april_showers_john_doyle_470-1Saturday, 22nd

Today, we said goodbye to Spring Break and handed the kiddos back over to the grandparents. It was wonderful to have the kids here and have family time. We hung out and watched movies, played Yahtzee. It was good. It was a long drive to try to meet the parents about halfway, and Mark wanted to go along for the ride even though it went a tad bit outside our 20 minute safety zone. It was rainy the drive home (hate driving in that!) maybe Mother Nature knew we didn’t want to say goodbye to the kids.

Friday, 21st

Yesterday, we had our first clinic appointment. Everything went well. They had time set up for Mark to get platelets, but the counts held and he didn’t need to get any. We got to ask the nurse practioner, “Now what?” and the answer was pretty much wait and see. I asked how long, approximately, do patients have to stay local and she said they never let anyone got before day 60. So we will have to stay in St. Louis and our rental until then. He is supposed to take his temperature twice a day, keeping any eye out for any infections. Even though his counts are great, they are great for a post-transplant patient at this stage in the game. They aren’t anywhere near where they are supposed to be to be considered not to be immune-comprimised. (How many “to be”s can you fit into one sentence?) He is allowed out of the house, but he has to wear his mask. He has been taking his walks, about a block (not quite around the block yet) and back. But still gets tired really easily.

Wednesday & Thursday, 19 – 20

MJ here: Well, the past few days have been an adjustment. I felt pretty good while I was in the hospital, but now being an out patient fatigue and nausea are the main issues. There is only so far you can go in a hospital room and one or two laps was not enough. Walking around the house takes far more energy, and kids were a blessing and they tired me out quickly. Nap time! The Qigong and meditation helps both, but there are times I just get overwhelmed. Terri hates it when I get to that stage, and I’m no fan either. Looking for the balance.

Something I did not expect was the nausea, I thought that resolved in the hospital. Nausea is a not fun, as it interferes with wanting to eat. And I have to eat! It also drains the energy out of me. I’m pretty sure why I’m getting nauseous. I went home with a small grocery bag of meds. Most of them are in the morning, so I’m trying to space them out, eat a little, then take some more… wash/repeat. Sounds easy, but nothing goes as planned. I will get into a routine, it’ll just take a while. Hey now!… back to Terri.

Meds he is on currently: anti-nausea, anti-fungal, pain med as needed, anti-rejection, anti-viral, anti-reflux. Lots of anti-s.

Blood Counts from yesterday:

  • white blood cells – 5.5 (up 1.8)
  • ANC – 3630 (up 411)
  • hemoglobin – 11.6 (up 0.1)
  • hemocrit – 32.3 (up 4.3)
  • platelets – 28 (up 12)

With the platelets, he got infused in the hospital if they were below 10. As an outpatient, he will get infused if they go below 20. I am not sure what the number is for hemocrit as an outpatient to get blood.

Next set of appointments is on Tuesday, April 2nd for labs and transfusion, if needed. For the next couple of weeks, he goes into clinic about every 4 days. On Friday, April 5th is the first post-transplant bone marrow biopsy. (Yeaa! ~ mj)  Those come at days 30, 60, and 90. One of the things I know they are looking for in the biopsies is the percentage of donor cells, to his own cells. You want to see a high number of donor cells.

On the what the heck are we going to do with ourselves while we are waiting… I will be working every minute that I can. We got the internet speed at the rental increased (it was less than 1.0 mb before) so we will watch some movies, Star Trek and spend sometime surfing in Second Life. The next couple of days we are watching a live surfing competition going on in Australia (go Kelly! but my girl Sally got knocked out too early) in the late afternoon and evenings.

But that’s all for now, Happy Easter,
Me ka `oia`i`o
~terri

imagesI’m GFH… I’m really GFH !!! Right now! No more waiting, we are stepping out the door! … OK… I’m in a wheelchair… It’s a long walk, but I’m GFH!
-Mark’s Facebook page

GFH = Get the eF out of the Hospital <or> Go the eF Home

Yes, Ladies and Gentlemen, Elvis has left the building.

And if that is all too cryptic, Mark has been released from the hospital!

He calls me at 9:30ish this morning and says, “They are working on discharging me.” After I stopped freaking out, I scooped up the kiddos and headed to the hospital to bring Daddy home. Of course, for anyone that has any experience being in the hospital, knows that this is not a quick process. I think we actually left about 5pm.

