K. So the doctors must get them dressed. " For the rest of the day, I have tried to envision them coming out in a onsie.
Tonight I thank God for Maddie helping me to see things in a different light. She’s done that her whole little life. That’s a good thing.
Love,
Jane
Sunday, June 15, 2003 6:05 PM CDT
Dear Friends,
Happy Father’s Day. It was a beautiful sunny day here in Stanton. Our day was not quite as beautiful.
Max did fine. He even went for a roll on the trail with Jane. Maddie and Sam had a good day. They even went for a bike ride on the trail. Jane did fine. She went to church and took the kids on the trail. Jeff, on the other hand, hurt his back in the morning moving Max (while I was at church). By the time I got home, he couldn’t get out of the chair. He was on the couch for the rest of the day and still in much pain by evening. Not the best of Father’s Days for Jeff.
It reminds me of Jeff’s first Father’s Day. Max was about a month and a half old. Bill and Jeff went golfing in Chesaning. I received a phone call saying that Jeff had gotten hit in the head with a golf ball. I had to go to the emergency room at the hospital to pick him up.
For a man who is a wonderful father, he sure gets lousy Father’s Days. My friends have teased me often about a comment I made about Jeff when we first had Max. “Jeff is darn near perfect.” (The actual quote doesn’t use darn.) Well, I still stand by my assessment. He is a great husband and a terrific father.
Happy Father’s Day to Bob and Don. We love you. We certainly thank God for you both.
Love,
Jane
Saturday, June 14, 2003 7:18 PM CDT
Dear Friends,
Happy birthday, Sam. Our little guy turned four today. He had family over to celebrate. He blew out the candles on his tractor birthday cake. His presents were great. He received all the things he likes from tractors to Polly Pockets. It was fun to see the cousins running around the yard. Max got lots of attention. He did say that it bothered him to not be able to move around with all the other kids. It hurts to know that and inspires us to work even harder.
It was a beautiful day in Stanton. We thank God for Sam’s first four years.
Love,
Jane and Jeff
Friday, June 13, 2003 6:45 PM CDT
Dear Friends,
Jeff came home around 11:30 last night. Their flights went smooth and they felt good about their trip. All three of their meetings led to good advice (don’t get an agent, the email blitz idea is fine, etc.) We are waiting to see if anything develops from the meetings. We will let you know right away if something happens. Jeff and Jill both felt that they were well prepared. Their press packets were helpful. They did a great job. Thanks guys!
Max threw up his scrambled eggs this morning. He seems to vomit about once every week and a half. We aren’t sure why, but he bounces right back. He had OT this morning. That was his only therapy (which was probably good planning because he is very tired by Friday). He took a small nap today. He rode his bike for a little while and watched Jeff work outside.
Maddie and Sam played, watched TV, etc. It was a pretty lazy day. Jeff caught up on the lawn. Jane went shopping for Sam’s birthday tomorrow. Our baby is turning 4!
Other than that, the weather turned nice later in the day.
We thank God for Jeff and Jill’s safe return.
Love,
Jane and Jeff
Thursday, June 12, 2003 6:00 PM CDT
Dear Friends,
Max started his day early with PT and OT teaming up on him at 8:30 a.m. We had to hustle around to make sure Max had eaten breakfast, taken meds and was dressed by 8:30. Maddie and Sammy went to Cheryl’s house to play with friends. Max’s teacher, Mrs. Deacons, came over and did some activities with him around noon.
It was another dreary day, and we didn’t get outside. We are ready for some sun.
Jeff and Jill called. They did a bus tour. They had lunch with one of their contacts. They were very happy with their trip and are eager to come home. We are eager for them to arrive.
The three kids are down in the basement right now with the lights turned out having a movie theater. They have their popcorn bowls and their drinks. They are all snuggled under blankets. It is such a funny feeling for me. It all seems like ‘normal’. This is actually what they would have been doing before October 25th hit our family. It is the first that I have felt this since that day.
We thank God for three kids snuggled together watching a movie.
Love,
Jane
Hello to all who read here. I am writing on behalf of the Charlevoix Coalition Against MLD (CCAMLD). We are the group planning the auction on June 29th at Castle Farms of Charlevoix. We wanted to get some info to all of you who care so much for Max & family. A question has been asked concerning out-of-town bidding. We are very sorry we cannot accomodate everyone who wishes to participate, but we decided this would place more on an already full plate. We suggest contacting someone in Chx to bid for you, or simply be an event sponsor. Speaking of sponsors, if anyone out there wishes to be an event sponsor you can mail any amount to CCAMLD, %Sam Supernaw, P.O. Box 448, Chx 49720. Our sponsor list is growing. Thank you to all who have already become a sponsor. You are all helping to reach our goals. Also, if anyone wishes to attend, send $25.00 per ticket to the same address with return address info and we will mail tickets to you. We are providing food, soft drinks & entertainment, as well as a cash bar. The entertainment will be recorded for a cd, which will be sold to raise more funds. If anyone has any questions about the auction or how you can help, please call (231) 547-9661 and ask for Sam. Again, thanks to all for caring so much. We look forward to seeing all of you at the event.
Wednesday, June 11, 2003 6:26 PM CDT
Dear Friends,
We had a nice Wednesday. Aunt JoJo spent the night so we were able to spend the morning with her. She gives the kids a lot of quality time and it is so appreciated.
Max had OT and speech today. They worked him hard. Joanne took him outside to do PT on his bike. He also went out later and walked with his walker and enjoyed his time outside. After dinner, he even ventured down into the basement playroom with Maddie and Sam. He showed some interest in some of the toys and had Maddie hand them to him. I went down after cleaning up and they all sat on a couch-like thing we have. They kept tipping it over and laughing. It was pretty funny.
Both Jill and Jeff called me separately tonight. They both said the same things. The three women they met with (People, ABC and NBC) were all very pretty and young and VERY nice. They were able to give Jill and Jeff good advice. On the phone, they both seemed happy with their trip and felt it was a valuable use of time. Jeff sounded ready to come home. He misses the kids. If you have ever gone anywhere with Jeff, you know he gets about missing the kids and thinking he should be here. I’m hoping Jill and Jeff can actually do some fun New York things before heading home tomorrrow night.
I taped David Letterman last night. I didn’t see our media team there, but maybe Jeff can can point them out. There was a good crowd shot. It was a good show regardless.
We continue to ask for healing. We continue to ask for three miracles. We thank God for providing hope and strength each day.
Love,
Jane
P.S. Jeff is in charge of photos. He also has the digital camera. He'll update as soon as he gets home. Sorry for the same old pictures.
Also this was posted tonight in our guestbook. I am assuming it is from Sam. Hi Sam. It has additional information about the Charlevoix benefit. Jane
Hello to all who read here. I am writing on behalf of the Charlevoix Coalition Against MLD (CCAMLD). We are the group planning the auction on June 29th at Castle Farms of Charlevoix. We wanted to get some info to all of you who care so much for Max & family. A question has been asked concerning out-of-town bidding. We are very sorry we cannot accomodate everyone who wishes to participate, but we decided this would place more on an already full plate. We suggest contacting someone in Chx to bid for you, or simply be an event sponsor. Speaking of sponsors, if anyone out there wishes to be an event sponsor you can mail any amount to CCAMLD, m Supernaw, P.O. Box 448, Chx 49720. Our sponsor list is growing. Thank you to all who have already become a sponsor. You are all helping to reach our goals. Also, if anyone wishes to attend, send $25.00 per ticket to the same address with return address info and we will mail tickets to you. We are providing food, soft drinks & entertainment, as well as a cash bar. The entertainment will be recorded for a cd, which will be sold to raise more funds. If anyone has any questions about the auction or how you can help, please call (231) 547-9661 and ask for Sam. Again, thanks to all for caring so much. We look forward to seeing all of you at the event.
Tuesday, June 10, 2003 6:14 PM CDT
Dear Friends,
It is time for another top 10 list from the Trimpers.
Here are the top 10 reasons the Trimper’s had a good day.
10. Grandma Trimper was here for most of the day.
9. Hamburger Happy Meals for a mid afternoon snack
8. Max had PT this morning.
7. Jeff and Jill made it safely to New York City.
6. Aunt JoJo came over this evening.
5. She brought MORE hamburgers with her.
4. Maddie got her haircut this morning.
3. Pastor Jamey and his children brought over donuts this morning.
2. We watched Jungle Book 2.
And the number 1 reason the Trimper’s had a good day is:
Jeff and Jill went to the taping of David Letterman!!
They were walking down the street in NYC, and a cute girl (according to Jill) came up to Jeff and just started talking. She worked for David Letterman and told him to show up at 3:00 and they could have tickets to the taping. They went at 3:00 and ended up 5th row center. The show will be on tonight at 11:30. Bruce Willis is one of the guests. Jill said she learned something very important today. “If someone comes up to you in NYC and talks to you, listen.” Oh Boy! They should have an interesting time.
Jeff and Jill have three meetings set up for tomorrow. We will let you know how they go.
Maddie and I missed Jamey and kids this morning. Maddie got a very nice new hair do. Sorry we missed the visit.
Hope you all had a good Tuesday. We thank God for today.
Love,
Jane
Monday, June 9, 2003 6:59 PM CDT
Dear Friends,
Crazy day! We had three tired kids this morning. We think they may have had a little too much fun yesterday at Grandma and Grandpa’s house.
Max had OT this morning. We went to the doctor’s office in the afternoon. Max did his usual blood tests. He didn’t shed a tear. When he was done, he said, “I’m Super Max.” Maddie and Sam also had to give blood. Sam hid his arms behind his back and Maddie refused to bend her arm down. It wasn’t pretty. But they did it. Sam said, “It really hurted.” Maddie said, “I’m never doing dat again!”
Grandma Up North (aka Marcia) came down for a visit tonight. It is so good to see her.
Our new back porch/ramp is finished. It looks very nice. It will look even better after it’s painted.
Jeff is leaving tonight to head to Lansing. He and Jill are leaving at 7:00 in the morning and flying to New York City. They have a couple of good meetings set up. We’ll let you know how the first day goes tomorrow. They will fly back to Michigan late Thursday night. Good luck Jill and Jeff!
Tonight we thank God for Max, Maddie and Sam. (We do every night.)
Love, Jane and Jeff
P.S. Someone asked about the media contacts we have had you 'blitz'. We haven't heard a word. We will tell you when something happens.
Also congratulations to Anna Sisson and family on the new baby!!!!!!!
Sunday, June 8, 2003 8:32 PM CDT
Dear Friends,
Sorry for the late posting. I know some of you check early and can sometimes worry.
We were actually in Chesaning today. The three kids stayed there with Aunt JoJo, Grandma and Grandpa. Jeff and I went to a graduation party in the Lapeer area. We’ve been to four parties and every single graduate has been bright, personable, and all around awesome. The future is looking very good. Congratulations Jason!
It was good to see old friends at the party. It was also good to see Aunt JoJo, Grandma, and Grandpa. Maddie, Max, and Sam also got see their Great Grandma. They hadn’t seen her in a long time. The kids also had fun riding the golf cart into the woods. They set up skunks all along the trail, and everytime they saw one, Maddie would scream. She could definitely help a horror movie sound track. They would all laugh and laugh. It was a good day.
We continue to thank God for every good day.
Love,
Jane and Jeff
Saturday, June 7, 2003 5:55 PM CDT
Dear Friends,
A quiet Saturday. We went to another graduation party. It was a beautiful party for a beautiful girl. The kids had a good time.
Max and Jane layed around on a blanket outside for awhile. They watched Jeff, Maddie and Sam wash the cars. Max had a good time rolling around. He can really move.
Hope you all enjoyed your Saturday. We thank God for every bit of family time we get.
Love,
Jane and Jeff
Friday, June 6, 2003 5:19 PM CDT
Dear Friends,
No therapies today. Jane and the kids went into Stanton Elementary for about an hour this morning. Max enjoyed seeing his classroom and teacher. He also enjoyed seeing all the other cool grown ups. He was very shy though. Since no students were there, it seemed like a nice time to become reaquainted with the school a little bit. The teachers were busy closing up their rooms for the summer. They are such a nice bunch of people.
We didn’t do much else today. Main’s construction finished our new back landing area and ramp. Maddie was very excited to roll her stroller down the ramp. She kept asking all day when they would be done building. She wanted to take max out to play, but I had to draw the line. I could just picture him rolling wild down the ramp.
We also had Max’s new wheelchair delivered, but the foot rests were wrong so we’ll have to wait a bit longer. He thought it was cool though. It is a sharp, sparkly black.
Ramps, wheelchairs, - lots of reminders that things are a bit different than they used to be. We try hard not to think too much about it. Max looks great and is very happy.
Tonight we thank God for all the nice people this disease has brought into our lives. Someday, we will tell you all the remarkable people we have met and all the caring things that have happened to/for us.
Love,
Jane and Jeff
Thursday, June 5, 2003 5:30 PM CDT
Dear Friends,
We had a quiet and peaceful morning. Aunt JoJo came over for the afternoon. Max had OT and PT at the same time. Jane was able to go to school and get some end of the year work out of the way. It was good to see her teacher friends. It is going to be very different for the Trimpers next year. We (Jeff and Jane) are both teaching third grade at Stanton Ele. right next door to each other. Maddie will be in kindergarten and Max will repeat second grade.
It is finally sunny. The kids are outside. We’ll do baths soon and tuck in for the night. Tonight we thank God for that blue sky this late afternoon.
Love,
Jane and Jeff
P.S. Happy Birthday Uncle Carl!
Wednesday, June 4, 2003 5:48 PM CDT
Dear Friends,
Max worked hard today. He had O.T. with Diane first thing this morning. He had an hour break, and then had speech with Jill. He had an hour break and then did P.T. with Kristy. By that point he was pretty whipped. I am so proud of how he never complains about the therapies. He is in pain sometimes when they are stretching his muscles, but he gets over it and is such a good sport.
Grandpa Strawberry, aka Bob, came over this morning so Jane could go and say goodbye to her students. Today was the last full day. It was so good to see them. She had them as both second graders and third. It is hard to believe she has missed a whole semester. They are a wonderful, loving class. They also spoiled her with gifts. She particularly loved the book that they worked together on and the pictures some of them made. Thank you Grandpa for helping with the kids.
Happy birthday, Grandma Up North, aka Marcia,. We are a day late, and we are sooo sorry. We celebrated for you today.
Max also got a little shave today from Jeff. He cut off his very long sideburns. He is looking so sharp! (We took a little off the neck, too.)
Max is becoming more aware and more interested every day. We definitely thank God for that.
Love,
Jane and Jeff
Tuesday, June 3, 2003 5:51 PM CDT
Dear Friends,
Max had a late start today. He didn’t wake up until 8:30. That is very rare for Max. We were lazy for a while and then we went out for a while. We went to Anderson and girl’s orchard and the dollar store. I think Max like being out and a bout. He laughed a lot. As we passed the school, he asked when he could go back. He’s been asking things like that a lot lately. It is good that he has become iterested in things again. He has strted to ask about friends. He has also been requesting food and candy. All of these things seem like good signs.
We came home and had lunch and tried to nap. No one actually slept, although I think I could have.
Max had P.T. at 3:15. His occupational therapist, Sarah, called and joined P.T. They worked him hard, and he did a good job.
After school, Mrs. Deacons came and worked with him again. He said earlier that afternoon when I was going over his schedule with him, “I really like when Mrs. Deacons comes over.”
The kids are looking forward to the end of the school year so Daddy can be home every day. Needless to say, Jane feels the same.
Tonight we thank God for Max’s good sense of humor. He laughed a lot today.
Love,
Jane and Jeff
NEW MEDIA BLITZ!!!!!!!!!!!!!
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected Readers Digest Magazine as the media target to be contacted. If you have a few moments this week, please contact them at
http://www.rd.com Click on the home button at the bottom and then
Click on the “Talk to Us” on the left hand side.
Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
Monday, June 2, 2003 6:03 PM CDT
Dear Friends,
As I sit here each night, it amazes me that people are still reading the journal and have stuck with us. Thank you.
Max had O.T. in the morning and P.T. in the afternoon. He worked hard. They do a lot of stretches with him. He stood at the table and walked with the walker with P.T. His O.T. played a game with him and did many exercises. He doesn’t complain and works very hard. It is always nice when it is sunny and he can go outside for therapies. Maddie and Sam had a good time outside too. We have three very tired kids tonight.
Ginger posted the winners of the raffle in the guestbook. We’ll add this to the end of the entry. Thank you to all who donated items, sold tickets, and bought tickets. We’ll use that money for kicking MLD in the butt.
We thank God for summer.
Love,
Jane and Jeff
------------------------------------------------------------------------
The Winners of the Raffle are as follows: grandfather clock-Elain VanEtten, refrigerator-Tim Staymad, gun-Tony Burlison, plane ride-Marilyn Fountaine, MSU basketball - Barbi Millard, Afghan-Necca Minnick, and Quilt-Jamie King. thank you to all of you who sold and bought tickets. "It takes a village"
Ginger
- Monday, June 2, 2003 5:31 PM CDT
__________________________________________
NEW MEDIA BLITZ!!!!!!!!!!!!!
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected Readers Digest Magazine as the media target to be contacted. If you have a few moments this week, please contact them at
http://www.rd.com Click on the home button at the bottom and then
Click on the “Talk to Us” on the left hand side.
Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
Sunday, June 1, 2003 5:47 PM CDT
Dear Friends,
We had a nice Sunday. We didn’t do anything too exciting. We did go to another graduation party for another greal girl.
Hope you all had a good weekend.
Jane and Jeff
Saturday, May 31, 2003 7:06 PM CDT
Dear Friends,
It was a half rainy/half sunny Saturday in Stanton today. During the rainy half, we watched t.v. During the sunny half, Maddie and Sam played at the Hansen’s house. Max took a nap, watched a movie, and rode his bike outside.
We had our second Team Trimper meeting today at our house. Everyone reported back on what they found regarding their topic. We didn’t learn too much new stuff, but we have decided to keep looking. One important thing that came out of it was we were able to rule out some things that were not helpful to us. That may sound silly, but information learned is always valuable. We will meet again in July and report our findings again. Jill and Jeff are still scheduled to hit the Big Apple on June 10th.
We thank God for our team. We are so lucky to have them.
Love,
Jane and Jeff
Friday, May 30, 2003 4:49 PM CDT
Dear Friends,
Early entry tonight. We are heading to a graduation party for a very remarkable girl. The kids are excited to get out and have fun.
Max had a good day. No therapists came today. We went to watch Finding Nemo, the new Disney film, instead. It was a great movie and the kids really liked it. The movie had a nice message. A friend told me I would cry, but I didn’t. I just loved every minute with the kids.
Have a great Friday night. We thank God for Max being able to go to an uncrowded movie theater.
Love,
Jane and Jeff
Thursday, May 29, 2003 7:01 PM CDT
Dear Friends,
Max was pretty tired today. His legs shook more than usual. The PT and OT in Minnesota had warned us about this. He had such a tremendous day yesterday, and his body paid for it today. It is good to know that it will pass. We gave him plenty of rest time today.
He did have physical therapy in the morning. He worked hard, but his tremors made it difficult. He took a nap after lunch and was ready for occupational therapy early in the afternoon. One of his teachers form school, Mrs. Deacons, came and did some work with him after school. He liked a book they read that had characters named Sam and Max.
He ate better today. He had a bowl of oatmeal for breakfast and ate all his pizza rolls for lunch. For dinner he ate chicken, salad and some roll.
Right before lunch Max was sitting in a chair and watching t.v. He suddenly yelled out to me, “Will I ever walk again?” I said something like, “Well if you work hard....” I didn’t like that answer. It isn’t fair to him. I would never want him to feel it was his fault. I went and sat next to him and said, “We aren’t sure. You are going to work hard. We’re checking into some meds. We’ll see what happens.” He went back to watching t.v. It is a hard question to answer. Almost every single part of me wants to say, “Yes, Max. It is going to happen.” The doctors don’t think so. The history of MLD would tell us no. Lots of text books, websites, and articles will tell us no. But we still just believe yes.
Although that was a tough question, I was so glad he asked. It shows awareness, curiosity, and interest. That is a good thing. We thank God for all He’s done for Max. He is doing better than most would ever expect. We also thank God for those many who also believe that Max will walk again.
Love,
Jane and Jeff
Wednesday, May 28, 2003 5:24 PM CDT
Dear Friends,
Busy day again. Max started the day with some occupational therapy. He then had speech right after. He took a short nap and had physical therapy in the afternoon. Our therapists are so nice and work so well with Max.
Maddie and Sam played all day. Jane cleaned. A very nice day overall.
Just a reminder that Jill and Jeff will be heading to New York City in June to make media contacts. If you know anyone who knows anyone who...., let us know. Thanks. The Grand Rapids Press did have our article in tonight. There was a nice picture of Max in OT.
Sams turn. When asked what we thank God for, he answered, “for getting Max better.” We love these kids.
Love,
Jane and Jeff
NEW MEDIA BLITZ!!!!!!!!!!!!!
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected People Magazine as the media target to be contacted. If you have a few moments this week, please contact them at
editor@people.com This is the email address (not the website.) You would send it like a normal email. The address is above.
Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
The Trimper Children Benefit
When: Sunday, June 29, 2003 2:00PM-6:00PM
Where: Castle Farms Charlevoix, Michigan
The Charlevoix Coalition Against MLD is hosting "The Trimper Children Benefit" on June 29 at Castle Farms to raise money for the Trimper family. The benefit will have live and silent auctions, live music, along with food and drinks.
Tickets are available at the following businesses:
Bridge Street Book Shop, Charlevoix
E.J. Shop, East Jordan
East Jordan Chamber of Commerce
Mary's of Boyne, Boyne City
Petoskey Chamber of Commerce, Petoskey
Shop of the Gulls, Charlevoix
7-11, Charlevoix
Villager Pub, Charlevoix
Minimum Donation: $25-Checks to be made payable to CCAMLD.
The Charlevoix Coalition Against MLD
PO Box 448
Charlevoix, MI 49720
For more information, please call
231-547-9661 (office of Sam Supernaw Jr. &Co.)
Tuesday, May 27, 2003 5:56 PM CDT
Dear Friends,
A beautiful and sunny day. We weren’t outside as much as we should have been. This morning, Max did some school work with Jane. They focused on addtiion. Max struggles with math now. (more than reading) He then took a quick cat nap before heading to Dr. Crittenden’s office to give blood.
He did a good job giving blood. It hurt, but he handled it well. Sam and Maddie had a good time. They are so nice to us. They take Max back right away to keep him away from other people and it is always good to see Dr. Crittenden. It is a great place to go.
When we got home, he had an hour of physical therapy. Kristy said he worked hard. She gave him the choice of riding his bike or walking with the walker, and he chose to walk.
Maddie, Sam and Jane went up to the elementary school to play on the playground. We were able to see some friends. It was good to get out.
Following tonight’s entry is the next media announcement. Jill and Jeff are planning a trip to New York City in June. If anyone knows of any contacts, please let them know. There is also some information on the Charlevoix benefit.
Tonight it was Maddie’s turn. We asked what we should thank God for tonight. “I’m thankful that Max has hair back.” If I had predicted her answer, I never would have thought of that. We hope all is well in your home.
Love,
Jane and Jeff
NEW MEDIA BLITZ!!!!!!!!!!!!!
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected People Magazine as the media target to be contacted. If you have a few moments this week, please contact them at
editor@people.com
Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
The Trimper Children Benefit
When: Sunday, June 29, 2003 2:00PM-6:00PM
Where: Castle Farms Charlevoix, Michigan
The Charlevoix Coalition Against MLD is hosting "The Trimper Children Benefit" on June 29 at Castle Farms to raise money for the Trimper family. The benefit will have live and silent auctions, live music, along with food and drinks.
Tickets are available at the following businesses:
Bridge Street Book Shop, Charlevoix
E.J. Shop, East Jordan
East Jordan Chamber of Commerce
Mary's of Boyne, Boyne City
Petoskey Chamber of Commerce, Petoskey
Shop of the Gulls, Charlevoix
7-11, Charlevoix
Villager Pub, Charlevoix
Minimum Donation: $25-Checks to be made payable to CCAMLD.
The Charlevoix Coalition Against MLD
PO Box 448
Charlevoix, MI 49720
For more information, please call
231-547-9661 (office of Sam Supernaw Jr. &Co.)
Monday, May 26, 2003 4:52 PM CDT
Dear Friends,
We hope everyone had a nice Memorial Day. The sun appeared on and off again here.
The kids were able to spend more time outside today. Sam, Max and Jane were even able to go on the trail and try to see turtles. Sam did a good job on his big bike with training wheels. Max enjoyed rolling along. Three tired kids tonight. It’s time for bath and jammies.
In wrapping this entry up, I asked Max what we thank God for tonight. “My brother and my sister.” Sounds good to us.
Love,
Jane and Jeff
P.S. We’ll have the next media blitz info on tomorrow. We’ll also post something on the Charlevoix benefit soon.
Sunday, May 25, 2003 5:09 PM CDT
Dear Friends,
Another dreary morning. We had a visitor though. Aunt JoJo came over with great bagels and big bouncy balls. She watched the kids so Jeff and I could go to church together. It was nice. We also got to make a quick trip to Meijer.
I’d like to share a story about Max today. Joanne was outside working with him on his bike and practicing his walker. When they got done, Joanne was walking with the walker. She said, “This isn’t easy to move.” Max said, “Welcome to my world.” He is so funny. We thank God for that kid (and the other two).
Love,
Jane and Jeff
Saturday, May 24, 2003 9:23 PM CDT
Dear Friends,
Sorry. I just got home. It was a quiet rainy day here in Stanton. The kids watched quite a few movies today. Aunt Jenni came to visit and watched a couple of the videos with them. I headed to Williamston for a benefit for some old friends. Other than that, a quiet day. We thank God for that.
Love,
Jane and Jeff
Friday, May 23, 2003 5:28 PM CDT
Dear Friends,
Happy Friday! We had a busy morning. Maddie and Sam both went with Cheryl (She’s been taking care of our kids for eight years.) to the WLAP Parade. For those of you not living in Stanton, that is the annual We Love America Parade. It is quite an event. Lots of kids singing lots of patriotic tunes. It is a great time. Max wanted to go too, but it is just too many people so soon after his transplant. It was still good to hear that he wanted to go. Maddie and Sam had a picnic and played at Cheryl’s house after the parade. They really enjoyed seeing their old friends.
