Merry Christmas!

Merry Christmas to all of you!  I made the decision not to send out cards this year and use the blog instead to wish all of you the best Christmas and a very Happy New Year!  I can only do so much while recuperating so the blog will have to do.  Yes, we were able to come home again. Next trip they won't be able to tear me away. I eat better, I sleep better, I move around more when I am at home.  Being here is the best medicine for me!  I have a Dr.'s appointment on Wednesday so we will see what they say.  If you ask me, I am doing great.

I have so appreciated all of your cards, emails and any other form of a message. To know that you continue to remember me in prayer is humbling.  Thank you from the bottom of my heart. I did not know how big my world is with all my friends until this experience.

I received a lovely letter from my donor this week and thought I would share it with you. I hope it will touch your heart as much as it did mine.

Hello!

Thank you so much for your letter...I received it a few days ago, and it was so good to hear from you!  I have to tell you that it has been my honor and privilege to be able to donate, and there have been so many people praying for you, your family, and me since I found out that I was going to be able to donate to you!  It absolutely boggles my mind how much doctors can do...we are such complex creatures!

I would love to continue to correspond with you; please let me know how you are doing, and I do hope and pray that we'll be able to indeed meet when all of this is over or you.

Please know that you and your family are being thought of, and I pray that you will have a phenomenal Thanksgiving and Christmas this year.

Looking forward to hearing from you soon,

Your donor

Now enough of me, let me catch you up with the rest of the family.  Jen and Glen are doing great. Glen changed jobs not too long after the New Year and it has been everything he hoped for. We are very happy for him.  Jen continues her part time job at the elementary school as a Lit coach and is chauffeur of the year as she gets everyone where they need to be. Eli (15) and Anna (13) are deep into basketball, Emma (8) is also playing. 

The Simpsons are just as busy with Seth finishing his 2nd year of Medical School (at MSU).  Sarah will be filling in as Assistant Dean of the Midland Charter Academy soon after the start of the new semester. It is a challenge and something new for her. I can tell she is going to love it when we talk.  Rising to a new challenge has always inspired her and this is no different for her. Ella (6) is very involved in gymnastics, she is now "Level 4" and much like her parents in how she loves a challenge. Grey (3) is still loving going to Miss Jodie's. He just goes with the flow most of the time.

Herweyer's also are keeping busy. Liam (7) has joined a swim group so that takes care of the energy a few times a week plus Cadets on Wednesdays. Thijs (5) goes to Young Kinders every morning and loves school. Dave continues his busy schedule and Kate tries to stay on top of everything. 

Same thing could be said for the Cunningham's.  Chad leaves mid-January for a 2 week stay (for his Master's program) in South Africa. Beth has cut her work week back to 3 days a week so that she is more available for me. Luci (22 months) has grown so much and we greatly enjoy her.   

I am grateful as I have said many times over for the love and care that I receive. Den has turned into the best nurse ever. Seriously, giving me shots, transfusions and just being in charge of my care, he is doing a fantastic job.  Who would have thought he would become such a caretaker for me? 

May all of you enjoy a blessed Christmas and may the New Year bring good things your way. I am mindful of the sacrifice the Lord has made to provide for us, beginning with the birth of the Christ Child. What a beautiful time of year!

Grace and Peace to each of you.......with much love......Peggy

December 17, 2012

Mom had her weekly appointment with Dr. Magineau today and we thought it would be nice to update the blog.  Mom's levels are looking good. She received her results of the 30 day bone marrow biopsy and we are headed in the right direction.  Her doctor's look at 2 blood lines the CD33 and CD3.  The CD33 line indicated 100% donor stem cells and the CD3 line indicated 65% donor stem cells and 35% mom's stem cells.  The doctor is very pleased (so we are too)! At 100 days out when they begin to taper off her GVHD medication the numbers may change which could be an indication her disease is trying to come back, but they will monitor this very closely.  The reason they would begin to taper off the GVHD medication is because the longer mom is on it the more immune-suppressed her body becomes so there is a very fine balance.

Mom's energy level is still quite low. Probably a result of her medications and nonexistent appetite.  Sleep is good and allowing mom's body to heal.  However, our goal is to increase mom's nutrients and fluid intake so she can become strong and medication can begin to taper off.

At this time mom will go in for further blood work on Friday morning and if everything comes back "normal" she will be able to go home to Holland for Christmas and then her next appointment with her doctor is the 26th.

Dad is a great caregiver.  Mom says he gives the best shots, even better than the nurses.  Who knew!
Mom and Dad are enjoying all the Christmas cards and updates from friends and family.

Please continue to pray for healing and mom's "fighting spirit".

Merry Christmas,

Sarah

An Unexpected Trip....

HOME!  Mom and Dad arrived in Holland late Wednesday evening and are staying for a few days at home.  It's so wonderful to have them here and they are loving every second of being back in their house.  Its been long time!

So many of you ask how Mom is doing and she is doing so well.  However, stem cell transplants are  really tough and the recovery is very long.  It is only day 44, we still have a long journey ahead. 

Mom had a really busy week of appointments.  On Monday, she had her normal clinic appointment and was given a double blood transfusion.  This really gave her the boost she needed.  Her energy perked up and she felt so much better almost instantly.

On Tuesday, Mom had her first bone marrow biopsy since the transplant.  We are told not to read into this biopsy too much.  The 100 day biopsy will be more telling of her progress.  The biopsy went well...they really knocked her out and she didn't have too much discomfort afterwards.  We should have these results in one week.

Mom's weight has been declining since she was released from the hospital.  We are trying to hang on to 100 pounds.  She has no appetite and nothing tastes good.  Eating is a very big struggle.  There is reason to believe that this is because she may have upper GI GVHD.  On Wednesday, doctors performed an exploratory endoscopy of her upper GI and took several biopsies to confirm if this is the case.  We should have these results in several days.  Upper GI Graft Verses Host can be treated and could be the cause of this weight loss.

Mom hopes to make more weekend trips.  I cannot express enough how good this has been for her soul.  Thank you for your continued well wishes and prayers.

Love,
Beth

Day 37

Sorry for the lengthy delay in posting! I kept waiting for something exciting to happen so I could tell you all about it but.....zero excitement!

I did not know a person could sleep so many hours in a day. I would say 18 hours of sleep for me would not be an exaggeration.  Just. cannot. keep. my. head. off  the. pillow.  It makes for a very exciting day for Den as you can imagine.  He took a "get out of jail" card today and went to South Bend to (hopefully) watch our nephew Jarrod play for UK against Notre Dame today. Juliet was here today and Jen with Emma is spending the night, which gave me a new audience to sleep in front of.

I don't want to complain because I know I am doing well, but really the fatigue, shortness of  b reath and light headness really takes it's toll on me. I have some skin issues going on that may possibly be the beginning of gvhd.  I itch everywhere. It is pretty intense.  I have medicine for it but guess what the side effects are ?  That's right...fatigue etc. I see my Dr. at least once a week, on Monday so we will see what he has to say. For now I pop the pills and I sleep. Everything I read says it takes a year to feel normal and I am really beginning to believe it!

We have had some very welcome visitors, Alversons, Curtis', Jan Currey were here. Due to unexpected time at the hospital we only saw them for about 30 minutes.  Jane and Lynette came over too, we had a great time too! Juliet took me to my Dr. apt. today and Jen is spending the night.

"I have taken you along a path that has highlighted your need for Me, placing you in situations where your strengths were irrelevant and your weaknesses were glaringly evident. You have learned to thank Me for hard times and difficult journeys, trusting that through them I accomplish My best work ."

Thank you again for prayers, encouragement and all that you do to enable me through tough times.  I think I am beginning to really realize the length of this journey and my attitude is not always the best. Your presence in my life holds me accountable...thank you.

Grace and Peace, Peggy

Time for an Update

  Life is pretty boring at the apartment and that is how we like it!  What I mean to say is, absolutely nothing exciting or out of the ordinary is happening. No infections, no graft vs. host, no fevers no anything and that is all good.  We have gone back to the BMT Clinic 3 times this week. I have had blood draws each time so that they can calibrate my medication levels and change dosage to optimum levels.  Dr. Magineau's PA told us today we are doing everything right so just keep with the program.

