Mike

Hello all, I did not forget about you. I have not had a computer at home except the laptop and Bri's been using that to play Sims. So an update: Mike is doing well. He has clinic 3 days a week and so far his numbers look good. The dr. released him to eat in public restaurants and he's come back to the Springs a couple times. He finally got his XBox 360 Live to work so he's been distracted by that. Amanda, my sister, has been great. She stays with him in Denver while I stay down here and I go up every night. She will be heading back to NC on Nov. 3 so I will be assuming caregiver duties. He has a bone marrow biopsy scheduled for Nov. 4th to check the donor's cell growth. I will have more information after that meeting. He's still taking a ton of pills - for GVHD and infections. He's off the anxiety meds which is a good thing. Dakota, the dog, has been to Denver a couple times. He has anxiety attacks if left alone in a strange place so we don't leave him in Denver overnight. Bri's doing good. She is gearing up for the mission trip over Spring Break again. They are going back to San Diego so she will be very psyched.

Mike

Today is the day...Riki, his day nurse, said Mike has two birthdays - Feb. 14 and the day he received new life, today. So he will be expecting 2 parties - just a heads up :) She also said that since Mike is getting girls blood that he will want to shop for shoes and handbags which works for me too! The mall here we come - if he starts wearing lipstick I might be concerned. Anyway, she also said that his blood type will change b/c his current blood is A and he is receiving O so he can commit crimes and DNA will show that a female w/ Type O committed the crime - he's going to rob a bank JOKING! He won't feel well enough to shop or commit a crime. He's not sleeping well and he was sick this morning.

The blood is currently dripping. There will be 2 units so he should be done around 12:30 or 1ish. He will be released from the hospital on Monday and we commence our 100 days. Can I say what a blessing God is - Mike met w/ the financial guy the other day to discuss co-pays and out of pocket expenses. The procedure costs $150,000 and after Medicare and Kaiser pays their portions we are out $200. Then Kaiser picks up the hotel cost and pays him to be there!
Amanda, my sister, will be here on Monday evening for the month. We take the caregivers class on Tuesday. And his first clinic visit is Wednesday.

Bri went to Manitou Springs on a field trip and loved it. She wants to go to the Miramount Castle there which I hear is haunted. We are going to spend some mommy/daughter time together this weekend and go do that and then shopping (window shopping.) She is also going to help me get moved into the hotel suite. It should be a busy weekend. In case I didn't update everyone - Bri had the croup when she was sick last week. I took her to the dr. and she has teenage croup - not uncommon. She never had it in VA but here she gets it once a year :(

I will update more next week. Please do not call the hospital this weekend. Mike is not feeling well and I don't want to interrupt the sleep that he is able to get while he's here.

Hello, all. Just an update - we made it to Denver. Mike is in Room 3304 of the BMT (3rd floor) of Presbyterian/St. Lukes on 19th Street. His tel. # is 303/869-1514. He is not feeling well today so please do not call until tomorrow between the hours of 9 am and 9 pm. He does not have restrictions on visitors except no children under 18 and if you have been sick don't come. They put in another port on the opposite side of his chest today and gave him Fentynol so he's out of it - and it's wearing off so his neck and arm are in pain. He will get his chemo dose today, tomorrow and Wed. and then Thurs. is a day of rest and Friday - late evening or early Sat. he will get his transplant. He will be released from the hospital on Monday the 5th to the Staybridge Suites in Cherry Creek. Based upon how he feels is the visitor policy.

My sister flies into town on the 5th and will be taking the caregiver's class w/ me on the 6th.

Brianna developed a fever of 102 last night and I panicked for a minute - but this morning she woke up w/ no fever. I let her stay home from school just to catch up on sleep.

Other than that nothing is going on. I will update later in the week or early next week. Call me before coming to visit please.

Bri's birthday

My baby girl turned 13 yesterday. I remember the day I found out I was pregnant - I was a little scared. She is a little bit sugar and spice and a lot of things nice - a little of Mike and little of me and a whole lot of her! I cannot believe my baby is a teenager - she is in 8th grade.

She invited a bunch of girls to hang out at the mall and back here for a sleepover outside. She had a blast - just the type of birthday party she likes - lots of friends, candy and fun!

Now she's tired and cranky and watching a movie in her room before she falls asleep from exhaustion.