Max had Physical therapy while they were gone. He worked hard and I was able to help. He ate some Pizza Rolls and took a nap. His naps have become short. He slept for about an hour. It is good to see him needing less rest. He worked with me on the computer and then we called it a weekend.
Memorial weekend is always a good time for teachers. The end of the school year is near and then you get a couple of months with your family. However, WLAP reminds us what this holiday is really about. We thank God for all the people who have given us our freedom.
It is strange how everything relates back to our children. No matter what it is, we link it to what they are going through. I can’t help that think without the freedom we enjoy every day, the medical community would not be where they are. And hopefully with all that knowledge, freedom and money, a cure will happen.
Love,
Jane and Jeff
Thursday, May 22, 2003 5:23 PM CDT
Dear Friends,
Busy, busy day. We were pretty laid back this morning. Max did some work with me on the computer for awhile. We did some exercises on the floor. He took an early nap today.
When Max woke up, he had O.T. with Sarah. While they were working a photographer from the Grand Rapids Press came to take some pictures. After O.T., Max had P.T. with Kristy. It was such a beautiful day that Kristy was able to take him outside to work. He worked hard.
At 4:00, a reporter from GR Press came and asked us for an update. She was very nice and we look forward to the story. Aunt Jill came and planned a New York City media trip with Jeff. They will go in June and hopefully make some good contacts. Busy, busy.
Dr. Krivit called today to check on Max. He said his wife is getting better and better. That was good to hear. He also assured us that we shouldn’t worry about Max’s vomiting as long as he is eating and there are no other symptoms. He hasn’t thrown up today.
Max is looking good and taking shorter naps. We thank God for keeping Max well.
Love,
Jane and Jeff
P.S. Remember we are emailing GMA this week. Feel free to touch base with Oprah again. For more information, go to Journal History. THANK YOU!!!
Wednesday, May 21, 2003 5:56 PM CDT
Dear Friends,
It was a busy day in the Trimper house. Max and Jane had to get up early and get ready to go to Mary FreeBed in Grand Rapids. Jane’s dad, Bob, (aka Grandpa Strawberry) arrived at 7:30 to watch Maddie and Sam.
The appointment at Mary FreeBed was a good one. Max’s physical therapist, Beth, came with us and talked about Max’s braces with the specialist there. They decided to make adjustments to Max’s and look into night braces. This worked out well. He was able to wear the braces home and they no longer hurt. He walked in his walker while we were there. Beth gave him support around the waist, but he did pretty well. It was a relief to have the braces on again.
We got home around noon, just in time for speech. He ate lunch with Jill, his speech therapist and worked with her. He was very tired when this was finished and went upstairs for an hour nap.
At 4:15, Jane went to the church for a quilt blessing. The Hometown Quilters, a group of 16 ladies, presented our family with a beautiful quilt made with much love and many prayers. They came to the church and told about their squares. Pastor Jamey said a prayer with the group. It was wonderful. It’s another of the many reminders that people are truly carrying us. We’ll have a picture of the quilt on tomorrow. Our photographer is mowing the lawn.
After dinner, two women from Greenville, Mary Jo and Sandy came to our house. They had read our story in the Grand Rapids Press a while back. On Friday night, they had a dinner with a group of friends, and they put a can out with our article and collected money. They came in, met the kids, and visited for awhile. It was good to meet them and the money will be used to “Kick MLD in the Butt.” Thanks, Mary Jo and Sandy.
Busy day. Tonight we thank God for quilters and strangers who would reach out to others. Beautiful people.
Love,
Jane and Jeff
Tuesday, May 20, 2003 5:20 PM CDT
Dear Friends,
A fairly quiet day at the Trimpers today. Max had physical therapy for about a half hour this afternoon. He did a little bit of work with Jane. He is eating a little bit better and has not thrown up since Saturday. There isn’t much else to tell today. According to the calendar, tomorrow will be a busy one.
Thank you to those of you who have emailed Good Morning America. We’ll keep working at it.
Love,
Jane and Jeff
NEW MEDIA BLITZ!!!!!!!!!!!!!
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected Good Morning America as the media target to be contacted. If you have a few moments this week, please contact them at
http://abcnews.go.com/sections/GMA/GoodMorningAmerica/GMA_email_form.html.
http://abcnews.go.com/onair/DailyNews/020924LifeAlteringMoments.html
Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
Monday, May 19, 2003 5:31 PM CDT
Dear Friends,
Thanks for all the emails and notes about the last two entries. We write in the journal for many reasons. It gives out accurate informaion. It leaves us with a written record of what we have gone through. It also gives those of you who want to, an inside glimpse at what we are going through. It also makes us feel better. It is never our intention to inspire people. If we do, that is just a wonderful extra. It is never our intention to make people worry about us (more than they probably already are) or make them feel sad. We are sorry if that happens. We’re afraid that happened this weekend.
We said this weekend that some days are just downers. We don’t know why. They just seem to hit and linger around for a bit. We are lucky in the sense that they go away. We know people who battle depression every day and can’t imagine how they do it. For us better days come. Today was a better day. We woke up stronger and ready to go. Maybe a couple of downer days get it out of your system for a while? Maybe you felt so bad for us, your prayers were heard even louder? The fact is today we were just happier and could enjoy the day more.
Max had occupational therapy this morning. He worked hard yet again. He drank a Boost fruit drink for breakfast. He started asking for pizza rolls at 10:00 a.m. When he eats, WE feel better. He took a two hour nap and then had an hour of physical therapy. Because his tone has become worse, he can’t wear his braces for long. They start to hurt. He will go to Grand Rapids on Wednesday and meet with someone to create new braces.
As you can see in the pictures things got a bit messy here in the afternoon. After 14 years of teaching elementary children, wouldn’t you think I would know enough to put newspaper down? Oh well, that hardly seems important.
We read some good news on two of the other Caring Bridge sites. Both Lucas and Presley had positives to share. That was great to hear. It always makes us smile when we read the good news about the many children we follow.
Tonight we thank God for the caring people He put in our lives. We will also thank Him for renewing strength when we need it .
Love,
Jane and Jeff
NEW MEDIA BLITZ!!!!!!!!!!!!!
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected Good Morning America as the media target to be contacted. If you have a few moments this week, please contact them at
http://abcnews.go.com/sections/GMA/GoodMorningAmerica/GMA_email_form.html.
http://abcnews.go.com/onair/DailyNews/020924LifeAlteringMoments.html
Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
Sunday, May 18, 2003 5:26 PM CDT
Dear Friends,
It was a normal sunny Sunday. Jeff and I are struggling this weekend. Those days happen. Max hasn’t been eating well. He is back to his pre-steroid apetite. He threw up a couple of times yesterday so we aren’t pushing it with him. We’ll contact Minnesota tomorrow and see what they say.
There are a couple of things that happened this weekend with Max that I’d like to tell you about. There are two reasons for sharing these. The first is that they need to be written down and this is our only jounal. The second is that I often want to tell people these stories but am unable to talk about them. I am a big believer in talking out problems. In the past I have found that if I talk long enough (much to Jeff’s dismay) I can usually figure out what the root problem is for me, solutions, etc. This is the first time in my life where I have no desire to talk about what is going on. I guess it is because talk doesn’t seem to help me this time.
Anyway, the first thing I wanted to tell you about happened yesterday morning on the ride to Chesaning. It was just Max and me in the car listening to country music. Diamond Rio’s ‘I Believe’ song came on. Anyone who knows the song can understand how I became lost in my thoughts while it played. It always makes me think about Kathie, Mary, Rhonda, Mary Ellen and others who have suffered great loss recently. All of a sudden I heard Max in the backseat say, “I believe.” I said “Max did you just say I believe?” His little voice came back, “I believe (2 second pause) I can fly.” That is a lyric from a Space Jam song. But hearing him say it made my eyes well up and left me with nothing to say.
The second thing: Late last night I was talking to Jeff after the kids went to bed and we were pretty whipped. I was telling him how I can’t stand all the pictures around of our kids. I was telling how I can’t bear to watch videos or look at old pictures. It hurts so much. Wouldn’t you know it, first thing this morning Maddie says she wants to watch a movie. She pulls out the Christmas 2001 video. I thought o.k. They can watch it, but I don’t have to. I put it in and just sat next to Max for a minute. He was on the screen dancing and singing into a microphone he had gotten for Christmas. My eyes had filled as I watched him move so easily and look so perfectly healthy. Max turned to me and said, “Should you forget this?” I just looked at him. Where had that come from?
I pray so hard for signs from God. I pray for angels to watch over us and guide us. I pray for strength and wisdom. I don’t know exactly what to make of these two events, but I thank God for them.
Love,
Jane
Saturday, May 17, 2003 7:05 PM CDT
Dear Friends,
Busy day today. Jeff got up early and went to play in the golf outing. Max and Jane were a bit slower moving and went to Caesaning later in the morning. Joanne, Maddie and Sam met us there. The kids did golf cart rides with Aunt JoJo. They had a nice time. Jane took Maddie and Sam to the Riverboat Playland Playscape in Cole Park. They met a very nice lady who said that she read the journal every night.
Now for the golf outing: They ended up having 143 people play today. Many were the regular Hack and Slammers. Tim did a great job organizing the event. There were old high school friends of Jane. It was great to see them. Never enough time to visit as long as we should. There were a couple of teachers from Central Montcalm. There was even an old family friend from Remus there. Uncle Mark came down with a foursome of Traverse City people. The weather was good and it sure appeared that everyone had a good time. Jeff played, but Jane just came for about an hour and a half at meal time.
We went back to Claudia and Bob’s house and loaded up the kids. Sam was sound asleep by the time we got back to Stanton.
As you have read, we have a lot to thank God for. We know that. However, some days, like today, we just wonder “How did we get here?” What happened? What was life like before October 25th? What will life be like now? Maybe an hour drive is just way too much time to think. (Maybe I shouldn’t drink a glass of wine when I do the journal. :) )
Hope all is well with you.
Love,
Jane and Jeff
Friday, May 16, 2003 8:21 PM CDT
Dear Friends,
We started our day with a little vomit. Max has been congested for weeks now. We think it was the drainage that upset his stomach. Sorry to start the journal entry with such a an ugly mental picture. He threw up twice. Then he felt pretty good. He ate some pizza rolls for lunch and took a short nap. He had O.T. in the afternoon for an hour.
We had planned earlier in the week that Maddie and Sam were going to spend tonight at Aunt JoJo’s house. Max said that he really wanted to go to Aunt JoJo’s house. It was good to hear that Max wanted to go some place. We all went to Mt. Pleasant. We left the kids with Joanne for awhile then came back and got Max and went home.
Tomorrow we will meet up with Joanne and the kids in Chesaning for the golf outing. Other than that, it was kinda dreary today. Jane got some good pictures though. The pictures show what all three kids were doing at 1:00 p.m. Max and Kippy were adorable on the floor.
We thank God for all of you who check in on us.
Love,
Jane and Jeff
Thursday, May 15, 2003 5:35 PM CDT
Dear Friends,
Happy birthday, Aunt Cindy!! What number is it again?? We seem to think it is one of those big ones that ends in zero. One of those empowering ones. It doesn’t seem fair that you look like you are 18.
Another rainy day kept us inside today. Max had speech this morning. He had P.T. in the afternoon. He worked on the computer with Jane for a while and had a nap.
Maddie and Sam went to Pastor Jamey and Michelle’s house to play with their three kids. They had a good time and did not want to go home. We know this because they said, “I don’t want to go home.” the whole ride back to our house. Sammy fell asleep within 5 minutes of returning home.
Warm baths and clean jammies. Tuck them into bed. Tonight we thank God that Max has no fever or rash. No signs of problems.
Love,
Jane and Jeff
P.S. Tim sent an email today that the outing is full with 144 players. Thanks Golfers. Thank you too to all the Oprah emailers. We will let you know if we hear something.
Wednesday, May 14, 2003 5:51 PM CDT
Dear Friends,
It was another beautiful sunny day here in Stanton. Max started his day with Occupational Therapy. He ate lunch, napped and had Physical Therapy. His PT was outdoors today. He was able to ride his bike and practice walking in the walker. He also ‘shot hoops’ with her. He worked hard and we are proud of him. Both therapists mentioned that Max tired after 45 minutes but plugged away for 15 more without complaint. We are very proud of him.
Maddie and Sammy played house upstairs during therapy. They have been very good about saying out of the way. Sam played outside for quite a while with his tractors. They both rode bikes and somehow during play received scuffed up knees. That is a sure sign of spring.
We were reminded a couple of nights ago by a very good and ‘old’ friend to believe in what we can not see. Listen to the doctors, see with your eyes, but know there is so much more. It’s a good reminder. In fact I passed on the same advice to another family. We thank God for good old friends.
Love,
Jane and Jeff
P.S. Thanks for all the help with the Oprah Show. Hopefully something good will come out of it.
Tuesday, May 13, 2003 5:32 PM CDT
Dear Friends,
Thank you to everyone who emailed Oprah. We have the best support group around. We’ll let you know what is planned for next week. Keep them going!
What started out as an ordinary day turned into a fun sunny day. Max was supposed to have P.T. at 8:30 this morning. There was a mix-up and his appointment was cancelled. We had a free day. We decided to head to Williamston and see Aunt Sally and the three cousins. (Sally’s kids are the same age as our three.)
Now this is the point where you kind folks who write such nice stuff in our journal may regret encouraging me to share feelings. However, I do find writing in the journal is therapeutic for me. And many sweet moments happened today.
As we were driving down 27 on the way to Sally’s house, I heard Max saying, “Turn back. O.K. Keep going....” I looked back and Maddie was holding up a SpongeBob book for Max and was showing him the pictures. She was patiently turning each page, going back when requested, etc. She is very nice to him.
When we got to Sallys, I was worried about the cousins seeing Max. They hadn’t seen him since Christmas. I was also a little nervous about having Max in someone else’s house. Should I put him in the wheelchair? Can he use their bathroom? Will he feel weird somewhere new?
The cousins were great. Grace, 5, wanted to hold his hand and help him walk. (She saw me doing it and thought it looked like big fun.) Jackson, 3, never even seemed to notice that Max was any different. Molly, 7, came home from school early, and she and Max had a nice time. She asked lots of questions about what Max could and could not do. She wanted to play Hangman. Max and I were a team and we were trying to guess her puzzle. It turned out to be ‘I want to kick MLD in the butt’ . How great is that? Sally and Bill are raising three great kids. I do admit that several times during the day as I watched these kids play, I thanked God that Sally does not carry the MLD gene.
The last sweet moment was on the ride home. One of the things new about Max is that sometimes he says stuff out of the blue. A lot of times we just have to ignore it. He mumbled something in the backseat. I asked him what he said. He said, “I love you, Molly.”
We thank God for three healthy cousins to love.
Love,
Jane (and Jeff)
Our media team for Team Trimper (Jeff and Jill) have formed a plan to get attention. Many of you have asked how you can help. This is the first of probably many requests.
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected Oprah as the media personality to be contacted. If you have a few moments this week, please contact her at
http://www.oprah.com/email/reach/email_showideas.jhtml . Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighting for the lives of these children. Thank you.
Use that if you want. Add your own personal thoughts. Change it around. etc. Oprah seems like a good place to start because we think the story would be appropriate for either the show or the magazine. We would be thrilled about either.
Monday, May 12, 2003 6:35 PM CDT
Dear Friends,
Look out. It’s going to be a long one tonight. We have lots to share. First: Thank you for all the encouraging, inspiring and incredibly kind guestbook entries. They do so much for us and we are very grateful.
Second: Max’s day. He had O.T. this morning and did a great job. The kids and Jane went to KMart. This is a big deal for Max. It was good to get out and Max kept his mask on the whole time. He never complained. He had P.T. this afternoon. He again worked hard. He took an hour and a half nap afterwards. Marcia and Don came down to see us with friends, Bill and Barb. Bill in looking at our house and helping us form a plan for adapting it for Max. Thanks Bill. Chicken for dinner. Pajamas and a movie. Nice cozy night.
Our media team for Team Trimper (Jeff and Jill) have formed a plan to get attention. Many of you have asked how you can help. This is the first of probably many requests.
Each week, we will select a media contact and are requesting that everyone contact this media’s website to share the Trimper story. We have prepared our own website
http://www.trimperchildren.org which explains the story and provides quite a bit of information (Thanks Bill Carroll). The messages to the media should refer the reader to our new site.
This week we have selected Oprah as the media personality to be contacted. If you have a few moments this week, please contact her at
http://www.oprah.com/email/reach/email_showideas.jhtml . Please send as many messages as you feel appropriate.
An example message could read as: (feel free to cut and paste this)
We would like you to know about the Trimper family. All three children in the family have been diagnosed with a severe genetic disorder called Metachromatic Leukodystrophy (MLD). Please contact their website at http://www.trimperchildren.org. You can also read about their story at http://www. caringbridge.org/mi/trimpermld . The Trimper’s story is one of hope, survival and faith. It is a story about family, friends and community fighing for the lives of these children. Thank you.
Use that if you want. Add your own personal thoughts. Change it around. etc. Oprah seems like a good place to start because we think the story would be appropriate for either the show or the magazine. We would be thrilled about either.
Thank you for your time. It is very hard to ask for help. It is one of the many new things we have had to get used to in order to help our kids. Together we can hopefully get the media exposure we need.
We also want to thank Tim Schultz for all his work on the golf outing. Jeff is warming up his clubs. (Actually he is trying to find them.) We also got a call from Ron in Cahrlevoix, and the benefit there sounds very nice. We’ll provide more information for that soon, but the golf outing info will be after the journal entry ( http://www.trimperchildren.org )
We could write day after day about the people we should thank. A common thing we hear from people planning the benefits is “I never knew people were so generous.” We keep saying that every day. People are so good. We thank God for that.
Love,
Jane and Jeff
Date: May 17th
Format: 4 Person Scramble
Time - 9:00 and approximately 2:00 PM - depends on when first group
finishes
9:00 – Trimper’s Family & Friends
2:30 - Usual Hack & Slammers
Though welcome top play in either group.
Cost: $75 - covers golf, cart, t-shirt, hat, meal, and beer on course
Location: Kimberly Oaks - St. Charles, MI 989-865-8261
If you are interested email Tim Schultz at
tschultz@sarahsattic.com
989-845-3990
Sunday, May 11, 2003 5:47 PM CDT
Dear Friends,
Happy Mother’s Day. Hopefully wherever you are the weather was better than our house. It was cold, wet and windy. Luckily we were snug inside the house with nowhere that we had to be. We just hung out until Jeff got home later in the afternoon.
The Bethany’s Hope Gala went very well. As you can see from the pictures our group looked beautiful. They met a lot of people last night. Everyone was very friendly and knew about “The Michigan Table”. The hardest part of the evening was a slide show about MLD, and all three of our kids were in it. Other than that, it was a night of good food, nice people, and great music. Dave and Lindey McIntyre were very inspirational.
Today was a very valuable day to our 8 travelers. The doctors funded by Bethany’s Hope and others directly involved allowed us to see their lab. They spent almost three hours talking with us and answering all our questions. The doctors were very approachable and very kind to spend so much time with us. Our group left with a lot of answers, but they were also proud of how much they already knew. It is amazing how much we have found out in 5 months. We believe we have made some great contacts for the future. We will make this an annual event. You will probably be seeing more pictures of the gala in the next couple of days.
We thank God for having family that would travel to Canada to help our kids. (We thank them too.)
Love,
Jane and Jeff
Saturday, May 10, 2003 8:26 PM CDT
Dear Friends,
Today is an exciting day. Tonight there is a gala ball sponsored by Bethany’s Hope in London, Ontario. They are an MLD foundation who funds their own lab and doctor. Jeff left this morning with his parents to attend the event and to tour their lab tomorrow morning. Bob, Claudia, Joanne, Sally and Bill will also be attending. We are hoping that they will learn lots and bring home valuable information. Bethany’s Hope also supports the research of Dr. Barranger in Pittsburgh.
On an inspriational note, the parents who started the organization, Dave and Lindey McIntyre lost their daughter, Bethany to MLD. They have 6 other children and continue to fight hard for a cure. What amazing people.
The kids and I hung out on another cloudy day. We were able to get outside and go to another baseball game.
Jeff can write tomorrow’s journal and tell you all about the ball. I can’t wait to hear about it.
We thank God for the McIntyres and their fighting spirit.
Love,
Jane (and Jeff)
Friday, May 9, 2003 7:01 PM CDT
Dear Friends,
Quiet day at the Trimper house. Max didn’t have any therapists work with him today. Jeff went to school and we hung out at the house.
I’ll add one more thing since it is Friday night and not many people check over the weekend. Forgive me some sentimental ramblings. I had another reminder today that things will never be the same for me. I was watching Regis and Kelly today and they were celebrating Mother’s Day by surprising special moms with gifts. The first mother was in New York City with her adult daughter while her daughter was going through a bone marrow transplant. As soon as the mother opened the door and saw Regis standing there, I started crying. I just thought how that mother probably worried and worried every day and night. And there was Regis. She was crying and worried about being in her night gown. She turned and said to Regis in such a calm voice, “Have you heard about my daughter?” In all the excitement she was thinking of her daughter’s illlness.
I know that before October 25th I would have thought that was a nice thing for Regis and Kelly to do. I would have thought that that was so sad for that woman. Now I cried thinking about her facing the reality that she might lose her daughter. I thought how homesick she probably was and how scary it would be to go through a BMT in New York City. I worried about how her daughter got to her appointments without taking public transportation so she could avoid germs. (I know that would never have occured to me before Oct. 25.) Anyway, I continued to cry through the whole hour. Each mom was pretty spectacular. It was another reminder that we will never be the same people again. Other people’s pain is so much more real to me now. And that isn’t all bad.
We thank God for each day. Have a great weekend.
Love,
Jane (and Jeff)
Thursday, May 8, 2003 6:32 PM CDT
Dear Friends,
Today was a pretty quiet day. Max had physical therapy for an hour. That is about it.
We thought it was time to give another physical update. We were asked today, “How is Max doing compared to when you came home?” That is a good question. He is very similar to when we came home except fro two things. One is his tone in his legs (especially the left) is worse. That means when Max is sitting in a chair his left foot would point straight out. His braces keep his foot in a 90 degree angle and that stretches out his ankle. However because of the change in his tone, the brace is leaving a red mark on his ankle. This is a sign that the braces need to be changed in some manner. The next thought is that if his tone is worsening, walking is probably harder. That is correct. He can only walk with much help. He has a very hard time even picking up his feet.
The second change is holding his head up. He does a good job most of the day, but by dinner time it is hanging a bit forward. He tends to slump forward in his wheelchair.
Cognitively, Max can have troubles with short term memory. He has a hard time visually finding things in like an I SPY Book. He can read many words, but has a hard time reading them all together. His sense of humor is good and he loves to mess with people. Physically, he has trouble using a fork and spoon. He drinks from a cup well, but we usually put a type of top on it because he shakes a bit.
We had him laying on the floor yesterday and when we looked later he was probably three feet away from where he was and was sitting up. He can sit up, roll, crawl, and move pretty well. He definately works better for his therapists than us. We tend to do too much for him.
That gives pretty much the good and the bad. We mourn for what he can not do at this time and fight to gain back every bit. However we thank God for what he can still do.
Love,
Jane and Jeff
Date: May 17th
Format: 4 Person Scramble
Time - 9:00 and approximately 2:00 PM - depends on when first group
finishes
9:00 – Trimper’s Family & Friends
2:30 - Usual Hack & Slammers
Though welcome top play in either group.
Cost: $75 - covers golf, cart, t-shirt, hat, meal, and beer on course
Location: Kimberly Oaks - St. Charles, MI 989-865-8261
If you are interested email Tim Schultz at
tschultz@sarahsattic.com
989-845-3990
Wednesday, May 7, 2003 4:03 PM CDT
Dear Friends,
Four of us were home today. Three of us were lazy. One of us worked hard with three hours of therapy. The rainy dreary day didn’t slow Max down.
Other than therapists coming in and out all day, nothing else really happened.
If you are interested in golfing on the 17th, please email Tim Schultz. If you can put a foursome together, that is even better. Hopefully the weather will be better than today. We’ll include the golf outing information at the end of tonight’s entry.
We thank God for no fever, rash, etc.
Love,
Jane and Jeff
Date: May 17th
Format: 4 Person Scramble
Time - 9:00 and approximately 2:00 PM - depends on when first group
finishes
9:00 – Trimper’s Family & Friends
2:30 - Usual Hack & Slammers
Though welcome top play in either group.
Cost: $75 - covers golf, cart, t-shirt, hat, meal, and beer on course
Location: Kimberly Oaks - St. Charles, MI 989-865-8261
If you are interested email Tim Schultz at
tschultz@sarahsattic.com
989-845-3990
Tuesday, May 6, 2003 6:59 PM CDT
Dear Friends,
Sorry for the late update. Time got away from us. It was a good day. Max had P.T. in the afternoon. He did some I SPY Treasure Hunt on the computer with Jane. Jeff did some floor exercises after school. Max worked hard today. He has a nice batch of hair growing in. He is starting to look more like the old Max.
Love,
Jane and Jeff
Monday, May 5, 2003 4:33 PM CDT
Dear Friends,
Busy day. Max had occupational therapy this morning. He worked hard and met a new therapist, Diane.
Maddie and Sam went to Cheryl’s after lunch and spent a few hours playing with old friends. They had a great time. Max and Jane went to Greenville to see Dr. Crittenden. He gave blood for the usual tests. It was the first time in a long while that Max had to give blood from his arm and not his Hickman Line. He did very well. They also did a chest xray because he has been congested for two weeks. As far as we know, things looked good.
We had to rush home so he could do physical therapy. He worked hard with his therapist for an hour. He was very tired by the time this was done.
Other than that, sloppy joes for dinner, appetite is good, and we have three kids who are worn out from a busy day.
Jane did receive a very nice phone call today from a lady named Caroline from Byron Center who had a son who died of MLD 26 years ago. She had read about us in the paper and felt compelled to call. It was a wonderful conversation. Her son was 16 when he passed away and we talked about how he was free from the disease. We can’t imagine having dealt with this disease 26 years ago. How frightening yet Caroline felt blessed.
