My plan is to keep everyone updated about my progress at the Hutch.
Well today is my last day at school before we leave for Seattle. The feeling of leaving is pretty strange as I went around to all the classrooms to speak with all of the kids. I could sense some concern from the looks of some of the students and I guess for the first time I am starting to get a little worried about what is ahead. Jody, myself, the kids and my mom are leaving at around 3:00 am tomorrow morning. Kade does not like his car seat so we thought we would get started while he is sleeping.
My first appointment is Wednesday the 24th to start the workup (Physical exams to make sure you are healthy enough to go through the high dose Chemo/transplant). After the workup has been completed I will start a phase called the conditioning phase (this is the time for chemotherapy and/or radiation therapy) This phase take approximately 6-10 days. After the conditioning phase is complete I get three days off (already can not wait) before the actual transplant. After transplant it will be a waiting game to see engraftment.
I will try to post something everyday. If I can not, due to sickness, Jody my wife or somebody will for me. I have already received numerous messages and I can not thank those people enough as it will help motivate me through this battle. Thanks to all my friends and family.
Wow, The kids here at school just had an assembly for me. Man am I proud to be from Philipsburg. To see the staff members and kids put together an assembly of that kind, just for me. It was truly great. I am really going to miss this school and all that are apart of it. GO PROSPECTORS
Well we made it to Seattle. Our plan worked great. Getting up early and traveling as far as we could with the kids being asleep was worth it. They both woke up with smiling faces just east of Spokane at about 8:00am Montana time and 7:00 pacific time. We stopped for breakfast just west of Spokane and the kids were real troopers all the way to Seattle. We arrive about 12:30 and unload the Uhaul. What an experience that was. I had a good old fashion Montana meltdown with some of the locals as parking a 4 door pickup hooked to a uhaul can be an interesting experience.
Later that night my sister Robi and I went to the airport to pick up my sister Kara (donor). It was good to see her again. The only one missing now is sister Kim who is back in Chicago. We really miss her out here and can not wait to see her in the next couple of weeks. Kara will accompany me with physical exams for the next couple of days and then I am on my own for a couple of weeks.
Long day and somewhat overwhelmed. Must get some rest.
Wow what an experience sleeping in downtown Seattle with your windows open. You could only imagine some of things one might hear. Wasn't all that bad, I guess we will have to get used to it. Kara, Jody and I went to the Hutch at 12:30 to start or exams. Today was pretty simple; just some consultations and blood drawing. What a facility. Very personable people. We met with some of our team members today and will meet the rest tomorrow. They give a color to every team and our team color is lime. I was hoping for maroon or gold but I guess lime is better than pink. It looks as if we have a full day tomorrow at the Hutch. We will meet the rest of our LIME TEAM and I think we will meet with a social worker, financial director and nutritionist.
Thanks to all who have sent messages. I have received 44 of them today. Pete yours was hilarious. I remember that incident. Anyway, please know that we see each and all of them and we cherish each and every one. It is very difficult time-wise to reply so please bear with us. It is great to hear from you all.Talk to you tomorrow.
Well today was rather boring. We met with a nutritionist who told us what I can and cannot eat. We met with a financial advisor to talk about insurance. Then we got to meet Dr. Jan Storek, who Jody and I assumed was a female. :O) To our surprise as the good doctor entered the room "she" was a man. It was nice to talk to him. Jody however, had a difficult time with what he had to say. As it seemed so negative in reality he was clarifying the risks of the procedure. She's fine as all the pressure of being a mother and spouse is starting to add up for her. She needs a lil TLC at this point.
Tomorrow I can't wait for tomorrow. At 8:45 a.m. I start the day being pricked for blood work. Then I go on to the cardiology dept. for an EKG and other heart tests. The reason for all the tests it two fold. 1. They want to make sure I'm healthy enough to go through the transplant and 2. They are trying to create baseline data for post transplant purposes. Then of course I have the dreaded bone marrow aspiration. "Everybody should have to go through one of these especiallymy good buddy Kevin Brown, he needs a dozen." All and all I should not complain and won't complain because there are so many people at the Hutch that are worse off than I. I met a young boy apron. 8-10 named David who is from Hotsprings MT, and he is just starting his transplant. This is his second type of cancer as he is a survivor of Melanoma cancer. What a courageous young boy who I can feed off. I cherish my visit with him and his family. Anyway, that will be it for the week and we'll be back at it Monday.
I want to thank all who have sent me messages. I've received messages from people I do not even know and they are great. I want to really thank Roxie Anderson for all that she has done for me and my family. We love you Roxie.
Well Friday's bone-marrow aspirations was as fun as I knew it would be. They laughed at me when I got into the operating room. I guess most people go in sedated. I refused to do that as I can remember the feeling of sedation when I had my wisdom teeth pulled. Anyway, I was pretty sore all weekend and are still a little sore today. It sure puts a damper on the wrestling with the kids.
We had a great weekend. On Friday Robi took us all to the Mariner vs. A's game. It was fun. What a stadium! The game was okay I guess, a little slow for me, and there were no bench clearing brawls. Saturday was even better. It seems that my good buddy JC Holland was trying to look out for me so he called Mick Dennehy my old college football coach who is now at Utah State and the two of them got Jody and I sideline passes for the Husky vs. Stanford football game. It was great being right there. It r Today I had two appointments. I met with a dentist to look at my teeth. Everything is good, I'll have to have them cleaned next week I guess. Then Jody and I met with a social worker. They are people that are designated to help us any way that they can besides medically. There other responsibility is to go over power of attorney and living wills should something go wrong during the procedure. I am glad I got this stuff done in Montana before we came out here, so we did not have to talk about it much. Tomorrow I have three appointments. 1) Research Protocol. I have no idea what is in store for me with this appointment. 2) Food safety class. Designed to talk more about nutrition and the foods I can and can not eat. 3) Managing Care at Home. I guess this is more designed for Jody than myself but we will see.