Den has turned into quite the nurse. I have 2 medications that require at home infusion. Not only can he manage the infusion he has also changed the lines by himself and changed my dressing around my neostar (the type of "port" that I have). He really does a nice job. Not only does he handle the infusion he cleans the kitchen, vacuums, does the laundry and all other households chores while I snooze. My IV infusions takes 5 hours so it gives me plenty of time to nap.  I asked today when I can take oral magnesium instead of the IV, maybe in another month we were told.  As much as I hate being on IVs for 5 hours, it does give me a good excuse to rest and I have to admit that I need it.

Every day we get out for an outing. Fresh air and walking are both good for me but boy after a while I am ready to get home to rest. We have eaten out for lunch a few times and tonight we went out for dinner. It does seem good to get out everyday.

All this "down time" has given me plenty of time to think and ponder.  I feel as though the Lord is really teaching me a lesson about prayer which has always mystified me.  I mean if He is sovereign and omnipotent who am I to ask for anything?  Yet there is no other way to explain how well I am doing other than the literally hundreds of people who are praying for me.  Seriously, I have been so lifted up, I will never forget it. Yesterday I sensed God saying to me, "do you get it now?"  I believe I am starting to get it.  I almost hesitate to say this because at any time graft vs. host can rear it's ugly head or other complications.  My worst fear is that her cells didn't engraft and that my diseased cells are the ones multiplying.  I have my first post transplant bone marrow biopsy the week after Thanksgiving and we will be looking for her stem cells.  I feel it's only right to share my fears as well as the praise for healing to be completely honest with all of you.  You can tell me not to worry and really I am not consumed by fear, but I do have fearful, fleeting thoughts that I have to deal with. I know that if any of the fears are realized my Heavenly Father will be there for me and with me as will all of you.

Please don't think of me as being sad and melancholy, because I certainly am not.  I just shake my head and marvel at how I am doing.....I am doing so well!

So there is your update.  Again, I appreciate your prayers, they comfort me greatly.

Grace and Peace to each and everyone of you.....Peggy

Released From the Hospital

What a change 4 days can make! As my counts continued to rise this week leaving the hospital became a reality.  I didn't want to say I was leaving until I actually did, I did not want to "jinx" the whole thing.  Plus I received several transfusion of plasma and red blood cells accompanied by benedryl....lots of benedryl.....so I was asleep for many hours each day.  When I was awake I was pretty sluggish, so no blogging.  Sorry folks for that but I promise I am doing the best I can do.

We are at our apartment, 383 Columbus Drive, Ann Arbor.  Home in Holland would be preferable but we need to be close to the hospital for the next 2 months.  I had started calling my room at the hospital my "cage".  It feels so good to have more room to move.  Plus I slept last night for 8 hours!  When in the hospital my care was close to ICU, with vitals taken every 2 hours around the clock, blood draws at 4am.  Sleep became a series of naps, plus at night I had insomnia quite a bit. I spent plenty of time watching the clock move, minute by minute from 2am to about 5:45 when I would finally drop back to sleep for an hour or more.  So you can imagine how good it was to sleep for 8 hours straight.

The visiting nurse came this afternoon and taught Jen, Kate and Den how to infuse me, and how to care for my neostar (port).  I am still receiving medicine for the fungal infection in my throat and magnesium as the other meds I am taking keeps my body from absorbing magnesium.  The first one will last about 5 more days and the magnesium for quite sometime.  When I am not being infused I am free of the IV pole which I am happy for the freedom.

I still need to be very cautious as to what I can be exposed to.  We were told that I basically have the immune system of a newborn, so don't go anywhere you wouldn't take a new baby.  If you are in the Ann Arbor  area we would love to see you, just please make sure you are completely healthy. My diet is not as restricted as we had thought it would be so that was a pleasant surprise.

I cannot tell you enough how fortunate I feel to be home.  There were some pretty sick people on my floor.  One lady had been in ICU for 6 weeks and then was brought to the BMT unit.  I don't know every one's story but my heart went out to many of them.  I can't help but believe all of your prayers have made a difference.  Please pray for the many who are still there and are still so sick.

I also know I am not out of the woods at this point. Graft vs. Host Disease is the next thing we need to be vigilant about. It can affect my gut, skin or my lungs.  We need to contact the Dr. immediately if we see any sign of gvhd.  Really this is something I will have to watch for the rest of my life.  Presently I take 11 pills in the morning and again at night. Someday it will drop to 2 or so if I stay healthy. It has gone so smoothly I keep wondering when something will happen. I will say the Drs. and nurses kept telling me how well I was doing and attributing it to my otherwise good health.  I would say all of you praying for me too!

Thank you for your love and prayers.

Grace and Peace to all,  Peggy

Day + 13

Good Morning....more good news!  On Day + 13 my ANC (absolute neutrophil count) is 5.8, White Blood Cells are at 6.9!

These numbers are fabulous. I think when the Drs. round today we may discuss my leaving the hospital.  I know I need to be able to swallow pills before I leave. My mouth sores are gone but my throat is raw.  Swallowing anything feels like I am swallowing razor blades, yes it is that sore.  Prayer for the resolution of this would be greatly appreciated. I am starving, food commercials on TV are tantalizing, unfortunately I am currently limited to applesauce and jello..mmmmm.....not!

It was a great weekend with visits from Jen, Beth and Sarah.  It gave Den a much needed break from the routine and monotony of the hospital. He has been at the apartment doing "honey do" things before I come there and join him.

Not much else to report. I was pretty sleepless last night. I am missing fresh air and freedom. I am hoping and praying that this coming weekend I can take a walk in the 60 degree weather. This is the longest I have ever gone without fresh air.

Today is the first day of Competitive Cheer Season!  Good Luck to all the coaches and to all the young athletes who are trying out.  I hope for all of you a great season.....enjoy!  I will be listening and watching from my home.  To my fellow officials, enjoy your season!  I will be honest, I am jealous of all the fun you have ahead of you. Sitting on the sidelines has never been my strong point but for this season that is where I will be.

                                      I am with you and will watch over you wherever you go.
                                      I will meet all your needs according to My glorious riches.
                                            Nothing in all creation will be able to separate you
                                                                        from My Love.


Grace and Peace to you this day.  

Peggy

                                   

Day +11

An exciting update....Mom's ANC this morning is at a .5 and her white blood cell count is at a 1.3.  She's engrafting!!!!  Woo Hoo!!  We were told that because of her myelofibrosis disease she would probably not follow the "normal" engrafting schedule and that she would be delayed by days.  When we got the counts this morning we did a little cheer (imagine that) of celebration.

Mom definitely down plays things and never wants to complain but I would just like to say how strong and tough she is.  Last night was really rough, really rough.  We were hoping that because her white cells went up yesterday that her mouth/throat/intestinal tract would begin to heal.  She developed a lot of mucus and an awful cough that was causing her to choke.  At around 1:30 a.m. the doctor ordered a chest x-ray to see what was going on.  She couldn't get another steroid dose so really she just has to ride this out and use the "magic mouthwash" today.  At around 7 a.m. they gave her morphine through her port and now she is sitting up and she is able to chat a little.  They will do everything they can to keep her comfortable but some things you can't avoid. 

Please be praying that this is the last day of these mouth sores.  They are just awful.  Please pray that her ANC stays at a .5 or goes up tomorrow.  It's crazy to think that just 11 days after her transplant her donor cells are making a home. 

Pray for peace for mom and that she is able to get through this difficult day.  We are very hopeful that she will begin to feel better each day at a time.

Thank you for your constant prayers. 

B.

Day + 10

Blessings Back To All Of You!

I can scarcely believe how many people are praying for me! As I layed in my bed this afternoon and thought of all the people who have let me know that they are praying for me and my family, prayer groups who are praying for me, let's just say I was completely overwhelmed.  To be honest I do not feel worthy of all the support and encouragement but I will take it all.  I keep asking myself why this is going as well as can be expected, I envision this army of prayer warriors. So thank you again.

I should be through the side effects of the chemo in a few more days. My mouth/throat/ear canal are inflamed and covered with sores.  I have had the maximum steroids for the swelling and inflammation. I may have to tough it out for a few days. My white cells did creep up as my morning labs confirmed and once I am no longer neutropenic all the internal blistering should resolve.  I have not lost my hair yet but had quite a handful when I washed it this morning so that should be coming soon. Don't worry, I have a really cute wig, cuter and more manageable than my own hair! At 30 days I will have my first bone marrow biopsy post transplant which will measure her stem cells vs. mine.  Dr. Magineau told me he will view with confidence my 100 day post transplant bone marrow biopsy to say if I have successfully engrafted with her stem cells. Then we will REALLY know I have had a successful transplant.  He seems to be confident that I am passing through a best case scenario but you know me, when I can see the results then I will believe it.  Just another one of my "little" anxieties!

