Posted by: Sandy Forrest on Mon, Nov 24, 2014
The information about Carl as we receive it
12/25/14 from Kim
Could it be that it has been a whole week since we have been home? We are so grateful!! The three of us (Carl, Anna and I) are snuggled with our blankets in the living room admiring the snow outside, definitely a beautiful scene!
Carl is progressing well with his continued treatments. We have had 3 days off from the clinic since we have learned how to do the infusions at home and how to maintain the central catheter line. Woah! Skills we never thought we would acquire... So far, the numbers have been inching in the right directions. We did receive some information from the bone marrow biopsy which are pretty complicated and confusing, but I will try to give the "Cliff notes" version if I can. They found very few cells in the bone marrow which was not great news. They usually like to see it 30-40% filled with blood making cells by now. Somehow the cells that were in there were Carl's cells, not Karen's, which is a bit of a mystery. One of the obstacles with Carl's disease is that his bone marrow has filled in with bone and scar tissue, leaving only 5% of the space left to make blood cells. The hope for Carl was that maybe he could make blood cells in different organs other than the bone marrow... It was one of the discoveries they had hoped to make in the transplant field with Carl's case. We found out on Tuesday that he is definnitely making blood cells from somewhere, they just aren't sure where. At Day 100 they will do anotherr biopsy and they hope to see more cells in the bone marrow to make blood. It could take a year or more for that to happen completely. Needless to say we were very excited to hear that those cells are making blood somewhere!
The human body is a remarkable creation and our God is an amazing designer. What a wonderful time of year to be literally "Home for Christmas". We continue to pray for all who are in need of blessings and the healing of our great and mighty physician. We are so grateful for the gift of family and friends that we have in all of you! Merry Christmas to you and God bless!
Message from Carl that the visit today was uneventful.
Update 12/17/14 at 6:30 pm from Carl
They are home safe and sound with a return appointment at the U tomorrow at 7:30.
Update 12/17/14 1:08 pm from Kim
Day 30 sounds like a great day to talk about exit strategy! We are working on the plan right now. It should be sometime later afternoon. I suppose you would know that we did the ugly cry with our dear nurse. We have been blessed to have such a wonderful staff of people working on our behalf. Carl's care has been incredible! We finish out the next 100 days coming to the clinic everyday to get whatever blood products and medicines he will need. Then he will be back to work somewhat, AND able to drive again! Yay! Baby steps to freedom!
It is amaziing when we reflect back to last Christmas when Carl was given the diagnosis which is now known as Mast Cell Leukemia. At that tiime, he was given at the most 18 months to live. with there being no treatment, no medication or cure; this transplant was his only hope. On Monday, November 24, he became the 13th person in the world to have ever had it done, but more importantly, today he becomes the 3rd to have survived it! There are no words to express how we feel about this second chance. (The power of prayer??!!)
We are overwhelmed by the miracles we have been part of over the past year. The gift of life, the deepening of our faith, and a never ending appreciation for our dear family and friends. The glory goes to God and humble thanks to all of you! God bless and we'll see you on the "outside."
12/17/14 from Kim and Carl (about 10:30 am)
I'LL BE HOME FOR CHRISTMAS!! Actually, before - like today!!
12/16/14 from Kim
Today felt like the most predictable and uneventful day that we have ever had here, and we have loved every minute of it! Carl had a new drug added but otherwise it's steady as she goes. We are still waiting for the biopsy results. His numbers are all pretty close to the "going home" zone which we are glad for. It looks like we may be here a few days longer to fulfill the requirements of the research drug.
Carl got a chance to order out when a friend offered to grab him some lunch on the way down today. The big splurge was Arby's, so we know he must be feeling good. Not much news to pass along, except that an angel and her dad have already set up and decorated our Christmas tree for us! How sweet is that? It's beginning to look alot like Christmas, especially from in here! Our thanks and love to you!
Update 12/15 from Kim
There were a few bumps in the road last night with Carl's heart catheter, so it was an early "role call" about 2:30. I would say the really rude awakening was when he found out his bone marrow biopsy was already scheduled for this morning. Yikes! One of the challenges with Carl is that most of his bone marrow has filled in with scar tissue from his disease so there is not much space left for the cells to make blood. I believe this is the 9th one he's had and they haven't been pretty. They've never found any bone marrow so they settle for what they can see from a chip in the bone. It will take them a couple days to get the results.