That's about it for today. I want to thank you all for the messages they are great and a special thanks goes out to JC Holland and Mich Dennehy. That game was great.
Today was a rather boring day I had three appointments. Two of them were on food preparation and home care when I get to go home from the hospital. The first was a consult on research. I decided to be a part of a research project about graft vs. host disease. So I will be going in tomorrow for a skin biopsy and some more blood work. Whats another couple of tubes of blood, I think they have already drained me a couple of times. Anyway, if I can do anything to help the fight against cancer I will. I can not thank the people before me enough for their contributions to research. Jody, I and the kids are really starting to get homesick and we have only been here a week. That light at the end of the tunnel seems to be getting farther away. I hope soon it will start to shine brighter. The count down to transplant is now at -16, so at the top of each update you will notice the date and the count down. I am really starting to get excited for game time. Chemo is scheduled for next Wed. I get my Hickman line on Monday.
I am not sure what is in store for me tomorrow as I do not have my schedule with me. I think I have some pulmonary test and stuff like that. I will let you know tomorrow.
10-1-03 Day -16
Here I am in the waiting room of the Hutch waiting to get the skin biopsy, and then some pulmonary tests.
What great news. Our school bond election passed 7 to 1. That is a pretty overwhelming statement by our community. My hatís off to Philipsburg.
Thanks to all who are emailing me. It is also nice hearing from some of the students. Sounds like things are going well at school; So well that I probably will not have a job when I get back. I was notified that someone sent some flowers today, but I could not accept them as fresh flowers and plants are not acceptable in the Pete Gross house due to bacteria etc. I was able to get them sent to my sisters and as of right now I do not know who they are from. I will see later. Anyway balloons and things like that are okay. We just can not have anything that might remotely make me sick.
10-2-03 day -15
I just finished reading about 20 emails and I am having a hard time not laughing uncontrollably. Between Mr. T's potential hunting and Stackers school stories it keeps the tension low and reminds me of being home. God, I love to hear from all of you. Please know one thing though, I can not possibly respond to all the emails so please do not get upset if I do not. It is great to hear all the things that are happening back in beautiful Montana.
Today started off rather early 6:00am for cardiac ultrasounds. I had to go over to the University of Washington Medical Center for the ultra sound. What a facility! It is huge and very nice. I guess that is were I will be in the hospital come Oct. 13th. After the ultra sound Jody and I met with my nurse
(Georgann) she is great and one of the new doctors. I found out that the record for being released from the hospital is eleven days so, my goal is to beat that record. I guess the record was by a professional triathlete. So I guess we
will see. We talked more about next week and I really started to get nervous.
Monday, we as a team set the final protocol. Tuesday I get the Hickman line by Dr. Hickman himself I guess. Wednesday, I start a drug that will keep me from having seizures while taking the Chemo. Thursday is game time. I will be getting chemo drugs five times a day for four days and blood draw every hour. I guess they do this so I will get the optimum amount of chemo without it being toxic. Sounds like a butt load of fun to me. I can not wait. I am off tomorrow and Jody, my mom, the kids and I are going to go to the ocean if it is nice. It will be nice to see Kade and Sydney run around in the sand. Hopefully it is nice out. Today it was foggy all day.
Well that is all for now. I probably will not update until Monday unless something comes up. Take care and Go Prospectors.
ps. Thanks to Ron and Judy Paige for taping the Griz game and sending it to me. I never thought I would ever see the Griz running the option. It was fun to watch although and it will give opposing coaches one more thing to prepare for. Maybe Bob Hauk is going to be alright after all.
10-7-03 Day -9
Today was rather tough. The Hickman surgery went well but in conjunction with all the other appointments including dental cleaning I am spent. Dr. Hickman is amazing. He is supposed to be retired, but I guess they get him once in awhile to do the procedure that he patented. I am pretty sore.
The procedure is bigger than I first thought. They put a tube approx. the size of a pen just under the skin for about 6 inches, that runs up towards my right collar bone. Then it goes behind the collar bone down to a big vein outside of the heart. The procedure takes Dr. Hickman only about 20 minutes to perform.
Tomorrow I have chemo school. I can not wait for that. We had a little setback this morning as Jody as come down with the flu. So currently she is staying over at the Marriot until the flu subsides. Kade is with Grandma Davee and Sydney is on her way back to the burg. I am here by my self and boy do I miss Jody and the kids. Jody is a champion she does so much for me and when she is gone I really miss her. I hope she is feeling better tomorrow.
That is all as I am exhausted. I am going to take of coupe of Perkiset and go to bed. Mike
The past 24 hours have been rather crazy for us. I ended up checking in to a motel around noon yesterday because I got sick. I wanted to keep away from Mike and the kids because it was a really bad bug. Mike got his Hickman line put in yesterday (Tuesday) morning and did great. Dr. Hickman is a wonderful person and was definitely a bright spot in our time out here. Due to me getting so sick so quickly, Grandma JJ and Sydney loaded up and headed for the Burg yesterday afternoon instead of this morning and Kade went to stay with Grandma Crazy (Davee) and aunt Robi for the night.
So Mike had some peace and quiet for the evening. Things didn't go as planned. He started throwing up and did so all night. He ended up having to get some IV fluids due to being dehydrated. The doctor thinks we both got food poisoning because of how sudden and hard our symptoms were. We are hoping that is the case because neither one of us have ever been that sick and don't want the kids or anyone else to come down with it. Mike was supposed to start his Dilantin today and Chemo tomorrow, but things have been postponed a day at least. We go in at 10:30 tomorrow morning and they will make a decision then as to what the new game plan is.
Thanks to all of you for all of the e-mails, cards, and phone calls. We love hearing from all of you.