The fact that I am not exhausted from typing 2 paragraphs attest to the fact each day seems to be better.  When I saw the typos from my last post, oh my!  Please know that took every ounce of energy I had.

You have taught me so much in how to express yourself as a godly friend. I am so touched at so many ways you have shown me how to be an encourager. The cards, emails, fb message, photo album of the Swabbing Event, phone calls, on and on........   It  challenges me to be a better friend in the future. Today's devotional tells me that my weakness does not repel my Heavenly Father, a fact that comforts me greatly. I have always had a dance with prayer, It has always been a struggle for me to pray for something I want. If God is sovereign which he is, who am to ask him for something specific?  And here I am, begging you to pray for me, knowing that it is making a difference. Let's just say God has me on a learning curve that I obviously needed. 

Grace and Peace, Peggy

Rough Day

Greetings to all of you,

Sorry not to have updated but basically am in survival mode. The after effects of chemo have really kicked in. First nausea, than intense abdominal pain (GI Tract is inflamed) and then today my tongue developed sores and swelled signifigantly.  Mostly I just try to sleep through it. Yesterday I am pretty sure I slept at least 24 hours! My ANC (white blood cells) have been 0 for 3 days. Today I received my neupogen shot which will help my white blood cells recover. I will get once shot each day. My Dr. at home said Day + 8 would be the hardest and I think it may well have ben.

Now, not to sound pathetic because everything is going beautifly and my Drs. tell me once my immune system builds back up I will feel much better.  When my ANC counts are above 1 we will be talking about leaving the hospital.  Then we will go to our cozy little apartment here in Ann Arbor.

Sorry this sounds so negative because it really isn't, I am doing great, on schedule and they find meds to help me with every side effect. Again my care has been outstanding, everyone is so caring and try to make me as comfortable, which I greatly appreciate.

Your prayers and loving concern help me with healing also. I am going to sign off, this update has taken all the energy I have.  I know this is only temporay and things will get better.  One of those situations I just have to walk through and cannot walk around.

Grace and Peace,  Peggy

Day +4

Friends and Family,

Well I am not sure what my "cocktail" of meds are but we have, at least for the moment, beat back the nausea. Thank you Lord!   I do have quite a bit of lower GI pain, evidently it is quite irritable/inflamed and is spasming.  So now we  are working on a solution for that.  I cannot complain because, overall I am feeling better at this moment than I ever thought I would.  The staff here on 7West are amazing to say the least. The nurses are so kind and attentive. The Doctors are straightforwad and yet kind. They are pleased with my progress. My white blood cells are at 0 so I am now neutropenic, which means my immune system is gone. I only have to wear a mask when I am walking in the hallway, 5 laps = 1 mile!

On day 8 I will begin to get injections (can't remember the name) daily to promote engraftment. Until then my meds fluctuate between one that says "slow down" to the combo of stem cells and the next day says"go ahead and get to know each other".  The technology and research that has gone into this is mind boggling to me.  So far no fevers, no infections.  What we don't know is how much graft vs. host symptons I will have.  I have been getting IV's that greatly enhance my chance of NOT getting a critical stage of GVHS.

I am so blessed to be able to have this opportunity and so blessed to have the love, prayers and support of so many.  Several of you have asked if I am bored, not yet.  It seems every time I put my head on my pillow I am fast asleep.  Sparkling, witty conversation is not my strong point at this moment!

Also a big shout out to those of you who participated in the Bone Marrow Stem Cell Drive last Tuesday night. We added 40 new names to the Registry. I am deeply appreciative of The Lake Michigan Competitive Cheer Officials Association for their sponsorship. What a great group of kind and giving people they are!  I miss them all so much....hopefully I will be back in the groove a year from now. As for right now I am deeply indebted to all of them for caring enough to make this happen.

Well that's about it for right now. Needless to say my life has slowed down to a tortoise's pace but that's about all I have for energy now.

Thank you again for all of your prayers. I firmly believe that your prayers are making a difference.

Grace and Peace,      Peggy

Day +2

Just a little update on day 2.  Mom really struggled with nausea today.  We think they have figured out a new medication regiment to help her.  She had some new pains in her intestinal tract today as well.  The nurses tell us this is expected and a result of the rigorous chemo she received for four days.  A specific prayer request...that the new medications continue to work on mom's new side effects and that she is able to rest well.  Please keep dad in your thoughts and prayers as well.  This is just the beginning of his caregiver role and we need to support him as best we can. 

B.

Happy Birthday - Day 0!

The transplant went so well this afternoon.  Mom did fantastic and all of her vitals have been really good this evening.  We know it's going to get really rough for mom in the next 8 to 10 days but we have been so blessed with a good day today.  Words cannot express our gratitude to mom's donor.  I know we all cannot wait to meet her face to face to tell her thank you in person.  Being in the room today and watching the transplant take place ranks as one of the best feelings I have ever experienced.  The excitement of what I felt was a bit like giving birth and I suppose it's because it was the feeling of LIFE.  Today was my mom's second chance of life - her new birthday- and it was such a celebration! 

This evening we had our second Be The Match swabbing event and last I heard we had at least 40 people come to get swabbed!  Thank you to Lake Michigan Competitive Cheer Officials Association for making this event happen!!

I get to have the night shift with mom.  Please pray that she is able to rest easy and pray that in spite of all the scaring in her marrow that the new stem cells are able to engraft and MULTIPLY!

Grace,
Beth

CELLS ARE HERE!

               The plane carrying moms donor stem cells arrived at U of M last night! The doctors want the stem cells to be fresh so the transplant will happen around 1:00 today! Thank-you for all of your thoughts and prayers. They mean so much to mom and the rest of us. We are all trying to get to the hospital in time!
                              Love, Jen.

Transplant Time Moved Up!

Hello Friends and Family!  Transplant time is now 1:00 this afternoon. Looks like they might have overnighted the stem cells last night.  Don't ask me why. They expected it to take 2 catches and they were able to get it in one.  The girls have all hit the road to get here on time. They thought they had a more leisurely day than they do now.

Sounds like I get a lot of pre-meds along with benedryl which really turns out my lights.

So here we go....feel free to be my prayer warriors today....that my body accepts the cells and that the process goes smoothly.  I probably will be pretty out of it for the next few days......so we shall see how much you hear from me.  I am sure my "staff" will keep you well informed!

Much, much love to all of you.  Peggy

Tomorrow's The Day!

This will be brief because I don't have a lot for you, a lot of energy or a lot of new information.  Today for my "rest day" I received my first of many blood transfusions. Not a big deal, I am appreciating my neostar more and more each day.  Just wished I could get my lovenox shot through it.  They gave me a  significant amount of benedryl with it so of course I snoozed through most of the afternoon. My constant battle with nausea continues.

I said I would update you with times for tomorrow.  The plane with my stem cells is supposed to land at 6:20 pm tomorrow night and so the Dr. is thinking 8:30ish.  That would be a good time to pray if you would have the time.

I had some company today, Carah Hoitenga, is a nursing student here at U of M.  She cheered on Beth's team at HC so was nice to catch up with her today for a few minutes.

Again thank you for your prayers, I love you all.   Peggy

Chemo and then a day of rest

Well friends, I have been better and according to my transplant Dr. I will soon get worse.  The chemo I received will take a few days to really kick in. My day of rest is tomorrow and as far as we know my transplant is on Tuesday afternoon, transplant day is considered day 0, then days plus 2-4 my counts will fall to zero, requiring blood and platelet transfusions.  I did not get a blood transfusion today...I will probably get my first one tomorrow as my hemo stayed up a bit but will continue to drop tomorrow. Dr. Magineau said days +4 - +9 may be my toughest days. Sorry this is so clinical but it is the way it is here at the hospital. These dates are all variable depending on infection and GVHD.

My family has been wonderful with their support. I am not talking much, seems like too much effort. Smells that no one else can smell send me right to my little pink tub.  I feel so bad but not much I can do about it. There are other issues but don't want to TMI all of you to death!

Typing tonight is a little hard on my brain. I am guessing the girls will do this next week.

I close my eyes and picture many of you praying for me. That is easier for me than to pray for myself.  I don't know if that is bad or good but it is what is working for me at the moment. Please keep praying for my donor. I miss so many of you!