They wanted to give him platelets before he left and some magnesium. Both IV and took about 4 hours. Then there is the crap load of prescriptions that they gave him. I stood in line for 20 minutes at the hospital pharmacy to pick them up. And then there was just a lot of waiting.

So what now?

We hang out. Go back to the hospital frequently to have blood drawn and tested. Our next appointment is Friday. After “labs” (that is the blood draw and tested), we have an appointment with the nurse practitioner in his doctor’s office and I am hoping she will give us some clear answers of “What now?”.

I am having a beer by myself to celebrate because Mark can’t have beer or wine since they have yeast in them. But he is sitting next to me at the table. Out of the Hospital!

So if you want to know the final hospital blood counts:

  • white blood cells – 3.7 (Mark says as long as he has been keeping track [7 years?] they have never been this high) (up 1.0)
  • ANC – 3219 (up 897, and they were only 260 when we checked into the hospital)
  • hemoglobin – 10.5 (up 0.5)
  • hemocrit – 29.5 (up 1.4)
  • platelets – 16 (same)

So, I am not quite sure why he got platelets, since it was over 10. But maybe it was a “just in case”.

I probably won’t be posting everyday anymore. But if there are any update or news, I will keep you in the loop about Mark’s progress. The fight is not over, we still have a lot of steps to take until we get that final thumb’s up from the doctor. And I know that I haven’t responded to all your comments lately. It has been a crazy couple of days. But I read and take every word to heart. Knowing that you are out there and reading and thinking of us and wishing us the best has kept me going.

I know I have said it before, but I don’t think I could say it enough… Thank you from the bottom of our hearts and souls for your prayers, positive energy, vibes, juju and pixie dust. We truly believe that every who was thinking of him/us made an impact and helped carry us along.

Mahalo,
~terrii

Photo Journal of the GFH:

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In the center in the back is Nurse Barb, who has the best sense of humor and is a great nurse

In the center in the back is Nurse Barb, who has the best sense of humor and is a great nurse

Crossing the bridge from the hospital to the parking garage

Crossing the bridge from the hospital to the parking garage

We have officially left the hospital

We have officially left the hospital

And we are outta here!

And we are outta here!

 

 

 

430579_10150694001216093_1009007648_nMonday

That is me doing my happy dance! Those are some super-stemmies we got.

White blood cells – 2.7 (up 0.8)
ANC – 2322 (!!!!!) (up 726) (and over 1500 2x)
Hemoglobin – 10.0 (down 0.3)
Hemocrit – 28.1 (up 1.0)
Platelets – 16 (up 6)

First, the ANC going up super-speed! I really expected that one to just creep up. But BAM! there it is! (knocking wood, knocking wood) Second, no infusions! Third, doc said today that he thinks Mark will get out tomorrow or Wednesday.

Honestly I think Wednesday is more realistic than tomorrow. But, if they kick him out, they kick him out. It is funny to get the different stories of what really goes on and what to expect that we get from the doctors and then from the nurses.

He went for a walk with Caitie today, no hand rails or anything. Then, got on the stationary bike for an equivalent time of another 3 laps. Caitie gave Daddy 2 stars today.

They took him off the IV antibiotics. They (the nurse) said want him off those for a day or two, to make sure his brand spanking new immune system is kicking in and there is no scary bacteria hiding out in his system. He should be off the IV completely. Everything he needs to take will now be in pill form. And no more growth factor injections.

He is joking and laughing with his nurses and doctors and acting more and more like himself everyday.

So, let’s see if I can remember what he is on. Tacrolimus – anti-rejections. An anti-fungal, an anti-viral. And I think Ativan for nausea and Oxycodone for pain as needed.

ANC, check. Eating and drinking, check. Moving around easily, check. Off IV fluids, check. No fevers for 24 hours prior to discharge, so far so good.

So, YAY!

The kids and I went to Applebee’s for dinner (Conveniently located on the corner across the street for the hospital) and when we got back, we found MJ had been watching George Carlin videos and laughing his head off.

 

I can't keep up with them.

I can’t keep up with them.

I was supposed to be timing their lap, not taking pictures. Oops.

 

Kai and his new buddy J.

Kai and his new buddy J.

J.’s mom and I have exchanged phone numbers. They visit our hometown often and so, maybe, the boys can get together and play video games or whatever it is little-big boys do.