One of the main things they will be looking for is the amount of mast cells in the bone. A normal reading for you and I would be a 1, while Carl was at 3,000 at one point. He had dropped down to an all time low of 800 a few days ago. Chemo and radiation kills the rapidly dividing cells but the mast cells that divide slower can survive. Carl's cells gave the mast cells the green light to replicate out of control; the hope is that Karen's cells will stop this process and destroy the overgrowth of mast cells over time (months, years?). It is amazing!
We continue to check the days off the calendar and know we are getting close to coming home! In the midst of this craziness, we found out that Anna officially graduated from River Falls with her Secondary Education (grades 6-12) in Math. She still needs to finish up her student teaching through January to obtain her teaching license. She is blessed to have a long term sub position already lined up, which starts in February. She will teach in a middle school in Woodbury. She student taught there at the beginning of the semester and loved it, so we are excited for her! Blessings at every corner!
What an incredible gift to experience all of this, especially in this season, as we celebrate the Saviour's birth. We are both incredibly grateful for all of God's blessings, seen and unseen. Wishing you the same. God's peace
Carl's Update 12/14
We're settling in after a long, but great day! In the medical department: numbers that should be up are up and the ones that should be down are heading that way. It's amazing to me how things can change directions in a day or so! We are waiting for the results tomorrow (12/15) on all the biopsies. We are thinking we will have an exit stategy soon. The liver research drug will have it's own protocol so we will be tied into the specifications of the study, which is fine with us.
We had a chance to have company today and breathed a sigh of relief that we're over a hurdle here. I was talking to a friend about miracles today. I feel like I would have used the word so sparingly from our "former life". For me to use the term, I thought would seem a bit dramatic or showy. Thinking about it today, I've realized that it's not about me or us; it's about Him and what He has done so faithfully in our lives over this past year. We have witnessed amazing things and been on the receiving end of so much kindness and love; words of thanks could never do it justice. To not give God the glory He is due, seems just crazy! So, a miracle it is! Love the old phrase, " You might be the only Bible some people read." We look forward to what God has in store for us, and all of you, next! Thank you to all of you for your love, support and prayers!
Saturday 12/13 from Kim
The days all seem to start early with the 4 am labs, vitals and the addition of supplements to boost whatever happens to be lacking at the moment. Carl is feeling better today and getting some strength back and he is able to talk without being in pain. So, careful what you wish for, I guess!
Not much new in the medical department. We are just waiting for the results from the biopsies to see what grade his Graft vs. Host disease falls into. This is information that will be used in treatment now and further down the road.
We had some visitors today to pass the time and have some laughs. Pastor Howie seems to be a frequent flyer here and he continues to be a day brightener to anyone he encounters. Seems we have a lot of those "regulars" showing up here whenever they get the green light. We are grateful for you all. Everyone has been so great about shuffling in and out of the room and tag teaming to get everybody in here. There is a 3 visitors in the room rule due to the air filtration system. More hunting talk today from the hunters in the room which is always a boost. Karen came with our laundered clothes and a victory dance for the white blood cell count which has now climbed to over 4,000! One hurdle down thanks to an awesome God and some pretty sassy stem cells! Lauren and her boyfriend Nick were up to visit and share some good job/school news for Nick. Seems like God has been working overtime here answering prayers and showing His faithfulness at every corner. We are so thankful for the smiles across the room and the easy and fun conversation. Carl's making good progress and we are checking off some important benchmarks to be sprung from here! We continue to pray in thanksgiving for God's healing power for Carl and others in need, and also for His gift of love and comfort that we feel through all of you. Blessings to you!
Carl's update 12/12 from Kim
Carl's lesson today while at the U:
English: NOT a fan of the "scopy" or the "opsy" (colonoscopy, endoscopy, biopsy).
However you spell 'em they still stink!
Math: 7 days before transplant +18 days after transplant = 25 too many.
Lunch: Some hopsital food does not deserve to be uncoverred.
Physics: What comes up must go down and visa versa (enough said)
Languages: Learning "Turkish English" from his doctor can be confusing yet entertaining. "It goes and it comes", "Please, no head hit", "Zis iz good, knock the wood".
Health: one major food group for dinner tonight, chocolate (chocolate milk, chocolate pudding and chocolate protein shake).
Recess: The kids come by for some good conversation, laughs and a little "Name that Sender" while we open our cards.