My fingers keep hitting the wrong keys so I should go.  Thank you again for all of your love and encouragement!   Love to all of you!   Peggy

Day #3 Chemo

Day #3 of chemo is coming to an end and mom is doing o.k. Not good, not bad, just o.k. As mom has told everyone who has asked, "I've been better".  She is extremely tired and only eating out of necessity. On a positive note, mom has stated that she feels no bone pain and that is a first since April. As I write this I am actually watching her sleep, which she has done a lot of today.  She had another "rough" night last night but, that gives us room for improvement tonight!

Mom's HGB (hemoglobin) is at 8.4 and once it gets 8 or below she will receive her first blood transfusion.  That will probably happen tomorrow. Dr. Maginaw made his rounds today and was pleased with mom's "counts". He is looking at her white blood cells, platelets, absolute neutrophil count, hemoglobin and hematocrit (a % of blood in her blood).  Mom's numbers are all going down and that is what we want. We are still anticipating the transplant to take place on Tuesday the 23rd in the afternoon. 

Sarah

Day 1

Hi friends... Well, day 1 of chemo is coming to an end.  Mom had a rough start to the morning.  She became sick from the sleep meds they gave her last night.  Fortunately, her nurses were awesome and helped her through it.  They will be changing medication for tonight to make sure it doesn't happen again.  

They started prepping her for chemo at 4:30 this morning and she finished around 9:30.  She was able to doze in and out and watched the news while she received it.  Juliet and Dad kept her company today and despite the nausea and extreme bone pain she walked a mile in the transplant hallways!

Thank you for the phone calls, texts, emails and Facebook messages.  We all appreciate it so much.  

Mom is awfully exhausted tonight...today was a long day for her.  Pray she gets some good rest tonight and pray her donor is doing well on her shots.

B.

Let's Get This Started!

Good Afternoon Everyone,

I am writing this from my room in Mott's Hospital.  I have an absolutely gorgeous view from my bed.  All I can see are trees in their various shades of red, yellow and still some green.  My two nurses are total sweethearts. I have the most beautiful family pictures on large canvasses and everyone seems to really enjoy looking at them.

Kate drove to Ann Arbor last night and spent the night with us in our cozy apartment. We were up very early this morning, 5am, to be here at 6:30.  My procedure where they implanted my neostar (port) was at about 7:30am.  I will let you know I visualized some of you praying for me during some of the "ouchier" parts of the procedure and it really helped!  I'm a little sore but I am sure it will heal up in the next few days.  Some people go home for a few days then come back to be hospitalized, I am relieved that I was admitted same day so my nurses are doing the care.  I know Den, the girls and my caregivers will be able to do it but for now we can just let the experts take care of things. It was so nice having Kate with us and the girls have done a great job of scheduling people so that Den can step out for just a bit, or have some companionship.  They tell me I will be doing a LOT of sleeping prior to and for several days after the transplant.  I would imagine the hours could be terribly long for Den so hopefully this will help.

I cannot give Mott's Hospital enough credit for their caring and wonderful staff. Everyone has been so warm and accommodating, what a great place!  They would wait on me hand and foot if I needed them to.

My chemo begins at 5am and will be done by 10am each day. They will fly my blood (and I assume other's) to Seattle everyday to assess my blood levels to avoid any toxicity. No wonder this is such an expensive procedure!  Is it just not so amazing what goes on in this world that we have no idea until it touches our lives?

So for those of you following "Jesus Calling", today was wonderful, what really stood out to me was, "making your thoughts a dialogue with Me" and "Remember the promise of my continual presence".

Tomorrow Juliet will be here and I am looking forward to that.  It is so wonderful that she is only about 30 minutes from here. Then Jen on Friday and Sarah, Saturday and Sunday.  I am pretty sure Beth will be here on Sunday.  By Sunday afternoon my chemo will be done!  Monday is my day of rest then transplant on Tuesday.  If I get a time for the transplant I will let you know.  I believe my donor's shots to stimulate her stem cells begin tomorrow.  Please be praying for her.  What a gift to a complete stranger!

I received a gift today that completely melted my heart. Evidently there has been a Facebook page regarding me and I received a clipboard (which if you were on my teams you would remember the clipboard!) with so many letters from young women whom I have coached.  Honestly!  Thank you Heidi for spearheading such a thoughtful gift.  After reading those I could really have an enlarged ego, however we all know I am perfectly human and imperfect much of the time. What a treasure though, and what a wonderful gift. Again I feel so humbled to have so many people take time for me. How can anyone express their appreciation adequately?

Again I thank you for lifting me up.  What a gift to have the love of so many. I am honored, I am humbled, I am grateful and I am so blessed.  Yes, I will call the love and concern of so many a blessing because it is not something I have ever asked for nor did I ever expect it.  My small group will appreciate that comment because I have difficulty calling many things a "blessing". This would definitely be a blessing!

Love To All,  Peggy

Here is my address for those of you who wanted it.

Peggy Lintemuth
7 West, Room 50, Mott Hospital
1540 East Hospital Drive
Ann Arbor, MI
48109

It's Almost "Go" Time!

Hello Family and Friends!

This post could be overly long and I am going to try to prevent that from happening. So much has happened.

I have been back to U of M twice since I last posted. At my ob/gyn appointment last week the PA thought she noticed an irregularity for which I had an ultrasound on Monday. To tell you that wondering and waiting for the results was excruciating does not even touch what I was feeling. Remember my fight with anxiety? Well let me tell you it was 5 days (and nights) of not much sleep, barely eating.  I spent a lot of time talking with God, trying to understand and to accept His plan for my life. For those of you who advise "just to relax" or "try not to worry", it's just not that easy for me. I plan to keep trying but it is a struggle for me.  And, yes, everything is alright and the transplant is a go!

We met with my transplant Dr. on Monday and he explained that palliative care is an option for me. My prognosis is poor, although predicting the future is never exact he said I could expect to live another 1-2 years with comfort care.  If I were 80 that would, perhaps be a rational choice for me. With transplant the Dr. is seeking "curative" as my end result.  Whether or not that is what happens is up to the Lord and His plan for my life. There is nothing inside of me that is telling me the transplant is not a good option for me. In fact at every step of the way I feel the Lord whispering in my ear, "see Peggy, they made it, you go for it!"

I cannot tell you how your emails and FB messages come at just the right time.  When my spirits sinks, there you are with words of love and encouragement!  Den and I met a couple in the waiting room on Monday.  They are over a year from his transplant and even though they have had some rough spots in their journey they were so excited for us. They viewed his transplant as a miracle and were so excited for my opportunity for life. Their enthusiasm was quite contagious and just what we needed.  You see?  Again and again the Lord speaking to us, through you, encouraging, uplifting, loving and comforting both of us.

Then came yesterday and what a day that was.  Our dear, dear friends Helen and Rob Bell planned a "Dedication" service for me. We had 20 some friends and family here to pray over me.  Our new teaching pastor at Mars annointed me with oil and everyone laid hands on me and prayed. Other friends and family were praying from their homes. Words could never describe what that has done for my soul. I don't think I ever understood what an army of prayer warriors could be before but I do now! I feel so lifted up and carried by all of you.  How does a person ever fully express gratitude and appreciation for so much love and concern?  My heart is so full it is overflowing and I am not sure it will ever stop in my lifetime.  Over and over, again and again, thank you for your love and friendship. I am pretty sure I don't deserve all the love I have been given, but do any of us "deserve"  the love and grace we have been given?  I understand more fully spiritual truths that I had head knowledge of but not always heart knowledge.

Now I am busy getting ready for the trip. You know, the cleaning, the laundry and all that comes with leaving home for 3months.  I am loving every minute of it, just enjoying home and all the comforts.  It will be a great day when we drive back into the driveway come January, God willing!

For those of you in the GR area please don't forget the swabbing event for the National Bone Marrow Registry. It is at Grandville HS 4-7, October 23. It is free unless you desire to make a contribution.  Please know I would never ask any of you to do something that is too hard or dangerous. Educate yourself to know how easy it is to save a life.

Prayer requests?  For my donor, for her health and that she is excited for her part in giving me a second chance at life.
For Den and myself to stay healthy. He seems to feel as though he is getting a cold.  We can't have that.
For our girls, that they are comforted and held up through this process.
That I withstand my chemo.  Please pray for my eating.  That already is a bit of a struggle for me. It has been a life long battle for me to eat when under stress and that does not seem to have changed. 
Last but least that my body accepts my donors stem cells....even more....that my body LOVES her stem cells and is gracious to them!