10-9-03 Day -8
Today Jody and I are feeling much better. I had an appointment this morning to see how I was doing. The plan is to continue. I will be delayed only one day. The original transplant day was supposed to be the 16th and now it will be the 17th. I started Dilantin today at 5:00. This drug is designed to keep me from having seizures from the Busulfan (Chemotherapy) that I will start tomorrow morning at 7:00 am. I guess I will be taking this drug and a lot of it all day for four days. They will then draw my blood one hour after each dose to make sure they are giving me the most they can without it being toxic. My Hickman line is feeling better. It sure looks strange to see these tubes hanging out of my chest. We were able to get a picture with Dr. Hickman and we will post it asap. It was great to get to meet him. What a class act. It was an honor to have him do the procedure. The Hickman line is known worldwide and to get to meet that doctor was great.
Today was a pretty good day for us. I was able to go for a walk and Jody ran some errands. We are going to be pretty busy and possibly not feeling well starting tomorrow so it was nice to be able to get out. I guess little Sydney Rae got the same bug and was up last night in the burg throwing up. Bless her heart. Her daddy and mommy already miss her
Thanks again for all the messages.
10-10-03 Day -7
It is 8:00 p.m. out here in Seattle, and Mike just took his evening dose of Busulfan. He was a champ today and did great. He felt like he was carsick all day and the anti-nausea meds are keeping things at bay. His system absorbed the chemo (Busulfan) really well, so they decreased the amount he has to take for the next 4 doses (only 28 pills at a time instead of 40). Tomorrow will pretty much be a carbon copy of today. He starts at 7:45 in the morning with blood draws to check his levels and they will follow him hourly until 2:00. Then they will call and let me know how many pills I need to pick up at the pharmacy and how many pills he will take for the next 4 doses.
Mike's dad and his wife arrived earlier this week and it is nice having them here. Kara flies in tomorrow evening and she gets started on Sunday. We are so thankful to have so much family support. We couldn't get through this without all of them. Speaking of family, Gramma Crazy provided all of us with a laugh today. She was going back to Robi's house this afternoon and ended up on the expressway headed north. Now anyone who has been out to Seattle knows that if you get on the expressway where we are you don't get off until you are basically in Vancouver. Not only was she on the expressway, but she noticed that everyone kept driving by her and pointing. She thought it was because she wasn't driving as fast as she should. Well, they were all trying to tell her that she had a flat fire. Thankfully she exited at the one and only last exit there is and realized it wasn't just a bumpy expressway. We could all laugh when we knew that she was safe.
Another funny that Grammy Crazy provided happened at the lab today when she was filling out her paperwork to get a flu shot. Each patient here at the SCCA has a green card that is like a credit card that has their patient ID number and info on it that is used every time you have an appointment. The receptionist asked Davee for the green card and she said "no I'm a citizen". Needless to say, everybody in the lab started to chuckle. Mike even got a laugh out of it despite feeling so lousy.
We want to thank Mrs. Tuss and the first graders for the pictures of the leaves and the care package. We are all really missing the beautiful fall weather at home.
Good luck to the Prospectors and Lady Prospectors this weekend. We will be cheering for you.
Today went pretty well for Mike. Kara arrived safely this evening. We have her on a 6 foot tether in the spare bedroom until next Friday. It is nice to have her here and know that we are getting closer to the transplant day.
Mike's day tomorrow consists of more of the same. They will continue to check his levels every 2 hours. Our apartment is only about 5 minutes from the clinic so Mike can come home and rest in between blood draws.
10-12-03 Day -6
It is getting harder for Mike to take his chemo each time. Tomorrow is a pretty light day. Mike will get his blood drawn twice and we have a meeting with the doctor and team nurse to get the game plan for Tuesday. He will be admitted to the University of Washington Medical Center for his IV chemo (Cytoxin) and he will remain inpatient until his counts reach a level where he will be safe to come back to our apartment. The record is 12 days, so of course Mike is shooting for 11. He always likes a challenge.
10-13-03 Day -5
Day four of Chemo and I think my body has had enough. I take in the
neighborhood of 150 pills daily. That in itself is nauseas. Tomorrow
I will be admitted to The University of Washington. I will get a couple
blasts of some terrible chemo for a couple of days and then I get to rest on
Thursday. Friday will be my second birthday. God I love my sister
Kara (donor) she has been staying with us getting prepared for harvest on
We are receiving so many emails. It is great. Some from people we do not even know. Please keep sending them as it is a huge highlight of our day. We look forward to everyday.
love all of you people
10-14-03 Day -3
You will all notice that I skipped day -4. That is because we were wrong on our countdown. We are late in getting this in because I stayed with Mike at the hospital and we could not get a connection. At any rate, things are going along as planned. We checked in yesterday morning at 8:00 and they started with a tour of the floor. They hydrated Mike for about 3 hours before they started the Cytoxin, which they gave him around 2:30 in the afternoon. The anti-nausea drugs really work quite well. Mike did pretty good considering what was being put into his body. He ended up praying to the porcelain gods at 2:00 in the morning because we did not ask for more Ativan, which is the anti-nausea medication. They have it prescribed for him on an as-needed basis. So, now that we know that we are going to just ask for it every 4-6 hours. One thing we have learned already is that even though there are a lot of doctors and nurses telling you what you will do or be doing, you still are the one that is ultimately in charge.
Kara is feeling the effects of her injections. She is having pretty bad headaches. They will harvest her tomorrow at 11:30. Then they will count how many stem cells they got and see if there are enough for the transplant. If they need more they will harvest her stem cells again on Friday. Thankfully, her symptoms are supposed to go away as soon as she quits her injections, which her last one is Thursday. She is a trooper and we are very proud of her.
One day down with the Cytoxin, one to go. Mike will get his last infusion of Cytoxin shortly after lunch.
Thanks to all of you for your daily support.
Love and God Bless
October 16 Day -1
We are finally up and running with internet service in Mike's room. Mike's last dose of Cytoxin went rather smoothly. He definitely doesn't feel well, but he is hanging in there. It attacks rapidly dividing cells, which involves his entire digestive system. He does saline rinses multiple times a day to help prevent severe mucousitis in his mouth. It is inevitable that he will get it, the questions is how severe. His appetite is falling off, but he is doing well at eating something every meal.