I am listening to Carl call his folks for the first time in a week. He just hasn't been up to it since the mouth sores have been so bad. So, there's a little bit of "Bless your heart" and a "so good to hear your voice" and in case we hadn't cried enough, Alice will throw in the "We love and think about you two so much, we can't get anything else done"! Priceless
So, we wait on some lab results but know that Carl is in good hands and things are managed and looking up! We marvel at our "wall of cards" and are touched by so much love from our family, friends and two great church families! I think Carl will be up to visitors soon and we do so appreciate all of you who want to come and see us!
We remain encouraged and strengthened through God's word and humbled by the kindness and love of His people. Our love to all of you!
Update 12/11/14 from Kim
Last night was, unfortunately, the "Battle of the Bathroom". Definitely not fun for poor Carl. But the good news was the WBC (white blood cell) count continues to climb. So, now he is in the Graft vs, Host disease game, which includes vomiting, nausea, diarrhea, and a heck of a rash.
Today they did a skin biopsy and will treat it with a few different drugs to curb the symptoms. Carl has had some pretty rough days (weeks) but he continues to try to stay positive and optimistic. Tomorrow he will have some biopsies done with an endoscopy and colonoscopy to figure out the extent of the disease. Prayers are always appreciated for Carl and for this great health care team that continues to be so knowledgable, supportive and caring. Some of the best cheerleaders I've ever encountered, God knows when to send in the "A squad" and we do appreciate them!
We had Lauren and Anna stop by tonight to catch us up on what is going on in the outside world. We managed to have a few laughs with the girls and the nurses over "3rd grade potty humor". We try to laugh, or at least smile each day.
Pressing on to the goal and feeling grateful for each new day!
Dec 10 from Kim (later in the day)
It's official, the cells are in! First phone call,Karen! Not many words on either end but some days you just have to break out the ugly cry! Overall Day 16 couldn't have started any sweeter! Well, actually I take that back. Day 16 minus the blow to the head in the bathroom at 4 am. We did get a speedy trip in our pjs downstairs for Carl to have a CT scan! I feel like he's just waiting for the next unsuspecting staff person to ask him his favorite question, "Do you feel safe in your environment?" I feel like it's not quite as funny when you actually have a whopper of a bump on your head. Carl's standard answer will now and forever be, "Look at her, wouldn't YOU be scared?" He still thinks he's funny...? Some things never change!
Karen was up to do the "Happy Dance" before noon and one of the hunting guys was up for some paperwork, laughs and great conversation. We also had a visit from Pastor Howie. Alyssa and Aaron were also up to hang out.
What more can you say about a day like today? We humbly give thanks, praise and glory to God. Leave it to HIm to always have the last word! AMEN!!!
12/10 from Kim (9:00 AM)
HALLELUJAH!! Carl and Kim got the GOOD news that Karen's cells are in and grafting! Numbers are obviously small, but growing. Praise God!
Day 15 (12/8) from Kim
Not too much new overnight except for the race to get to, and remain asleep. The mornings go by so quick it seems you just turn around and it's already noon.We are grateful for the liver number that continues to fall. What do they say about slow and steady?
Carl's doctor was in this morning and told us that we should, "knock the wood" meaning that he was optimistic that tomorrow there would be some lab results that would reflect the appearance of Karen's cells. He is careful to remind us that with their appearance there will be new challenges. Around the corner there will be "graft verses host" issues, which are very common, and Carl will also experience some problems with the incompatibility of Karen's blood type. All of these are an expected part of this process. We know this is going to be a long year, but we are grateful to God that there is a battle to fight!. How amazing that our God is there for us every step of the way, showing us more of Him through all of this, and through all of you!
So, today Karen is coming in at 4:00 for a little Ellen party. Alyssa was at the (Ellen DeGeneres Show) taping yesterday and it will air today. It was one of her "12 days of Giveaways" days so it was a fun and prosperous little getaway for her. We were glad she could escape for awhile and just have some fun.
Tomorrow is a new day filled with hope and assurance of His continued care. A perfect thing to rest in! Blessings to all of you and sending you our humble thanks!
Isaiah 43:2-3 When you pass through the waters, I will be with you; and when you pass through the rivers they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God.
12/7/14 from Kim
We ended up with a 4 am wake up Sunday morning because of the lab work, pre-meds and addition of blood and platelets. Carl's doctor thought that it would be a good idea to do a lung scan. They showed us the scan from 3 weeks ago and compared it to the one from 12/7. There were some definite changes but they weren't quite sure exactly what those changes were from. For now, they are hoping that the mega doses of the antibiotics with the combination of the cells coming in will turn it around. There are more aggressive treatments to try if they need to. A blip on the radar compared to the liver issue, so we'll take it. The liver numbers continue to trend downward so once again another answered prayer.