"But now says the Lord, He who created you, O Jacob, He who created you, O Israel: 'Fear not, for I have redeemed you:
I have called you by name, you are mine. When you pass through the waters, I will be with you;
And through the rivers, they shall not overwhelm you; when you walk through fire, you shall not be burned.
And the flame shall not consume you. For I am the Lord your God, The Holy One of Israel, your Savior"!  Amen and Amen   (thanks Wynn!)

My Love to All,  Peggy

Hi friends!  We are trying to round up some potential numbers for Michigan Blood for our October 23 swabbing event at Grandville High School.  Please email us at peggylintemuthfamily@gmail.com to let us know if you will be there.  Please also indicate how many of your family and friends are coming with you.  We hope to see you there if you have not already ordered a kit from BeTheMatch.  You must be between the ages of 18-44.  If you are over 44 please encourage someone else to come in your place :)

If you haven't already noticed, the day of our swabbing event is the day of mom's transplant.  Pretty neat if I do say so myself!  Mom spent all day Thursday in Ann Arbor meeting with various doctors and having another bone marrow biopsy.  She heads back on Monday to meet with her transplant doctor to finalize her protocol.  If there are any changes we will be sure to let you know.  Some days are more of a struggle than others but she is getting through it.

Enjoy this very fall weekend.
Beth

A Long Day In Ann Arbor

We left the house (in Holland) before 7 on Weds. morning in order to be on time for our first appointment at 10am.  My first appointment was an echocardiogram of my heart. Those results should be in today but I am expecting it to be fine or at least good enough. There! I am not allowing anxiety to rule my thoughts and that my friends, is a very hard job.

Next we headed to the Lab for blood work.  I could not understand why I had to wait so long before they called me back.  When I saw the 21 vials on the table I understood!  My lab tech was wonderful, I never even felt the poke and we were done in 5 minutes with just the one poke.  She had thought we might have to switch it up in the middle but for once my body cooperated and it was pretty easy.  For those of you who don't know, I have a deep, deep aversion to needles.  I can clean any body fluid up, I have taken care of injuries, sick people etc. no problem. Needles are a different story for me, I go weak kneed at the thought of them.  Doesn't that just make me a great candidate for what lies ahead? I am just going to have to get over this.  I have made up my mind that I will so you know, I will!

After that pleasant experience we had a "Nurse Teach" session with Kim, my pre transplant Nurse Coordinator.  We(Den, Jen, Sarah, Kate, Beth and Juliet) spent 2 hours going over all the details for while I am in the hospital. We talked about the chemo drugs I will receive, possible side effects, graft vs. host disease and what might happen with that. Kim had a calendar for each of us outlining each day and what happens that day.  It was a good road map for each of us.  We also had a tour of the transplant unit and were able to go into one of the empty rooms.  Everything is very new and beautifully done.  The rooms are spacious and nicely furnished.  As we stood there I heard the girls saying what they were going to do with it to make it more "homey".  My perspective was a bit different than their's.  I saw it all as confining.  When I think about that I realize that is my perspective as a relatively healthy person. May we be so blessed in that is how I will feel a few weeks into the process.  That will mean that I am doing well, not just in my bed, and am wanting "out". It will mean all of my side effects are relatively minor and am getting back to myself.  Many of you have asked about visiting me.  That will completely depend upon how I am doing. I could be critically ill to doing well and there just is not a way to predict how I will do.  Graft vs. host disease is the biggest concern.  I don't know how my body will react to being invaded by someone else's stem cells.  We want some reaction, because then we know the graft is taking, however if my organs become involved it can be life threatening.  Secondly, the concern is infection as my body will have lost all of it's immunities, not just to what someone else might expose me to, but also to what exists within my body.  That is what the 21 vials were about, figuring out what viruses and bacteria already exist within my body.  Did you know you might have up to 80 viruses and bacteria in your body that your immune system co-exists with?

Then I had to hustle across 3 hospitals (they are all interconnected) to have my pulmonary function test.  I had been quite worried about this one as they had told me at Spectrum I had necrotic (dead) tissue in my lung from the damage from the blood clot.  I think all my walking has paid off.  The test itself was easy, not challenging at all.  The tech did tell me I did great!  So that made me feel pretty good.  Last of all was my chest x-ray which is standard procedure for transplant candidates.  Whew! That was quite a day!

After a nice late lunch at Weber's in Ann Arbor we were able to see our apartment.  Oh yes, I forgot to tell you that on Tuesday I had a call that said our apartment, we had previously rented, had been flooded from the upstairs apartment and needed a complete gut job which will take months not days.  They were able able to find us another one, it is second floor which might be challenging for me, especially at first. Kim felt that it should be fine so we are going to go with that.  I think physically it might be tough for me but I view that as a good thing.  After all my walks in the neighborhood are getting easier so that means progress right?  When I can go up those stairs without too much effort we know I am getting close to coming home to Holland.  When we are in the apartment we can expect to return to the hospital about 3x a week.  Hopefully no emergency trips but if we have to we are 4.2 miles from the hospital, which seems very important to Den. When we are in the apartment I will need a "caretaker" with me at all times. I have my wonderful family and 4 friends who will be trained in caring for me.  For some people having a caretaker is the hardest part. Den and I are so blessed with our family and friends.  Believe me, we don't take that for granted for a single second. The girls are relieved to know we have "back-up" for those times when everyone gets sick at the same time.  You just know that is going to happen!.

So that's it folks!  Needless to say home and our own bed looked pretty good by the time we got home on Weds. night.  Next Thursday is my next time to go back and Ann Arbor better look out because Jane, Lynette and I are road tripping it!  It should be a fun day and why not?  I am getting "put out" for my bone marrow biopsy and Jane has threatened to put me in the back seat and ask me embarassing questions that I would probably answer due to all the drugs in my system!  And you know she will!  I so appreciate them giving Den a day off , especially since we have to go back 4 days later. 

Again, how do I ever thank all of you for your prayers and support?  We have had meals brought to us on just the right days when I am not able to do it for us. I loved yesterday's devotion. "Go gently through this day",  I love that phrase, just love it.  When I think that way everything seems endurable.  You may use it if you like, especially if you feel you are having a tough day. 

Go "Gently" my dear friends.  Grace and Peace to all of us.  Peggy

More details and information

Well the reality of a stem cell transplant is starting to settle in.  I will be admitted to the hospital one month from tomorrow.  Many of you have asked what is going to happen.  I will have my neostar (port) put in probably the day of my admission.  They are going to take me off coumadin 10-12 days before, will go back to the lovanox shots at that time.  My chemo, or conditioning will begin the next day and will go for 4 days, then a day of rest and then the transplant.  The transplant itself will be somewhat anti-climatic as it is about a 15 minute IV transfusion.  Then we wait and at that point everyone is different in how their bodies react.  I will be on massive doses of antibiotics, blood products and anything else they deem necessary to sustain me.

The entire family came to Holland this weekend for family pictures and just some really good "together" time.  The girls sat down and figured out to the best of their ability a schedule for while I am in the hospital.  It does my heart good to know they will be there to support and relieve Den, I know this may be harder for him than it is for me. He doesn't say much but I know he is always thinking.  We will get through this.  Please keep praying for my donor.  I cannot express adequately my gratitude to her.  Even though it is a fairly painless procedure to be a  donor it is certainly an interruption to her schedule and requires commitment.  To do this for a complete stranger is just such a gift!  My prayer is that the Lord will bless her greatly, I don't know what her heart's desires are but am praying that my Heavenly Father meets those desires.

Many of you have asked if you can contribute monetarily to our "swabbing event" and the answer to that is "yes".  Because so many of the individuals are college age Den and I do not expect them to pay to be swabbed.  The judging association I belong to, LMCCOA, is making a generous contribution and so is our "20-20" giving group that we have been a part of.   Still there will be expenses to cover for the individuals who will come in to be swabbed.  Please send your donation to Michigan Blood-Stem Cell Programs,  Attn:Kona Dominick 1036 Fuller N.E. P.O. Box 1704, Grand Rapids, Mich. 49501-1704.  Please note on your check that it goes to the Peggy Lintemuth Fund for the October 23 Swabbing Event at Grandville High School.  That information should be sufficient and I thank you in advance.  My hope and prayer is that we will provide a donor for someone else.