Today was a day of "rest" for him, which means they just weren't putting any chemo into his body. Tomorrow will be the day we have all been looking forward to for quite some time now. Mike's entire family is here. His sister Kim arrived today. My mom, Jason, and Sydney were supposed to fly in on Wednesday, but Jason and Grandma JJ ended up getting sick so they couldn't come. We will really miss having them here with us.
Kara's harvest went well. It took about 2 hours for the harvest. We found out tonight that they need 5 million stem cells and they got 5.05 million cells. I guess some of them die, so they are going to get a count tomorrow before they make the decision whether they have to do another harvest or not.
Congrats to the Prospectors and Lady Prospectors!! What a great way for the Prospectors to end their season.
We should have some new pictures up tomorrow. I'm sure it will be after I have called Roxie a couple of dozen times.....Thanks Roxie.
October 17 Day 0
Today was a day we will all certainly remember. Mike got Kara's stem cells around 5:00 this evening. It took a couple of hours for the transfusion. Kara ended up having to do another harvest and they had to wait until her collection process was complete. Everything went very well. He had a reaction, which they told us was normal when people get any type of blood transfusion. They treated his symptoms with Benadryl and the reaction was over almost instantly. Mike gets 2 doses daily of a drug called Cyclosporin which is used to help prevent severe graft vs host disease (GVH), along with many other antibiotics and antifungal oral meds. GVH is where his body recognizes Kara's cells as foreign and rejects them or Kara's cells attack Mikes (As far as we can understand it). It will show up in the form of rashes on his skin or cause various problems in his stomach. They want some GVH, but not a lot. Each day we get behind us is one day closer to being home.
Love and God Bless
October 18 Day 1
Now the waiting game starts. Mike will be in the hospital for approximately 2 weeks. They will give him methotrexate (not sure on the spelling) on days 1, 3, 6, and 11. The purpose of this medication is to keep Kara's stem cells from engrafting too rapidly. So, he should engraft anywhere from day 12-14, since day 11 is the last day of the methotrexate.
Mike is hanging in there. His appetite comes and goes. Right now he is battling the idea of having to be stuck in this room for 2 weeks.
Thanks to all of you for your ongoing support.
October 19 Day 2
Not a whole lot to report for today. Mike is really tired and has a lot of ups and downs with the nauseaousness. His white count is starting to drop. Today it was 3.37 (thousand). It will get down to 0 before this is all said and done before it starts to come back up again, indicating that the transplant has engrafted.
Thanks to Mrs. Groomes and the 2nd grade for their care package. We hung up the posters in Mike's room that you all made. To those of you that painted our car before we left, I am still driving it around Seattle with the lovely paint job that you gave it. It has come in handy in the parking garages out here. I can spot our car a mile away.
I finally got some pictures posted, so take a peek.
Love and God Bless
October 21 Day 4
Today Mike's white blood cell count is 0.91 (910), so they are definitely starting to drop (normal range is 4,000-10,000). His throat is beginning to get a little tender. Hopefully this won't get too painful for him. He has been pretty good about doing saline mouth rinses, which is supposed to help with the severity of the mucousitis. He feels pretty good today. He got to go off the floor today to get a chest x-ray, so he was pretty excited about that. It is very nerve racking to leave this floor though, because it is so clean and almost sterile. It makes you feel "safe".
Today was Kade's 1st birthday and he woke up with a cold. I was planning on bringing him up to see Mike and then we were going to have a party for him at Aunt Robi's house this evening. Due to his cold I had to stay away from him as well. So needless to say today wasn't a very fun day for any of us. Thank goodness for Grandmas and aunts. They are taking care of Kade and giving him all of the TLC that he needs so that I can stay with Mike in the hospital and keep him company. Sydney has been in P-burg for a couple of weeks now, and we really miss her. Gramma JJ is taking care of her (and our herd of animals) and we are so thankful that Sydney can be home. Mike's sister Kim has been here for a week and flies home tomorrow. She has been a huge help while she has been here. She has taken care of Kade and we really appreciate it.
Thanks again to all of you for your e-mails. Please forgive us for not being able to respond to all of them. We look forward to them every day. It helps us feel so much closer to home and all of you when we hear from you and you tell us everything that is happening back home.
Thank you to our friends and our families for your endless love and support. We couldn't do this without all of you.
Love and God Bless
Jody and Mike
October 23 Day 6
Mike's white blood cell count today is 280. His throat is getting tender, but he is still doing very well. The doctors told us today that he is their healthiest patient on the floor and that he is boring. We really like being boring around here. It is a good thing. There is not a whole lot to report. Today being day 6, he got the methotrexate. One more dose of that on day 11 and then anywhere from day 12-28 his counts should start to come up. Of course, we are hoping that he will engraft right away and that we can get out of here and got back to our "compartment" (as Sydney calls it), but only time will tell.
Thanks to Miss Beattie and the 3rd grade for the great care package.
Love and God Bless
Jody and Mike
October 26 Day 9
We almost have day 9 behind us. Mike's white count today is 230 and his absolute neutrophil count (infection fighting cells) is at 0 and platelets today are at 11 (thousand). The threshold for platelets is 10. This means that when you reach 10 they give you a platelet transfusion. I guess it is pretty much unheard of to go through this whole process without getting a platelet transfusion. So we will wait and see what tomorrow brings. Mike is feeling okay. We shaved his head the other night, as his hair was falling out in clumps when we gave it a little tug. He wants you all to know that he is finally bald and beautiful. The mucousitis is getting worse every day. We walk a mile every morning (11 laps around the floor). On day 11 he will get his last dose of methotrexate and from there we will wait for engraftment to take place. The closer we get to day 11, it seems like the days get longer.
Kade and Gramma Crazy flew home today. We miss the kids tremendously and can't wait to all be together again.
We want to congratulate the Drummond Trojans. Good luck this weekend. Go John Clifford!!