IMG_0609

Whoops! (and this is after I scrubbed as much black off it as I could)

Although it didn’t snow as much as predicted, I am going to guess 5-6 inches, the snow plow went by and buried my car. Luckily I have a great landlady and she enlisted two young men to come dig us all out. I also had to have her come by and reset the circuit breakers in the basement, because Caitie never got the electrical outlet lesson that said that hanging a necklace off the nightlight in the bathroom was a bad idea. Yeah, CRACK! POP! Originally, I thought she had electrical burns because her finger tips were black. But she said they didn’t hurt and the black all washed off. Whew! Scared the crap out of her and then me too. I was sure we were headed to the emergency room. Lesson learned and little problems in the end.

I am also trying to coax my landlady into getting a brief bump in the internet for the remainder of our stay. It is currently at less than 1 mb. Allthough that is fine for email, and surfing the web (slowly). It’s not going to cut it for both Mark and I online at the same time, and more importantly me trying to work from the house. I need to connect to the server at work and download/upload files. I haven’t been able to do that, without waiting an hour for a file to download. It hadn’t really been a problem before since I was doing most of my work at the hospital and their internet service was a little better. Small problems.

I am looking around the duplex, trying to figure what I need to do before I bring Mark home. And how we are going to get all his stuff that has made its way into the hospital back out of it. Oh well, little problems. 🙂

Also, how am I going to wean Kai off of Cartoon Network?

Aloha!
~terri

Caitie taking Daddy for a walk

Caitie taking Daddy for a walk

Sunday

Not exactly snow-pocolypse, but yucky just the same. Heavy wet snow. Kids and I spent the morning at the hospital, and then left about 1pm, just in case the snow storm was going to be as bad as they said. We got there in time to say Goodbye to Tim. It’s always too long between visits with friends, isn’t it? It’s still snowing, they say it will snow tonight and some again tomorrow. Oh, yay! Hellloooooooo? Spring… where are you?

And the rest of the day we have been hanging out, awaiting the number game.

White blood cells – 1.9 (up 1.0)
ANC – 1596 (!!!) (up 795) (and over the 1500 mark 1x)
Hemoglobin – 10.3 (up 0.6)
Hemocrit – 29.1 (up 1.1)
Platelets – 10 (down 3) (boo!)

So what does this mean? We’ll start with the bad news… He got platelets today. Number is just on the edge, and better safe than sorry. And no reaction, so that’s a good thing.

Good news! ANC has hit that magic number of 1500+. One of the requirements for being discharged is ANC has to hit 1,500 twice. Plus they have to judge that he is fit to leave the hospital. Up and about, walking and eating and drinking. They don’t want to release him and then have to re-admit him a day or two later because he wan’t quite ready to leave.

I am seeing a spark of light at the end of the tunnel. Oh, don’t worry, I am knocking on plenty of wood. But, oh my god, to see that number pop up! I will be holding my breath all day tomorrow waiting.

On the food front, there was fruit for breakfast, chicken noodle soup for lunch, and he was ordering teryaki chicken and rice for dinner. His goal is to get on the treadmill tomorrow and start building up his stamina/endurance.

And Caitie lost a tooth, so everyone has news!

Thank you all again for your continued support and positive vibes being sent Mark’s way.

Mahalo,
~terri

 

Mark and Tim

Mark and Tim

Tim, Kai (the goofball), and Caitie

Uncle Tim, Kai (the goofball), and Caitie

Caitie and Uncle Tim at dinner

Caitie and Uncle Tim at dinner

 

 

 

images-1From Mark’s Facebook page:

Just spent the last 3 days with my brother from another mother, aka Tim Kelly. It gave Terri Loibl Gagnon a much needed break and to go be with our kids, and me much needed male bonding time. Jerod Quinn stopped by today too to chat and watch some March Madness. Now Terri is back with the kids. It was a very good day to cap off a great three days. Thanks Tim for hanging with me!

I thought you might appreciate hearing from the man himself.

We made it back ahead of the storm. The kiddos think this is a great adventure and have set up camp in the basement. They really like seeing Daddy and Daddy really likes seeing them. Kai even made friends with another boy who must have been with relatives and they hung out in the Family Room at the hospital and bonded over MineCraft. Kai is really hoping the boy will be there tomorrow too.