Mike

This is just a short update since most everyone knows. Mike is cancer free as of right now - all reports came back clean. He is scheduled for admission to the hospital on Sept. 20th and be released on Sept. 25 - that is the current plan. He will be living in Denver for a minimum of 100 days which will put us through the New Year.

I am very excited about this but also very apprehensive because it's a huge procedure. It sounds like a walk in the park but it's not. When I get answers from the team I will post them to everyone. My plan (you all know how I love to plan) is to be the primary caregiver during the day and then have someone relieve me for a short time in the evening so I can work and take care of Bri and then go back to Denver for the overnight duties and daytime duties. I'm thinking I'm superwoman enough to do this through the fall and winter. I might need a serious vacation when this is all over but I'll worry about it later.

Bri started her support group and she's made a friend. i was a little concerned b/c all the kids there the first day had a parent who died so I wasn't sure she would be ok. She is settling into school and everyone at the school knows that it might be kind of rocky for her. She will be going on the church retreat in 2 weeks before Mike goes in. My baby is not a baby anymore. She will be 13 on the 25th.

Mason doesn't call very much so I'm not sure how he's handling it if at all. The last time he called was b/c he was out of phone minutes and xbox 360 live minutes. His grades seem to be ok so hopefully Mike will be able to see him graduate in May.

I am as always fine as a fiddle in the rain on Friday! Doing life as life does it. Work is ok - trying to stay ahead of the game so I don't get fired (even though I joke about it every day.) I'm back to running with the dog to lose weight. All is well right now in the Holliday home!

Mike

Just a quick note - Mike had Rituxin today, his PET scan is scheduled for Wed. and we're supposed to have a dr. appt. w/ the transplant team on Thurs. but the hospital wants to do the bone marrow biopsy then so I'm waiting to hear about rescheduling. Then Thurs am he is having labs down and sometime next week he needs to have CT scan and chest x-rays.

They have requested the bone marrow from the donor so all is a green light unless something comes back positive for cancer regrowth. I need to take the caregiver's class sometime before the transplant. I will update when I have more info.

Bri is back to school and involved in a ton of church activities. My firm bbq is Sun, the 30th, she has back to school night on the 1st and then a support group meeting on the 3rd.

That's it for now. If you're reading this and didn't get the email can you please send me your address so I can update my address book.

Update today

A lot has happened - needless to say after all the hoopla we received a call from RMCC (the original transplant team) on Friday telling us they've reconsidered and will do the transplant which is good b/c I received an email from my insurance saying they wouldn't cover the other facility so we'd have to go to Seattle or Houston.

We have to have a series of tests done - stress tests on organs, EKG, spinal tap, and Mike is doing a round of Rituxin (chemo drug) on Mondays. The team said if they get the donor and everything is a go then we go in about 4 weeks. We still have to go through the caregivers class and a bunch of other stuff but as of right now it's a go.

Bri is going back to a support group for kids who have a terminally ill parent. She starts next month. She has started back to school - 8th grade. Anyway, thanks for the prayers and thoughts and I will keep you all updated.

Update

This is even newer than the last email. Mike was rejected from the transplant program w/ RMCC so we've applied to the University of Colorado Denver for their program. If they reject him or he doesn't qualify then we have to go to Seattle or Houston - that is not even close yet. We talked to the University people today and meet w/ them on Monday, the 17th. We are taking it one day at a time and will update everyone as info becomes available.

...

So the latest on our saga is this: We are switching oncologists and the earliest the new one can see us is June 29th so we're up in the air until then. Mike's biopsy is scheduled for tomorrow morning so we will have some answers sooner rather than later. His dentist appt. is Thursday so we will have all the major evals done this week.

Scott is coming next week (Mike is looking forward to chilling w/ friends.) Mason is still here and not driving me insane. Bri is done w/ Vacation Bible School and on to enjoying the summer being a bum! Nothing major going on right now - just life. Thank you everyone for the prayers and thoughts. I know everyone has issues right now so I appreciate all the support everyone has given us.

The waiting...

We met with the dr. today. The results are in: His bone marrow biopsy came back as negative so there's no cancer activity there. That is a good thing since they will be replacing his bone marrow with someone elses. His PET scan showed that the mass (tumor) on his right side which sent him to the hospital for treatment is gone (no activity on his right side where the tumor was) but now there's an enlarged lymph node on his lower left side going from front to back which according to them has cancerous activity. Dr. Logsdon wants to do a needle biopsy to test the fluids in the node to see if it's cancerous or just inflamed from an infection/irritation. That should be scheduled this week.