Love and God Bless
Jody and Mike
October 27 Day 10
There have been many days we have looked forward to and they have come and gone, and then there is always another milestone ahead of us to reach. Tomorrow is one of those days, Day 11. This is the day he will receive his last dose of methotrexate. This will be the last time he will have to get any type of chemotherapy in this process. From here the mucousitis should start to improve since he won't be receiving any more medication that is damaging to his cells, which means the sores in his mouth will start to heal. Every morning we anxiously await to hear what his "counts" are to see if there is any sign of engraftment. It has been early up until today, but after tomorrow things should start to happen.
Love and God Bless
Jody and Mike
October 29 Day 12
The past 2 days have been pretty tough. Mike's mucositis has been pretty hard on him. Unfortunately, it is all part of this process. I wish I could take it on myself for him. He ended up having to get a platelet transfusion and he got a really good bump from that and they are holding strong. His neutrophils were 0.03 today, which is up from 0.0. Hopefully tomorrow they will be up even more, which will indicate a trend and that engraftment is taking place. No one can tell us when this will happen, as each patient reacts differently. The only thing they do know is engraftment takes place anywhere from day 12 to day 28.
We hear that it is getting cold back home. Must mean that it is Halloween. That is one memory I have of growing up in the Burg. It is very rarely nice for Halloween. I met some folks from home tonight. They are from Bozeman and the daughter, Jennifer, was born with a rare blood disease. Hopefully a stem cell transplant will give her a new life. She is 25 now and has overcome many obstacles already. She is right next door to Mike. It is so nice to meet someone from home out here in the midst of all of this craziness.
Congratulations to the Lady Prospectors and we wish you the best of luck this weekend!!
Love and God Bless
Jody and Mike
October 30 Day 13
Well it has been along time since I have felt good enough to get on the website. But here I am. Boy I can not say enough about how much my dear wife means to me. As I am writing, I am also shedding a tear which is very difficult for me to express because I am supposed to be that little tough blonde kid. Anyway, there is no way on gods green earth that I could have gone through the things that I have in the last two weeks without her. God I love you Jody. You are purely incredible.
Great news today I have started to engraft. The sores in my throat are starting to subside as my counts go up. White cell count: 797 (Normal 4-10,000) HCT count: 30 (normal is 38-50) ANC-Nuetrafills count 120 (normal 1,800-7,000) Platletts 62-thanks to the transfussion (normal 150-400) The doctors have stated that I am right on track and if things go well the next couple of days I might be dismissed on Sunday. So we will see what happens. The whole process is starting to show me a lot of different things about life. I know that people have life-changing experiences all of the time and surely I am having mine now. I pray for all the other people in this world that are fighting the battle of cancer. It is terrible to see the death, sickness and so many different types that these people have. I try every day to mustar enough strength to be visible in the halls so that maybe some of these other people will inspire to continue to fight the fight. It would be so easy to lay in bed all day, but you just can not.
Jody and I want to wish the Lady Prospectors all the luck in the world this weekend. Great season Ladies, but it starts now.
Also, I just got an email from my dear friend JC Holland from Drummond. Attached to the email was a picture of the entire Trojan football team holding up a sign that said "get well soon Mike" This picture must have been taken after their first playoff victory. Wow Thanks so much. Good luck through the playoffs guys. Remember attitude is everything, during every game, on every play. Bring Drummond a championship
We receive many emails and cards from the people in Drummond. What a great community, there is no doubt why you are having such success. Thank you to all of our friends and family in the lower valley.
October 31 Day 14
Hi everyone and happy Halloween. My goal was to be out of the hospital today and I just did not get it done, but they told us that tomorrow I will be dismissed. So we are very Happy. It has been a long process in here. I am ready to breathe some somewhat fresh Seattle air. My counts this morning went up again, so engraftment is no longer taking place it has taken place. White cells 1,310 HCT 30 ANC 380 Platelettes 112. Jody and I are so excited to go back to the compartment as Sydney calls it.
Sue, thank you so much for the pictrevures. They really broke our hearts (in a good way). We sure miss Sydney and Kade. Seeing them in their costumes was very emotional for Jody and I as we could not be there with them.
Again, thanks for all the messages and stay warm in Montana. Give our kids a hug for us please.
November 2 Day 16
Nice to be out of the hospital and sleeping in our home away from home. Mike will now be followed in the out-patient department at the clinic for the rest of our stay here. Today they told us he basically has 3 hurdles in this process. He has made it over the first one in getting through the transplant and getting released. The 2nd and 3rd hurdles are acute and chronic GVHD (graft vs host disease). GVHD is a common complication for individuals who receive a stem cell transplant from another person. It can occur any time from 3 weeks after transplant up until 1 year after transplant. What happens is one of the new white blood cells produced in Mike's bone marrow, which are called T cells, recognizes his tissue as different from that of Kara's tissue. It can cause problems with skin, gastrointestinal tract, and the liver. The symptoms can be anywhere from mild to very serious. To prevent GVHD Mike is taking immunosuppressive (suppresses his immune system) medications. Because of this they will monitor Mike very closely so when GVHD shows its ugly face they can deal with it right away. It is a given that he will have some GVHD. It is all part of this process. Tomorrow he gets his blood drawn, meets with the nutritionist and has a meeting with the lime team. I am looking forward to seeing our team nurse, Georgeann. She is the only one that doesn't rotate out every month. Everyone here is great, but it is nice to have a familiar face all of the way through this. Everyone else rotates the first of the month, so this week we will be on doctor number 3. We just start to get to know them and they rotate out.
Mike's neutrophils were 1.36 (thousand) and white blood cells 2.46 today. His magnesium levels are low, which is a result from the GVHD preventative drug, so he had to have a magnesium infusion today. His counts are definitely on the rise, which we are so thankful for.
We are very proud of our Lady Prospectors. Very Exciting winning the District Volleyball Tournament!! Now on to Divisionals....YEAH!