We thank God for people who would reach out to strangers with a phone call. The world is full of beautiful people.
Love,
Jane and Jeff
Sunday, May 4, 2003 4:10 PM CDT
Dear Friends,
What a nice lazy day. It started with breakfast in bed for Jane. Maddie delivered an Egg McMuffin. Yes, it was her 37th birthday. Thank you for all the well wishes.
Jeff went to church. Maddie and Sam stayed in their jammies until noon. Max watched some t.v.
We went to Mt. Pleasant in the afternoon. We went to Aunt JoJo’s house, and she watched the kids while we went out for a while. It was a good time. The kids destroyed Joanne’s house, but she handled it with incredible ease.
Hope everyone had a good weekend. We thank God for aunts.
Love,
Jane and Jeff
Date: May 17th
Format: 4 Person Scramble
Time - 9:00 and approximately 2:00 PM - depends on when first group
finishes
9:00 – Trimper’s Family & Friends
2:30 - Usual Hack & Slammers
Though welcome top play in either group.
Cost: $75 - covers golf, cart, t-shirt, hat, meal, and beer on course
Location: Kimberly Oaks - St. Charles, MI 989-865-8261
Saturday, May 3, 2003 7:06 PM CDT
Dear Friends,
We had another good day. It was very busy though. Maddie and Jane went shopping this morning to have a little mother and daughter time. The boys stayed home and did some exercises. Max’s appetite was much better today. We were happy to see him eating lots.
In the afternoon, we had the first official meeting of Team Trimper. Family members and some friends who had done research for us got together and went over all we know about MLD. We tried to keep the group small until we get some focus. We listed what we know and need to know on a variety of topics ranging from gene therapy to media contacts. It was a good meeting and lasted about two and a half hours. We are hoping that after a couple more meetings we have a vision and game plan for how we want to tackle this disease. We will need help though. Our media team (Jeff and Jane’s sister Jill) are going to plan a media blitz to various t.v. shows or magazines. We will let you know what they plan. There will be lots to do for anyone who would like to help us. We are also sending a small crew led by Jeff to an event in Canada next weekend. An MLD organization called Bethany’s Hope is having a ‘gala’. They are going to take our group on a tour of their lab on Sunday and let us talk with their doctors. We hope to learn lots. It was a busy and productive meeting. We are sure everyone was a little overwhelmed with information overload. The food was great. Thanks Joanne and Claudia.
We have never felt more hopeful for our children. It is wonderful to be proactive.
We thank God for our kids.
One more thing: Max actually asked to do exercises today. He is a great kid.
Jane and Jeff
Friday, May 2, 2003 6:23 PM CDT
Dear Friends,
Max started the day with an appointment at an ophthalmologist in Grand Rapids. It was an interesting appointment. They did some tests with Max and determined that his eyesight was fine. He is having trouble moving his eyes though. He is having a hard time sending the message from his brain to his muscles that control his eye movement. That makes sense. It is the same problem he is having with the rest of his body. He knows what he wants to do, but is having a hard time making it happen. The doctor also went on to talk about MLD and encouraged lots of occupational therapy. Max’s therapist, Sarah was at the appointment and that was very helpful.
While we were waiting for the eye doctor, a doctor came over from the pediatric BMT unit in the hospital. He met with us and told us they could provide any services we were interested in. We are going to meet with him again, and that will provide help if Max develops a rash, fever, etc. Both doctors were very nice.
Max’s appetite slowed down a bit today. We hope it picks up a little tomorrow.
Jeff had another good day at school. Maddie and Sam had fun at Grandma and Grandpa’s house.
Today was Sam’s funeral in Iowa. We thought about Mary many times today.
We thank God for many things - family, friends, and community.
Love,
Jane and Jeff
Date: May 17th
Format: 4 Person Scramble
Time - 9:00 and approximately 2:00 PM - depends on when first group
finishes
9:00 – Trimper’s Family & Friends
2:30 - Usual Hack & Slammers
Though welcome top play in either group.
Cost: $75 - covers golf, cart, t-shirt, hat, meal, and beer on course
Location: Kimberly Oaks - St. Charles, MI 989-865-8261
Thursday, May 1, 2003 4:25 PM CDT
Happy May Day
Dear Friends,
What a dreary rainy day. We still managed to make it a good one. Jeff had to get an early start and headed back to school. He had a good day and enjoyed his classes. It was hard to be away but good to see the people and kids at school.
Jane and the kids had a more relaxing day. We actually cleaned the playroom in the basement. We should have taken before and after pictures. It was quite a project.
Jane and Max did P.T. on the floor. We read some books and played some catch with the ball. Maddie and Sam hung out, played on the computer and watched t.v. We all played a game that Grandma Rhode got for Max’s birthday. It was fun.
Maddie and Sam left tonight for Grandma and Grandpa’s house in Chesaning. Max is going to an eye doctor and a hematologist in Grand Rapids tomorrow. They’ll be back tomorrow evening. We are sure they will have fun. We are looking forward to Max’s appointments too. We hope to learn exactly what is going on with Max’s vision.
Max ended steroids last Sunday, but his appetite is still good. We were worried this would change right away and he would become pickier. So far, so good. And yes, he is still a fan of the Gogurt.
We thank God for boring rainy days.
Love,
Jane and Jeff
P.S. If anyone is interested in the May 17th golf outing at Kimberly Oaks Golf Course in St. Charles email Tim at tschultz@sarahsattic.com. We also have information at our house if anyone is interested. Remember you don't have to golf well. It is officially called the Hack and Slam Golf Outing. The proceeds will go to help kick MLD in the BUTT!
Wednesday, April 30, 2003 5:05 PM CDT
Dear Friends,
Busy, busy day. Max got an early start with his speech therapist today. He did a good job with her. Max, Maddie and Sam headed upstairs to watch Treasure Planet (a birthday gift) after speech.
While they were upstairs, Jeff and I had a team meeting with all the therapists. It was very informative. They have created a plan for making our house more reasonable for Max. That will get summitted to insurance and we will go from there. They seem to have a good grasp on what Max can do and what he needs to work on. They even brought him a birthday gift.
After the meeting, his Occupational Therapist and Physical Therapist teamed up on him and worked him hard. We are so proud of how well he works with all these’ teachers’. He will have a total of five therapists working with him. We are so lucky to have such good help coming to our house.
Max also did a little work with Jeff today. We are going to miss Jeff tomorrow when he goes back to work. Two adults around made it easier to give Max lots of attention.
Good day. We thank God for each one.
Love,
Jane and Jeff
P.S. If anyone is interested in the May 17th golf outing at Kimberly Oaks Golf Course in St. Charles email Tim at tschultz@sarahsattic.com. We also have information at our house if anyone is interested. Remember you don't have to golf well. It is officially called the Hack and Slam Golf Outing. The proceeds will go to help kick MLD in the BUTT!
Tuesday, April 29, 2003 7:47 PM CDT
Max’s Birthday
Dear Friends,
Max was a year older this morning. He looked eight. A bald eight. It brings back all kinds of memories of a furry little baby being born on his exact due date. Usually we try to avoid memories, but today we relished in them.
It was a big day. We started our day with a visit from Grandma and Grandpa Rhode. They watched Max and Sam so we could take Maddie to kindergarten round up. She did so well following directions. It is hard watching her get older. We have to find a cure.
After round-up, Jane took Max up to school to visit with his class outside. It was terrific. They had cake and ice cream for him and even presents. He smiled a lot. When he got back in the car he said, “I want to do that again.” He has been so isolated. We think it did him a world of good to see other kids.
We came home and ate lunch and opened presents. He particularly enjoyed a talking Patrick figurine. And according to the Magic 8 Ball, Maddie is going to get married, Max is going to lose his ‘unibrow’, and Jane is beautiful. Hmmm.
Max’s physical therapist came this afternoon and worked with him. He rode his bike and used his walker.
In the evening, we had friends over for cake and ice cream. A nice ending to a nice day.
As exciting and special as our day was, there was an underlying sadness for us. This morning we found out that our friend in Minneapolis, Sam, lost his battle at 4:55 a.m. We spent much of today thinking about his family, especially Mary. This brought back the pain of losing Nathan and Rachael too. It is very hard to see the greater plan when three great kids lose their lives.
Tonight we thank God for Sam, Rachael and Nathan. We pray for Sam’s family tonight.
Love,
Jane and Jeff
P.S. Thanks for all the birthday greetings. You all are so nice to us.
Monday, April 28, 2003 5:38 PM CDT
Day 102 Post Transplant
Dear Friends,
We had a very interesting day. It was full of both ups and downs.
Down: Max started throwing up this morning. It was very much like last time except we weren’t as nervous. He was very tired, threw up 3 times, napped for an hour and it was all over by noon. He was whipped for the rest of the day though. He ate a good dinner: chicken, salad and bread. So far it is staying in his belly.
Up: Maddie, Sam and Jeff went shopping for Max’s birthday. They picked out some pretty good surprises. We look forward to celebrating his eighth birthday and his life tomorrow. Hopefully, he will be feeling well.
Up: Jane went shopping at Leppinks this afternoon and won $500 in their Dash for Cash promotion. Can you believe it? She was a bit shocked. The Leppink’s staff was as excited as she was.
Up: Another milestone tomorrow is Kindergarten Round-Up. Maddie is very excited and already talking about what she will wear. Is Stanton Elementary ready for our girl?
Down: Our friend Sam has been intubated and we are very worried about him and his family. We would appreciate any prayers for him. www.caringbridge.org/ia/sam He has endured way more than any 15 year old should have to. Thanks.
We thank God for birthdays. Keep ‘em coming.
Love,
Jane and Jeff
8:00 a.m. We just found out from Sam's site that he passed away early this morning. Please keep his family in your prayers.
Sunday, April 27, 2003 6:04 PM CDT
Day 101 Post Transplant!
Dear Friends,
We had another great day in the sun. Jane left this morning to go birthday shopping with her mom and Sally. Jeff and the kids had a lazy Sunday morning. Max had to go to work (PT/OT) about 10:30 am. He worked hard for about an hour and a half. Then he was whipped.
Cheryl and Chelsea stopped by while we were outside after naps. It was a nice visit for everyone. Max worked hard riding his bike. He is still having some trouble riding his bike, but he is getting stronger each day. It will be nice when we can all head to the trail for a longer bike ride.
It’s hard to believe Max is turning 8 years old this Tuesday. Max has experienced more in the past few months than he did his first 7 years. He truly is an amazing kid. He has never complained, felt sorry for himself... I think his 8th year is going to be a great one!
Jane is STILL shopping, so I’d thought I would give the journal a try. Please keep Sam and his family in your thoughts and prayers.
Thanks for checking in today. Have a good week!
(I go back to work Thursday, YIKES!)
Jeff and Jane
Saturday, April 26, 2003 5:43 PM CDT
Day 100 Post Transplant!!!!!!!!!!!!!
Dear Friends,
100 days have passed since Max’s new cells entered his body. We were supposed to plan on going home at about this time. We thank God for how well Max is doing and for the new cells making Arylsulfatase A. We are also thankful for the parent who donated the cord blood to be used to extend another child's life.
Max had a good day. He rode his bike with Aunt JoJo today. He took a good nap and ate lots of chicken for dinner.
Maddie and Sam played outside today too with Aunt JoJo. It was a beautiful sunny day. Our new favorite game is Camp Out. We get out every chair we can find in the garage. For some reason it seems to be more fun to set up then to clean up.
Thank you to those of you who said prayers for our friend Mary and her son Sam and for those who signed his guestbook. We hope things look up for Sam very soon. Please continue to keep him in your prayers. We pause several times a day and think about Sam and Mary.
Hope you all had a good Saturday.
Love,
Jane and Jeff
Friday, April 25, 2003 4:30 PM CDT
Day 99 Post Transplant
Dear Friends,
It was another good day. The weather seems to have such a positive effect on our day. Max had O.T. and P.T. this morning. He rode his bike and worked on upper body strength. He is still congested and pretty tired.
Maddie, Sam and Jeff went to Williamston to see Aunt Sally, Uncle Bill and the cousins. This made it nice and quiet in the house for Max’s therapies.
Max and Jane went into town after his nap and picked up a couple of prescriptions. Max then went into our grocery store and bought two Bionicles with some Easter money he received from Grandma and Grandpa Trimper. It was nice to see him in a public place. He stood out in his wheelchair, bald head and mask. In true Max style, he never noticed.
We are in need of the prayer army on behalf of a friend. We met Mary and her son Sam in Minneapolis. Sam has been through a lot including three consecutive BMTs. Sam needs prayers tonight. His kidneys are failing, and I could tell by Mary’s journal that she fears he is starting a major decline. Please pray for Sam Keiner. Someday we will tell you more about Mary. She is a wonderful example for us in many ways. Thanks for your help. If you’d like to check on the family or sign their guestbook his site is:
www.caringbridge.org/ia/sam
We pray for Sam tonight. We thank God for listening.
Love,
Jane and Jeff
Thursday, April 24, 2003 6:38 PM CDT
Day 98 Post Transplant
Dear Friends,
To put it simply: It was a good day. We played outside in the morning. Max rode his bike (with help) for a half an hour. We played camping and ate hot dogs outside for lunch. Max took a short nap before P.T. came.
While Max was napping, Dr. Krivit called. He said Max’s enzyme level (Arylsulfatase A) is 62. It was around 7 before transplant. Mine (Jane) is about a 36. Dr Krivit said, “His is higher than yours.” That is a competion I am happy to lose. We are not exactly sure what the number means as far as Max’s recovery, but Dr. Krivit ended the conversation with “Congratulations.” We liked the sound of that.
Maddie, Sam and Jeff went to his classroom and started to prepare for Jeff’s return next week. This made things quieter for physical therapy.
Later in the day we all went up to the high school to watch softball and baseball. It was nice to be outside and not have to worry about germs. Max got a bloody nose while we were there. We were glad to see the platelets working. Max is congested. We aren’t sure if he has a cold or is getting allergies. The BMT clinic said not to worry unless there is fever.
It was a beautiful, warm and sunny day. We thank God for Max’s great enzyme number.
Love,
Jane and Jeff
P.S. We mentioned a little girl named Presley a long time ago in the journal. She has been on the BMT floor of the hospital since October. She is being released tomorrow. Yay!
Wednesday, April 23, 2003 5:55 PM CDT
Day 97 Post Transplant
Dear Friends,
Thank you Sally for putting last night’s journal entry up on the web page. We were afraid someone might worry if they didn’t hear from us. Just one call to Sally and it was taken care of. Thank you also to Grandma Trimper. Maddie, Sam and Kippy were in good hands and had lots of fun.
Max’s surgery went well yesterday. They took out his line under anesthesia. It came out easiy and he was only in the operating room fro 45 minutes. We left Minneapolis as soon as Max was done at the hospital. That turned out to be a mistake. He threw up as soon as we hit the state line. He made it to Janesville, Wisconsin. We got a hotel room and let him rest in bed.
He didn’t sleep the best last night. He woke often and seemed to have a bit of a stomach ache. We didn’t leave right away. He ate a little bit and we gave him his meds. As time went by, he seemed fine so we finished our trip home. We arrived around 3:00 p.m. It felt good to be home again.
That pretty much finishes the summary of our short trip to Minnesota. His blood work looked fine. His MRI was unchanged since the last one. We will find out about his enzyme level later this week or early next week. His line came right out. He is finishing his Prednisone this week. He will finish his CSA drug in two weeks and will start a taper of his seizure medicine at that time. He will also finish up his Prevacid 10 days after he finishes the Prednisone. It will be nice to be down to just a few meds.
One interesting thing happened yesterday morning. As we left for surgery at 6:30 a.m., we showed Max a new huge Spiderman in the playroom at the Ronald McDonald House. We told him to make his hand like Spidey’s. He did it with a little concentrated effort. As I was wheeling him away, he said, “Mom, was this disease supposed to happen?” As this is not at all a ‘Max-like’ thing to say, Jeff and I were both a bit stunned. I began blinking a little more rapidly and made some grown up response like “Yes, you were born this way. It is your genes. It isn’t anything you did.” Jeff and I exchanged looks and left for the hospital. After a ten hour car ride and many minutes waiting in a waiting room thinking about Max’s question and why he asked it now, I wish I could have changed my answer. A simple “Yes, Max.” would have been good response. I thank God and Max for reminding us that this disease is supposed to be happening. We just don’t know why yet.
Love,
Jane and Jeff
This was a guest book entry from a friend in Charlevoix. We appreciate how hard they are working. Again all the kindness from people leaves us speechless.
Just an fyi to those of you checking the guestbook every so often...The Charlevoix Coalition Against MLD will be hosting a benefit for the Trimper family on Sunday, June 29th from 2-6pm at Castle Farms in Charlevoix, MI. Tickets go on sale May 1st at area businesses (Bridge Street Bookshop & Shop of the Gulls in Charlevoix). We are currently looking for donations of auction items for the live & silent auctions, as well as sponsors for the event. For more info, please contact one of the following committee members: Sam Supernaw: 547-9661; Lenore Morgridge: 547-7535; Noni Morgridge: 547-9288; Dane Tollas: 348-7317; Ron Way: 547-6592; Dave Herboldsheimer: 547-6195; Kendall Campaigne: 675-7338
Kendall Campaigne
Charlevoix, MI USA - Monday, April 21, 2003 5:13 PM CDT
Tuesday, April 22, 2003 5:16 PM CDT
Hi All,
This is Jane's sister Sally. The Trimpers are unable to access a computer tonight so I was asked to update the journal tonight. They have stopped for the night in Wisconsin.
Max had his Hickman line out today and that went well. He was a little sick and out of it on the drive. The blood work results they received today were what they expected and the MRI as well. They will get the rest of the blood work results at a later date.
I thank God for Jane and Jeff's amazing strength.
Sally
Monday, April 21, 2003 4:50 PM CDT
Day 95 Post Transplant
Dear Friends,
We had a busy day. We were at the hospital by 7:00 a.m. for a chest x-ray and an MRI. Max did very well and stayed so still for the MRI.
We then met with Dr. Krivit and Max gave at least 12 vials of blood for a whole bunch of tests. Dr Krivit's wife is doing better although still in pain from the shingles. He had lost some weight. This worried us a little, but he assured us that things are looking up at the Krivit home. He was wearing his Kick MLD in the Butt t-shirt. It looked good on him. Jeff took a picture of him and we will put it on the site as soon as we get home. Dr. Krivit is going to find us tomorrow while Max is in surgery for his Hickman line removal and tell us how the blood work came out.
Max then had a pulmonary function test done. He had to blow in a tube. No big deal. We think it is for the University's research.
We then met with a Pediatric Neurologist and talked about Max's seizure medication. We are going to start a taper in two weeks and work at getting Max off of it.
That kinda wraps up our day. Max was very tired after all the waiting and grown ups talking. He came back to the Ronald McDonald House and watched cartoons.
We have some mixed emotions about being back here. The house lost a very special child this weekend. It was a huge slap back to the reality of all these diseases. There is a very sad mood around the house. We also got to see familiar faces, some with good news and some with bad. It is interesting that even though we check several caring bridge sites a day, we had already forgotten about the daily hospital grind that many of these people are still doing. We will be saying lots of prayers tonight. We thank God for the good news and hope it keeps coming for all the RMH kids.
Love,
Jane and Jeff
Sunday, April 20, 2003 6:33 PM CDT
Day 94 Post Transplant
Dear Friends,
We arrived in Minneapolis at 5:30 p.m., Michigan Time. We had a nice ride and made good time. Max is very tired. He didn't take a nap. Tomorrow, Max will have an MRI, a meeting with Dr. Krivit and a check-up with a Pediatric Neurologist. Busy day.
Hope everyone had a nice Easter.
Love,
Jane and Jeff
Saturday, April 19, 2003 6:12 PM CDT
Day 93 Post Transplant
Dear Friends,
Another day full of fun and family. Grandma and Grandpa Rhode came to visit this morning. Aunt JoJo came in the afternoon, and Grandma Trimper came in the evening.
The Easter Bunny must have stopped by last night. We know three kids with new pajamas and sunglasses.
Max had a busy day and handled it well. Hope everyone has a good Easter tomorrow. We are going to spend the day on the road and may not be able to update. We will try, but we’ll update for sure on Monday.
Love,
Jane and Jeff
Friday, April 18, 2003 8:52 PM CDT
Day 92 Post transplant
Dear Friends,
Sorry for the late upddate. We don't want to make people worry. We had a good day. Max had an hour of O.T. this morning. We took a drive. Maddie, Sam and Jeff went to Walmart. An ordinary day. Good friends came over to watch the kids, and Jeff and I went out for dinner. It was nice to get out. We had a chance to talk about what our game plan will be to help get rid of this disease. We'll tell you more later as we get things ready.
The tabs on the cans are just the little things you pull to open them. According to a RMH source, the tabs have more 'recycleable' aluminum then the whole can. They are clean and easy to keep. We appreciate all the interest. (As do all the families who have stayed in a RMH.)
No spell check tonight. Forgive us for typos. Hope you all had a 'Good Friday'. We thank God for all that Easter really means.
Love,
Jane and Jeff
P.S. The Easter Bunny sent us an email card and he's going to come tonight. That is one nice rabbit.
Thursday, April 17, 2003 7:02 PM CDT
Day 91 Post Transplant
Dear Friends,
We need to start with some thank you’s tonight. We need to thank the American Legion in Stanton and Stanton Elementary School for the can tabs they delivered tonight. We have 7 (large 2'x3') boxes of tabs in the Suburban ready to be delivered to the Minneapolis Ronald McDonald House. Remarkably, that particular house earns $65,000-$85,000 a year on the tabs. Nice job. We are very proud to deliver them. Jane’s sister, Sally is a volunteer at the Lansing RMH and she said that they also accept tabs. We would be happy to deliver them if anyone wants to start collecting.
We had a nice day. Max didn’t have any therapists over today. We had lots of fun visitors today. We saw Cheryl, Jamey and Michelle, Story Grandma and the guys from Crystal Automation. (Thanks CA guys, Amy and Steve.) We then got to see the Kohns, Hansens and Ginger in the evening. What a great day full of good friends. Thank you, God.
Love,
Jane and Jeff
Wednesday, April 16, 2003 7:05 PM CDT
Day 90 Post Transplant
Can you believe it?
Dear Friends,
Max had a busy morning full of hard work. He did physical therapy for an hour and then did speech with his speech therapist. Both told us he worked hard again. Go, Max!
The morning wore him out and he napped for a short while and relaxed for much of the afternoon. We had two visitors today. John, one of our good friends of Charlevoix origin, came and spent a couple of hours. Then after school Ginger came over.
Maddie and Sam went to Story Hour at the library today and grocery shopping with Jane. It helps to clear them out of the house during Max’s therapies.
Sound pretty ordinary? Yep, it was. Put some hair on Max and take away the wheelchair and it is how we spend a normal, cold, yucky day at home.
We thank God for today.
Love,
Jane and Jeff
Tuesday, April 15, 2003 5:35 PM CDT
Day 89 Post Transplant
Dear Friends,
A quiet day at the Trimper house. We flew kites outside for a little while. Maddie and Sam rode bikes on the trail. Max had occupational therapy this afternoon. Max played 2 games of Rugrats Uno with Maddie and Jane.
We are leaving on Sunday (Easter) to go out to Minnesota for Max’s 100 day check up. He will get his Hickman Line removed while we are there. We will head home on Tuesday and probably spend the night somewhere in between. We should arrive home on Wednesday. Jeff’s mom is coming to Stanton to take care of Maddie and Sam. They are going to go to church Sunday and then head to Aunt Jill’s (Jane’s sister) house for Easter dinner. We have written to the Easter Bunny, and think he will visit us on Saturday. He is so flexible.
We thank God for good kite flying days.
Love,
Jane and Jeff
Monday, April 14, 2003 7:20 PM CDT
Day 88 Post Transplant
Dear Friends,
Max had physical therapy this morning. His therapist worked him hard. He was walking in the house with the walker. Carpet is tough. She told us when they were done that Max worked very hard. We are very proud of him.
We had an outdoor day. Max took a roll on the trail. Maddie and Sam stayed outside most of the day and helped Jeff ‘work’. Surprisingly enough, Jeff got a lot done. The yard looks good.
We thought about all the teachers back at school. Jeff is looking forward to going back, but we are very happy that he isn’t there yet. It has been quite an adjustment coming home. Lining up the therapists alone has taken a lot of time. We have been lucky enough to have our insurance case worker, Robin help us.
Before we left Minneapolis, the therapists told us there would be good days, bad days, and long plateaus with no improvement. Now that we are home, we realize what they were telling us. It is hard to watch as Max continues to lose skills. It is the little day to day changes that we have to continually adjust to. It can be painful.
It is also painful to watch Maddie and Sam. We just watch and worry. Then we remember Max at that age and ache again. It is tough.
We pray for healing. We pray for strength. We pray for hope.
Love,
Jane and Jeff
Sunday, April 13, 2003 6:25 PM CDT
Day 87 Post Transplant
Dear Friends,
Not much to say today. We had a quiet Sunday. Hope everyone had a good weekend.
Love,
Jane and Jeff
Saturday, April 12, 2003 6:22 PM CDT
Day 86 Post Transplant
Dear Friends,
It was another beautiful day in Michigan - just a little colder. Again things were pretty ordinary. Max had a little more energy than yesterday. He did a lot of work with Jeff this morning. What a dad! It is often hard to work with Max. As parents, it can be frustrating when you believe he can do more. It is also hard to see what skills he has lost. Jeff worked patiently on everything from O.T. to P.T. to reading. Jeff is amazing.
For some reason, it was another emotional day. Not sure why - just some days seem to be like that. As usual, something occurred to help pull us out of that. Today it was a call from Patty, an old friend from Chesaning. (That’s who I am talking to in the picture.) It was just what I needed and I didn’t know it. It renewed my faith yet again. We are so fortunate to have people in our lives who help provide faith and hope when we need it. We have had several people who just said the right thing at just the right time. We also have people who share their experiences and we pull off their strength. We have heard and read amazing testaments to prayer and the miracles of modern medicine. We thank God for putting all these people in our lives. We hope we can return the kindness to many others.
Hope everyone had a good weekend.