I wish there were more ways we could educate people to the need for more people on the Bone Marrow/Stem Cell Registry.  So many people are willing to be on it once they understand what it means and how easy it is to participate. They (the medical community) are using stem cell transplantation to treat more and more diseases.  Just this past week I read where it will be used to treat ALS (Lou Gehrig's disease) and Alzheimer's disease.  It truly is a medical miracle and you will be reading more and more about it.  If you know of someone between the ages of 18 and 44 please take the time to educate them and sent them to BeTheMatch.com to have a kit sent to their home, free of charge of course.

This is probably my last week of freedom, as the following week I will be in Ann Arbor for testing and appointments. I'm a little nervous about it, hopefully there won't be a reason to not proceed with the transplant, that my little blood clot episode did not do any major damage.  As I said before I am tryng to walk at least 2 miles a day to improve my circulation, challenge my heart and lungs. I am doing everything I can to make myself as healthy as possible! As you can see my anxiety rears it's ugly head from time to time!

"You will not find my peace by engaging in excessive planning, attempting to control what will happen to you in the future. I did not design the human mind to figure out the future. That is beyond your capability. Commit everything to my care." "Jesus Calling" by Sarah Young.

Grace and Peace to you my friends.  Peggy

We have a donor and dates!

It's all coming together!  My donor went in for her consultation today and has agreed to move forward with the collection of her stem cells.  How refreshing and encouraging that in today's world someone is willing to be inconvenienced to not just "help" someone but to stand in the gap to save a life!  I, along with many of you have been praying for her, that she would be more than comfortable with the process and that she would feel the gratitude we have for her.  We do not know where she lives or any other details other than she is 47yrs. old, has had one pregnancy and has been on the Registry since 1994.  I am hoping to thank her in person a year from now.

I will be back and forth from Ann Arbor several times for extensive testing between now and Oct.17 when I am admitted to the hospital.  Her stem cells will be harvested on Oct. 22 and 23.  My transplant will be on Oct. 23 unless the stem cells get there so late in the day we have it on Oct. 24.  We have an apartment rented from Oct. 8 until it's time to go home to Holland in January. It's a 2 bedroom, 2 bath fully furnished apartment about 10 minutes from the hospital.  Dennis insisted on close proximity to the hospital, makes him a bit less nervous.

After all that we have been through up to this point it seems good to know exactly WHEN things are going to happen.  My assignment of staying healthy the last time I talked with the transplant Dr....well let's just say I have failed miserably. I am walking now and working hard to get some stamina back, let alone rejuvenate my circulatory system.

Jesus Calling....."Bring your moments to Me, and I will fill them with vibrant joy".  So when I lean toward anxiety I need to remember this.  Please, by all means keep praying, I feel them strongly when I slide downhill a bit. We have so much to be grateful for, I survived a life-threatening blood clot, a few other minor infections and now a donor so willing to help me.  I need to focus on the thank yous and not the "what ifs".

Grace and Peace to everyone of you,  Peggy

Wednesday, September 5

We have been waiting for mom's INR counts to rise (2.0-3.0) so that she can come home.  This morning her counts came back at 1.8.  With these levels, the doctors gave her approval to come home!  Thijs, Luci and I went up to Spectrum to get her this afternoon.  Mom had everything packed and was very ready to go.

Overall, she is functioning so much better than the days leading up to her hospitalization.  Determining the right levels for her pain management have been key to finding her relief.  She will now be doing injections twice daily to continue to thin her blood and blood draws every 2 days to regulate her levels.

Mom's spirit and attitude continue to be upbeat.  She is very excited about her 45th high school reunion this weekend and is very excited to catch up with so many friends.

Thank you again for all of your prayers, Kate

Friday

August 31

Grow strong in your weakness.  Some of My children I've gifted with abundant strength and stamina.  Others, like, you have received the gift of frailty.  Your fragility is not a punishment, nor does it indicate lack of faith.  On the contrary, weak ones like you must live by faith, depending on Me to get you through the day.  I am developing your ability to trust Me, to lean on Me, rather than on your understanding.  Your natural preference is to plan out your day, knowing what will happen when.  My preference is for you to depend on Me continually, trusting Me to guide you and strengthen you as needed. This is how you grow strong in your weakness.

Jesus Calling
(Sarah Young)

We all read this devotional on Friday morning.  My mom gave us Jesus Calling so that wherever we are, we are all reading the same thing every day.


Friday morning, mom was woken up by an intense pain in her right side.  This pain was something new, not her normal bone pain, and caused her to have some difficulty taking deep breaths.  She also pointed out that her left leg was slightly larger than her right leg.  She proceeded to call her hematologist to see if they could check her out and they were unable to get her in.  We had planned to go Grand Rapids to get her head wraps and scarves so we decided to go with the original plan and do a little "chemo" shopping.   As we were heading to the shop we noticed that the Cancer and Hematology office was located right next door so we checked it out to see if another doctor could see her.  Again, they were booked and advised us to go to the emergency room if her symptoms were of concern.

With a lot of back and forth we both had a feeling that she should be seen at the ER.  Mom knew that if it was dad or one of us girls that she would make us go so she obliged and did the same for herself.

Mom was admitted to Spectrum Hospital on Friday afternoon after a leg ultrasound and chest cat scan confirmed a bi-lateral pulmonary embolism.  Mom has a DVT, which is known as deep vein thrombosis.  This blood clot is from her ankle to just above her knee.  The blood clot broke off and traveled through her heart and settled into both her lungs.  Mom is very lucky and we are so thankful that she didn't try to ride out the pain.  She trusted her gut and what gut instinct she has!  We have all learned a lot through this process.

They have mom on a heparin drip and are drawing her blood ever six hours to check her coagulation levels.  We will know more in the next few days, but right now things are looking good and her levels are at therapeutic stage.  Morphine is helping to control her bone pain. 

Mom is currently resting, Sarah is sleeping next to her and Jen is reading the latest People :)  Dad and Kate are en route from the lake.  Right now mom needs sleep and everyone is taking such great care of her and for that we are thankful.

We are unsure of how this will impact the now 5 week-ish away stem cell transplant.  The Spectrum medical staff will consult with the U of M transplant team after the holiday weekend.  For now, we are enjoying some quality time and I know Jen and Sarah liked "spooning/sleeping" in a cot at the end of mom's bed last night.

Thank you for your continued prayers for mom and her donor.  We will keep you posted on mom's progress at the hospital this week.  This week we are depending on Him, trusting Him and asking for His strength.

Beth

Stem Cell Transplant on the Horizon

Mom had her appointment at U of M today with her transplant doctor.  Based on a number of factors, including looking over her lab results and listening to her describe the clinical progression of her disease, the doctor feels that it is time for her stem cell transplant.  We do not have a hard date set; however, we are looking at about 6 weeks from now.

What will happen during those 6 weeks?  U of M will notify the donor this week.  The donor must go through an informational session, agree to donate, get a physical, follow the medicinal protocol and finally donate.  Concurrently, mom will undergo her own battery of tests, including another bone marrow biopsy about 2 weeks before her transplant. As caregivers, we will attend a Nurse Teaching Session.  Once all the stars align, and both mom and her donor stay healthy, she will have her central line inserted just before she is admitted.  On admission, she will undergo 4 days of full chemo, 1 day of rest and then the transplant.

It looks like mom and dad have located short term housing near the hospital, which will be used as the "base of operations" during mom's recovery.

As one might imagine, this process is beginning to feel very real.  Thank you for your prayers, love and support, all of which are felt.  Together, we will get through this!

Love,

Sarah

Cancer Survivor Erika Turner Meets Donor Christopher Magoon That Saved Her Life on 'GMA' | Video - ABC News

Cancer Survivor Erika Turner Meets Donor Christopher Magoon That Saved Her Life on 'GMA' | Video - ABC News

Our first swabbing event was a success!  Thanks to Dr. Stout and Gordon Dentistry for hosting the blood drive and swabbing event.  Thanks to all of our friends for taking the first step to save a life.  It was really neat to be able to help educate people about Bone Marrow/Stem Cell transplants....spread the word :)

So many of you ask how mom is doing, she is doing ok.  On good days she rests a lot and we may get out and about for a bit.  She had a massage yesterday and she really enjoyed it.  On not so good days she is in bed all day and spikes fevers.  To relieve some of her discomfort and pain we rub her legs and do cold compresses.  I think we are all interested to see what her transplant doctor will say on Monday.  Again, please be praying for mom's donor.  We are not sure if she knows she is "the match" yet.  Pray that she is ready and willing.