Love and God Bless
Jody and Mike
November 3 Day 17
Mike had to get another magnesium infusion today. This is rather common as the immunosuppressive drug he is on causes magnesium loss. The medication causes so much of it that it is almost impossible to keep the levels normal through diet and pill supplements alone. Part of my responsibility is learning how to give Mike fluids and medications by IV through his Hickman. This makes it really nice because we can be at home if he needs things like magnesium, and we don't have to go to the hospital or clinic for hours at a time for infusions. He doesn't have any appointments tomorrow, so we are planning on getting out.
We have been holding on to the idea of possibly being able to come home over Christmas and then come back out. Unfortunately, today they told us NO WAY!! It is too big of a risk if anything were to go wrong. At day 80 if things are going well they do about 1 week worth of tests and procedures and form a long-term plan for Mike. So between now and then he will have bone marrow biopsies on days 28 and 80 along with bi-weekly blood draws and appointments. If the GVHD flares we will be right here where they can tend to him immediately and determine what exactly is going on and what protocol they need to follow to keep it under control. He has a few spots on his skin that are questionably GVHD that they are just watching for right now. They want a little, but that is it. So for now we wait. Every day that Mike feels well and doesn't have any major complications come up is a blessing and is one more day down. I made a calendar for him that has the date and the day he is on post transplant. Every night he crosses a day off. Right now there are a lot of days to go.
Davee is bringing Sydney back out to Seattle next Tuesday. It has been 6 weeks since we have seen her, and we can hardly wait.
I posted some more pictures tonight. I did it all by myself Roxie!! No help!! All of you have been wanting to see Mike's bald head. Bald is beautiful!!
November 5 Day 19
Not a whole lot to report today. Mike had to get his magnesium level checked today, and it was a little low still but he didn't have to get another infusion. They just upped his oral magnesium. He was glad to hear this as he hates being hooked up to "that thing". We got out today and went down to the sound for a walk. Mike can go out and about. He just has to stay away from other people, especially indoor settings. He seems to be having a touch of GVHD with bouts of nausea at times throughout the day and a few rashes.
I will probably do updates weekly now, since there is not a whole lot to report on a daily basis, which is a good thing. I am thinking I will do these on Monday as this is when Mike has appointments with the Lime Team. We are still pretty boring and pray that we continue to be that way. It is a good thing to be boring in some situations, and this is one of them.
The Lady Prospectors are off to Divisionals in West Yellowstone tomorrow morning. We know they can bring a trophy home to the Burg and be off to the state tournament in Lewistown. Good luck girls!
To our friends in the lower valley...Good Luck and wear lots of warm clothes!!
Love and God Bless
Jody and Mike
November 10 Day 24
Since we last met we have been trying to pinpoint the cause of Mike's nausea. We have been trying to spread out some of his meds instead of him taking all of them at once. They all have to be taken at an approximate time every day, but there is some room for juggling them around a bit. Today they discontinued his oral magnesium, thinking it is the culprit for his symptoms. The only thing about that is he will get 5 hours of magnesium infusions daily instead of 3 hour infusions. The pump used for his infusions at home comes complete with a nice little backpack, so that he isn't tied down just because he has to get an infusion, which is really nice. Hopefully his absorption of the magnesium will improve with time. Low mag levels are part of being on Cyclosporin so we'll just go with the flow. Mike gets his blood drawn twice a week right now. They run a complete blood count as well as look for the presence of CMV, which is a really nasty virus, and check the level of Cyclosporin present in his blood stream. The nurse called us this evening and Mike gets to decrease his Cyclosporin dose because his levels are too high. This is always good news. It is always nice to get to take less instead of have to take more. He has some rashes showing up on his shoulders. Lisa, our PA for the month who is awesome, told us today that the amount he has right now would be just the amount she would like to see. So, hopefully it won't spread like wildfire and just stay put. This week Mike has a dental appointment, nutrition, and his very favorite....a bone marrow biopsy, along with our regular clinic appointments. So it will be a busy week.
We are very proud of the Lady Prospectors and their Divisional Championship. We wish we could be there to cheer you on at the State Tournament in Lewistown.
Congrats to the the Trojan football team and thanks for the weekly good luck picture.
Tomorrow is the day we have been looking forward to for quite some time now. Sydney flies in tomorrow with Gramma Crazy. We have missed her so much and tomorrow can't get here fast enough. When I talked to her on the phone tonight she told me "there's one more night mom". Hopefully we can get Kade out here some time next week and all be together again. For all of you who have children you can all relate to there being some normalcy in the crazy whirlwind that your day brings you when it is blessed by kids.
I will check in more often than once a week as many of you have let us know that once a week isn't enough.
Love and God Bless
Jody and Mike
November 14 Day 28
Mike had his bone marrow biopsy yesterday and that went well. We will hopefully hear the results of the biopsy some time next week. Having Sydney here definitely helps the time pass. Grandma JJ is going to come and see us next Friday and bring Kade with her. She will be here with us to celebrate Sydney's birthday. Mike has been really tired the past 2 days, but is doing pretty well. He still has bouts of the metallic taste in his mouth and different foods increase the severity of it. They decreased his Cyclosporin dose again, so this should help with the magnesium wasting.
Thank you to all of you for continuing to keep in touch with us.
Jody and Mike
November 18 Day 32
Hi everyone! It has been raining all day in Seattle and we are starting
to get cabin fever. With the weather nasty and me immunosuppressed our
options are limited with the things that we can do. However, Jody,
Congratulations to the Drummond Trojans. Great Job.
Special thanks to the Townsend teachers for their gifts and support. We also want to thank the Philipsburg sixth and seventh grade for the packages, they were great. And last but not least thanks for all the emails they really keep us going as it is getting tougher and tougher everyday to be away from home.