Carl's mouth is slowly getting better but still is only able to slurp down a few things. We expect tomorrow (12/8) will be a little better, but in the meantime Karen is buying out the local grocery store trying to find something that will go down. She is going to be a tough act to follow when we "graduate from the U"! So good to see that Carl was up to seeing some of his hunting buddies today. They are going to have to start making up some hunting stories just to keep him happy!
Tomorrow (12/8) is Day 14, a day that I thought may be filled with more apprehension than it deserves. It will be a good day, as today, and all of the others have been. As Carl's doctor would say "Zis is only the beginning... We are fine, the cells, they will come." I don't believe "freak out" is in the Turkish dictionary so we just aren't going to add it in now!
Pressing on and waiting on what God would show us for his next lesson. He has our full attention, and we are grateful that He is such a patient teacher. All in all,I think school is going rather well, all things considered. Love to you all and God bless you for your kiindness and care.
12/4 Carl's update from Kim
The day started with a lot of "liver" talk! Carl's doctor spent most of the day with us to come up with a new game plan to get the liver back in the game. It seems that it's not filtering the blood effectively due to clogging of the tubules. What they tried to do yesterday to improve its function wasn't very effective and the numbers continue to climb. Luckily, his doctor has a lot of resources and he knew of a drug that is used in Europe and has shown promise in treating this condition. Since it is not approved in the US, there was some red tape, phone calls and paperwork involved to get Carl into a research study. After a lot of paper shuffling and signing, by 3:30 he was hooked up and ready to go. Hopefully, he would start to show response in a week or so. God and his great doctor have been working overtime on Carl's behalf today!
Although we know it is only Day 10, they do report twice a day on any activity of Karen's cells and so far, there has not been any change. This is perfectly normal and we know we should look more toward Day 14 for a response. One thing we have learned from this disease is to be strong, trust and stay positive.
We got a good "shot in the arm" today with a visit from Pastor Howie and Anna!
We want you to know that we are both honored and thankful to have your prayers and your love on our side. We are so grateful for our faith and for God's active role in our lives!
Hugs to you from our Southern condo at the U!
Update 12/3 from Kim
Well, Day 9 has come and gone. We were glad to have 2 visits from Carl's docor today reassuring us about a new and approved game plan to get his liver to bounce back a little quicker. So, he had to get back into the "real food " world, because the IV nutrition proves to be hard on the liver. He gave eating his best effort, but it was a struggle for sure. Who would have thought? We even tried the cocoa puffs for breakfast and I didn't even fight him for the prize inside the box!
But on a more serious note, as you probably realize, it is a waiting game right now. He continues to get blood transfusions and platelets to keep his body going until Karen's stem cells start to come in. We wait and we trust....
We want to thank you so much for your prayers and blessings each day.We have been reading your cards, texts, and e-mails and it helps us to pass the time and it reminds us to be grateful of everything that God has blessed us with. We remain focused on the goal and we are trusting and resting in the Lord.
PS We managed to have a little party tonight, thanks to some girls I know! Lauren and Karen were part of the crew too!
Update for 12/2 from Kim
Carl slept a little better last night, so that has been a Godsend. He even managed to get out of bed and pedal in the gym on the exercise bike. That was enough to wipe him out for the day, so he has been sleeping through most of it.
Not much new to report today. They keep hooking up new things and running all kinds of tests and so far, they are getting "expected" results so we are thankful for that.
I told Carl that he has no choice but to get better because people have invested a lot of Hallmark cash in him!
Seriously, we continue to feel strengthened by God's goodness and eternally grateful for your love and support.
PS: Sorry, I may have given the wrong zipcode to some of you. It is 55455
12/1/14 from Kim
Pastor Howie was down for a visit today, otherwise Carl has not been up for much company. Carl has been a fighter and has been trying to stay in good spirits. Overall, this was a good day to draw an X through and we are ready for tomorrow.
So, we give thanks to God for preparing us so well, and for all of you for holding us in your hearts and prayers. Blessings to you.