We'd had a falling out with the staff at Rocky Mountain Cancer Center and we may be switching dr. mid treatment. The chemo nurses today gave me seven kinds of grief over the dr. ordering a port CBC without an appointment. One thing led to another and Mike stormed out after "security" was called. I have spoken to the facility supervisor and the nursing supervisor to see what we can do. I advised them that he won't be going there for port CBCs anymore and we may decide to switch drs because of the nursing staff. We chose Dr. Logsdon b/c of his experience with Mantle Cell Lymphoma but if I have to go "babysit" the staff to make sure they're not hurting him and doing what they're supposed to do w/o calling the cops then it's not worth it to continue getting treatment there. The dr. is going to call me tomorrow.

The biopsy should be scheduled this week and hopefully will get the results back. IF it is cancerous then we can't do the transplant until it's under control and we are out of drugs that are known to work. It also means that his cancer has grown back quicker b/c this mass wasn't there in March when they did the first PET scan.

Mike has a dental appt scheduled for next week (Thank you, Jen) which is required for the transplant. I've talked to the transplant team and we will wait for the results of the biopsy before proceeding with the transplant.

Mason is still job hunting. Hopefully he will have a job this week. Bri is volunteering as a counselor for Vacation Bible School @ church. I'm still doing my best Superwoman impression (just not this afternoon when I had a moment of weakness - kryptonite is a *****) Otherwise, life is under control! :)

My so called crazy life...

News? News? News? Mike did his PET scan - waiting for the results of those. He did his bone marrow biopsy and we are waiting for those results. Apparently his blood pressure dropped to 90 over 40 during the procedure so they were concerned. Other than that we're hanging out doing nothing - waiting for tests. Mason is here and running me crazy - he wants a job so he's filling out applications and then going to the skate park. Bri is volunteering as a counselor for VBS next week. I am going crazy (oh, wait - I was already there.) That's it!

Just a note...

Just an update on life... Mason arrived yesterday and is jobhunting so if anyone locally knows of a job a 17 year old can do let me know. We are going to get him a bus pass so he does not have to rely on the cab of Tonya to get him around (since we all know I have no life except as a cab driver.)

Mike is still not feeling well. He has good days and bad days. His PET scan is scheduled for Wed. at 8 am and the bone marrow biopsy is scheduled for Thurs at noon. He will need a dental exam, a spinal tap and an echocardiogram (I think that's the right one,) before he does the transplant. We will meet with the transplant team again probably within the next two weeks. We will attend the transplant class on June 23rd. After that we will have a timeline of expected dates.

I have been reading up on the side effects and the possible complications. I will need to give the hospital a list of caregivers when the transplant is scheduled. Again, please do not make arrangements without consulting me. And if this is too stressful for you please do not volunteer. Mike needs to focus one hundred percent on this (and nothing else) once we get started. He does not need any stress or negative energy.

I am hoping the month of June is going to be quiet and Mike can enjoy life before undergoing a life altering event. If you would like to call/email/txt/visit feel free. If you are visiting please let me know in advance. I thank you all for all of the support and help. I don't think we could have come this far without it and I know as a caregiver we can't go any futher without help. Even superwoman needs a break (I'll sleep when I'm dead - oh wait, that's a country song!)

This is the news at 11 portion

This is the big email that everyone has been waiting for. We met with the transplant dr. on Tuesday. Forgive the tardy update but I've been depressed (annoyed, angry, stressed...whatever you want to call it.) Dr. Bearman (transplant dr.) said that there are 4 or 5 mismatch donors - 9 of the 10 markers match. That increases the risk associated with everything involved. Dr. Bearman wants a PET scan and a bone marrow biopsy to see how sensitive the cancer cells were to the chemo.

The PET is scheduled for tomorrow but Mike doesn't feel good so I'm going to move it. The biopsy is scheduled for next Thursday.

Mike has decided to do the transplant if he's eligible (which is determined by the PET and biopsy). If the chemo didn't work well then they won't do the transplant - if it worked well and he's as close to remission as possible then they will do the transplant. They would admit him to St. Lukes in Denver in 3 to 5 weeks after the results come back (late June or early July.) He would spend a month in the hospital in near isolation. They kill his own immune system and inject the donated marrow into his system. Then he would be released to a furnished apartment a block from the hospital for 2 1/2 months. Dr. Bearman said that there is a 10 % chance of dying in the first 3 months, then another 10 % in the next 3 - 6 months and another 10 % in the 6 months to a year phase.