Take care and Go Griz
November 20 Day 34
We got the results back from Mike's biopsy and he is 100% cancer free. They will do another biopsy at day 80 and then every 6 months as well. At day 80 they will do a molecular test, which basically means that they just dig deeper in the haystack looking for diseased cells. More often than not they do find presence of the disease still. What this means I don't know. Our nurse, Georgeanne told us this and we got off on something else before I had a chance to ask her about it. That seems to happen quite often as there are always a lot of things to talk about when we see the team. One topic always spurs another question. They looked at 20 cells and all of them were female cells. They don't want to see any male cells present because this would mean that some of Mike's diseased cells survived the chemo. He had to start antihypertensive (blood pressure) medication yesterday too due to his blood pressure being too high (another side effect of the Cyclosporin). They just give you pills to treat the side effect of another pill.
It is supposed to snow tonight. We are hoping that it will. We would love to see some semblance of winter.
Big game this weekend. GO CATS !!
November 25 Day 39
We started our week Sunday night with the arrival of our son Kade David and grandma JJ. It was so nice to see them as it has been four long weeks since we have seen Kade. He has changed so much. His mother and I felt as though he did not even know who we were at first. It took a couple of hours and then he started to realize who we were. Grandma JJ flew back to Montana today. She was able to see a few of the sight in Seattle and the weather was nice. We can not thank her enough for all that she has done for us. We love you gandma JJ. I guess we will have thanksgiving at Robi's house. It will be nice Jody and I and the kids, Grandma Crazy, Robi, Eric (Robi's Boyfriend) and Ashley.
I have my weekly clinic visit tomorrow and I expect more of the same as nothing has really changed much. I am still getting a 7 hour infussion of magnesium. I have bouts of nausea that come and go and are unexplained and inconsistant. They tell us that it is typical so we do not get alarmed, I usually take some adivan and it seems to go away. I do however, think that it is from all the other drugs I am still taking. I guess I probably swallow. approx. 30 pills a day. It is great fun. I am starting to do a little work from the school here at the apartment, Sue and Janelle have been sending me things to work on. I guess they think I have had enough vacation and think I ought start earning my keep. It is great as I get to be involved with some of the goings on at the school. It also keeps my mind off of the fact that we will not be able to go home for another month and a half. Anyway that is about all for now. We hope all of you have a wonderful Thanksgiving.
December 3 Day 47
Our thanksgiving was great. Jason Veitor came out to spend it with us.
We ate dinner at Robi's house. Gandma Crazy,
I am going on 8 straight days of feeling pretty darn good. If we could get this magnesium situation under control I would feel a lot better. I should and I won't complain however. There is so much that I am greatful for. It is amazing how a persons life, attitude, perception etc. changes when you go through something as tremendous as we have.
We were finally able to celebrate Kade's birthday last night as we could not on the October 21 because he was sick and I was in the Hospital. We celebarated it almost two months late but it was great. Little Kade did not care.
Grandma Crazy is going home to P-Burg tomorrow. We are really going to miss her company. She was such a help to Jody and I and we can not thank her enough. We love you Grandma Crazy.
It looks like we will be coming home for good in the middle of January barring any unforeseen setbacks. I start to taper-off the cyclosporin (anti-rejection drugs, it is also the imniosupressent drug) on Sunday the 7th. I am really excited because it tends to make me sick to my stomach and it is also the sole reason for my body wasting the magnesium like it currently is. The taper is a long process as it is only a 10% decrease every five days. This is a very important time as the hope is not to get any GVHD (graft vs. host disease) I have had little bouts of it already but nothing to be alarmed with. If my progress continues then eventually I will be off the cyclosproin and my immune system can start to run like normal.
Take care to all of you
December 6 Day 50
Since the last update Sydney and Kade both got sick so Jody had to take them up to Aunt Robi's so that I would not be exposed more than I already was to the virus. I hope that I was exposed and my system was able to fight it off, but we will never know and it is way to risky to have them around. The transplant procedure is one big risk but an even bigger risk for me is contracting a respiratory virus. Many times transplant patients do not recover from the virus. The flu is running ramped out here in Seattle much like the rest of the country.
Friday I found out that my magnesium problem is getting worse so they put me on 9 hours of infusion plus the the 3 pills 4 times a day. It is great. The oral mag makes me sick and being hooked up to this pump all day is somewhat depressing. Hopefully one of these days my body will quit wasting the mag and the dose will be lowered.
Anyway, that is all for now. I have appointments all week next week so hopefully more good news will come up.
Take Care to all
December 11 Day 55
I got some good news today. It seems that my body is starting to absorb or at least not waste magnesium as much. They cut my infusion time down from 9 hours a day to 4 hours a day. I am pretty excited as being hooked up to that pump all day is not much fun. The oral mag that I am taking must be absorbing into the bloodstream better. The Doc's said that it would happen and so far they have been right about everything. God love Doctors. and Nurse Georgeanne of course.
Kade and and Sydney are still sick, so I will not be able to see them until they show absolutely no symptoms (cough, running nose etc.) It has been a full week now since Jody and the kids moved up to Robi's to isolate me from the viruses. Yes, that is right each child ended up with a different virus and I thank the lord that I was able to dodge both of them. I sure do miss them. Robi, Ashley and Eric have been great we cannot thank them enough for all that they have done for us. By the way Robi is getting married in September, so congratulations to her and Eric on their engagement.
We want to thank the kids at school in Philipsburg for sending all the cards and such, they are spirit lifters. I would also like to say thanks again for all the emails. We are getting a lot and from people we have not heard from in years. Old classmates etc. it is really nice to hear from them.
December 19 Day 63
A blessing came true yesterday as Jody and the kids were able to come back to the apartment. They were sick with the flu for the last two weeks and they were staying at Aunt Robi's and cousin Ashley's. Thanks to Aunt Robi and Ashely for allowing my wife and children to totally contaminate their house. Robi ended up getting sick but I guess she will be alright. I have thankfully been able to avoid the flu and cold so far. As previously stated, being exposed to those viruses is potentially deadly for me, as my immune system is not stronger than that of an infant child.