From message from Kim 11/28/14
Carl's Update Day 4 The updates are going to be relatively similar and that's ok with us. We had a pretty quiet day and Carl managed to give a nod and a couple of words to his visitors. He has more mouth and throat sores today, but this is expected. He will improve WHEN (not if) Karen's cells start to make white blood cells. We have a new appreciation of the phrase "Waiting for the Lord"
We cross this day off the calendar and look forward to each new one that comes. Thanks for your concern and continued prayers, they are much appreciated.
Update from Kim 11/27/14 9 pm
Happy Thanksgiving. We have so much to be thankful for,especially this year. There were visits from family along with turkey dinner from the Glen Cary kitchen.
As far as Carl's health goes, it's been a bit of a challenge. 11/27 is considered Day 3 after the transplant and he is still getting chemo treatments on Days 1,3,6 and 11. This one affects more of the mouth, throat and GI tract so it's been a bit of a challenge. He continues to be a trooper and knows there are going to be rough days ahead. He has been very tired the past 2 days because his counts are low.
The staff have been such a blessing, encouraging him and preparing him for what is coming next.
We have been so blessed and want to thank all of you for being such great supporters through all of this.
This will be a long journey and we know this is an expected part of it. We thank God for your friendship and prayers.
Latest updates from Kim on Wed. evening 11/26/14
Alyssa, Lauren and Anna have each been up to spend a little one on one time with them. Carl's brother Bob and his 2 sons Brian and Jonathan were also up for a visit.
Carl slept pretty well last night but woke up to some pretty bad nausea. His blood counts are close to zero so now is the time they really have to watch it. As expected he has been having transfusions and is projected to be getting platelets too.He is hooked up pretty much 24/7 to something and it was recommended that he stay in bed today and possibly tomorrow. So he has been sleeping most of the day.
Time on the "inside" continues to go by at a lightening pace.
"As we settle in for the night we are so glad tomorrow is Thanksgiving! My favorite holiday,especially since we have so much to be thankful for. We hope you have a blessed day tomorrow."
1Thessalonians 5: 16-18
Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus
11/25/14 8:30 am (From Kim via Cindy)
Good Morning. Have not gotten update yet this morning but late last night Kim posted and update with a few pictures. Just a quick recap..
Monday Nov. 24 was "Birthday Day" complete with party, cards, cake!
It was a busy day for Carl and Karen. Karen's stem cells were collected for 51/2 hours and when she was done she came back to wait to hear how the count would turn out. At 6 pm they got word that she had produced more than enough and would not need to repeat the collection process the next day. "Answered Prayers!"
A group at Glen Cary gathered to pray and called to sing "happy birthday" as they face-timed with the family, and Pastor Howard and Kris gathered around Carl.
They worked with the Chaplain at the hospital and had Blessiing of Transplant Service that was very moving.
About 7 pm the kids showed up and the blood was ready to be transfused into Carl. Unfortunately he reacted to the blood and they had to wait a couple hours until his body had settled down and then they were able to complete the transfusion.
To quote Kim "We will take the victory for the day and rest in the promise of a new life for Carl thanks to a sister who's motto for this past year has been simply..."My only priority is you"
11/24/14 12:51 pm (from Kim)
Progressing! Carl resting comfortably - even hit the gym! Stem cells are being collected from Karen. They’ll be sent to the Red Cross, then back to the hospital after testing.
The Chaplain is doing a Blessing Service at 4:00, and they are video taping it. Transplant is taking place later today, sometime after the Blessing Service. All kids will be able to be present when infusion begins.
As you can imagine, this have been a highly anticipated benchmark in this process! We are thankful that it is finally here and it has gone so smoothly so far. We truly appreciate all the prayers. Reallly, what else matters?! Sometimes God makes some things incredibly clear. Much thanks to you all!!
11/24/14 - 8:51 am (from Kim via Cindy)
Today, Monday Nov. 24 is transplant day.
Isaiah 58:8-9 are the verses they have chosen for today
“Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, And the glory of the Lord will be your rearguard. Then you will call, and the Lord will answer; You will cry for help, and He will say; Here I am.”
There have been a few bumps along the way the past few days but everything is on schedule for Karen to come in this morning and receive her injection, then 4-6 hours to collect the stem cells. The cells are then sent to the Red Cross to be counted. If they need more, the process will be repeated. They will use the cells collected right away. They will be processed and sent back to the hospital for Carl. The hospital chaplain has prepared a "Blessing Prayer Service" that will take place before the infusion begins.
All the prayers, cards, positive wishes, and support are much appreciated. Keep on praying!
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