The stay in Denver is where I am going to ask for volunteers. I have not figured out how to clone myself (shock there) and I cannot take 3 months off work (not even two months) and someone has to take care of the dog and the kids and the bills. You can stay as long or as short as you need/want to make it. The only thing I ask is if this situation has stressed you out then please do not volunteer. Mike feeds on the positive energy around him and if you cannot put a smile on your face and pretend everything is going to be ok then don't come. Every time I walk into his hospital room I have dried the tears (not that I've done much crying.)

Mike looks sick. In VA we could pretend (or hide) the fact that he is sick but he looks sick now. Some of you have seen him and it's hard to be positive when you see the evidence. There is no pressure for anyone to come visit. God thinks I'm superwoman so if I have to say I have this under control then it would be ok. We should have a timeline/dates by the middle of June so I will let you all know. Please do not feel you have to do this and don't make plans without consulting me.

We met with a psychologist who says we have to participate in a class once this has been finalized. She said this is the hardest thing we will ever do in our lives. We also met with a social worker who put us in touch with some grants to help financially.

Mason is scheduled out on Sat. so we will see what happens. Brianna made the honor roll for 7th grade for the entire year. She will continue to do youth group stuff until life gets in the way!

I want to thank everyone for the thoughts and prayers. They are appreciated and welcomed and even if I don't call you back or respond to an email I am thinking of you all. Feel free to call/txt/email/visit. The month of June should be a fairly quiet one as we prepare.

A Quickie

Mike went in to the hospital today for a transfusion - he got a bag of platelets and 2 bags of red blood. They always give him pre-meds so he got benadryl and a bunch of other "stuff" We went in at 9 am and left at 4:30 pm. Hopefully this will help w/ his dizziness and shortness of breath.

Next is the dr appt on Tuesday. Not sure when the PET scan is. News at 11..........

Another day

Well, Mike had his dr. appt. today. First his port didn't work so they had to spend 30 min. trying to flush it. Then we saw the dr. and he is going to schedule a PET scan (hopefully for next week.) Mike developed a rash all over his body that we thought was the detergent but it might be the antibiotics he was taking to avoid the hospital visit. We get home and got a call from the dr. office and he needs to go to the hospital tomorrow morning for a blood transfusion b/c his red blood is too low which could explain why he's dizzy and short of breath after walking up stairs.

We see the transplant team on Tues and they want us to see a psychologist while we're there (a requirement for all transplant patients.) We will hopefully have some direction by the end of next week.

I bought Mason's ticket and he will be out Saturday, the 30th. He flies into Colorado Springs airport @ 1:30. The airport is about 20 min. from the house. Bri's last day of school is Wed. and she's lining up events for the summer. She wants to try out for the local soccer team so we will see what happens.

Everything else is under control (sort of.) The weather has been nince enough to sit on the patio in the evenings and relax. I will update more next week. Feel free to call or email.

Today...

Mike is home from the hospital. He came home on Friday. He goes in on Fri for his CBCs and the dr. is going to schedule a PET scan. We see the transplant people on the 26th still. Mason is still planning on coming out once I buy the ticket.

Bri is out of school next week. She brought her grades back up to the honor roll. I can't believe my baby is going into the 8th grade.

I'm getting over being sick in time for the great weather in Colorado. It's sunny and nice (now it's dark and stormy). I am still running with the dog so he's getting his exercise too.

That's all for now. Mike in nadir this weekend so he may not be feeling well but you can always call or email.

News

Mike is in the hospital and not doing well. He's having a hard time w/ this round. I am sick this week (not fun and had to go to the dr. so Mike wouldn't catch something.) He will be out this weekend.

His appt is on the 26th so I'll have more info. Mason will be out on the 29th and Bri is out of school on the 27th. Life in the Holliday home is about to get CRAZY!

What a month...

Mike goes into the hospital tomorrow morning for his last round of chemo. We meet with the transplant team on the 26th. We will have some direction by the end of month - just in time for Mason to arrive on the 29th. Mike hasn't rebounded as quickly from this last round - his joints hurt and he's cold all the time. The dr. is going to start antibiotics as soon as he's out of the hospital to try to avoid a ER visit next week.

Thank you to everyone who has called/emailed/IMed to wish me a Happy Mother's Day. I hope you all had a good day too. Bri's last concert was great. I will try to post it here (or on YouTube.) She is out of school on the 27th and then off and running to summer events.