Love,
Jane
Friday, April 11, 2003 7:02 PM CDT
Day 85 Post Transplant
Dear Friends,
We are back to ordinary. Max woke up feeling fine. He did take a three hour nap today though. He and Jane walked out on the Heartland Trail and tried to spy some turtles. There was only one, and Max couldn’t see it. It was still a beautiful day and the walk/roll gave us some time to have a nice talk.
Maddie and Sam spent last night at Aunt JoJo’s house. They had a good time and stopped at Great Grandma Rhode’s house to wish her a happy birthday. When they got home, they rode their bikes around the driveway.
We thank God for ordinary. Have a great weekend.
Love,
Jane and Jeff
Thursday, April 10, 2003 5:36 PM CDT
Day 84 Post Transplant
Dear Friends,
Remember yesterday how we said things could change in a day? First thing this morning, Max started vomiting. We called the BMT clinic in Minnesota and they were very relaxed about it. They thought it sounded like the flu. We asked why they didn ‘t think it was GVH disease and they said GVH wouldn’t have happened so suddenly. Max threw up a few more times and took a couple of naps.
Now we have to admit, we do not handle these things very well. When we were at the Ronald McDonald House, the families there always seemed so calm and in control. When we were calling the BMT clinic, our hands were shaking. We had absolutely no idea what to do. We think of ourselves as good problem solvers who can handle some pressure. Wrong. Not when it comes to these kids.
We were having flashbacks to Max’s seizure. He woke up that morning in February, threw up, had a headache and was very tired. Just like this morning. The biggest difference was that this morning, he was more aware and had a bit of a twinkle left in his eye. Anyway, the call to the clinic put us a bit more at ease, but we just watched him all day and took his temperature about 26 times.
We hope Max shows no other signs to worry about. We thank God for helping us make rational decisions. We thank God for Max, Maddie and Sam.
Love,
Jane and Jeff
Wednesday, April 9, 2003 6:23 PM CDT
Day 83 Post Transplant
Dear Friends,
It is funny when you can’t remember how many days post transplant it is and you have to look at the last journal entry. It is easy to take Max’s health for granted. We have been rolling along so well and each day is pretty consistent. We have to remember that things can change in a day. However this day was great. Max did lots of work this morning. He skipped his nap and was very tired by dinner time.
It was sunny and warm. It felt good to get out a bit today. We called the library ansd asked if many people were there. They said it was empty so Max, Sam and I went into town and checked out some books. It felt good to have Max out and about. We love our library.
The P.T./O.T. people came today and looked over our house. They reccomended changes that could be made for Max. They had good ideas. We will have to make some changes.
It was a good day. We thank God for continuing to lay the path for Max’s healing. We also thank Carolyn W. for sharing her incredible story and giving us a reminder about how powerful faith can be.
Love,
Jane and Jeff
Tuesday, April 8, 2003 6:47 PM CDT
Day 82 Post Transplant
Dear Friends,
A very ordinary day. We love it.
We are back in research mode. Last night we kinda fired back up to help make a difference against MLD. We shall see where it takes us. Lots of information. Lots to learn. We sent out word to the families in our MLD discussion group and hope to gain support and knowledge from some people facing the disease. We need to thank our friend Corby. She is continually finding information on the latest being done. She has been invaluable. We pray that God keeps leading our way.
Hope everyone had a good day.
Love,
Jane and Jeff
Monday, April 7, 2003 5:44 PM CDT
Day 81 Post Transplant
Dear Friends,
Max had a busy day today. We went to Dr. Crittenden’s office for a check up and to find out the details on having Max’s blood work done. Dr. Crittenden told us that the hospital would be able to do the blood through Max’s Hickman Line. Unfortunately, we had to wait until after 1:00 for one of the tests. It needs to be overnighted to Minnesota and had to be done in the afernoon.
We came home and Max’s physical therapist, Beth came to see him. He walked for a while with her.
We went to the hospital to give blood after P.T. The nurse who took the blood was very nice. As soon as we entered the room, she said, “Max Trimper. I’ve been following your story on the web site.” It was funny. He is famous.
Other than that, it was an ordinary day. Max missed his daily nap, so it should be an early night.
Thanks for checking in.
Love,
Jane and Jeff
Sunday, April 6, 2003 6:40 PM CDT
Day 80 Post Transplant
Dear Friends,
Today was another good day. Grandma and Grandpa Trimper came to visit. Grandma brought the most delicious chicken paprikas. Yummy. Max worked hard today. He climbed all the steps going upstairs with Jeff’s help. We are so proud of him. Hope all of you had a geat weekend.
Love,
Jane and Jeff
Saturday, April 5, 2003 5:22 PM CST
Day 79 Post Transplant
Dear Friends,
It continues to be great to be home-even in this cold icy weather. We had a large limb puncture holes in the garage last night. It is funny how something like that does not seem like too big a deal anymore.
We had a quiet day. Max continues to take a nap midday. Maddie usually takes one too. Sam doesn’t sleep during the day at all. Aunt JoJo came for a visit.
We said yesterday that we would be thanking friends today. Here goes:
We thank Ginger for getting our mail, paying our bills and taking in MLD donations. This was a big job and we are still amazed that she could do it all.
We thank Eric for helping with the house. He was very good about heading out and turning on and off the water at every call.
We thank Jim and Tom for keeping our driveway clear and yard looking good.
We thank Tammy and Penny for getting the benefit in Stanton rolling and organized. It was a great event and we still talk about it.
We thank Julie for cleaning out the house for us. She cleaned the blinds which is so good for Max.
We have said it often, but it certainly could use repeating. We thank everyone who said prayers, sent cards, and checked the website.
We also thank old friends who have been so supportive. We have become reaquainted with many friends we had lost touch with.
Tonight we thank God for friends.
Love,
Jane and Jeff
Friday, April 4, 2003 4:32 PM CST
Day 78 Post Transplant
Dear Friends,
We had a very ordinary day. Thank you, God. We got up. We ate breakfast. We played some and worked some. We ran some errands. Max’s speech therapist dropped by for a visit. It was a good day.
An ordinary day does not make for an exciting journal entry though. We decided to use tonight’s entry as a time to really give credit to our family. We really need to thank them in a big way. The four grandparents and Aunt JoJo did such a great job taking care of Maddie and Sam. We are still hearing about their time in Michigan. “Blame Bear if you toot.” “Big Grandpa let us have diet pop.” “Back off, Jack.” We know it was good for the kids to spend time with family. We believe it may have also been good for the family members.
We need to thank Grandpa Strawberry and Joanne for helping around our house. We still can’t figure out how Grandpa got the bunk beds apart by himself. Rumor has it that Joanne cleaned the basement one time too. That is an overwhelming job - and not one that gets done too often!
A big thank you needs to go out to Sally and Bill. They had the dirty job of taking care of Kippy. For those of you who don’t know them, Bill and Sally have three children, (ages 7, 5, and 3) a dog, and a cat. They hardly needed one more dog. Kippy has been a little depressed since getting home though. She misses her friends, especially the cat.
The last thank you of this evening needs to go to the many family members who came to visit and help in Minnesota. It is a tough job to visit. They didn’t want to intrude but wanted to be of help. They had to deal with us when we were a bit irrational, a bit stressed and a bit loopy. They never complained. They brought new energy. They made us feel loved. We are very grateful to them all.
These thank you’s were focused on family. Tomorrow we are going to do the friend addition.
Love,
Jane and Jeff
Thursday, April 3, 2003 5:28 PM CST
Day 77 Post Transplant
Dear Friends,
We had an uneventful day. Max continues to have no complications. This is always a relief. We hung out at home all day and played, watched t.v., put away clothes, etc. We are still adjusting a bit. Max just said from the chair, “It’s good to be home.” We all agreed. Hope you had a good day too.
Love,
Jane and Jeff
Wednesday, April 2, 2003 7:13 PM CST
Day 76 Post Transplant
Dear Friends,
We are sad today about the loss of Nathan. We had met his mother, Rhonda in Minneapolis during our first trip out there last November. She came into the conference room to talk with us. We can just imagine how we looked. We were scared and trying hard to soak in all of what Dr. Krivit was trying to tell us. She was honest with us. She told us that the BMT was a big endeavor and that she was getting through it with prayer. We were very impressed with her medical knowledge, never dreaming that someday we would also be talking about potassium levels and the WBC count. She made quite an impression on us, and we are so sorry about her loss.
That is the part of this journey that is so hard to explain to people. Being next door to a dying child and feeling the parent’s pain has had an incredible impact on us. When researching BMT’s, a mortality rate of 20% was given to us. This was probably accurate. We naively thought that the adult BMT rate was higher and that the children had a better chance of survival. We were wrong. We can name too many kids who did not make it. The world is forever changed for us.
We write all this to give you a better perspective on why we try to appreciate all we have with Max. When we have moments of depression, we think of Kathie and Rhonda and the other families. We would be ashamed if we did not appreciate all we had. We honor them by trying not to take one day for granted. We owe it to them. We owe to Max.
On a much lighter note, we had a good day. The P.T./O.T. people from Grand Rapids came to the house today. We feel good about what they can do for Max. Lunch was a beautiful sight - all three kids sitiing at the table eating grilled cheese sandwiches. It is the simple things we thank God for. Hope you had a good day too.
Love,
Jane and Jeff
P.S. We do have to go back to Minnesota on April 21 and 22. Max will have his 100 day tests done at that time. Maddie and Sam will stay here. Thanks for your continued interest.
Tuesday, April 1, 2003 6:19 PM CST
Day 75 Post Transplant
Dear Friends,
Boy, do we live in a great town! As we pulled in the driveway last night, we saw signs hanging and all kinds of nifty lawn decorations. In the daylight this morning, we were able to see the beautiful sight of the shoe tree and racing sign in the garage - not to mention the enormous Easter basket on the porch. A favorite was the backside of a man that said MLD and a shoe that would kick it if you pulled the handle. It was a pleasure to stroll around the lawn and read the nice notes hanging on some of the decorations. We believe our favorite said, “It was so nice to buy this stuff knowing it wasn’t going in my lawn.” You all have been such a force behind us. We are so lucky to live here and have so many caring people looking out after us.
It was an emotional day. The reality of what we have gone through washed over us. Tears came easily. We are both happy for how well Max is doing and so sad for what he has to go through. We are ready to continue the battle against MLD, but some days the road looks long and lonely.
We had a reality check at the school today too. Jane and Maddie went in to send some information and were able to see many people. The hugs from the kids in Jane’s class were priceless. As they were leaving, it was mentioned that some kids had had chicken pox. Jane was now paranoid that she and Maddie were going to contaminate Max. She called the BMT clinic in Minneapolis. They told us we were fine because Jane had had Chicken Pox and Maddie was vaccinated for them. They could not carry the virus. Worrying for nothing.
Now as we stated earlier, it was an emotional day. Sadness, happiness, anxiety etc. Then at 6:10 p.m. the parade started along our driveway. We had car after car drive through and shower our kids with treats. It was amazing. For some reason, that road to battle looks less long and more crowded. Have we said thank you lately. We thank God for all the people who have prayed, supported and helped us and would take the time to beep and drive through our yard.
Love,
Jane and Jeff
Monday, March 31, 2003 9:45 PM CST
Day 74 Post Transplant
Dear Friends,
As of 8:40 p.m., we are home. Max was smiling and laughing and very happy to be here. He is now tucked into his bed sleeping peacefully. We can't wait to see Maddie and Sam and Kippy tomorrow. We will share more tomorrow. We thank God for home.
Love,
Jane and Jeff
Sunday, March 30, 2003 4:07 PM CST
Day 73 Post Transplant
Dear Friends,
I can’t tell you how many times I have cried when I read the guestbook. But when I went to Nathan Fleming’s guestbook to write to his family and saw how many of you had written words of encouragement, the tears started up again. You have been so amazing and supportive of us and to do that for someone you have never even met is so generous. I have learned to be a better person thanks to you.
Nathan’s situation is scary. It scares me as a mom. His problems are all related to the BMT not MLD. Things can change so fast. It is a constant reminder to thank God for how well Max is doing.
Today was packing day. The Suburban is loaded. Jeff did all the work. He is a master at packing a car. We have the bare minimum to get us through tomorrow. We go to clinic at 8:00 and hope to be on the road by 9:30.
Nothing else happened today. We did some physical therapy with Max. He walked a bit with his walker and without it. It is very hard work for him.
“Where we love is home, home that our feet may leave, but not our hearts.” Oliver Wendell Holmes Sr. Whether it be Chesaning, Charlevoix or Stanton, there is no place like home. See you back in Michigan.
Love,
Jane
P.S. Looking forward to tonight's game. Go Spartans!
Saturday, March 29, 2003 6:56 PM CST
Day 72 Post Transplant
Go Spartans!
Dear Friends,
We had company this morning. If you read the guestbook, you have read entries by Coach Deano from Ferris State. He and his wife, Joyce were in Minneapolis for Ferris hockey and they stopped by to visit. Dean and Joyce spend summers in Charlevoix where they are friends of Don and Marcia (Jeff’s parents). Coincidentally, they also knew Bob and Claudia (Jane’s parents) from Central Michigan Days. It was good to see them. They went out for breakfast with Jeff and then came in to RMH to visit.
Weekends are very long here. It seems to be longer with the end in sight. We went for a drive. Then Max and Jeff went for a long walk/roll along the river. It was a beautiful day but cold.
Max continues to eat a lot. Bar-B-Que chips and Happy Meals are still favorites. He will probably eat a couple on the drive home on Monday.
Hope all is well with all of you. We thank God for boring days.
Love,
Jane and Jeff
P.S. On a very serious note, there is an MLD teenager in big trouble in Texas. His name is Nathan Fleming. I have never given out a caring bridge site because I never thought it was right to do it without permission, but they need prayers.
www.caringbridge.org/tx/nathan
Thanks for anytime you can give this family. We thank God for our prayer army.
Friday, March 28, 2003 6:01 PM CST
Day 71 Post Transplant
Dear Friends,
Go Spartans. Jeff has made web page green and white in their honor. We look forward to the game tonight.
Max had his last P.T./O.T. here in Minneapolis today. He got to work with Reggie again. He was our first physical therapist and our last.
We had to do a little shopping this snowy morning. He eats a banana a day to keep his potassium up. We were out and had to restock.
Boring Day. It takes us one step closer to coming home.
We pray that Max keeps improving, and we thank God for each step forward.
Love,
Jane and Jeff
Thursday, March 27, 2003 5:33 PM CST
Day 70 Post Transplant
Dear Friends,
We had an earlier start to our day today. Max had P.T. at 9:00. He worked hard and Heather thought he was doing very well in his braces. She even had him do stairs today. Max had to say goodbye to Heather today. She isn’t working tomorrow. He will miss her. We appreciate all she did for Max.
After P.T., he had O.T. He has been working with a new Occupational therapist this week. She provided us with good information and gave us many ideas to take home.
It was very dreary and rainy today in Minneapolis. It kept us inside today. We are just trying to fill our time until we can load up the car and get ready to come home. We miss everyone so much.
We thank God for our boring days.
Love,
Jane and Jeff
Wednesday, March 26, 2003 6:16 PM CST
Day 69 Post Transplant
Dear Friends,
Max and Jane headed over for P.T. and O.T. this morning. Max worked hard. We haven’t seen a lot of improvement in the past few days. They told us we would have ups and downs and plateaus that can last for several days. We are hoping we are stuck on a plateau for now. He did get his braces right when we left. They are cool looking with a big Spiderman on the back of each one.
Feeding him has become a full time job. He thinks about food constantly. This is so different from the Max we know. We are enjoying it while it lasts. It will be interesting to see how he eats after the steroids are finished.
We think it is time for a physical and mental update. Max can only walk a couple of steps by himself. His balance is very shaky and he tends to lean backwards which will cause him to fall. His left foot is turning in more than ever. Even walking with the walker for a short distance tires him easily and is very hard work. He can not write legibly. It is very difficult to hold a marker, pencil etc. He can feed himself with finger foods. He does o.k. with a fork and spoon but would prefer to use his fingers if we let him. We are working hard on manners while eating. His sense of humor is pretty good. He makes some good jokes. Sometimes he will say inappropriate things. We have to remind him what is o.k. and what is not. He takes all his meds in pill form. He is very good at this. He can get in and out of the bathtub with a little help. He can move himself all around in bed (roll, turn, scootch back, etc.). He can crawl very well. That pretty much sums it up. He is different than when we arrived. We can’t explain what is MLD damage, BMT damage, or seizure damage. Time will tell what skills can come back and what can’t.
Maddie and Sam are having fun at Grandma and Grandpa’s house. They got gardening tools from Aunt JoJo and have been making big holes in Grandma’s garden. They also got to ride on the big tractor and that was pretty exciting.
Only four more days. Thank you, God for keeping Max well.
Love,
Jane and Jeff
P.S. A note just came in from a family member that we should mention that all of Max's immunizations he received as a baby are gone. When you have the stem cell transplant you have to be immunized all over again a year after transplant. That is one of the reasons these kids have to be kept in a sterile environment.
Tuesday, March 25, 2003 5:41 PM CST
Day 68 Post Transplant
Dear Friends,
So many positives have come out of our whole experience here in Minneapolis.
1. We have heard from old and very good friends.
2. We have met some new amazing families here in Minneapolis.
3. We have become less selfish.
4. We have become closer to God and believe strongly in the power of prayer.
5. Priorities have become better organized.
6. We have a whole new appreciation for Stanton and all of Montcalm County.
7. We have new appreciation for nurses, doctors, and volunteers of any kind.
8. We have learned an incredible amount about white blood cells, Potassium, etc.
9. We have discovered that Max is darn good looking without hair.
10. We have proven that our Rhode and Trimper family members are more wonderful then we even thought. (and we thought they were pretty amazing to begin with)
11. We realize yet again that we have some of the best friends in the world.
We could go on and on.
Max continues to work hard at P.T./O.T. He continues to be tired. We are thrilled that he has had very few complications. We thank God he is our son.
5 more days in Minneapolis.
Love,
Jane and Jeff
Monday, March 24, 2003 6:38 PM CST
Day 67 Post Transplant
Dear Friends,
We had a busy morning. Jeff took Uncle Mark to the airport at 4:00 a.m. We will miss him. He kept our minds on basketball and cards instead of doctors and enzymes.
Max had clinic at 9:00. His blood work is again consistent and good. Dr. Peters believes we will be going home on Monday, March 31st after our clinic appointment at 8:30. We are hoping to go home while knowing things can change in a day around here.
Max had Physical Therapy and Occupational Therapy after clinic. He worked hard and we are hoping his braces are here tomorrow. We bought him some new tennis shoes to fit over the braces. We hope they fit. We aren’t exactly sure what to expect with the braces.
There are definitely mixed emotions about coming home. We are so excited to be in our house, see our friends, and have all three kids together again. However, we are worried about having to keep people away from Max. We also feel badly for families that have been here a year and can’t go home. It makes for some funny feelings.
Another worry for us is how people will deal with Maddie and Sam and what they will hear. They know nothing about their situation. Although we worry about them, they have something Max didn’t have - time. We pray that in the next two years something big happens with MLD.
We thank God.
Love,
Jane and Jeff
Sunday, March 23, 2003 5:15 PM CST
Day 66 Post Transplant
Dear Friends,
We got a late start today. We didn’t wake up until 8:45. Max didn’t get out of bed until 10. It was great.
Since it was a nice spring day, we went back to Stillwater and wandered the town. We stayed outside the whole time so Max was never in a crowd. We are so nervous about germs.
Our good ole Chippewas fought valiantly last night. We are not too sorry that Duke won yesterday. They did donate the team autographed basketball for the benefit. A very nice young man owns it and will probably be thrilled if Duke wins the whole thing. We are rooting for the Spartans tonight.
We pray that Max keeps improving. We pray that the braces help with his walking.
We thank God all three kids are happy.
Love,
Jane and Jeff
Saturday, March 22, 2003 6:41 PM CST
Day 65 Post Transplant
Dear Friends,
We woke up very early this morning (5:00 a.m.) so Grandpa, Maddie and Sam could make it to the airport in time. We had a hard time saying goodbye to them. Jeff drove them to the airport while Max and Jane watched some cartoons. They were napping by 6:15 a.m. It is always nice on the weekends to not have P.T., O.T. and clinic. We can lounge around and be lazy.
It was a beautiful warm sunny day in Minneapolis. Around 11:00, we went with Uncle Mark to a small zoo in St. Paul called Como Park. It was good to be out and about walking around.
Max came home and took another nap. Jane went into the kitchenette and brought in a pill for him, and he was already asleep.
When he woke up we did some moving around the apartment. He watched some T.V. Then we drove to a bridge overlooking the Mississippi River and made some wishes with some special stones. (We have great friends.) Mark and Jane walked Max back to the Ronald McDonald House while Jeff took the car back.
Time to get ready to call the little guys and then watch the Chippewas tonight. We thank God for many things today. Many of the Caring Bridge sites that we check up on had good news tonight. We thank God for healthy kids.
Love,
Jane and Jeff
A side not for those of you who can tolerate the gushy stuff. As we were walking across the bridge, a family went by on their bikes. I felt a pang in my heart as I watched them. Then I thought of all the parents who would give anything to have their child by their side- even in a wheelchair, - talking and laughing with a perfect blue sky above. Perspective is everything.
Jane
Friday, March 21, 2003 6:56 PM CST
Day 64 Post Transplant
Dear Friends,
We had a gray and rainy day today. Max was pretty low energy most of the day. We went to P.T. first this morning. Max spent most of the time getting casts made that will be the mold for some braces he will get next week. He picked Spiderman to go on the back of them. They will help his legs stay straight.
After P.T. we had to go see the doctor at clinic that is subbing for Dr. Krivit. He looked Max over and agreed that he looked good, and his blood work was great. He told us that the clinic would call and set up people in Ann Arbor and talk with Dr. Crittenden. We were glad to have the help with that.
Uncle Mark provided fun for all three of the kids today. He is a great help. Grandpa Rhode flew in this afternoon and will be flying Sam and Maddie back tomorrow. We are so lucky to have all this help.
How about those Chips? Number 11 seed taking out a number 6. Fire up Chippewas!
On a serious note, two fathers have had to leave the Ronald McDonald House to go and fight in the military. Our thoughts are with them. We can’t even imagine the stress of both fighting for your country and your child at the same time. We told you there was inspiration all over this house.
We thank God for huge things like freedom and for simple things like watching basketball.
Love,
Jane and Jeff
P.S. Jane's mom attended a wonderful presentation at St. Louis High School today. A young woman named Andraelle Davis collected, washed and dried 16,000 pop tabs for the Minneapolis RMH. She collected another 16,000 for one in Ohio. She is another great example of character in our high schools. The future is looking good.
Thursday, March 20, 2003 6:12 PM CST
Day 63 Post Transplant
Dear Friends,
We were glued to the T.V. this morning watching the news.
Jane and Max got dressed eventually and headed over the hospital for clinic and Physical therapy. Max’s numbers still continue to be consistent and look good. While at clinic waiting, Jane read a Weekly Reader to him. He read a very easy book with her. He also drew circles with a little crayon ‘nubbin’ that his Occupational Therapist gave him. There was a volunteer there doing crafts with kids in the waiting room. Max made a picture frame and a necklace with her (with Jane’s help). Dr. Krivit was not there again. We continue to pray for him and his wife. After clinic, Max worked hard at P.T.
Uncle Mark arrives tonight around 8:00. It will be good to see him.
It was dreary and raining today. A good day to think about the big picture with all that is going on with the world. We thank God for all we have.
Love,
Jane and Jeff
Wednesday, March 19, 2003 6:09 PM CST
Day 62 Post Transplant
Can you believe 62 days have gone by?
Dear Friends,
We really thought March would go slow and it is already the 19th. Having Maddie and Sam around sure makes the time fly.
We have been asked a lot of good questions and thought we would provide answers here to everyone at the same time.
Do you think you will continue the journal when you get home?
Yes. We will continue to give updates. Max’s journey is not over. We will still be dealing with the BMT process for a year.
Can we help build a ramp, etc. for your home?
You would not believe how nice you all are. So many people have offered help. We have a funny philosophy about making adaptations to our home. We won’t do anything until we have to. It goes back to our ‘not giving an inch’ attitude. Max right now should be able to walk up our back steps with help and a good railing. We won’t do a ramp until/if we need to.
Are you for sure coming home on March 31st?
We will come home on the 31st if Max doesn’t have any problems. If he had a fever on the 30th, we would not come home.
Will you go back to Minnesota?
We will have to return on day 100 for some tests. We will go back at 6 months after transplant and then a year. Unfortunately, we see families that have to keep returning because of graft vs. host and other problems.
When are Sam and Maddie leaving?
Jane’s dad is flying to Minneapolis on Friday night and will fly to Michigan with the kids on Saturday, March 22nd.
Can Max go anywhere or see anyone?
Max can not go to public places if they are crowded. If they are not crowded, he still needs to wear a mask. We have to be very careful about people coming to our house. They can’t come if they are sick or have been exposed to an illness. We can’t wait to get him on the trail to go see the spring turtles. They told us that he could go back to school in the fall. That makes us very nervous.
Max had P.T. and O.T. in the morning and worked hard. We had a scavenger hunt around the RMH. It was fun. The kids each won a prize. We thank God for many things. One big one is the caring environment we found at the Ronald McDonald House. We were very scared on Dec. 29th when we arrived, and this place has really been a blessing.
As our country prepares for war, we think often about our service men and women and their families. We pray for peace.
Love,
Jane and Jeff
Tuesday, March 18, 2003 4:38 PM CST
Day 61 Post Transplant
Dear Friends,
Today was a quiet boring day. We had to say goodbye to Aunt Cindy and Uncle Carl. They are already missed. Max had Physical Therapy and Occupational Therapy this morning. Jane stayed at the RMH with Maddie and Sam. They cleaned and did laundry.
Max came back and napped for a while. Then we went out for a drive. We drove to Stillwater Minnesota. It is a cute small town. We hope to go back again on a nice day and walk the sidewalks and window shop. It was cloudy and dreary today.
Not much else to tell. We are still concerned about our friend Lucas. He is having a rough time in New Jersey. We are also concerned for Dr. Krivit. His wife is having some medical problems of her own.
We thank God for our boring day and pray for Lucas and the Krivits.
Love,
Jane and Jeff
Monday, March 17, 2003 6:26 PM CST
Day 60 Post Transplant
Happy St. Patrick’s Day!!