We are going to candycane lane tonight to look at all the decorations. It should be pretty fun and I am sure it will remind us of home. The weather has been great lately. Last night we slept all night with the window open. Pretty amazing.
Thanks again for all the emails we really cherish looking at them.
Take care to all and we hope you have a Merry Christmas and a Happy New Year. We are going to try to get away from Seattle for a couple of days so we are very excited about the possibility of that.
(Sorry that it has taken awhile to update the website as I guess Blackfoot changed their server and needless to say it took some doing to get up and running again)
December 29 Day 73
We just got back from our Christmas holiday. We were able to go back to Montana for a couple of days. It was awesome. We thoroughly enjoyed ourselves. It was nice to see family and some friends. We decided to keep it somewhat quiet about our possibility of coming back to Montana for Christmas as I still have to be isolated. It is critical that I do not come in contact with the flu. Anyway, we are sorry that we were unable to see all of our friends and family but the day of our permanent arrival home is drawing near. It looks like we will be coming home sometime around the 20th of January. I start all the pre/post test again tomorrow, and if nothing comes up, to Philipsburg we will go.
We left Sydney and Kade home in Philipsburg with grandma TJ. These next couple of weeks are going to be rather intense and we will have to clean our apartment etc., so we thought it would be easier to leave them home rather than bring them along. We have only been away 12 hours and we already miss them so. Thanks so much to grandma TJ and grandma Crazy for taking care of them for us. We are very lucky to have them.
Thanks for all the cards and emails, take care and have a good new year.
Jan 1 Day 76
I hope everyone had a great evening last night and that it was a safe one. (Hopefully there were no fights ha ha ha) Happy New Year to all of our friends and family. We spent the evening at Erics place (Robi's fiance), it was nice as he has a perfect view of the space needle. The city of Seattle puts on quite a fireworks display at midnight at the spaceneedle. It reminded me of the display that Butte puts on during the 4th of July.
We got some good news yesterday. 1) my magnesium infusion has been cut to only two hours a day. This is good because, soon I will be able to get the Hickman pulled out, and yes they just give it a big tug and pull it out. It is one of those things you really look forward to ya know. Kinda like the bone marrow biopsy that I will be getting tomorrow. It is like the night before a big game. It is total excitement. Like I said before I think everyone should have two or three biopsies. They are great fun. 2) we have been given a date of dismissal. Unless something comes up with the rest of my test I will be dismissed January 14th. Jody and I are really excited about coming home for good. I have had a few test already and for whatever reason I am scoring higher than I did before the transplant. I am sure Kara would say that it is because of her donated stem cell but who knows. An example was that my lung capacity was 101% of a normal man, my size and age. It is now 118% of normal, go figure. Anyway, I wanted you all to know where things currently are. There is a lot of football to watch so I will talk to you all later. Again, Happy New year
Jan 6 Day 81
Not much new to report other than it is winter in Seattle and we love it. We got 4 inches of snow in down town and it is comical for Jody and I to watch the people react. Everything is shut down. We have Seattle to ourselves if we wanted. It looks like the locals are having problems driving on the roads.
I have a clinic visit tomorrow and maybe the results of my bone marrow biopsy might be completed. I have completed most of the tests and now we just wait until the 14th for the final meeting with my team to talk about a long term plan. This could be interesting because I am going back to work on the 19th and that is that. I have not had any infusions the last two days and the magnesium level seems to be leveling off. Hopefully, then I can get my Hickman line taken out. I guess they do not sedate you or anything. They tell to look the other was as they give it a big ole pull and that is that. Sounds about as fun as a biopsy. I think Kevin ought to have a couple of these.
Take care to all and we will see you in a couple of weeks.
Jan 13 Day 88
We got most of Mike's biopsy results back, and he is a girl...at least his immune system is. This is great news, because it means his malfunctioning immune system is no longer, and his new one is up and running. We are still waiting for the results of the BCR able test, which is a molecular test. It takes longer to get the results back on this one. They should have everything tomorrow when we go for the consultation with the team for our get-the-heck-out-of-here workup. The past two weeks have been agonizingly long. Not having the kids here to keep us preoccupied and the anxiety for the day we get in the pickup and head home makes the days drag on and on. It has been a good 2 weeks as well though, providing some much-needed recooperation. The past 4 months finally caught up and I was making 3 tracks, if you know what I mean. We are all looking forward to getting our lives back and getting in to a normal routine. The other day when Sydney and I were talking on the phone I told her they were going to take Daddy's tubes out, as this has really been an issue for her. She knows that when those tubes come out it means Daddy is all better. She then asked me if Daddy's hair was going to grown back when they take his tubes out. All she wants is for everything to be like it was before, including Mike's hair. I can't say that everything will be like it was before. We certainly have all been through a lot, and life and those that we love has taken on a whole new meaning. So, to all of you, our friends and family that have been with us on our journey, Thank You.
The plan from here is for Mike to be followed weekly by Dr. Beatty in Missoula, with yearly appointments in Seattle. He has to be careful for the first year. They say it takes 1 year for his immune system to be fully functioning. At this time they will reimmunize him with all of the immunizations that babies and kids get, as his immune system is basically like a baby's.
Love and God Bless
Feb 10 Day
Well here we are back in Montana. I have been feeling great and I started work full-time three weeks ago. It is great to be back. I came down with some GVHD the day we got back to Philipsburg, so Dr. Beatty put me on predisone and it knocked it down right away. It sounds like I will have to take it for a couple of more weeks and then taper it back. He also put a stop to my cyclosporin taper. I guess I will start the taper again after I am through taking the predisone.
This is going to be the last diary entry for my website. It will be up and running, but there will be little or no activity on it. I have offered the site to the Fred Hutchinson Center as a tool for incoming patients to use as a resource for what's ahead of them.
Jody and I would like to thank all of you who have supported us through this difficult time and say we could not have done it with out you.
Take care to all and god bless
Mike, Jody, Sydney and Kade Cutler
|Thank you for your support. It means a lot to my family and me in this trying time in our lives.|