I will update as more info becomes available.

News....

Mike was supposed to go in today but he had CBCs yesterday and his platelets were down so the dr. doesn't want to do chemo. He is going in next Tuesday. This is good because Bri has a band concert on Thursday and this will be the last concert in middle school.

Quick

Quick update - talked to Betsy @ RMCC and she has the results of 2 donors back and 2 more in the lab so she'll have them back next week. Next week she will call me to schedule an appointment to see the transplant dr. Mike's regular oncologist couldn't give us the #s (as far as survival/prognosis) of Mantle Cell Lymphoma patients b/c it's so rare in people Mike's age.

Mike's buddy, Scott, is coming to visit sometime this summer. Mason is expected out on May 29th.

NEWS

Hello to all, this is an update, only an update - no need to panic! We saw the dr. today. Still no word on the transplant donor. I have left a msg. for them. Mike's dr. says he has one more round of hospital chemo before he will do another PET scan. I thought there was one more full round but this is it - another round of MXT/Ara-C and then possibly another ER visit. The dr. is going to start Mike on antibiotics as soon as he's released from the hospital so maybe we won't have the ER visit.

There are a couple of new experimental drugs out on the market so if we don't do the transplant then there's really no concrete drugs that will work so the dr. says maybe several months - possibly a year until it gets bad again.

So Mike goes in on Monday for labs and then Tuesday to the hospital so he can go to band practice on Monday night. His #s look good and he's feeling ok so that is a bonus.

Other than that nothing else is going on. I will update after the next dr. appt or when I have more info.

new....

Hello again - nothing new is going on. Mike had cbcs scheduled for today but he isn't feeling good so I've moved them to tomorrow. No fever but he slept until almost 11 which is very unusual for him. His back/neck/hips are hurting and he's miserable so he's hanging at home watching movies. I think he has band practice tonight - not sure.

Bri signed up to be a counselor for vacation bible school this summer w/ the church. She has a lot going on. Her band concert is in May so I will upload the DVD when we get it.

Otherwise news at 11.

Last Night

Mike watched his Capitals win against the Rangers to continue the Series. My Red Wings swept the series so no worries there (except the grief I get at work about being a Wings fan instead of an Avs fan.)

Bri had a sleepover w/ a friend and we probably won't see her today. Today it is cloudy and yucky in Colorado so I'm going to Flylady my house and then go out to celebrate Carlene's birthday tonight.

Feel free to call the house or send emails/txt. Mike is feeling a little under the weather today and still in Nadir so he has to take it easy. He doesn't have a fever but he's got some nausea, sweating and some pain.

You may get more random stuff on the blog than the emails but I think this is a great way to chronicle what is going on w/ all of us (except Mason in some blogs - because I don't know what's going on w/ him.) Disregard stuff you don't want to know.

Updates

I figured this might be easier than the updates I send out on a regular basis. This way everyone gets to see all of the information - rather than some. Feel free to email me at tleaholliday@hotmail.com or Mike at bmikeholliday@netscape.net.

Mike - dr. appt. yesterday and his numbers were low and he needs cbcs on Monday. His next hospital visit is May 5, 2009. He had a rough week in the hospital last week so we'll see how this week goes. He's in Nadir now (low blood count) so he should avoid crowds, sick people and public places.

Brianna - going strong on the honor roll for the last month of school. I cannot believe my baby is going to be 13 in September. Man, I'm feeling old. We are trying to figure out what she's doing over the summer - no concrete plans yet.

Mason - supposed to be out on May 29th for the summer if I buy the ticket. He says he wants to come out so who knows. Don't know how his grades are or if he has to do summer school. The one blessing in my life is I don't have to talk to his mother ever again.

Me - work, work, work...hospital, hospital, hospital...home, home, home. This is my schedule. I have taken to jogging with the dog and I'm down 12 lbs. I have 18 more to go. The weather is nice so I can drive my car again. For those who don't know I own a silver Mazda RX-8 but I can't drive it in the winter time.

Dakota (the dog - an Akita) was sick last week while Mike was in the hospital so I came home to poop/puke/misc. to clean up. I'm slowly steamcleaning my way through the house. God Bless Flylady for 15 min. a day!

Other than that nothing eventful. Work has settled down and Bri will be out of school at the end of May. Her mission trip was great. She loved San Diego and wants to go back. I will update the information on the blog for the group.