I, like my mom, love to watch the morning news.  This morning Robin Roberts interviewed a transplant survivor and her donor who met for the first time.  Safe to say I shed a few tears.

Mark your calendars for October 23 at Grandville High School for our next swabbing event!  You must be between the age of 18-44 to be swabbed.

Much love,
Beth

43 years

Happy Anniversary, Mom and Dad.  We love you!  xoxo.

Lots of ups and downs!

Hello to all my wonderful friends and family,

We saw my Dr. here in Holland yesterday and evidently the fevers are part of the disease.  Something about the diseased stem cells interacting with other cells and hormones are produced which cause the fevers.  I didn't quite understand it all but now I understand why Dr. Magineau asked me back in June if I was experiencing fevers.  Just had one that got up to 101.8 and let me tell you they take something out of me!  Dr. Batts (Holland) ran a battery of blood test and urinalysis just to make sure we weren't overlooking anything.  There is no rhyme or reason to them, they just happen pretty randomly.

Beth has been with me since I got home from Piatt.  Kate fixed dinner last night and again tonight.  They have all taken such good care of me.  It's a bit like having 4 moms!!

As of right now my appointment at U of M is Monday, August 27.  It would not surprise me if it is "Go" time.  It would still take close to a month, my donor needs a physical, her stem cells need to be stimulated, so it doesn't happen overnight.

Many of you  know I have trouble praying for specifics but I am busting out of my spiritual box. Please pray my donor has peace, that she is healthy and that the donating process is as comfortable as all the literature says it is.  I would love to meet her in 2 years and thank her for giving me a chance at life.

I have a peace about the transplant, can't really explain it but I do have peace.  The girls will keep in touch with all of you.

On the 27th we are going to look at some apts. in the Ann Arbor area.  Hopefully something nice will be available and affordable.

Again your messages, cards etc really lift me up.

The Holland Swabbing Event is a go.  We have the required amount of people. Dr. Stout and Gordon have been extremely generous with their donations for it.

The Grandville High School  Swabbing Event will be October 23, 4-7 p.m.  Usually it costs $52 to process one person but Michigan Blood will only be charging $25 per person. We have donations  that will be made and the remainder Dennis and I will pay for.  If you are interested in donating any amount of money it would be appreciated. I want it to be free for young people....I know how many of you are on such a tight budget.  There is a new stipulation, effective Oct.1, that potential donors must be between the ages of 18 and 44.  We know younger stem cells are more effective and they are trying to get the Bone Marrow Registry to reflect that.  Also - men are needed! So if you have a husband/boyfriend/friend that you can get to come please encourage them to do so.  Men, especially, do better with male stem cells so would love to see some guys there.  They do keep people on the list until they are 60. My donor is 47 and Kim said that is not an issue for me.

Seems appropriate that the woman who loves a good sale is able to offer a BOGO sale for stem cell donation! Needless to say I have not done much shopping for the last few months...maybe someday again?

I love you all and the peace that I feel has to be a result of all of your prayers. When I have some news I will let you know.

Grace and Peace to you,  Peggy

Just when you think...

Just when you think you may have a while, mom's counts had plateaued and she could control her pain with Ibuprofen and Tylenol, her symptoms quickly became more aggressive.  Last week she spiked a fever of 108 (and yes it was 108 we took her temp with two different thermometers because we thought the "cottage" thermometer might be broken).  It did break after about 30-40 minutes and looking back was an indicator of things to come.  Since that time, she has had little fevers come and go not higher than 103.  Mom is strong but her pain has surpassed a tolerable level and she is now on a prescription of Morphine Sulfate.

Her second possible perfect match is not as "perfect" has the first.  Part of that equation was the possible donor was two years older and had two pregnancies.  At this point it looks like we will go with the first donor.  We are beyond fortunate that her "best match" quickly responded.  If you are not already on the registry please consider attending one of our swabbing events or order your swabbing kit online.  I received mine in the mail yesterday.

Like she has stated in the past we have had a wonderful summer at the cottage but it is time for her to come home.  She will have a doctor's appointment early next week with her doctor in Holland and then is scheduling an appointment at U of M for the following week.

It feels a little like time is slipping by too fast and our lazy days of summer have come to an abrupt halt.  Mom's body has weakened....her spirit has not!  As mom puts it "I am just ready to get this nasty disease out of me and start living again!"

Thanks for keeping us in your thoughts and prayers.

Sarah

I Can Hardly Believe It!

Well dear family and friends, the call I have been waiting for came this afternoon and I have a potential match!  She is considered an 8 out of 8 (or as I like to say a 9.8)  She does not match me at the DQ allele level which is debatable for HLA testing.  Kim (U of M Nurse Coordinator) said that this is the only permissible mismatch and as good as a 10.  There is no increased risk of Graft vs. Host, graft rejection and disease relapse.  Now please understand these are all still possibilities, I know this is a risky procedure with no guaranteed outcomes, however now I have a fighting chance of beating this awful disease.  AND the second possible perfect donor is being tested today and they (U of M) will have the blood in 2 days. If she is a 10 out of 10, all other things being equal we would go with her.

The current match is another female (which is good) and has only had one pregnancy (which also is a factor) and is 47yrs. old.  She is the one who registered in 1994...good for her! 

Both of these donors would exceed the 9 out of 10's because they mismatch me at more critical HLA levels.

I cannot tell you the joy I experienced when Kim called me.  Do you know that 50% of the people waiting for this phone call receive the opposite news?  Devastating...this just makes me more determined than ever that we HAVE to grow the Bone Marrow Registry and educate more people.  PLEASE consider one of our swabbing events (I will get the dates on the next post) or send for a kit via bethematch.org.  Both will be free, you make make a contribution if you would like, the money goes directly to the Bone Marrow Registry.  You actually have a chance to save a life, how exciting would that be?  Of all that you have ever accomplished in your life, where would that rank?  It only takes 4 swabs, a vial of blood and then 1-2 hours giving your blood, you are back to normal in 1-2 days.  It is so easy in 2012 that it is unbelievable.  If you are healthy there is no excuse for not registering.

Kim told us that in Germany all young people are swabbed, their registry is so efficient they (the USA) hear from them in 1-2 days and blood is received promptly.  So they are not just propping up the Euro but are also saving lives internationally everyday!  We here in the USA should be as prompt and efficient as the Germans!  Don't be lazy thinkers and procrastinate, don't think you are too busy...seriously too busy to save a life?

So it looks like this is really going to happen, the question is timing. Some people wait until they are very sick, others go in at an intermediate stage, strong and healthy.  I am tending towards the second, if I am going to go for this I want to be healthy and strong.  I passed all of my tests with flying colors, she said I am above 100% healthy.  Healthy people tolerate the accompanying side effects better.When the second potential perfect donor is tested we will go in for a consult and consider a date.

How can I ever thank all of you enough for your prayers, messages and love?  My heart is full and yes, the tears are flowing!

Grace and Peace,  Peggy

Organ Testing and Donor Processing

Yesterday was a long day.  We started at 7:20 am with my echo cardiogram, then on to our Social Work consultation, then lung testing.  Good news is the lab tech who tested my lungs said I was far above normal for a woman of "my age".  Unless there is a big surprise regarding my heart I think we are in the clear for the organ function tests.

In regards to the donor process, Kate is not a match for me. 3 other possible 9 out of 10's have come in for me.  So we have 5 currently being processed. 1, possible 10 out of 10 and 4, possible 9 out of 10.  All are unrelated donors from the Bone Marrow Registry.  We still have not heard from the other possible 10 out of 10 here in the US and the International Registry that has another possible match for me is very slow and may take 2-3 months to respond.  This part of the wait is agonizing and why you must take this seriously if you are a donor.  If you are someone's perfect, or near perfect match you MUST be ready to respond. My life and future health depends on someone else taking this to heart and understanding how important their decision is.

We had a long conversation with Kim, my Nurse Coordinator, on all of the possible scenarios with a Bone Marrow/Stem Cell Transplant.  The honest assessment is that there are no guarantees of a perfect result.  There was some brutal honesty regarding possible outcomes, especially with a mismatched unrelated donor if we have to go that route.  I don't really have much of a choice when it comes down to it, I am going to have to go with the best match possible for me and leave the result in God's hands.  There are some people who are not willing to take the risk and choose not to have the transplant.  I am not going to be one of them.  When the time comes I will go for it, knowing that my Redeemer has my future and whatever the result is I will be content.  Now if this sounds negative please know that there can be amazing results and I will be content with also.  It's just that I have so much information to process right now that my head is spinning!