Dear Friends,
Well, we didn’t say goodbye to Aunt Cindy and Uncle Carl this morning. They offered to stay longer, and we took them up on one more day. The kids were very happy to have more time with them.
Max had Physical Therapy first this morning. Heather continues to compliment him on his improvement. This morning he walked the hall at the hospital with a walker. We were very happy and see that as a big step forward. (No pun intended.)
We went to clinic next. Max’s blood work looks very good. His white blood cell count is 10.8. We talked to the nurse, Pat. She said that March 31st was a realistic date to go home (with no complications until then). We talked with her about what we would need for Max when we got home. It was all pretty simple stuff. She said the blood work would be able to be done with our pediatrician. We just need to double check with Dr. Crittenden in Greenville. She also suggested we make a contact in Ann Arbor in case we had a complication at home. It is very exciting and scary to think about coming home. We are now planning on how Maddie and Sam will get home so we can have a week to pack up, etc.
It was a beautiful day here but colder than yesterday. We are so proud of Max and his accomplishments. He is working very hard. We hurt for so many other kids and their families. There is always a twinge of guilt on the good days. But we thank God for each one.
Love,
Jane and Jeff
P.S. Jeff made that comment yesterday about where he was. He is confessing to a very lazy day.
Sunday, March 16, 2003 7:26 PM CST
Day 59 Post Transplant
Dear Friends,
We had an easy lazy morning today. Cindy and Carl arrived with fresh bagels. Jane went to a church two blocks away. It was a unique experience going to church with college kids. She felt very old but enjoyed the service. It was very powerful to see such young people so full of faith.
Sammy and Maddie played outside again with Carl and Cindy. We are going to hate to see them fly back to Albany tomorrow morning.
Jane and Max took a walk around campus. Maddie, Sam and Cindy joined in for a trip around the block. What did Jeff do? It was beautiful out again today.
It was a good day. Thank you, God.
Jane and Jeff
Saturday, March 15, 2003 6:50 PM CST
Day 58 Post Transplant
Dear Friends,
What is it about 60 degree weather and sunshine that makes you forget all your troubles? It was a gorgeous day. We didn’t take advantage of it as much as we should. Maddie and Sam played on the play set outside. Cindy and Jane took Max on a quick walk around the area. He can burn easily so Jane didn’t want to push it - even though the Ferris State Basketball hat was covering his beautiful bald head. We had all the windows open a little in the apartment, and it felt so good to have fresh air blowing in.
Max had a lazy day. He napped, ate, watched T.V., ate, did some exercises and ate. We got some new books from Story Grandma today. He particularly enjoyed Take Me Out of the Bathtub (“Take Me Out to the Ballgame”). It had funny poems set to songs and he had heard it before with Mrs. Gurecki. Our favorite was Stinky Stinky Diaper Change set to the tune of “Twinkle, Twinkle, Little Star.” We continue to laugh hardest at bathroom humor. Thanks, Kay.
Aunt Cindy and Uncle Carl continue to give the kids a change of pace. Climbing all over Carl seems to be the favorite game for Maddie and Sam.
We are trying not to be too hopeful, but they mentioned at clinic earlier this week that we may be able to head home as soon as March 31st. They stressed that Max would have to be complication free until that time in order to go home. We are going to check again on Monday at clinic and see if we can find out for sure. We will let you know what we hear, but we are hoping for March 31st (Day 75).
It sounds like it was a beautiful day in Michigan too. Thank you, God. Bring on Spring!
Love,
Jane and Jeff
Friday, March 14, 2003 5:27 PM CST
Day 57 Post Transplant
Dear Friends,
We had a late start this morning. The kids slept in until 8:00 this morning. They got some much needed sleep.
Max had Physical Therapy and Occupational Therapy this morning. They worked him hard. The Physical Therapist, Heather did a test on him that they use with cerebral palsy patients. This will give us good data to measure against when we get home. Heather thinks Max’s most important need right now is trunk stability and strength. She is very impressed with his progress the past two weeks and feels there is more that can be gained back. That is good news for Max.
Aunt Cindy played with Sammy and Maddie while we were gone. They went down to the basement of House 3 and played in the tree house.
It was a beautiful day in Minneapolis today. The temperature got up to 62 degrees. It felt great. We went back to the zoo and did the outside exhibits that we had missed. People continued to stare at us, but this time it was Maddie drawing attention. We think it was her cheetah print outfit, red socks, pink shoes, purple fur jacket, hot pink mittens and a different color purple hat. She was quite a sight. (See photos) Needless to say, she chose her own clothes today. Gotta love that girl.
Uncle Carl arrived at 5:00. The kids were very excited to see him.
Thanks for looking in on us. We thank God for all the caring people in our lives. When we have our tough days, reading the journal reminds we are not alone. When we have our beautiful days like today, it is still nice to know we are not alone. Have a great weekend.
Love,
Jane and Jeff
Thursday, March 13, 2003 7:12 PM CST
Day 56 Post Transplant
Dear Friends,
Aunt Cindy arrived last night about 10:30. It was good to see her. She spent the night with us so we could be at the hospital by 8:30 for our appointment with the Pediatric Neurologist. Dr. Gilles hadn’t seen Max since he was in the hospital after the seizure. She thought he had made very good progress. She has continued him on Kepra until CSA is done (6 months post transplant). We were very happy to hear that she thought he was doing well and she thought he would continue to gain skills.
This leads us into an update on where Max is at physically and mentally. We haven’t mentioned it in a few days. He can stand up on his own and walk a few steps. He can walk across the apartment if we walk in front of him and hold on to his hands. He can read easy books. He has a very difficult time writing. He is happy but has some bouts with frustration. Feeding himself is not easy, but he can do it (and he eats OFTEN). He is working at getting himself dressed. Socks and pants are difficult but he can do them with minimal help. He can not put his shoes on yet. His balance is shaky. He is very tired each day. He hasn’t napped in the past three days though. Now this may sound like huge losses for many of you. You need to remember that when he was in the hospital after the seizure he could not even stand or sit up by himself. The neurologist sees huge improvements. We know he is lacking a lot of skills, but we just have to work hard and continue to set high standards for his development.
Max also had P.T. and O.T. this morning. He went by us on his bike as we were waiting. Both therapists said he worked hard with them.
He had clinic after his therapies and gave blood. All his blood work looks great.
Maddie and Sam stayed at Ronald McDonald House with Aunt Cindy and had fun. We just roamed the house for the rest of the day.
Rumor has it that Aunt Sally did well with Mad Dog. We wish we could have heard her. We think we found our official spokesperson.
Hope all is well with each of you. We thank God for many things.
Love,
Jane and Jeff
Wednesday, March 12, 2003 5:07 PM CST
Day 55 Post Transplant
Dear Friends,
We had a very nice day today. We did not get an early start. There was a lot of laying around. Sam and Maddie were in jammies until 11:00. Max was already napping by 10:00. After lunch we went to the zoo. It was nice. They had two large indoor exhibits. It was nice enough to walk around outside for a while too. It was one of first experiences where people stared at Max. Here was a bald child wearing a mask in a wheelchair and people were curious. Jeff admits it bothered him a little, but it didn’t bother Jane like she thought it would. Max didn’t even seem to notice. He is very proud of his bald head.
We were very bothered by the latest news on our friend Lucas. He has been hospitalized with shingles back in his home state. Please include Lucas and his family in your prayers.
Tomorrow is a busy day for Max. We are meeting with the Pediatric Neurologist who saw Max after the seizure. We will ask her some questions about the meds he is on. Tomorrow is the last day for Dylantin. Yay! He has P.T. and O.T. after that. Then he will go to the clinic to give blood.
Aunt Cindy is coming tonight. This will be her second visit. We can’t wait to see her. Carl will join her for the weekend.
Tomorrow Sally, Jane’s sister will be on the radio with “Mad Dog”. It is on channel 92.7 in Lansing at 3:15 p.m. Go get ‘em Sally.
We are so happy about the Bowen baby. Congratulations. We can’t wait to meet Riley. We are also completely glued to CNN. We can’t explain how happy we are that Elizabeth Smart has been found alive. What a miracle. The horror that family has been living makes the Ronald McDonald House experience seem like a dream. We hope she is not physically or psychologically damaged.
Thank you, God. We pray for the families of the military. We pray for Lucas.
Love,
Jane and Jeff
Tuesday, March 11, 2003 6:49 PM CST
Day 54 Post Transplant
Dear Friends,
Today was a good day. The kids went to bed well last night. We slept until about 7:00. Maddie and Sam are still on Michigan time. Max and Jeff went to the hospital this morning for Physical and Occupational Therapy. Max worked hard. He came home with a wrist band on his left hand to help strengthen it. We all went for a quick trip in the car when they got home. Other than that, we hung out at RMH. Maddie and Sam took their shirts off and played beauty parlor with Barbies for a long time in the bathroom sink and tub. They are so funny together. Max watched Free Willy for the first time and really liked it. A boring day- just how we like them.
We aren’t sure if many of you read what others write in the guest book, but Pastor Jamey left a good one recently. We think he actually fell the 180 feet. There is a slim chance he was an Olympic athlete, but we are positive he wasn’t a Power Ranger. Which is it Pastor Jamey?
We have nothing scheduled for tomorrow. No P.T. No O.T. No clinic. We think we will take the kids to the zoo if it is nice out. They have a lot of indoor exhibits. We wanted to take a trip to the Mall of America, but friends told us Fear Factor was going to be having try-outs there tomorrow. If they really want to feel fear, they should have the contestants go through what Max and all these kids at RMH and 4A have gone through. Talk about courage. You can find inspiration all over these hallways.
We thank God for many things tonight. We hope life finds you well and you have lots to be thankful for too.
Love,
Jane and Jeff
Monday, March 10, 2003 8:05 PM CST
Day 53 Post Transplant
Dear Friends,
Great night last night. Maddie and Sammy both went to bed quietly, and they all slept well. Most importantly (and most difficult), they were all together in the same room.
Max had a busy day. We went to Physical Therapy at 9:30. Although he is still struggling with balance and strength, the therapist commented on how well he did today compared to Friday. That was music to our ears. We then went to clinic and had to wait around quite a bit. It is a very busy place on Mondays. We went back and had lunch. Max watched half of The Jungle Book and then had to go back to the hospital for Occupational Therapy. We were afraid he would be too tired and not work for them. We were wrong. He did a good job. They are working on his processing. This is tough for Max.
Marcia and Don left after O.T. It was hard to say goodbye. When people leave after a visit, Jeff always says it’s like being at summer camp and everyone gets to go home but you. Obviously he has some bad memories of camp. We hope they have a safe trip home.
An old friend of Jane’s called tonight. A friend that goes all the way back to Mrs. Frink’s afternoon kindergarten class. He is putting together a golf outing to help raise funds for MLD research and maybe some other great causes. The outing will be at Kimberly Oaks in St. Charles, Michigan on May 17th. Tim will provide more information later. He did say, “Anyone who wants to play can play.” That leaves it wide open to many of our golf impaired friends. (Jane, too.)
We are together as a family. Thank you, God.
Love,
Jane and Jeff
Sunday, March 9, 2003 6:33 PM CST
Day 52 Post Transplant
Dear Friends,
Maddie had a tough time going to sleep last night, but other than that we all slept well. It was nice to be able to kiss each one of them while they were sleeping and whispering a prayer. Hopefully Miss Maddie will do better tonight. We feel so bad for our neighbors.
Max had a tiring day today. He looked pretty whipped through out the day. We roamed around the Ronald McDonald House, read books, played Uno and watched T.V. It was a quiet day. Maddie and Sam provided some good laughs. Maddie was so funny trying to take care of Max. She wanted to do everything for him. Sam was also cute. Max was walking into the bedroom with Jeff and Sam just followed behind with his hand on Max’s butt. They love each other very much.
It was beautiful day in Minnesota. It was sunny but very cold. They are predicting temperatures in the 40’s by next weekend. That sounds good to us.
We hope all of you had a great weekend.
Thank you, God.
Love,
Jane and Jeff
Saturday, March 8, 2003 6:50 PM CST
Day 51 Post Transplant
Dear Friends,
We had a nice morning of roaming Ronald McDonald House, reading books, and hanging out with Aunt Jill. Max did O.T. with Jane today and P.T. with Jeff.
We took Jill to the airport at 1:00. She was a great help and very fun to have around. We were sorry to see her leave. The week went very quickly. Thanks, Jill.
Grandma, Grandpa, Sammy and Maddie arrived around 4:30. It was great to see them, and Max sure was smiling. They came full of energy and enthusiasm. Just what we needed. We think they will make for a busy and fun week. It is so good for Max to be around them. Don and Marcia will stay until Monday. We will be on our own for a couple of days and then Aunt Cindy will arrive on Wednesday. She is leaving the following Monday. We will decide during that time if the kids will stay for a long visit or go back to Michigan for a while. Either way, they are having tons of fun.
Max was out of bed for most of the day. He was able to play cards and Candy Land for a while today. He walks with our help (short distances). His Dylantin dose will be reduced again tomorrow. We hope for good results in the next couple of weeks.
It’s good to be a family. Thank you, God.
Love,
Jane and Jeff
Friday, March 7, 2003 6:54 PM CST
Day 50 Post Transplant
Dear Friends,
Max had an MRI first thing this morning to check to see if the CSA toxicity was gone. It came out clear. That was a good report.
We had clinic after the MRI. That did not provide the good news from Dr. Krivit that we had hoped for. He talked to Osiris yesterday and was very pleased with his outcome. He is working on getting MSC cells for use with BMT patients (a study) at the time of transplant. He didn’t even attempt to get the cells for his previous BMT patients yesterday. He told us Max would not be getting the cells. This was not at all what we had been told previously. We now find ourselves trying to make sense of this new information and form a plan to help Max. We feel like we were sold magic beans. We should have been more cautious. We look forward to getting back to Michigan as soon as possible so we can start looking for new research, people, etc. After today, we feel like we are medically alone in this.
Max had a lazy day after his busy morning. He napped and watched a little T.V. He read some books and worked on some PT with Jeff.
Maddie and Sam will arrive tomorrow with Grandma and Grandpa Trimper. We can’t wait for them to get here. Max doesn’t have clinic this weekend so we will have lots of time to play.
Thanks for checking in. We pray that God helps us understand this bad news and not be so angry about being misled. We are also trying to accept what is happening and hoping for good news for Maddie and Sam and other future MLD patients.
Love,
Jane and Jeff
Thursday, March 6, 2003 6:31 PM CST
Day 49 Post Transplant
Dear Friends,
Max had a busy morning. He had Occupational and Physical Therapy. He also went to clinic. His numbers are very steady. Dr. Krivit is out east talking to Osiris so we didn’t get to see him today. We will meet with him tomorrow and see what he found out. Thank you for all the prayers.
A new development with Max happened this morning. Jane was sitting on the couch and Max just got up from the table and walked on over. Jeff stood open mouthed in the hallway and Jane’s eyes welled. It was a nice moment.
We haven’t given a food update, but Max ate a lot today: cinnamon toast, 3 yogurts, a BLT with 5 pieces of bacon on it, 3 bowls of Bar-B-Que chips, turkey with catsup, a banana, applesauce, a piece of bread, and licorice. Whew!
In Charlevoix this morning, the high school served a fund raising breakfast in honor of our family. Don and Marcia were able to go and told us how nice it was. We are very impressed. We’ve been telling all along about how wonderful people have been to us, but when the caring comes from teenagers, the impact is great. They showed amazing character. Thank you.
We’ve had a few questions about who in the media to contact. We have contacted both Oprah and Good Morning America. We have included their sites at the end of tonight’s entry. We have met a family out here who has made a contact at CBS for us. Thanks Christie and Randy. You would all go nuts over their two boys out here. Adorable. We really appreciate all everyone has done for us. We know we say it often, but we think it every moment of every day.
Maddie and Sam cheered on the Rayders of Charlevoix last night with Grandma and Grandpa. They will be here with us on Saturday. We are so excited to see them. We aren’t sure how long they will stay.
Aunt Jill has been a great help this week. She and Max are laughing and having fun. She plays cards with us and that is a nice break. We even went out to lunch again today. Thank you Crofoots and Florys for the gift certificate. Thanks, Jill.
We thank God.
Love,
Jane and Jeff
http://www.oprah.com They have a link to email them.
http://abcnews.go.com/onair/DailyNews/020924LifeAlteringMoments.html
Wednesday, March 5, 2003 6:34 PM CST
Day 48 Post Transplant
Dear Friends,
Max did not have clinic today. He went to Physical Therapy though. He worked hard and his therapist, Heather gave us some catalogs with things that Max could use at home. One of the things was a scooter/bike like he used in the hall of the hospital.
The journal is by me tonight. I didn’t want to put Jeff’s name on it because I think I’m going to write stuff that would probably make him blush.
We took Max to the Imax theater today to see The Lion King. There were only 8 other people in the theater so it was the perfect time to take Max. It was a very bittersweet experience for me. I was so happy and thankful that Max was sitting there laughing along with the movie. I was so saddened by the memories of my little Max watching the movie for the first time so innocent and healthy. It is so hard to remember who he used to be. The theme of the movie didn’t help either. It’s a beautiful story.
The reason I write this in the journal is two fold. One reason is that this journal does more than just provide information to everyone. It is our written memory of what we’ve gone through and the only journal we keep. The second is that Jill reminded me that when I say how well he is doing that people forget about the changes that have happened in Max. I want to stress how well he is doing for an MLD patient. However, he has lost skills. I read with him today, and he was so easily frustrated. At the movie, he shoveled popcorn in his mouth because his fine motor skills have been affected. In so many ways he has been changed.
We understand this. We accept this. We are very grateful for all the skills he has retained. We thank God for how well he is doing. But still at times like The Lion King you feel a little pain for what he has lost and for what he has to go through now. We love him a lot.
Thanks for checking in and listening.
Love,
Jane
P.S. If you don’t mind please be thinking about Dr. Krivit tonight and tomorrow. Thanks.
Tuesday, March 4, 2003 6:08 PM CST
Day 47 Post Transplant
Dear Friends,
Another good and boring day. Max had Physical Therapy this morning and clinic. He continues to work hard. His numbers are good, and we started a smaller dose of Dylantin today.
Jill and Jane went to the Mall of America for a couple of hours. It was very quiet. We would like to take Max on a day when he has energy and not many people are there.
The Today show called today and didn’t think they would be doing our story any time soon. We don’t think they will do it at all unless something changes as far as medical treatment. We are very disappointed and still eager to get MLD out on a national level. Let us know if you have any ideas or connections (Oprah, People Mag...).
Dr. Krivit leaves tonight and will be talking to the Osiris Company on Thursday. Osiris is the company he is trying to get more MSC cells from. MSC cells will help with the nerves in the peripheral muscles. (In ordinary Joe terms: The cells will help Max be able to do more physically.) Dr. Krivit has been working hard with the company and is to a point where he wants a yes or no from them. His ending words at clinic today were, “Pray for me on Thursday.” Little did he know what a prayer army we have acquired. Please think about Dr. Krivit on Thursday about 10 am (eastern). We pray he has the wisdom and charisma to get the cells for Max and all the MLD kids. We also pray that Osiris is moved by helping kids and not making money.
Maddie and Sam are having fun in Charlevoix. We miss them so much and hope they will be back this weekend - even if it is only for a week.
Good day. Thank you, God.
Love,
Jane and Jeff
Monday, March 3, 2003 7:13 PM CST
Day 46 Post Transplant
Dear Friends,
We had another great and boring day. Max worked hard at Physical Therapy today. We both thought he seemed stronger today. Tonight is his last full dose of Dylantin. We will taper a bit tomorrow. Clinic went well. His numbers are very stable.
Thanks to Aunt Jill, we were able to go to lunch. Thanks too to Matt and Nora for the gift certificate. It was nice to be able to talk.
Because today was pretty uneventful, We’re going to fill space with other important thoughts. One of the things we talked about today at lunch is how lucky we are to both be here. Many people at the Ronald McDonald are struggling to help their child and keep their jobs at the same time. They are trying so hard to make ends meet. We have been so lucky to not have the financial and professional burdens that so many others carry. Thank you for helping us with that. We talked to one mom this morning who had to fly home this afternoon to work. Her daughter is in intensive care. We can not imagine how hard that was for her. We are blessed to be able to be here together everyday.
Another positive thought that keeps popping up in conversation is how this situation has brought our families so close. The time that each family member has spent out here has been such a good experience for us. We feel even closer to everyone.
Thanks for checking in. We can hear Max laughing in the next room. He has laughed a lot in the past 3 days. Thank you, God.
Love,
Jane and Jeff
Sunday, March 2, 2003 6:54 PM CST
**We forgot to mention that the Catalina trip went for $2300. The buyers would like to remain anonymous. We thank them and hope they have a great time!!
Day 45 Post Transplant
Dear Friends,
We had a good old boring day today. Just the kind we like. Max slept great last night. We got up and went to clinic at 9:00. His numbers came out the same as yesterday. They also checked his CSA and Dylantin levels. Dylantin was o.k. The CSA wasn’t finished today. We’ll check both again tomorrow.
It was fun to have Aunt Jill around today. She played cards with us and went with us on a scenic drive around the city. It was very pretty and sunny. There were lots of beautiful homes along the Mississippi River. It was very cold today.
Maddie and Sam went to cousin Grace’s birthday party back in Michigan. They had fun. Happy birthday, Grace. Maddie and Sam are going to go up to Grandma and Grandpa Trimper’s house tomorrow.
Thank you for checking in. We thank God for boring days!
Love,
Jane and Jeff
Saturday, March 1, 2003 6:04 PM CST
Day 44 Post Transplant
Dear Friends,
A day of mixed emotions. We are so happy to be back at Ronald McDonald. We had clinic today and Max did well. His white blood cell count is up to 10.5. He is still lacking strength and is on a full dose of Dylantin.
Aunt Jill, Jane’s sister is to arrive tonight at 7:20. It will be good to see a new face.
On a sad note, Rachael passed away this morning. She was 19 and going through her second bmt to treat Leukemia. Her mother, Kathie was so kind to us when we first arrived. I think all of the family members who came to visit will remember Kathie. We are at a loss of words.
Thank you for checking in. We thank God and hope He is providing extra strength to Kathie tonight.
Love,
Jane and Jeff
Friday, February 28, 2003 6:26 PM CST
Day 43 Post Transplant
Dear Friends,
After a long day of waiting, Max was released form the hospital at 4:15 this afternoon. It was a beautiful walk/roll back to the Ronald McDonald House. It was sunny and warm. Spring is hopefully not too far away.
Max has the three new drugs and we hope they do their jobs of preventing Graft vs. Host Disease and seizures.
We want to thank everyone for all the goodies that have been delivered to us. We have received so many gifts and the thank you’s have never been sent. We were both “brought up” better than that, but stress has a way of messing that up. So please accept this thank you for the carton of candy, the toys for the kids, the gift certificates, the tub paints, the clothes, the signing bear, the books, the Cocoa Puffs, afghans and the inspiring cards. (As you can see, we have been spoiled.) We continue to receive cards and donations from people we have never met. The world is filled with awesome people.
We are still talking to Dr. Krivit about research in the MLD field. He is still working at getting MSC cells and is also trying to get some of the enzyme Arysulfatase A from Denmark. We look forward to the progress and are filled with hope.
Thank you, God.
Last day of February. March might be a long one. Love to everyone,
Jane and Jeff
Thursday, February 27, 2003 4:28 PM CST
Day 42 Post Transplant
Dear Friends,
Max and Jeff had a good night at the hospital. Max had a hearty breakfast of doughnut holes and lemonade and a yogurt. He had Physical Therapy this morning. He was stronger again today, but we really want to see him walking around again.
He ate two bags of bar-B-que chips after P.T. He had 2 Gogurts and a corndog for lunch. He just keeps eating and drinking.
The doctors met with us. We have a plan for his meds. We pray for no seizures and no Graft vs. Host Disease. They will check his CSA level tomorrow and we may be able to go back to the Ronald McDonald House.
His bladder pain seems to have stopped. Yeah! His sense of humor is great even bordering on smart alec. We love it. We thank God.
Love,
Jane and Jeff
Wednesday, February 26, 2003 7:29 PM CST
Day 41 Post Transplant
Dear Friends,
Jane and Max had a good night at the hospital. There was a moment when Jane heard “Mom.” She looked and Max was gone. He had rolled out of bed. He didn’t say another word. Jane helped him get back in bed and he went back to sleep. Jane put the railing up.
It was a pretty pain free day. Max had Physical Therapy and worked hard. We thought he was a bit stronger than yesterday. They gave him another big hit of Dylantin in the afternoon and he became loopy again. They started CSA at a low dose today and will keep him on two seizure drugs. They will slowly take him off Dylantin next week. We look forward to being done with that drug and hope Max has more strength. We pray that there will be no more seizures and Max’s body can handle the lower dose.
We’ve been reading quite a few books to Max. They have a nice children’s library on the fifth floor. We wheel him over and we pick out books. We then critique them with a thumbs up or down. Mrs. Gurecki would be proud.
He ate a lot today. We lost count. We know there were 2 corndogs and 5 Gogurts. He also drank a lot of lemonade today. He told the doctor that he wanted out. Go Max!
Tomorrow we will meet with the BMT doc and the neurologist and make sure we all understand the plan for Max.
We really miss Sammy and Maddie. Phone calls continue to be harder each night. They will hopefully be back with us soon. One of the positives that has come out of our past few months is the time they have been able to spend with grandparents. Each set has spent a lot of time with the kids. That is a wonderful thing.
We thank God for Max’s pain free day. We continue to thank Him for the healing that is taking place. We thank all of you for caring enough to check in.
Love,
Jane and Jeff
Tuesday, February 25, 2003 6:52 PM CST
Day 40 Post Transplant
Dear Friends,
Max and Jeff had some pain over night. They gave Max some Vioxx and a small dose of morphine. He was relatively pain free for the rest of the day.
Max is still lacking strength. He had Physical Therapy today and it was tough work. He is also napping a couple of times during the day.
We had many discussions on what to do with Max and his meds. He is going to start taking a low dose of CSA again. Their priority is to make sure Max does not get Graft vs. Host Disease. They are also going to keep him on the MMF and keep him on the same dose of steroids (he was supposed to be tapering off of them). We are going a long with this plan. If we don’t see improvement in his strength and walking in the next week, we are going to reevaluate the CSA. They are cutting back on his Dylantin and starting a new anti-seizure drug. We are hoping this helps Max gain strength.
His food list is long: 5 Gogurts, 1 yogurt, blueberry muffin, corndog, 2 bags of bar-b-que chips, 5 Tart ‘N Tiny candies. He hasn’t had dinner yet. Obviously the meds are not hurting his appetite.
Love,
Jane and Jeff
Monday, February 24, 2003 7:39 PM CST
Day 39 Post Transplant
Dear Friends,
Jane and Max had a good night at the hospital. They slept well. In the morning, Max had a bit more pain and they gave him Vioxx. This helped and he did well throughout the day. He had an MRI done at 11:00. They saw improvements from the CSA drug toxicity. He will have another one next week.
We continued to be worried about his weakness. He can’t walk and can only stand for a few seconds. At 3:30 they gave him more Dylantin and he became very loopy. This actually made us feel better. We really think the anti seizure drugs are affecting his strength. We are very hopeful that we will build him right back up.
The biggest stress of the day is coming from the decisions about what drug to put Max on to prevent GVH disease. The doctors are not in complete agreement. The neurologist is going to come and talk to us tomorrow and explain the MRI, the drugs, and effects from a seizure. We will decide what to do after that.
We continue to miss our friends and family. We especially miss Maddie and Sam. They sure are having fun.
Thank you to everyone again. You do so much for us. We also thank you for praying for Rachael. People are so good. When we are done with this round of the MLD battle, we need to tell everyone about the wonderful things that have happened for us. We can not even begin to thank everyone. We thank God instead.
Oh yeah: blueberry muffin, 4 yogurts, 2 Gogurts, 3 tacos from Taco Bell, a chicken breast, and an apple. Go Max!!
Love,
Jane and Jeff
P.S. It was very, very cold today.
Sunday, February 23, 2003 3:26 PM CST
Day 38 Post Transplant
Dear Friends,
Max and Jeff had a good night at the hospital. Max had little pain today. They seem to have his bladder problems taken care of. He also went off all I.V. fluids. Lots of things to thank God for.
We are a bit stressed about his strength. We pray that it is because of the meds and what he has gone through the past 6 days and not deterioration from MLD. We are unabashedly asking that Max is 100% cured.
Don’t ask why we report what he’s eaten. We just love to see him eat. Today he ate 3 yogurts, a chicken taco, donut holes and a can of lemonade. He hasn’t had dinner yet.
We really miss Maddie and Sam. It gets harder each to day to talk with them on the phone. They sure are having a good time though.
“Great difficulties may be surmounted by patience and perseverance.” Abigail Adams
Love,
Jane and Jeff
P.S. Thanks for the prayers for Rachael.
Saturday, February 22, 2003 8:31 PM CST
Day 37 Post Transplant
Dear Friends,
Jane and Max had a good night at the hospital. They were able to get a lot of sleep. We had good discussions with the doctors this morning. They are still talking about what to do about Max with medicines to prevent graft vs. host disease. We are going to need to make a decision about what to do. We pray for wisdom.
Max had an almost pain free day. They told us today that he has a urinary tract infection and have started him on an antibiotic for that. He had a few short moments of pain. We are hoping with the antibiotic that they will be gone tomorrow. Even though he had those few moments, he is MUCH better than he has been. Thanks for the prayers.
With the week we’ve had, we aren’t sure what day of the week it is - let alone what day of the month. Sorry, Bob. Happy Birthday.
Jeff and Max will spend tonight at the hospital. Hopefully they will have a good night.
For our prayer army, there is a girl we met in serious trouble. Her name is Rachael Mayo and she is back in the hospital. They have put her in a drug induced coma because her lungs have filled with fluid. For those in the family who have visited, her mom is very tall and Rachel is 19 and going through her second transplant. That may you remind you of the faces. We pray for Rachael and thank God for how well Max is tonight.
Love,
Jane and Jeff
Friday, February 21, 2003 2:51 PM CST
Day 36 post transplant
Dear Friends,
Jeff and Max had a quiet night in the hospital. Max’s pain was gone and he slept soundly all night. When Jane arrived at 6:00 in the morning, both boys were sleeping. Max woke up around 7:30 and was very aware and bright eyed. He was able to talk to both Grandmas on the phone and eat a glazed doughnut. He was back to sleep soon after. He legs were still weak when he stood up, and he had a tough time walking.
The doctors decided to take him off the CSA drug and change him to one called MMF. MMF doesn’t seem to work as well as CSA on Graft vs. Host disease, but it doesn’t have neurological effects. We were very comfortable with this decision and will keep a close eye on Max for signs of GVH disease.
Max slept most of the day. He was able to watch a bit of T.V. Hopefully he will have even more energy tomorrow. The good news was he was almost pain free for the whole day. Maybe the end is near for the bladder problems.
A producer from Today called. He asked a few questions. Nothing is set yet. We hope it works out that MLD can get the exposure.
We have a lot to thank God for today. We haven’t said much on the website, but we are so thankful for the doctors and nurses here in Minnesota. They have handled Max’s ups and downs so confidently and calmly. We are also thankful for all the people who have been assigned to us to make this process easier; our coordinator, social worker and RMH staff.
Above all else, we are so thankful for the love and support that is sent our way. The prayers are helping so much and continue to carry us. Thanks!
Love,
Jane and Jeff
P.S. Minnesota started getting cold today. Look out Michigan. It will be there in a day.
Thursday, February 20, 2003 7:58 PM CST
Dear Friends,
Sorry for the late update. We've been at the hospital all day with Max.
The nurse called this morning at 5:00 and told us Max was in pain and asking for mom. Jane headed over. Max was a little more aware but in pain. They continued to give him pain medicine through out the morning. A little bit after noon, they moved Max to the regular pediatric wing. He was still in a lot of discomfort. Finally around 4:00 p.m. he fell asleep and became relaxed. Jeff is spending the night with him tonight. Jane will come back early and give him a break in the morning. Max is still pretty loopy, but we hope he is more aware tomorrow. We are anticipating being in the hospital for a few more days.
We'll fill you in more tomorrow. The nurses and doctors at the ICU were wonderful. We forgot to mention that yesterday.
Also, a producer from Today is calling tomorrow. (That sounds funny.) We'll fill you in on that too.
Thank you for the prayers that went out this morning. It was suggested in the guest book to do it again tomorrow. We think this is a great idea. Jane prayed on Minnesota time and thinks she screwed it up for today. Thanks to our whole prayer army.
Thank you, God.
Love,
Jane and Jeff
Wednesday, February 19, 2003 5:41 PM CST
Day 34 Post Transplant
Dear Friends,
Today was a better day. We had to leaveMax at the hospital last night and go back to the Ronald McDonald House. Max had a nurse in the room with him all night. We went back at 7:00 this morning. The night nurse told us Max hadn’t had any seizures all night.
We found out from the MRI that Max’s CSA level was too high for him and had caused the seizure. This was a bit surprising to them because Max’s CSA level was in the normal range but obviously his body reacts differently than others. The doctors told us that they could see a ‘cloud’ on the MRI that determined CSA toxicity. It is reversible and will go away. They are going to watch him in the hospital for a few days. They are also going to change his meds to meet this new situation. He currently takes 125 mg of CSA 2 times a day. They will either lower this and put him on seizure medication or try a new drug. CSA prevents graft vs. host disease. This is a lot of medical information. Just know this, when looking at all the reasons Max had a seizure, this was a good one. Thank you, God.
At 1:00 they woke him up. (He had been drugged up and sleeping since Tuesday morning.) They removed the tubing and Max was breathing on his own. He felt better after the tubing came out. He is still dealing with the sore bladder, but they are giving him pain medication for it. After yesterday, the bladder doesn’t seem so bad.
We have a lot to be thankful for tonight (and every night). You people who read this journal and prayed for us last night will never know how much that meant to us. We again find ourselves at a loss of words. We came back to the hospital stronger this morning than last night. But as we sat at the hospital this morning and read each entry in the guestbook, we just became stronger and stronger. Thank you so much for caring. Thanks you so much for the prayers.
We thank God.
Love,
Jane and Jeff
P.S. We hope you never have to hear ‘Code Blue’ in reference to your child. Whew!
Tuesday, February 18, 2003 6:14 PM CST
Dear Friends,
It was a very rough day. Max woke up with a headache this morning. We gave him some Demerol and he started to vomit. We assumed it was the Demerol on an empty stomach. He was very groggy and threw up two more times. We let him sleep for an hour and a half and then it was time to wake up for clinic. Max wouldn't wake up. We were now in panic mode. We got him dressed and noticed his hand trembling. The house manager at RMH gave us a ride to clinic. We hurried to the back of the clinic and asked to see the doctor right away. They were very concerned. They said Max was having a seizure and not getting enough oxygen. They called for a code blue and people came running from everywhere. They put a tube down Max right away for oxygen.
They took him for an immediate catscan and admitted him back to the hospital to the pediatric intensive care unit. We just finished an EEG and will go for an MRI at 6:30. He is trembling but they believe this is after seizure effect. His vitals look good. His blood pressure was high, but they gave him medication to lower it.
They are not sure right now what caused his seizure. It may have been his CTS level. Dr. Krivit believes it was the Demerol. They will hopefully know more after the test results come back.
Max is drugged up and has slept this whole day. My hands are trembling as I type this. We are scared and hope an easy answer is found. Thanks for checking in on us. We hope we have better news tomorrow. Pray for Max.
Love,
Jane and Jeff
Monday, February 17, 2003 7:29 PM CST
Day 32 Post Transplant
Dear Friends,
We made a very tough decision last night. We decided that Grandma Rhode (Claudia) should take Maddie and Sam back to Michigan until Max feels better. They left the Ronald McDonald House at 7:00 this morning. We miss them and hope we made the right decision.
Max slept well again last night but woke with pain again this morning. We took him to clinic at 11:00. Dr. Krivit came in and told us that fathers are usually ready to punch him in the face by this time. We were ar least proud that we weren’t to that point yet. We asked if there was anything stronger for pain, and he immediately gave Max some Demerol. Within minutes, Max had relaxed and had gained control. Needless, to say we left with a prescription of Demerol. We also asked Dr. Krivit how the enzyme and urine tests went. He said, “Max is perfect.” His white blood cell count was up to 5.6. He didn’t receive platelets or blood this morning.
Max came home from clinic and ate a hamburger. (He had 3 bowls of Cocoa Puffs for breakfast.) After lunch he watched a movie and took a short nap. He watched more movies and ate 2 tacos for dinner. We played Candyland, took meds and tucked in for the night. We’ll let you know how it went tomorrow.
As of 7:05 p.m., he hasn’t had any pain since clinic. Thank you, God.
Love,
Jane and Jeff
P.S. It was down right balmy here at 34 degrees. It sounds like Michigan was very cold.
Sunday, February 16, 2003 8:31 PM CST
Day 31 Post Transplant
Dear Friends,
Last night went well. Max slept well and woke up once for some more Tylenol. Today was pretty much a repeat of yesterday. Max had two painful episodes. One in the morning and one in the evening. We try to make sense of the timing and think about what meds he has taken. There really doesn’t seem to be an outside cause for the timing of the episodes.
We continue to practice patience and just hope Max feels better soon. Thank you for checking in on us.
We continue to thank God.
Love,
Jane and Jeff
Saturday, February 15, 2003 8:59 PM CST
Day 30 Post Transplant (The day Max was supposed to be released from the hospital)
Dear Friends,
Max had a good night last night. He woke up a lot to go to the bathroom, but he was in little pain. We took him to clinic this morning around 10:00. He yelled and was very upset at clinic. He was in a lot of pain. His white blood cell count was 4.8. We left as soon as possible and came back to the Ronald McDonald House. Max took some more Tylenol with codeine and slept for 2 and a half hours. When he woke up, he seemed to feel a little better. It hit again in the evening, and it breaks our hearts to see him hurt so badly.
Maddie and Sammy played outside and inside today. Grandma played snow house with them outside.
Not much else to tell. We never heard back about last Monday’s tests or Max’s ultrasound. It was a tough day. Hopefully tomorrow will be better for Max.
We thank God anyway.
Love,
Jane and Jeff
Friday, February 14, 2003 8:00 PM CST
High bid for the Catalina Trip: $2300
Day 29 Post Transplant
Dear Friends,
Here is the longer journal as promised. We had an interesting night last night. We decided that Don, Jeff and Sammy needed to go to a hotel. They left for the Radisson and had a fun time. Maddie, Max, Jane and Claudia tucked in for the night at 10:00. They all slept well, especially Max. He only woke up once at 3:15. Jane gave him more Tylenol with Codeine, and he went right back to sleep until 8:00.
Max is still in a lot of pain. It seemed to be better today than yesterday. The pain seems to be worse at select moments of the day. We are trying to keep him as comfortable as possible with the Tylenol. We really hope it ends soon. Dr. Krivit can’t really tell us when this should end. We continue to take it day by day.
Jeff and Jane took Max to clinic this morning. Dr. Krivit hadn’t heard back from the lab regarding the urine and enzyme tests. He assured us that if his blood tested at 100% donor than these tests would come back with good results too. We haven’t been giving Max’s white blood cell counts in our journal entries. Sorry. Here they are: Wed. 4.6, Thurs. 4.8 and Fri. 5.8. Things look good from the blood work. Dr. Krivit also provided good laughs this morning. He was singing for Max very loudly. He told Max that Jeff was his old man. Max came back with, “You’re an old man.” This got a big laugh from Dr. Krivit. We told him he shouldn’t be messing with a boy in pain.
Maddie and Sam played through out the day. They showed Uncle Don all around the RMH. Maddie really wanted to push Max in his wheelchair. He was a good sport about this. Then she got a little too bossy, and he just got up and walked on his own. She thinks she’s his nurse. Unfortunately, we had to say good-bye to Uncle Don. He left around 4:30 to fly back to Texas.
The kids had a movie theater night in the bedroom and watched Monsters Inc. Hopefully we all go to bed easily.
Our friend from the Today show called again today. She is so nice and we really enjoy talking to her. She had a couple of questions. There is no date scheduled or time frame. As much as we look forward to the exposure, the best part has been getting to know her. She is a delight!
Jane’s still coming off her benefit high. It was such a great night. She’s never been hugged more in her entire life.
Overall, we can’t complain. We are so sorry for Max that he hurts, and we are constantly practicing patience with all three, but Max is safe. We are all together. His new cells are working hard. We have a great community. Our family and friends are beyond compare. Thank you, God.
Happy Valentine’s Day,
Jane and Jeff
P.S. As things get busier here, please don’t worry about us if we miss a day in the journal. If something is wrong, we will be sure to write. We miss our fast Internet connection at the hospital.
Thursday, February 13, 2003 8:35 PM CST
Top bid for the Catalina Trip: $2300
Dear Friends,
A quick update. We promise a long one tomorrow. Jeff and Max went to clinic today. Max’s white blood cell count went up. He did receive platelets this morning. He is still in quite a bit of pain, but Dr. Krivit tells us this will end soon. Max is on medicine for the pain, but he still cries out quite a bit. It was a rough couple of days for Jeff.
Uncle Don arrived last night and brought new energy to the RMH. Max is very happy to have him here.
Jane and her mom arrived at RMH at about 7:00 Minnesota time. Maddie and Sammy were great travelers (for half the trip :) But they made it. It felt good to be able to spend 11 hours talking about how great our community is and how amazing the benefit was. We can’t imagine how the people of Central Montcalm worked today. You must have been exhausted. It was truly incredible!
We’ll write more tomorrow. We are really pooped and trying to figure out how we get all three to sleep. Love to everyone. Thank you, God.
Jane and Jeff
Wednesday, February 12, 2003 10:02 PM CST
WOW!! I just got home from the benefit and visiting friends. I can not express in words all that I feel tonight. But you will hear it!! Thank you to all who came to the benefit and a mighty thanks to all of the people who planned and worked the event. You did an incredible job. I have always said you have been carrying us through this and tonight I am flying. Love, Jane
P.S. On a very important note: Max had a painful day because of his bladder healing. However, his white cell counts are going up without the growth factor medicine. His platelet also went up. All great signs.
Tomorrow all five of us will be together. Thank you, God.
Tueday, February 11, 2003 7:05 PM CST
High bid on the Catalina trip: $2000
Day +26
I'm here with Max at the RMH. Jane and Sally last called around Battle Creek. I think they were chatting and missed the turn north. I'm not sure if Jane will do an update tonight or not. Max is having a rough night. Lots of pain down below. We'll get through it. Mark said they had some bids on the vacation! Great! Everyone is traveling, so updates may be delayed a little. Jane, you may want to update about your trip and seeing the kids. If not, this is Jeff signing off for the night. Thanks to everyone in Stanton who has worked so hard on this benefit! You're a special community. Jeff
This is Jane. It is 10:30 Michigan time. Sally and I finally made it about an hour ago. We hit snow the last 60-70 miles. Thanks to the beast we were driving the snow wasn't bad to navigate in, but we just couldn't see anything. Sally was my mailbox spotter so we knew we were on the road. It was great to be home. Maddie and Sam were clean and in jammies, and I even got to tuck them in. It was hard not to leave right away and visit friends. I even had to honk at Ginger and keep driving. I look so forward to tomorrow night. Anna Sisson, if you are at the benefit please come and see me. I'll be the one that is still smiling. Love, Jane
BELOW IS THE DETAILED INFORMATION ON THE CATALINA AUCTION. THIS STARTS MONDAY AND WE WILL HAVE A SHORT DESCRIPTION ON THE WEB PAGE FOR 10 DAYS.
Santa Catalina Island Getaway!
Enjoy a fantastic spring trip to one of the best kept secrets off the coast of Southern California! Santa Catalina Island has been called a “mini Hawaiin Island”, and it’s yours to enjoy! This exciting trip includes all of the following as part of the auction:
~Two round trip tickets to Los Angeles (from your destination).
~Two round trip tickets on a local helicopter transport to Catalina Island. Or…
~Two round trip tickets on a local boat transport to Catalina Island.
~Up to one week’s stay at a luxurious condo located on Catalina’s premier bay.
This beautiful resort Island offers all kinds of great activities. Fishing & sailing charters, golf, helicopter tours, botanical gardens tour, boat rentals, fine dining, bike and scooter rentals, fabulous shopping, and so much more!
You will be only 24 miles off the coast of California, but you’ll feel like you are a world away! Take a trip you’ll remember for a lifetime, and help in the fight against MLD.
Please visit www.ecatalina.com and check out what this hidden treasure has to offer! See details below for this auction.
~One week’s stay at the condo, less time for your visit is acceptable.
~Silent auction will run on the website from February 10th to the 21st.
~All weeks are open dates until the end of May, 2003, and must be used during this time.
~Dates for your trip should be scheduled by March 8th, 2003.
~Current value for this trip is approximately $2,500.00
Please send your silent bid to Mark Trimper at mstrimper@aol.com and make sure to include your name, address, phone number, and of course, your bid for the trip.
*A special and gracious thanks to Mr. and Mrs. Dave and Edwina Broderick of Los Angeles California for providing the accommodations on Catalina Island, as well as Brett Supernaw for providing airline miles and assistance in organizing this vacation auction!
Monday, February 10, 2003 6:27 PM CST
Day 25 post transplant
Dear Friends,
Max had a nice night last night. It was very easy to set up his line of saline. We unhooked him this morning, and Jane and Sally took him to clinic. He was given more fluids there. His pain has decreased when he goes to the bathroom, but he still has some discomfort. Dr. Krivit came and said everything looked o.k. His white blood cell count dropped to 4.3, but that was to be expected because the growth factor med had ended. They ran all the tests we talked about yesterday and the results will be in on Friday.
Sally was so nice to have around. Max was pretty perky and played many hands of UNO with her. She even did some shopping at the Ronald McDonald House Store.
The best news of the day came at 4:30 p.m. Jane was nervous about leaving for Stanton without knowing if Max’s new cells were engrafting. She was nervous about leaving Jeff alone to hear the news on Friday. She called the clinic and asked if last week’s test results were ever given. (They took blood our last day in the hospital to test.) The nurse called down to the lab and said, “Max’s blood was 100% donor.” Jane cried as soon as she heard the word donor, and then both Jeff and Jane went out for dinner. Meanwhile they had no idea what 100% donor truly meant. When they got home, Jane called the BMT floor of the hospital and was told, “It means that all cells taken from Max’s blood were 100% donor.” We still aren’t 100% sure exactly what it means, but we love it!!!!!!! They will continue to test this throughout the 100 days, but things are good. Our prayers have been answered. Tonight we thank all of you and God!
Love,
Jane and Jeff
BELOW IS THE DETAILED INFORMATION ON THE CATALINA AUCTION. THIS STARTS MONDAY AND WE WILL HAVE A SHORT DESCRIPTION ON THE WEB PAGE FOR 10 DAYS.
Santa Catalina Island Getaway!
Enjoy a fantastic spring trip to one of the best kept secrets off the coast of Southern California! Santa Catalina Island has been called a “mini Hawaiin Island”, and it’s yours to enjoy! This exciting trip includes all of the following as part of the auction:
~Two round trip tickets to Los Angeles (from your destination).
~Two round trip tickets on a local helicopter transport to Catalina Island. Or…
~Two round trip tickets on a local boat transport to Catalina Island.
~Up to one week’s stay at a luxurious condo located on Catalina’s premier bay.
This beautiful resort Island offers all kinds of great activities. Fishing & sailing charters, golf, helicopter tours, botanical gardens tour, boat rentals, fine dining, bike and scooter rentals, fabulous shopping, and so much more!
You will be only 24 miles off the coast of California, but you’ll feel like you are a world away! Take a trip you’ll remember for a lifetime, and help in the fight against MLD.
Please visit www.ecatalina.com and check out what this hidden treasure has to offer! See details below for this auction.
~One week’s stay at the condo, less time for your visit is acceptable.
~Silent auction will run on the website from February 10th to the 21st.
~All weeks are open dates until the end of May, 2003, and must be used during this time.
~Dates for your trip should be scheduled by March 8th, 2003.
~Current value for this trip is approximately $2,500.00
Please send your silent bid to Mark Trimper at mstrimper@aol.com and make sure to include your name, address, phone number, and of course, your bid for the trip.
*A special and gracious thanks to Mr. and Mrs. Dave and Edwina Broderick of Los Angeles California for providing the accommodations on Catalina Island, as well as Brett Supernaw for providing airline miles and assistance in organizing this vacation auction!
Sunday, February 9, 2003 6:20 PM CST
Day 24 post transplant
Dear Friends,
We are getting to the point where we forget how many days post transplant we are. That seems like it might be a good thing. Max didn’t sleep as well last night. He was in pain when he went to the bathroom. There were small blood clots in his urine. The pain lasted for a few minutes after he urinated. We felt very helpless last night, but knew we had to go to clinic first thing in the morning and they would help him. Jeff and Max took off for the clinic right away. They told us he needed more fluids. They put fluids in through his line while he was there. They also gave us medicine for pain and bladder spasms. We also need to hook up a saline drip to his line at night for 12 hours. Dr. Krivit thinks we will need to do this for 5 nights. Hopefully this will help soon. We hate to see him in any discomfort. We were impressed with Dr Krivit. As soon as he found out Max had a small problem, he showed up in clinic.
He also needed platelets this morning. They gave him Benadryl and Tylenol and the platelets. His white blood cell count was up to 7.2. Yowza! Today was the first day Max didn’t get the growth factor medicine. His number will most likely go down for a while.
Tomorrow will be a big day for tests. They are going to check his enzyme tomorrow. Hopefully we will see traces of Arylsulfatase A (the missing enzyme). They are also going to test his urine. We want to see a decrease in the sulfatides. This is also an indicator that there is now Arylsulfatase A in his system. (Arylsulfatase A breaks down the sulfatides. Sulfatides destroy myelin. Myelin protects the cells. Easy. Right?) They will also do a DNA test to see if the new cells have engrafted. All three of these tests are linked together and tell us if Max’s new cells have taken over. We pray so hard that they have.
WOOD T.V. 8 was in Stanton today. Ginger Gurecki spoke all about the benefit on Wednesday night. Jane’s Mom and Dad spoke on how the Trimper/Rhode family was doing. We can’t wait to see it. As much as we want media attention on MLD, we are thrilled it came from other people.
Maddie and Sammy went to the Gurecki’s to play. They are still having fun.
Aunt Sally arrived ar RMH at 5:30. It was great to see her. Max perked up at her arrival.
Great day. Thank you, God.
Love,
Jane and Jeff
BELOW IS THE DETAILED INFORMATION ON THE CATALINA AUCTION. THIS STARTS MONDAY AND WE WILL HAVE A SHORT DESCRIPTION ON THE WEB PAGE FOR 10 DAYS.
Santa Catalina Island Getaway!
Enjoy a fantastic spring trip to one of the best kept secrets off the coast of Southern California! Santa Catalina Island has been called a “mini Hawaiin Island”, and it’s yours to enjoy! This exciting trip includes all of the following as part of the auction:
~Two round trip tickets to Los Angeles (from your destination).
~Two round trip tickets on a local helicopter transport to Catalina Island. Or…
~Two round trip tickets on a local boat transport to Catalina Island.
~Up to one week’s stay at a luxurious condo located on Catalina’s premier bay.
This beautiful resort Island offers all kinds of great activities. Fishing & sailing charters, golf, helicopter tours, botanical gardens tour, boat rentals, fine dining, bike and scooter rentals, fabulous shopping, and so much more!
You will be only 24 miles off the coast of California, but you’ll feel like you are a world away! Take a trip you’ll remember for a lifetime, and help in the fight against MLD.
Please visit http://www.ecatalina.com and check out what this hidden treasure has to offer! See details below for this auction.
~One week’s stay at the condo, less time for your visit is acceptable.
~Silent auction will run on the website from February 10th to the 21st.
~All weeks are open dates until the end of May, 2003, and must be used during this time.
~Dates for your trip should be scheduled by March 8th, 2003.
~Current value for this trip is approximately $2,500.00
Please send your silent bid to Mark Trimper at mstrimper@aol.com and make sure to include your name, address, phone number, and of course, your bid for the trip.
*A special and gracious thanks to Mr. and Mrs. Dave and Edwina Broderick of Los Angeles California for providing the accommodations on Catalina Island, as well as Brett Supernaw for providing airline miles and assistance in organizing this vacation auction!