I see my hematologist on Monday morning and will see what he has to say.  I am thinking when all of the samples have been processed and we know what my donor selection is we will consult with the transplant Dr. at U of M, perhaps end of August or first of September. I am hoping for some good guidance at that point although it is always my decision.

So friends that is where we are at.  If my perfect donor's blood work comes through with flying colors next week I will surely let you know.  It is going to be a perfect weekend in Holland (I am home for 6 days) and I intend to visit all of my favorite restaurants.

Thank you for all of your prayers, cards and emails.  They really do lift me up.

Grace and Peace, Peggy

Hopeful

In an effort to update all of you I do have a bit of news.  I spoke with my Nurse Coordinator's secretary this morning to set up my appointments for next week.  Next Thursday we start at 7:30 am with all of my organ testing.  The somewhat unexpected news (at least for me) is that U of M is expecting a blood sample next week from one of my potential donors from the Public Registry.  What does that mean?  That means one of the two possible matches for me has answered the call and is willing to be tested.  We are still a long ways from finding a "match" but it is a hopeful step in the right direction. I don't have any other information regarding the other donor.  Kim, my Nurse Coordinator is on vacation this week, so I will get more details from her next week.

In other news, the sun is shining in the UP with temps in the high 70's.  I have already walked the lake this morning with Jen, Sarah and Beth. We are going to see if we have some young skiers this afternoon.  I observe from either the deck or the cottage.  The sun does not seem to be my friend this summer, it really drains me.

Kate and the boys have returned to Holland.  Kate had her blood work done yesterday to see if she is a possible 9 out of 10 for me. All blood work takes about 10 days at the U of M Lab. It would be nice to have a good 9 out of 10 in our pocket, time will tell.  We were told it would be one in a million for one of the girls to be a donor yet Den and I had enough antigens alike to make it worth testing them.

I spoke with my dentist's office yesterday and we are going to host a HLA swabbing event at Dr. Stout and Dr. Gordon's office in Holland,  August 21 from 2-6. They are sponsoring a blood drive also. We need at least 20 people for Michigan Blood to come.  If you are able and willing to come please email me at peggylintemuthfamily@gmail.com to let us know so that we can get a count started.You can give blood and get swabbed in one stop! We are also looking at a later date in October in the Grandville area. Statistically 1 out of 540 people get called for a match.  My goal is to get at least 500 people tested so that we can know (statistically speaking) we have helped one other person find their match.That's a healthy goal and I will need your help to reach it. PLEASE contact me at peggylintemuthfamily@gmail.com if you can make the August 21 date.

Again...each day is a blessing and His grace is sufficient.

Grace and Peace, Peggy

It's Been A Good Day!

Good Evening My Friends,

Today has been an eventful day in many ways.  I didn't want to post anything until I knew things had been finalized.  My Nurse Coordinator at UofM called me today and let me know that my insurance had FINALLY placed me in network with the University of Michigan Transplant Center. What that means is that I will move to the next step with an appointment at the end of the month to assess my heart and lung function.  It also means they will move forward with contacting my potential donors. All I know is that it is two women in the USA.  One registered in 1994 and was contacted in 2006 as a potential donor, came in and had her blood drawn.  She was released back into the Public Registry without donating.  The other one registered last October.  It appears as though the second one may match me at a higher level...we shall see.  Here's hoping and praying that they will both respond and will be willing to be further tested.  They will also pursue the International Donor.  That potential match has information at a much lower level but is still a potential.  It's crazy to think that out of 20 million people there are only 3 potential matches, but too many people have none!

So clearly those are some big hurdles, yet at the same time the realization that this is probably going to happen hit me hard for a few moments.  We all have our journeys through life and it looks as though a Stem Cell Transplant is going to be part of mine. I don't know how much you know about them but for a person who doesn't care for suspense the outcomes can vary greatly.  I have to trust that my Redeemer has me in His hand.

I have always believed that the circumstances in our lives dictate what we should do next. My understanding of God's Will in my life is to do the next thing to the best of my ability, whatever the next thing is.  For much of my life that has meant caring for my children, cleaning, cooking,being a good wife,  coaching to the best of my ability, being the best friend I could be to many of you, then being a good grandma and giving back to a sport that has helped me grow and has defined so many areas of my life.

Now my eyes have been opened to the need to grow the Bone Marrow Registry.  There is something wrong that in a country of almost 400 million people there are only 14 million in the US Public Registry!  I know the greatest need is to educate people and I am hoping that each of you will help me in this endeavor.  If you haven't already taken the time to view the videos linked to this blog please do so.  Last night I googled stem cell transplants and found a section regarding donors and their stories...talk about inspiration! After a certain amount of time if both parties agree they can meet each other. How many of us would stand outside of a burning building and not attempt to help someone inside?  Would you walk past someone injured?  Each one of us would help to the best of our ability and yet many of you have the ability to save someone's life, what an amazing opportunity at such a small cost to you.  I hope many of you join us in an effort to grow the Public Registry.  You may contact BeTheMatch.com for a swabbing kit at no cost to you.  We will be hosting a swabbing event in October, in the GR area. Time and date TBA.  Again you may make a donation if you wish but if not the cost of the event will be covered.

I am not asking for myself.  When I spoke to my Nurse Coordinator she said the reality of someone coming into the registry and being a match for me is minimal.  I just know there is someone else out there that we are to give a second chance to.  I don't know if it is someone's child, mother, father or grandparent but I know that person is there and needs our help.  I also know that I can't do this alone and that I need your help.  If you know me you know I prefer to do things on my own however this will be more successful as a team effort.  I thank you in advance for your efforts.  I will not be shy about letting you know exactly how and when you can help!

I hope your summer is going as wonderful as mine.  We are having lots of family time at the cottage and the weather in the UP has been spectacular. I am not tubing or 4wheeling this summer, I do take naps which I have never done in the past.  I am able to take lengthy walks each evening with my daughters.  At the moment I am sporting quite the shiner as one of my grandchildren accidentally bumped me in the eye! I am on my second book.  Life is good!  I have always struggled with the concept of "blessings" and believe they are not something we can achieve for ourselves.  I define a blessing as the deepest desire of our heart that we cannot fulfill on our own.  For me, my family is my greatest blessing and they are really rising to the occasion.

I will update again when we get more information.  Thanks for listening...thanks for your many messages. Thanks for being such great friends.  

Grace and Peace,  Peggy

Donor Update

We received the call we have been waiting for.  Here are the facts...

• Gary, mom's brother, is not a match.
• Out of the 20 million people in the National and International bone marrow bank there are two people in the United States that may be a perfect stem cell match for mom.  One person in another country may also be a perfect match, 10 out of 10.
• Insurance has not yet approved U of M to contact these three people.  We are hoping they will grant approval within the day so that mom's social worker can locate these individuals.
• When we went to U of M they typed Dad to see if he and mom had similar enough antigens to test the girls.  Crazy enough, they do.  This means that Jen, Sarah and Kate will be tested if the three perfect matches do not pan out.  There is a chance that one of them could be a 9 out of 10.  We know that they will not be a 10 out of 10, but there is a chance they could be a 9 out of 10.
• We sent my typing (Beth) to a private lab in Seattle when mom was diagnosed at the beginning of June because Chad and I were going through another round of IVF.  We found out yesterday that I am not a match to mom.
• In addition to the three people that could be a perfect match there are an additional six people in the United States that could be a 9 out of 10.  If Jen, Sarah and Kate are a 9 out of 10 they will use their stem cells rather than that of a stranger.

Is this a best case scenario?  No.  It is a worst case scenario?  No.  Please pray that insurance approves the donor search.  Please pray that the three individuals who could be mom's perfect match are willing to do what it takes to donate. 

Once we get the approval from insurance Mom will head to U of M to have her organ functioning tests completed as well as another round of blood work.  Before we left for the cottage mom's blood work stabilized, we were told this could happen.  Hopefully this will be the case again and we have time to search for her donor.

We are soaking in lots of family time, crazy cousin time and the most perfect weather at the lake.

Thank you to all of our family and friends for your support.  We love you all.  If you haven't yet gone online to Be The Match, do it today!  We ordered Chad's kit and it was delivered to our house within a couple of days.  It's so easy!

Beth