Saturday, February 8, 2003 5:30 PM CST
Day 23 post transplant
Dear Friends,
We are doing well in sunny but cold Minnesota. Max had a good night’s sleep. We got up, ate some Cocoa Puffs and went to clinic. Max’s white blood cell count is up to 5.5. That means they will take him off the growth factor med he is on. Don’t be surprised if his white blood cell count drops. He didn’t need platelets or blood, but they are predicting platelets for tomorrow.
Many people ask us what Max is like and how he compares to when we came to Minnesota. MLD really had an impact on Max this fall. So if you hadn’t seen him in a while, you might have been surprised by how he walked, how he wrote, and how he took a little longer to respond to things. Overall, we are very pleased with how well he is doing now. He is walking slowly. His toes are pointing in and he sometimes walks on his toes and will look for support from railings, walls, etc. . He lacks the strength he came with, but he can build that back up. Writing is difficult for him. It is hard to tell what he has lost and what is just weakness from the cell transplant. We continue to work on building the muscles in his hands. He read with Jane today from a Moonbeams reading book. (The teachers will know just what we are talking about.) He read Pippa’s Secret Hiding Place with ease. Identifying words is not as hard for him as tracking the words across the page. Max’s math abilities need work. Basic addition is becoming difficult for him. We tell you all of this for two reasons. First, so when we tell you he is doing well, you won’t misunderstand us. He is doing very well for an MLD boy. Second, we are committed to help find a cure and support research and treatments for all kids with MLD. We are especially interested in Myelin repair for Max. It is an exciting concept and could help Max gain back skills. We thank God for how well Max is doing, but we are going for it all.
Maddie and Sam are well taken care of back in Michigan. Thank you Aunt JoJo. They stopped to see Great Grandma Rhode in Remus today and did a little Valentine shopping. When we talked to them on the phone they were just getting ready to go out and play in the snow.
Sally, Jane’s sister will arrive tomorrow afternoon. We look forward to seeing her. She and Jane will drive home to Stanton on Tuesday. Jane will attend the benefit in Stanton. She can’’t wait to see everyone and just hopes she doesn’t spend the whole night crying. We are feeling a lot of powerful emotions.
Be prepared for the online auction for the Catalina trip. Uncle Mark and our friend, Brett have put together a nice package to bid on. The details will be here on Monday and we will have the top bid posted each day. It should make the journal entries more interesting and make money to help kick MLD in the butt.
Good day. Thank you, God.
Love,
Jane and Jeff
Friday, February 7, 2003 5:27 PM CST
Day 22 post transplant
Dear Friends,
Max had another great night. It is so great to look over and see him sleeping. He ate another bowl of Cocoa Puffs for breakfast and we were on our way to the clinic.
Max’s white blood cell count was 4.3. Nice jump! He needed platelets this morning so they gave them to him plus Benadryl and Tylenol. It took us about two hours. There was a t.v. there for him. He ate a bag of Cheetos while he received his platelets. He was covered in orange and sleepy. He came home and had an Arbys and fell asleep for 2 hours.
He wanted to go for a walk when he woke up and he and Jeff ventured out.
Meanwhile, Jane spent quite a bit of time on the phone. WOOD T.V. 8 is coming to our house in Stanton on Sunday to do a follow up on us and a plug for the benefit. We are very appreciative of all T.V. 8 has done. Jane also talked to a person from the Today Show. Yep, the Today Show! Thanks to WOOD T.V. 8, they heard about our story and are interested in putting us on. Jane has talked with a woman yesterday and today, and she is going to call again on Monday. We are really hoping this works out. It sounds like it will. Thank you Wood T.V. 8. We may have our first goal accomplished. Hopefully it will lead to many more successes.
Maddie and Sam are continuing to have a good time with Aunt JoJo. They did a little play golfing and made some more cookies. They are very happy.
We had an awesome day! Thank you, God. Thank you everyone.
Love to everyone,
Jane and Jeff
Thursday, February 6, 2003 6:24 PM CST
Day 21 post transplant
Dear Friends,
Max had a great night’s sleep. He slept in until 8:30. It was nice to relax in the morning by ourselves until clinic time. We took a shuttle over to the hospital and Max WALKED up to clinic. They drew blood and gave him his growth factor medication. His white blood cell count went from 3.2 to 2.8. We are getting used to the ups and downs. He did not need blood or platelets today, but they ordered platelets for tomorrow. Dr. Krivit came in and talked with us. He is very pleased with how well Max is doing.
For lunch Max ate 3 tacos from Taco Bell. He drank Gatorade all day and had Cocoa Puffs for breakfast. He is requesting Arby’s for dinner. Of course, Jane or Jeff will run and get it. It is so good to see him eating and drinking.
Aunt JoJo is taking good care of Maddie and Sam in Michigan. They did a little shopping (Maddie left her night light in Minnesota). Sam reported on the phone that they also made cookies. Maddie said she got a new purple fur coat. We can just picture it. Grandpa told us last night that the ride home was smooth and the little guys were well behaved. We thank Joanne and Bob for all their help.
We try to thank everyone often, but can never express all we feel. Thank you for every prayer, card, and email. Thanks for watching our house, planning the benefit and caring enough about us to read our updates. We are so appreciative. We also continue to gain strength each day from the community, friends, faith and family that are carrying us.
It was another great day. Thank you, God.
Love,
Jane and Jeff
P.S. Sorry about the lack of new pictures. Jeff is working hard at solving the problem. Just picture in your mind Max smiling with not hair.
Wednesday, February 5, 2003 5:40 PM CST
The guestbook has reappeared. It looks like we are missing Wednesday's entries though.
Day 20 post transplant
Dear Friends,
We are free!! Actually Max is free. He is moving around free and easy without an IV pole dragging behind him. We were able to leave the hospital around 4:30 this afternoon. They went over all of Max’s prescriptions with us. It isn’t that bad. As soon as we got back to the Ronald McDonald House, he just kept getting up and walking around. He loves being free, but his mom keeps following him around asking if he wants to rest. He just keeps going and going. We think he will crash tonight.
It was a bittersweet morning with Maddie and Sammy leaving. We are very thankful to Joanne and Bob for taking such good care of them and know they will have fun back in Michigan, but we will miss them. It is quieter though and easier to care for Max. We will be anxious to see them next week. Max already said today that he wanted to see them. What’s that saying? Absence makes the…..
Max’s white blood cell count went from 1.6 to 3.2. Giant leap! The doctors keep saying how well he is doing and we just keep thanking God. So far, that plan is working.
Today was a good day at 4A. A boy who is 8 who came a few days after Max was able to get out of his room for the first time. He is doing so well, and his family, the doctors and the Trimpers celebrate his success. Also a little girl who’s been there since October was out of her room today too. We only wish she were coming back to RMH today too. If you can, please mention Presley in your prayers.
We had a great day! Thank you, God.
Love, Jane and Jeff
p.s. We no longer have the laptop going full time. We may be slower with emails and Jeff is trying to figure out how he is going to get new pictures on. It may take a while. If everyone just had a Mac.......
Tueday, February 4, 2003 6:29 PM CST
Day 19 post transplant
Dear Friends,
We could easily have done 10 more reasons to be happy today. Max and Jane had a good night at the hospital. Because he is getting so little through his line, the beeping has stopped. His hemoglobin and platelets were low this morning. He received Benadryl (twice, zzzzz), Tylenol, blood and platelets. His white blood cell count was up to 1.6. They are still talking discharge tomorrow. We talked to Dr. Krivit, the BMT docs, and our BMT consultant. They are all answering our questions and preparing us to leave. We feel pretty confident at this point. One piece of information that we wrote in a previous entry was wrong. They will start to taper off the steroids when we leave the hospital not when we leave Minnesota. This was good news. The steroids make him a little grouchy. His cheeks will go back to normal size too.
Joanne and Bob are heading back to Michigan with Maddie and Sam tomorrow. This will give the little guys a break from all of this and give Max a peaceful transition to Ronald McDonald House. It will also give us (Jane and Jeff) some quiet while we try to figure out how to clean Max’s line, change the ends, and help him swallow 20+ pills a day. He will also have to go to the clinic each day. That will be a little tricky with all the snow, but we can do it.
We had a pizza party in Max’s room tonight for dinner. It was a good time for the kids to be together before they part for 10 days.
It is a beautiful, sunny and cold day here in Minneapolis. Max has 3 big windows in his room and the sun is pouring in. Gorgeous! Hope sun is shining where you are.
Great day. Thank you, God.
Love,
Jane and Jeff
Monday, February 3, 2003 6:49 PM CST
Day 18 post transplant
Ten Reasons the Trimper Family Should be Happy:
10. Max’s white blood cell count is up to 1.4.
9. Maddie and Sammy had a great time playing in the snow.
8. Friends, family and community are just unbelievably great.
7. Max is a terror in the hallway on that bike.
6. They have wonderful family to help with the kids.
5. Max ate both Arby’s and McDonalds today.
4. Max is off all nutrition and liquids through his line.
3. Max’s pain medication has been reduced greatly.
2. Life is great.
Drum roll please............
The number one reason for the Trimper family to be happy:
1. Max is supposed to be released from the hospital on Wednesday!!!!
(Actually we are excited but a bit nervous. The doctors say he is doing very well.)
Thank you, God.
Love,
Jane and Jeff
p.s. The test he will get this week to check his bone marrow may be done earlier than Thursday. We will unfortunately not know the results for a few days. Thanks for the prayers. We just pray and have faith in God that the new cells have taken are making Arysulfatase A. The next logical question is then why would they let him out of the hospital until they know if it’s the new cells. There isn’t anything they can do about it. If the new cells have engrafted, we are a success. If they haven’t and they find Max’s original cells in his marrow, we are back to square one and will go through a transplant at a later date.
Sunday, February 2, 2003 6:38 PM CST
Day 17 post transplant
Dear Friends,
Jane and Max had a good night in the hospital, but in the morning Max’s stomach hurt. They gave him the medicine that makes him very tired. He slept until after 10:00 a.m. He was a wake for awhile, did a few laps and went back to sleep at 1:00 p.m. His white blood cell count fell from 1.2 to 1.1. The doctors assured us this is very normal. They also told us that a lot of the BMT kids wake up with a stomach ache due to mucusitis. We think we are going to skip the stomach medicine next time so it doesn’t wipe him out.
Max ate well today. He had some Coke, 1/2 a pack M & M’s, an Arby’s roast beef sandwich and some popcorn. He continued to do laps through out the day.
Sammy and Maddie came to visit. They keep themselves very entertained. The other night they washed and dried everything in the apartment. Even the bathtub.
It was a snowy and gray day in Minnesota. It sounds like all of us in the midwest will enjoy a winter storm in the next couple of days. Yuck!
A tired, boring gray day. Thank you, God!!!
Love to everybody,
Jane and Jeff
Saturday, February 1, 2003 7:30 PM CST
Day 16 post transplant
Dear Friends,
Jeff and Max had a pretty good night. Lots of people were in and out all night. When Jane arrived at the hospital at 9:00 a.m., Max was already taking a nap. He woke up shortly after and did a puzzle with his occupational therapist. His white count went down from 1.3 to 1.2. No big deal. They told us it would go up and down. We are thrilled that Max went from .1 to 1.2 in a week’s time. The number that the hospital looks at is Max’s abs neutrophil count. It is the number of white cells multiplied by some other number. It is at 1000. When it gets to 2500 for 2 or 3 days, they will take Max off his growth factor medicine. This medicine helps the cells engraft. His numbers could go down when he stops this medicine, but they will go back up. In the journals, we will start mentioning his abs neutrophil count.
Max's cheeks are really puffy, as you could probably tell from the pictures. This is because of the steroid medicine he takes. He will be on that med for 10-12 weeks after we get back to Michigan. The steroids help Max from developing graft vs. host disease. They must be doing an excellent job so far. Actually, we think it has been all the prayers, but we play along with the doctors.
Maddie and Sammy helped with laundry and played at the Ronald McDonald House. Ronald McDonald himself made an appearance for lunch at the house and at Max’s hospital room. He gave them pencils and erasers.
We tried to keep Max moving today. He had to walk around the small square area in 4A. He requested to do it when Aunt JoJo was here and he even wanted to do 2 laps. Have we mentioned how tough this kid is? He is still having trouble with swallowing, but he did drink some pop. We are really encouraging him to swallow. Overall, his energy level was better today.
Here is our address at the Ronald McDonald House. Some people have requested it.
Ronald McDonald House
Trimper (rm. 422)
621 Oak St. S.E.
Minneapolis, MN 55414
Another great day. Thank you, God.
Love,
Jane and Jeff
Friday, January 31, 2003 at 05:52 PM (CST)
Day 15 Post Transplant
Dear Friends,
Max and Jane had a good night at the hospital. His platelet level was low at 4:00 a.m. so he did receive platelets, Benadryl and Tylenol. His white blood cell count went from .9 to 1.3. Nice jump. Although he was tired this morning, he wanted to get up and go to our bed and play games. He then got himself dressed today. Jane did help with the hooded sweatshirt, but we were very happy with his independence. He took a little nap after that on our bed.
Maddie and Sam came to visit with Aunt Joanne. They brought Max a Shrek movie and a a toy. They looked very cute in matching Ronald McDonald House sweatshirts. They went out for lunch with Mom, Dad and Grandpa. It was pretty warm here and we had fresh snow. Maddie and Sam had fun playing outside for a while. Another highlight for the little two was a visit last night at RMH from the Timberwolves’ Cheerleaders. They did some cheers in the gym and were awesome.
Max had OT and PT in the hospital this afternoon. He was able to leave the room with a mask on, but we were very surprised how quickly he got tired from walking. We are hoping it is lack of strength due to the BMT and not MLD loss. We will wait and see and continue to work on building up his strength. He rode the scooter bike well. Actually, he pedaled well but he kept trying to crash into things. Nurses were dodging out of the way. He was happy to return to the room and rest. He also ate some popcorn tonight and drank some Boost. Swallowing is still hard, but we are working on it.
We will probably not be in the hospital for more than a week and a half. Thank you to those who have spoiled us with mail here, but you may not want to send it here anymore. They have a weird mail system, and it appears slow. We will be at the Ronald McDonald House full time after we leave.
Thank you to those many, many, many of you who are helping with the Stanton benefit dinner on February 12th. The plan is that Jane will be there. If everything stays on course and Max is looking good, she’ll be home. Jeff will bring the little two home in March or late February.
Thanks to Jane’s sister Jill, we are currently working with a media specialist in Lansing. We are trying to form some kind of game plan for tackling this disease. Our first goal is to get our story or MLD some national exposure. If anyone has any contacts or connections, we would appreciate it. We came across a great quote from another MLD mom. “If there is no solution, find one.” Thomas Edison We’ll find it. Someone holds the key.
Great day. Thank you, God. We miss everyone.
Love,
Jane and Jeff
Thursday, January 30, 2003 at 06:20 PM (CST)
Day 14 post transplant
Dear Friends,
Jeff and Max had a great night at the hospital. When Jane arrived at 8:30 a.m., they were still sleeping.
Max’s white blood cell count went from .8 to .9. Tomorrow he will be able to walk in the halls and ride this scooter bike they have. He is really tired and not too excited about this but we think it is great. He didn’t receive any blood or platelets this morning. He had low energy but did some exercises with Jane, played some Uno and did a page of easy schoolwork. Jane tried to get him talking a little more, but he doesn’t really want to. He was a good sport about doing the work and moving around. One little thing did set him off this morning. We won’t embarrass him by telling the details. They blame these little outbursts on the Steroids. He is so darn mellow usually that we are so surprised when these happen. He gets over them pretty quickly.
We are also getting Max dressed each day. He only wears his pajamas at night after bath. We are trying to get him moving and thinking each day. We don’t want him to lose any more than he has to. He also tries to go first in every game we play by telling us he deserves it because he’s sick. (It’s the only time he ever says this.) It’s funny but we aren’t buying it. We are happy with his progress. Hopefully MLD won’t take too much of a toll on his body until those new cells really get rolling.
Maddie and Sammy were able to go shopping with Aunt JoJo and Grandpa. They picked out some fun stuff. They are soooo spoiled. Lucky kids. They also made muffins and jello in the RMH kitchen.
Max still isn’t swallowing as much as he should so we are keeping an eye on that. His bone marrow will be tested next Thursday to make sure the new cells are engrafted. We believe they tell you a %. For example, he may be 80% engrafted. We aren’t exactly sure what the % means. We’ll find out and let you all know. We are going for 100%. Other than that, we had a great day. Thank you, God.
Love,
Jane and Jeff
Wednesday, January 29, 2003 at 06:38 PM (CST)
Dear Friends,
Jane and Max had an uneventful night at the hospital. They keep waking Max up through the night to take vitals. We think that takes a toll on his energy level. He was very tired this morning. He did some exercises with Jeff and played some Uno and was back asleep by 10:00 a.m.
His white blood cell count went from .6 yesterday to .8. Another nice leap. We think this hard work may also be making him tired. Our BMT Consultant yesterday told us we would have ups and downs with Max. He may be tried for a few days and spring back. Or he may be tired for a longer period of time. We take it day by day. He isn’t in any pain which is most important to us.
Max hasn’t eaten anything in the past couple of days. There are probably a variety of reasons why; sore mouth, swollen face (steroids), yucky taste, etc. He isn’t talking too much and spits a lot. The doctors don’t seemed concerned, but we would really like him eating on his own before they send us to the Ronald McDonald House.
Maddie and Sam went out for breakfast with Grandpa and Joanne. They also came over for a visit. They are very good about washing their hands. Their charts are filled with stickers so Aunt JoJo has promised them a trip to the store.
Jeff and Jane took a class this afternoon on how to do the nutrition through his line in case he needs this when we go back to RMH. It was good motivation to get Max eating. It was a lot of details to learn. We both looked a little lost.
Everything is well. Thanks for checking in on us. We had a good day. Thank you, God.
Sorry about the pictures tonight. Slow day.
Love,
Jane and Jeff
Tuesday, January 28, 2003 at 06:59 PM (CST)
Day 12 Post Transplant
Dear Friends,
Can you believe it has been 12 days? It has actually gone quickly here. We hope we will still feel that way by day 99.
Jeff and Max had a good night at the hospital. This morning when they drew labs, Max’s white blood cell count was at .6. Big jump. At first we were a bit nervous that it was too big, but the doctors say it is good news. It is funny that we worry if he is doing well, not well, has fever, has no fever, etc. . The doctors laugh at us. We are very happy with his progress.
Max was sleepy this morning. We had to stay awake until 1:00 p.m. because the hospital’s t.v. show was showcasing Max’s new wig and glasses. Unfortunately after the show, we had to say goodbye to Uncle Mark. We will all miss him, including the hospital staff.
We (Jane and Jeff ) went at 1:00 and were taught how to take care of Max’s line. Now we will be ready for when we go back to the Ronald McDonald House with Max. (Day 30??) Grandpa came over and stayed with Max while we were gone. Max was supposed to take a nap but he and Grandpa were wide awake after the class smiling mischievously. He ended up taking a long nap around 2:30.
Dr. Krivit came and talked with us for quite a while this morning. He answered a lot of our questions and assured us Max is doing well. We talked a long time about MLD research and Maddie and Sam were never far from our thoughts. There are a couple of interesting things in the future for MLD. It fired us up that we could possibly support research for our kids and other MLD children. You guys have no idea how much the benefits and support have empowered us to make a difference. We are amazed what these small towns are going to do for kids everywhere! God bless you!
Back at RMH, the nights have become very comical watching Grandpa try to be tough. Maddie and Sam just giggle and start talking about teddy bears. Jane and Joanne remember him being a little meaner in the old days.
Another great day. Thank you, God. Talk to you tomorrow.
Love,
Jane and Jeff
Monday, January 27, 2003 at 06:27 PM (CST)
Day 11 post transplant
Dear Friends,
Jane and Max had a good night. Lots of sleep. They chose to watch cartoons instead of the Super Bowl.
Max received platelets again this morning and his white cell count is at .3. When it is at .5 for a couple of days, he will be able to walk around in the halls. We are on our way. We just need to keep infection away.
Maddie, Sammy and Jane got haircuts this morning. A very nice salon sent volunteers to the Ronald McDonald House to give free haircuts to anyone who wanted one. (Keep giving that change.)
Dr. Krivit and the regular bmt doctors came and gave another good report about Max. Dr. Krivit even let us take his picture. It is in the photo album.
Max was a little low on energy today. We did have a treasure hunt around his room to get him moving and reading. His teacher came today and looked at what he had done from the book she had given him. For lunch, he ate a taco from a local restaurant. He munched it down with no problem. Jane ate one too and couldn’t believe how spicy they were. Max’s taste buds are a little wacky from the medicines.
His physical therapist came and worked with Max in the afternoon. He had to do some exercises and became easily frustrated. We called it a day and took a nap instead. When he woke up he played a few games of Old Maid with Grandpa.
Maddie, Sammy, Grandpa, Joanne and Mark all came to visit. They had a good time. Maddie and Sammy enjoyed being in on the gags.
Mail delivery at the hospital is something to see. The nurses laugh at the amount Max gets. And they never even see what gets delivered to The Ronald McDonald House. We can’t keep up on the thank you notes like we should but please know how much we appreciate what everyone has done. The kindness and caring that has been shown to us can never be repaid. (But we are going to try.) Please accept our thank you and know it means so much more.
Love to everyone,
Jane and Jeff
Sunday, January 26, 2003 at 06:06 PM (CST)
Day 10 post transplant
Dear Friends,
Max and Jeff had a good night at the hospital. They even had a late night visit with Uncle Mark.
Max received platelets this morning. This required premeds (Benadryl and Tylenol). He and Uncle Mark tricked the nurses with fake vomit and then he took an hour nap.
The doctor came in this morning and assured us Max continues to do well. He thought his mouth still looked sore though. Max still has his pain medicine hooked up to his line.
Dr, Krivit also came to visit. He was tanned and well rested from a vacation. It was great to see him. He is the most dedicated medical force behind MLD. We’ll get a picture of him up on the page soon. I know many at home are curious about what he looks like. He also agreed with the BMT doctors that all was well with Max. He did tell us that a fever should be expected within the next week.
Claudia flew out this afternoon. It was great to see her, but she needs to stay longer next time. Maddie and Sam played with Joanne, Grandpa and Uncle Mark today. They are enjoying all the attention. Joanne, the phys. ed. teacher has stickers and charts all set for good behavior and had them in the gym doing exercises this morning.
Max has a whole new set of gag gifts to play on any unsuspecting people coming into the room. Besides the fake vomit, Max has a toot machine and a wild black wig with some odd glasses. The gags will go on through the night. We think the medical staff may soon start avoiding us.
Another great day. Thank you, God. Thanks to all of you. We’ll update again tomorrow.
Jane & Jeff
Saturday, January 25, 2003 at 07:02 PM (CST)
Day 9 post transplant
Dear Friends,
Jane and Max had a good night last night. They played Old Maid for a while (Max never loses), watched t.v and tucked in for the night.
Max had another great day and another Happy Meal. He needs to be in a McDonalds commercial. Maddie and Sam came over and had Happy Meals with Max. They spent the rest of the day at RMH.
Don and Marcia left this morning. It was hard to say goodbye. It helps knowing we have good help with Bob and Joanne and that Don and Marcia will be back. We look forward to seeing Uncle Mark tonight.
The doctors came and assured us that Max is doing well. His white count cell is no longer at 0 but at .2. We hope that is a sign of those wonderful new Arylsufatase A making new cells! We will wait and see. He has no fever or any signs of Graft vs. Host disease. We hope the great news continues.
Also for the record, at 7:00 p.m., Max had more enthusiasm than we had seen in months. He was standing on the bed and being crazy. We wish we had that kind of energy.
Another great day. Thank you, God. Thank you prayer army.
Jane & Jeff
p.s. For our friends and family on the email list serve, our email was down and we couldn’t send you the update. You will get it tomorrow (hopefully).
Friday, January 24, 2003 at 07:27 PM (CST)
Day 8 post transplant
Dear Friends,
Jeff and Max had a good night. Max went to bed early. He hadn’t taken a nap all day yesterday and was pretty tired.
Max woke up grouchy this morning with a stomach ache. They gave him his stomach medicine and he felt better. He also needed to receive platelets this morning. They gave him pre-meds for that (Benadryl and Tylenol). So between the stomach medicine and the Benadryl, the grouchiness was to be expected, and Max was sound asleep by 12:30 p.m. He slept over 2 hours.
The doctors came in and visited this morning. They continue to assure us that he is doing well. It is just a waiting game until the white blood cell levels start moving up. Engraftment of the new cells should happen within a week.
Max had another Happy Meal today. He ate more hamburger than yesterday and fewer fries. Yay! He hasn’t vomited in 2 days and his mouth doesn’t hurt. Yay, again!
Bob, Claudia and Joanne made it safely to Minneapolis. They visited with Maddie and Sammy at the Ronald McDonald House and then visited Max. It was great to see them. It is going to be hard to say goodbye to Don and Marcia tomorrow. They have been here from day 1 and have really been working hard. We’ll miss them, but they will be back.
Some of you may have noticed that the guestbook is missing some of the early entries. We have been printing off early notes and are making a book of the pages. In order to keep it manageable we are leaving three days of messages still in the guestbook. We had over 100 pages of entries printed off. That is truly awesome. It is still so emotional and such good therapy reading them. We continue to gain strength each day from all of you.
All in all, it was a great day. Thank you, God. We’ll be back for an update tomorrow. Love to everyone.
Jane & Jeff
Thursday, January 23, 2003 at 06:34 PM (CST)
Day 7 post transplant
Dear Friends,
Grandpa and Max had a good night at the hospital. It probably brought back the old days for Don.
Max had good reports this morning from his blood work. There was nothing to be worried about. He watched some cartoons and relaxed for awhile this morning. He walked around and did exercises with his physical therapist. He then did some cutting and coloring with his occupational therapist. He made some silly snow glasses. His speech teacher came in next and did some more testing with him. He did very well. The doctors came in later and said that he continues to do very well. A very good and busy morning.
For lunch Max actually ate 2 bites of a McDonald’s hamburger and a whole small fry. He had half of a strawberry shake too. This is the first he has eaten in almost 2 weeks!! We were very excited. His mouth was bleeding a little while he ate, but he didn’t seem to mind. He even hammed it up for a picture. He is amazing.
In the afternoon, he played many games of Old Maid. He also watched Jimmy Neutron, Boy Genius on DVD.
Maddie and Sam played at the RMH for awhile and then went shopping to Target. Then they came to visit with Max. They continue to be happy.
Bob, Claudia, and Joanne (Jane’s dad, mom, and sister) leave Michigan tonight and should arrive tomorrow afternoon. Mark, Jeff’s brother will be flying in Saturday night. Marcia and Don are leaving Saturday and Claudia flies home on Sunday. It will be a busy and happy weekend.
It was another great day. Thank you, God. Thanks for looking in on us.
Jane & Jeff
Wednesday, January 22, 2003 at 05:50 PM (CST)
Day 6 post transplant
Dear Friends,
Max and Jane had a good night at the hospital. Max fell asleep around 7:30 p.m. and didn’t wake until 7:30 a.m. His machine kept beeping, but Max slept right through it.
Max had a stomach ache when he woke up and they gave him medicine right away. They also increased his pain medication to help with his throat. He was also a little grouchy this morning. We can’t say we blame him.
He had physical therapy this morning. He played ball and did lots of walking. He also did some other exercises for his legs. He did a couple of papers from school. They were quick and easy. We tried to read a story aloud, but his throat hurt. He watched some t.v. He took a long bath and rested for the rest of the day. He even took a 2 and a half hour nap.
He has lots of hair left, but they are short. His bald spots are very soft and smooth. We think he will really like it when his whole head feels that way. He is anxious for his other hair impaired friends, John and Eric to see him.
It was very cold in Minnesota today. Maddie and Sam hung out and played at the Ronald McDonald House. They did arts and crafts at the house last night and made some fancy necklaces. New families are moving in all the time, and they are sure to make lots of new friends.
As of 5:30 p.m., the plan is that Grandpa will spend the night at the hospital with Max. Jane and Jeff will head back to RMH and hang out with Maddie and Sam.
A slow quiet day. Thank you, God. Thanks for checking in.
Jane and Jeff
Tuesday, January 21, 2003 at 07:30 PM (CST)
Day 5 post transplant
Dear Friends,
Max and Jeff had a good night at the hospital. They slept well and Max started a drip for pain medicine. The doctors thought his throat was hurting more than Max was letting on and that was why he keeps spitting.
There was hair all over his pillow when he woke up this morning!! By noon we were pulling out big chunks of hair. (See Photo Album) By 5:00 p.m., there was hair everywhere. We gave up on it and shaved his head! He looks awesome. He has a big beautiful birth mark on his head.
He did some exercises with his Physical Therapist this morning. He asked to walk around when Grandma, Sam and Maddie came to visit. It was their calmest visit yet and quite enjoyable. Sammy did not like that Max was losing his hair, but Maddie was happy to pull out a chunk.
Grandpa came and visited with Max today. They had a good time together. We also received a book in the mail about Walter, a dog who toots a lot. That provided a good laugh for today. Unfortunately, we are really into bathroom humor.
Max took a long bath/shower. Clean pajamas and bed. He didn’t nap at all today. We thank God for the good day. We are going to attach at the bottom a quick summary of what has happened to our family. We know some of you have never met us and have heard about us from others. We just want to make sure people have accurate information. For those of you have heard it all before, thanks for checking in and we’ll write again tomorrow.
Jane & Jeff
MLD History
Last spring, Max’s teacher and gym teacher had concerns about Max’s fine and gross motor skills. The physical therapist and occupational therapist at the school suggested we take him to a doctor over the summer to get the ball rolling for P.T./O.T. at school. We took him to the pediatrician in June. He referred us to a pediatric neurologist. We went to him in July, and he agreed that Max had mild coordination problems. We were not over concerned at this point.
When Max started second grade this fall, his teacher had concerns about his academic progression and continued to be concerned over his motor skills. We had him run through a battery of tests at his pediatrician but nothing could be found. On October 23rd, Max fell at recess and hurt his head. The school suggested we take him to a hospital to have a Cat scan. We did.
The next day, they called and told us they found diffuse white matter on the Cat scan and scheduled an MRI the following day.
The MRI determined that Max had meta-chromatic Leukodystrophy. Because this is a genetic disease, we had Maddie and Sam tested. They each had a 25% chance of having the disease. They both tested positive for MLD.
Obviously, we were devastated. We had never heard of MLD and now our three children were diagnosed with it. We have spent many hours researching MLD on the Internet. We have tremendous family and friends who have looked everywhere for information and continue to keep looking.
We are both carriers of the disease. The odds of being a carrier are 1 in 150. It is not curable at this time. A Bone Marrow Transplant will slow the disease down. We are hoping with Max that we will slow the disease down until the cure is found. We have not made any decisions about Maddie and Sam. They know very little about what is going on.
We are prepared to fight. The prayers and thoughts of many just continue to strengthen us each day.
If you have any questions, the link below may help or you can email us. Knowledge is the key.
Jane & Jeff
Monday, January 20, 2003 at 06:13 PM (CST)
Day 4 post transplant
Dear Friends,
Max and Jane slept at the hospital last night. They had a good night with lots of sleep.
Carl and Cindy left this morning. (Thanks for coming out.) It was good to see new faces, and they were a lot of help with the kids.
Max had a great morning. He wanted to sit in a chair for awhile and walk around the room. He even did 2 sheets of easy school work. He walked around again with his Physical Therapist. He stayed awake until 3:30 in the afternoon and then took a nap. He is in little pain although his stomach hurt a bit this afternoon. They gave him pain medication right away. He is still spitting lots, but he did drink some Cherry Coke today. We are on pins and needles waiting to see what each day will bring. We thank God for each good one. Today was a good one.
Jeff and Max will have a sleep over tonight. Thank you for checking in.
“Courage is the resistance to fear, the mastery of fear, not the absence of fear.” Mark Twain Hang tough!
Jane & Jeff
Sunday, January 19, 2003 at 07:58 PM (CST)
Warning: We are moving into areas where you may not want your young children reading Max’s journal entries. We are going to continue to give daily updates, but we don’t want to burden young kids. Thanks.
Dear Friends,
Max and Jeff had a good night at the hospital last night. They were able to get lots of sleep. The doctors came in this morning and again assured us that all was well on their end. Max is still vomiting and very tired. His mouth must hurt because he doesn’t want to swallow. We have a spit bucket. He doesn’t complain. The pain medicine must take care of it.
He was able to sit up and listen to Jane read a Captain Underpants book. He has listened to music and watched some t.v.
Maddie and Sam went to Mall of America with Aunt Cindy, Uncle Carl, Grandma and Grandpa. They had a good time. The grown ups seemed tired when they got back, but Maddie and Sam were still going strong.
Weekends are very quiet around here. There aren’t many people around.
Thanks for checking in on us. We are overwhelmed by 10,000 + hits to the Caring Bridge Site. Many people have told us it’s addictive. What a nice addiction.
We have included a nice site (below) to visit if you are interested in learning more about MLD and spreading the word. Open “MLD 101” for information.
Jane and Jeff
Saturday, January 18, 2003 at 08:11 PM (CST)
Warning: We are moving into areas where you may not want your young children reading Max’s journal entries. We are going to continue to give daily updates, but we don’t want to burden young kids. Thanks.
Day 2 post transplant
Dear Friends,
Jane and Max had a rough night. There was lots of tossing and turning. Max’s mouth kept hurting (the sores are starting), and Jane kept ringing for Morphine. We don’t want Max to experience any pain that can be avoided. They gave up on sleeping at 7:00 a.m. and watched cartoons.
Jeff came over in the morning and spent most of the day with Max. Jane went back to RMH and spent time with Maddie and Sam. They had lots of fun with Aunt Cindy and Uncle Carl. They enjoyed having new people to show around and play with.
The doctor told Jeff that radiology reported that a bit of pneumonia had shown up on the x-ray. They took another x-ray and thought it looked better. The doctor said he couldn’t see anything and was unsure if anything was actually there. Max was already on an antibiotic anyway. He told us not to worry. So we won’t. They seem to be able to handle any situation as it arises.
Max was in good spirits throughout the day. He was tired and still vomiting on occasion. He took a couple of short naps. Grandma came and sat with him in the evening, and we were able to go to dinner with Cindy and Carl.
Don and Marcia have been an enormous help and we will never be able to thank them properly. Jane’s dad Bob and her sister Joanne will be here on Friday to take over the next shift. Jane’s mom Claudia and Jeff’s brother Mark will be here for a few days too. We are so lucky to have such wonderful help. That includes the help back home. Thanks guys.
Thanks for checking in. We miss everyone.
We have such faith that Max will be o.k.
Jane & Jeff
Friday, January 17, 2003 at 07:46 PM (CST)
Warning: We are moving into areas where you may not want your young children reading Max’s journal entries. We are going to continue to give daily updates, but we don’t want to burden young kids. Thanks.
Dear Friends,
We are happy to report that today was a boring day (at least on the medical side). They took Max downstairs to check his line out last night. They didn’t see anything serious. They restitched it so it wouldn’t move away from his skin at entry. He went back to his room and tucked in for the night. He and Jeff had a pretty uneventful night.
Max was tired throughout the day but his line wasn’t bleeding. He was nauseous, and they gave him medicine for his stomach. He worked with the Occupational Therapist for a while (cutting, stinging beads and writing). He also walked for a bit with his new Physical Therapist. Reggie had to go back and work with adult BMT patients. We will miss him.
Maddie celebrated her 5th birthday. Grandma, Grandpa, Sam and Maddie picked up Uncle Carl and Aunt Cindy from the airport at 4:00. They stopped by the hospital to see Max. Max was able to give Maddie her gift from him (Polly Pockets). They headed back to RMH for pizza and birthday cake. She had a good time and feels like such a big girl. We would like to freeze her at age 5 but know that can’t be done.
Doctor Krivit tells us we are in the honeymoon stage. He says you have a couple of good days and then it gets tougher until around day 9. Then you are over the peak and things become easier. We shall see, but that is what we are anticipating.
Jane’s dad said, “If anyone tells me that people in this world are bad, they’re talking to the wrong guy.” We can’t agree more. As we read the guest book, it is so overwhelming how caring people are. It also pleases us how you all seem to be gathering strength from each other. It is truly a wonderful world. Thanks for checking in with us.
Jane & Jeff
Thursday, January 16, 2003 at 06:04 PM (CST)
Warning: We are moving into areas where you may not want your young children reading Max’s journal entries. We are going to continue to give daily updates, but we don’t want to burden young kids. Thanks.
Dear Friends,
Let’s start with the bad news and work from there. Last evening was the worst that Max has looked. He was covered in hives and had a fever. It was heart breaking to look at him. They drugged him up before bedtime with his premeds (including Demerol) and he got his last does of ATG at 11:30 p.m. He and Jane slept at the hospital and had a good night.
In the morning he looked better and even had a sense of humor. He still looked rough but was much improved since last night. His hemoglobin levels were good so he didn’t need to get any blood. The nurses assured us his numbers were good, and he was ready for transplant.
This morning Jane had a chat with Max about the transplant. She explained that it wouldn’t hurt and that he would be getting new cells. She told him there would be a mini celebration and she needed to say something like a toast. She ran many ideas by him about what she could say. He kept shaking his head no. She said, “I hope these cells kick MLD in the butt.” And he nodded his head yes. Perfect!
At 11:00 we had a blessing ceremony with a pastor at the hospital and Pastor Jamey. Grandma and Grandpa Trimper and Maddie and Sam were there. Maddie and Sam brought balloons to help Max party. Prayers were said. Each of us touched Max with oil and said a special prayer to him. His kick in the butt quote was said. The nurses and aides came and brought him a balloon and a Sponge Bob puzzle. He received the cells and they were finished entering his body by 11:45.
About 1:00, we noticed blood on Max’s bandage around his line. We were worried that it was stem cells that didn’t go in his body. No, there was a hole in the line and it was his blood. They cleaned him up and took him to the people who put the line in at 6:00 p.m. He got to ride in a wheelchair with a mask on. We will fill you in on that tomorrow.
We also moved this afternoon to a bigger apartment at RMH. We are now in Room 422. It is nice to have more space.
We will now be concerned about infection, Graft vs. Host disease (Max’s body rejecting the new cells), and the cells not becoming engrafted. Every day will be an adventure. Please keep praying.
We can’t possibly tell you how much we appreciate all the prayers that were coming from everywhere. We are strengthened by your support. We totally agree with Max. We hope those cells kick a little MLD butt.
Jane & Jeff
Wednesday, January 15, 2003 at 07:49 PM (CST)
Warning: We are moving into areas where you may not want your young children reading Max’s journal entries. We are going to continue to give daily updates, but we don’t want to burden young kids. Thanks.
Dear Friends,
We had a bit of a rough time last night (evening). Max had a fever, and they thought it was the ATG medicine. To be certain, they did a chest x-ray and started an antibiotic. We started to lose our cool a little. However, Max took some Tylenol and a long nap and woke up brighter eyed. The chest x-ray turned out fine. We were very relieved.
He received his second dose of ATG at 11:00 p.m. and his third at 11:00 a.m. Jane and Max slept at the hospital last night. They both slept well, and Max didn’t have a fever. His Hemoglobin count was low, so they needed to give him some blood this morning (early). Max and Jane woke up at 9:00 a.m. and discovered hives on Max. The doctors believe this was caused by the blood and the fact that he didn’t get pre-meds (Benadryl and Tylenol) before the blood. They then gave him Benadryl, but he was battling the hives all day. He never complained of itching at all, but he is covered. He also had a stomach ache this morning. They gave him pain medicine for that and it seemed to go away. He feels o.k. but looks like “10 miles of bad road”.
Max still has all of his hair. He shouldn’t lose it until next week. He also hasn’t had mouth sores yet. That too usually occurs a week after chemo. We’ll let you know when/if these happen.
We haven’t moved yet. That will probably happen tomorrow. Maddie and Sam had a good time at the Ronald McDonald House. They played all day.
Pastor Jamey arrived this evening and visited with us at the hospital. We are ready for tomorrow.
Jane & Jeff
Tuesday, January 14, 2003 at 05:09 PM (CST)
Warning: We are moving into areas where you may not want your young children reading Max’s journal entries. We are going to continue to give daily updates, but we don’t want to burden young kids. Thanks.
Dear Friends,
Max and Jane had a good night at the hospital. They both slept most of the night. Max had his last dose of Cytoxan at 10:00 a.m. He has continued to vomit throughout the day. He continues to be pretty whipped and out of it. He is easily frustrated. He slept a large chunk of the day and doesn’t say much. He started a new medicine today called ATG. He will have it twice today and twice tomorrow. It helps to prevent rejection of the new cells. There was a chance of some reaction; hives, fever, respiratory distress. Max had a slight fever as of 5:00. The other side effects haven’t happened. The nurse and doctors continue to assure us he is doing very well. It is tough to watch him so tired out. Snoopy came to visit today and that got his attention. His body has been through a lot already. He’s a tough kid.
The transplant will be at 11:00 a.m.(Minnesota time) on Thursday. (That’s noon for you Michigan folks.) Pastor Jamey is flying in from Stanton to help with the blessing so Max will be in good hands.
We’re saddened about news from Stanton. Our community has sure felt a lot of pain. Without mentioning names, know that we are praying.
Maddie and Sam played at RMH all day with Grandma and Grandpa Trimper. They took a short nap and had a quiet day.
Max will continue to take ATG tomorrow and prepare for Thursday. Thank you for checking in.
Jane and Jeff
Monday, January 13, 2003 at 06:39 PM (CST)
Warning: We are moving into areas where you may not want your young children reading Max’s journal entries. We are going to continue to give daily updates, but we don’t want to burden young kids. Thanks.
Dear Friends,
Well, the hospital kicked Jane out of the room last night. They wouldn’t let both of us sleep here. It worked out well. She went back to RMH and got to spend time with Maddie and Sam. Jeff and Max had a great night. Max had been given more medicine for vomiting and it really knocked him out. He slept all night.
This morning he was watching t.v. and snoozing. He had more of the medicine to deal with the vomiting. He held down two oral medicines this morning. That is a good thing. In the afternoon, he rested and was very quiet.
He received his dose of Cytoxan at 10:00 a.m. Only one more tomorrow. Yeah! The doctors came in and assured us that he is doing very well.
We received good news at the Ronald McDonald House. We will be moving into a larger space either tomorrow or Wednesday. We will have lots of cleaning to do. We’ll let you know what our new home is like later this week. We want to continue to tell everyone how wonderful the RMH is. We regret not filling those containers on our many visits to McDonalds. The people there are so kind and the home itself is beautiful. They make it much easier to be away from home.
Some people have been asking for specific things to pray for, and we have a big one. After Max gets transplanted on Thursday, he will be checked on Feb. 6th to see if the new cells have engrafted (taken over and are making new cells) or if Max’s cells ‘fought’ off the new cells and are still there. Remember this is not the medical explanation, but you get the idea. If Max’s cells are there, we are back to square one. If you are part of the praying force, please put in a good word for the new cells. Also throw in a thank you for the parents somewhere in this world that donated their new baby’s cord blood to save lives. We wish we had had that opportunity.
Good night. Thanks for checking in on us. Thanks too for all the card and prayers.
Jane & Jeff
Sunday, January 12, 2003 at 05:42 PM (CST)
Dear Friends,
Jane and Max slept at the hospital last night. Max slept well. He fell asleep around 9:00 and slept until 8:30. He looked pretty good this morning.
He got his second dose of Cytoxan at 10:00. He has been very whipped and vomiting throughout the day. He has napped a little on and off. It’s been tough. He doesn’t feel like talking. He says nothing is hurting though. Max’s nurse, Kent told us that Max was handling this well. He said Max was easy to take care of. The doctor came in this morning and told Jeff that Max’s ‘numbers’ were good and everything was going smoothly.
Maddie and Sam played at the Ronald McDonald House today. They have made some new friends. They are very comfortable there.
We spent most of the day at the hospital with quick trips to RMH to visit Maddie and Sam. The three of us will be hanging out at the hospital tonight. We don’t know the time of the transplant on Thursday, yet. We will let you know when we do.
Thanks for checking in.
Jane & Jeff
Saturday, January 11, 2003 at 04:47 PM (CST)
Dear Friends,
Max and Jane had a short night last night. They stayed up to midnight, and people were in and out all night. They woke up at 8:30 when Marcia came to stay with Max.
Max started to receive nutrition through his main line last night. He is still eating though. Yesterday he ate about 24 saltine crackers.
Max received Cytoxan at 10:00 a.m. He will receive one dose per day thru Tuesday. He has vomited a few times today and is very tired. He tried to eat some, but it just wouldn’t stay down.
He has complained very little. He’s been watching Cartoon Network almost nonstop. It is quiet here during the weekend. There is no PT., OT , speech etc. There are also two empty rooms by us. Unfortunately they will be filled all too soon with children who need transplants.
He’ll have a nice warm bath soon. (We found a tub.) Put on clean jammies and have a nice clean bed.
Maddie and Sam hung out at the Ronald McDonald House with Don and Marcia today. Don did all the laundry this morning including sheets while taking care of the kids. He’s having so much fun! We spent most of our time at the hospital.
Thanks for the good thoughts and prayers.
Jane and Jeff
p.s. As we are writing this, Max’s nurse, Kent just said the greatest thing. He looked at Max and said, “It’ll get better, Bud.” Right words at the right time!
Friday, January 10, 2003 at 08:47 PM (CST)
Dear Friends,
Max and Jeff had a good night’s sleep. Probably the best for Max since he arrived. He had a busy day today. He bowled with Reggie. His balance was pretty shaky. We put his tennis shoes on to help with traction but he was still pretty weak. He still beat Reggie. He put together a puzzle and drew a picture with Julie, the occupational therapist. He had his dressing changed (ouch). He ate a bit, slept a bit, and watched a lot of t.v. He continues to be very tired.
Maddie and Sam went to see The Lion King at the Imax Theater with Jeff, Don and Marcia. Then they played at the Ronald McDonald House.
Don came and stayed with Max for awhile tonight, and we got to go out for dinner. It was good to have a chance to talk.
We met another MLD mom. She has a daughter that was symptomatic at 2 (infantile case of MLD) and had a bmt at 5. She was asking her mom for cheese and milk and can walk with a walker. We don’t know how much each of you know about MLD, but she is a living miracle. It was an honor to meet her and her warrior mom.
The only other thing to add schedule wise is that Max will be semi quarantined up to day 300. He won’t be able to go to public places. He can have a friend over, or cousins, etc. The doctor was specific on no school, movie theaters, airplanes, etc.
Tomorrow Max will start the Cytoxan. Our hopes and prayers are that he will have little discomfort, and his body will become ready for the new cells on Thursday. Hopefully tomorrow’s journal entry will be a good one. Thanks again for all the support. We love reading the guest book. We are inspired daily by it.
Love, Jane and Jeff
Thursday, January 09, 2003 at 05:47 PM (CST)
Dear Friends,
Jane and Max had a good night. A few beeps occurred and lots of people in and out, but they were sleepy. Max had another good day. He is still sleepy, but in no pain. He had a speech lesson today and did very well. We were both eavesdropping and were very pleased with how well he comprehended her and what good language skills he has. His speech therapist Grandma would have been proud.
He took a short walk with the physical therapist. His temporary teacher came and gave us some worksheets and some books for him to read. We will see how much he feels like doing.
He ate pretty well today; a pancake, popcorn, chicken, and a couple of fruit roll ups. We are counting and keeping track of his calorie intake.
Maddie and Sam did some shopping with Jane, Don and Marcia. They went to Target and took a nap. They came to visit Max tonight.
Max just took a warm shower. He is in a clean bed with brand new pajamas. Very comfy.
Jeff and Max will stay the night. Thanks for looking in on us. MLD never knew what hit it.
Love, Jane and Jeff
Wednesday, January 08, 2003 at 05:44 PM (CST)
Jeff and Max had a long night in the hopital last night. Max's machines kept beeping and the nurse had to keep coming in. It was never anything to do with Max but had to do with meds, batteries, etc.
Max was tired today. He has had a lot of meds pumpedinto his little body. He is pretty whipped. He had morphine to day when they took off his dressing to change it (around his line). This hurt. Other than that he is in no pain or discomfort.
He napped for a little bit and watched t.v. He had physical therapy today with Reggie. They played lawn darts. He is having a hard time keeping his balance. It is because of all the meds. We were warned by another mother about this.
Maddie and Sam went grocery shopping with Don and Marcia and to McDonalds for lunch. They took a nap and made cards for Max. They visited him at the hospital after dinner.
Tonight Jane and Max will have a sleep over. Hopefully there will be little beeping.
We had some questions about his schedule. Here is the general plan. He will receive Busulfan (the lighter chemo drug) for two more days. He will then receive Cytoxin (the stronger one) from Sat.-Tues. On Thursday, Jan. 16, he will be transplanted. There will be a blessing and a mini celebration for him. We will let you know the exact time and you can have a mini blessing and celebration for his new cells within yourself. Friday, January 17 (Maddie's Birthday) is considered Day 1. He will be in the hospital until approximately Day 30. We will stay at Ronald McDonald until approximately Day 100. We are hoping to be home by April 25th. Just in time for his birthday on the 29th.
Thanks for all the incredible support at the Caring Bridge Site. Tears were streaming as we read the notes in the Guest Book. We are so thankful.
Jane and Jeff
Wednesday, January 08, 2003 at 10:21 AM (CST)
We have entered past updates. To view them look in the "History" section on the page. We'll continue to update daily.
Wednesday, January 08, 2003 at 10:19 AM (CST)
Monday, January 6
Dear Friends,
We arrived at the hospital at 5:30 a.m. Max had four procedures done:
1. a spinal tap (getting base line to measure against later);
2. a procedure where they took some of Max's marrow (about 2/3 a pop can in
case they need to give him a transplant with his own at a later date. Most likely
not needed, but they do it.);
3. His main line put in. (It dangles from the top of his chest. He will have all
blood drawn from here and medications will be given here. No more needles.)
4. A bronch (Basically down the throat looking for problems with the lungs,
infections,etc).
He was knocked out for all of this and it took about 2 1/2 hours. He did well,
but was very drowsy. He was pretty out of it all day. There was actually a
moment when he was grouchy.
Tonight they gave him medicine to prepare him for tomorrow's first dose of
chemo (4:00 a.m.). They will give it again every two hours.
He ate some pizza, roll, cake, milk, and pop. Sounds like a lot, but he only
ate some of each.
We are now preparing to watch Treasure Planet. This is a big deal. It is still
out in theatres, but another little MLD boy's aunt works for Warner Brothers. It is
an academy copy. Rumor has it we may have Harry Potter soon.
Maddie, Sam, Grandma T. and Grandpa T. stayed at Ronald McDonald
today. They came and saw Max, and the two little guys got to go to the fifth floor
for kid's activity time. They painted windows. (and their shirts.)
Love to all. Of course we miss you, but the fight is on. We will not be
defeated.
Jane & Jeff
Tuesday, January 7
Dear Friends,
Max and Jane had a good night at the hospital. They gave Max morphine to
help with neck pain and they went to sleep around 9:30. Many people came
and went through the night but they both slept reasonably well.
Max started chemo today at 4:00 a.m. They took lots of blood at first (through
his main line). He was pretty much Max today. He is/was very tired. He didn't
nap though. He watched Treassure Planet again. Many people came in and
out of the room today. Max did physical therapy with Reggie (something with a
soccer ball). Joe came to talk about speech and will be back tomorrow to play a
game. His teacher should be here tomorrow and can get him thinking.
We gave him a shower tonight and his sheets were changed. He looks very
snuggy and is watching a movie.
The chemo is having an effect on him. He is tired. He doesn't hurt at all
though. It is too early for the other side effects: vomiting, mouth sore, hair loss.
We'll let you know when and if those happen.
Maddie and Sam went to the zoo with Don and Marcia and their new friend
Abby. (Her brother is the other little MLD boy.)
Lots of goodies were given to Max today: t-shirts, markers, paper, crayons,
stuffed animals, a toy car, etc.
Jeff and Max will sleep at the hospital tonight. We'll keep you updated daily.
Love, Jane and Jeff
Wednesday, January 08, 2003 at 09:41 AM (CST)
I have just started this page. We will update it daily, usually in the evening to let you know how things are going. Jeff and Jane
Click here to go back to the main page.
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