So, drumroll, please…

White blood cells – 0.9 (up 0.2)
ANC – 801 (!) (up 259) (we are shooting for 1,500)
Hemoglobin – 9.7 (up 0.2)
Hemocrit – 28.0 (up 1.8)
Platelets – 13 (up 8)

Did you notice all those ups? Yay, stemmies! Make em go up, up, up! And no transfusions today! MJ felt pretty good. Tired. But his doctor said that as his counts are going up he might not feel so hot. I assume that is a his body working so hard at healing itself, kind of thing. And he ate some chicken noodle soup for dinner. So far his stomach seems happy with that.

I can’t think of anything else. Of course, I may just be brain dead. Oh well, if there is something I forgot, I will just have to share it with you tomorrow.

~terri

209161Friday

Can you believe it has been 2 weeks since transplant? Them stemmies are doing their thing and counts are slowly creeping up. Except for platelets, I don’t know why they are being so stubborn. So numbers for now:

White blood cells – 0.7
ANC – 532 (!)
Hemoglobin – 9.5
Hemocrit – 26.2
Platelets – 5

So all the numbers went up, except the platelets. And yeah, he needed a transfusion of those today.

It is weird not being there and seeing what is happening first hand. And I am trusting the reports that I am getting. For all I know, the boys are cracking a 6-pack while they watch basketball. I couldn’t get them to either confirm or deny that.

Tim was awesome (was there ever any doubt) and went grocery shopping for Mark today. So add to Mark’s good pile, he is eating. Did all the daily routines and chores. And I can tell when I talk to him, that he is sounding more like himself again. They found a medication to help with his GI tract issue, that is actually helping, so he is more comfortable and that is improving his mood immensely.

There is a snow storm headed this way this weekend, so I am headed back a day early (hello? Mother Nature meet Spring, Spring meet Mother Nature). The kids are excited to go see daddy. And daddy is excited to see them. And I start too many sentences with “and”.

MJ has one of his favorite nurses back this evening, So while we were family Skyping tonight, Judy is chatting it up in the background, being part of the conversation. It was funny.

I don’t think there is anything else to report, but at this time, mellow days are good days.

So, kipa hou mai tomorrow!
~terri

The shirt says "MY DAD ROCKS"

The shirt says “MY DAD ROCKS”

Thursday

Lucky 13 🙂

From the man himself, “It was a pretty good day.”

It was off to a great start with the arrival of Mark’s friend, Tim. For those of you not in the know. Tim and Mark are super-tight and have been friends since high school. Tim is out for a visit for a few days and probably as good of medicine for MJ as any he is getting. (Hi Tim! You’re groaning aren’t you? You are.) I meant to get a picture of them this morning and just plain forgot. They hung out and guy-bonded over basketball and who know what else, cuz I bailed. 😉

I won’t keep you in suspense – we had ANC today! Woo hoo! Let’s all rap on our wooden blocks together to make it two days in a row.

White blood cells – 0.3
ANC – 210 (!)
Hemoglobin – 8.6
Hemocrit – 23.8
Platelets –  7

Those of you starting to get the hang of this thing will notice that hemocrit and platelets were below “acceptable,” so he got platelets and blood today. The platelets came in the afternoon, no reactions. Yay! Blood is tonight.

He did the usual walk, but with Tim as his escort. (Dude, did I say thank you yet?) And more moves towards the immediate (Get the Ef Out of the Hospital) goal, they are moving some of his meds from IV to pill. That’s big. You will just have to take my word for it. MJ also decided to step down on the pain meds from the dilaudin to oxycodone (I think I am spelling that right). As of this evening when I last spoke to our hero, he hadn’t had any dilaudin today. Just need to find the right dosage so he doesn’t get too looped on em. He was a tad buzzed when I got to the hospital this morning. But, he was awake most of the day and eating… docs are pleased. (Please no jinxing anything!) We seem to be moving in the right direction.

Of course, I am taking this report on faith. Maybe the guys popped a 6-pack while they were watching basketball (Hmmmm????) I am extremely fond of Tim, but I think I was gone within an hour of his arrival. I took major advantage of his visit (did I say thank you yet?), and headed back home to see the kiddos. I got to surprise them at school, so that was cool. Next week is Spring Break, so I am going to take them back to St. Louis with me on Sunday to be able to visit with Daddy (and give Grandma and Grandpa a little break) and hopefully get there before Uncle Tim leaves, cuz they love Uncle Tim.

So for the next couple of days my updates are going to be second hand, but I get to hang with the kiddos and Mark gets to hang with Tim, and all is good.

Laters!
~terri

This is my yet-to-be-named penguin, who is awaiting his jet pack, that watches over me, which my brother gave me.

This is my yet-to-be-named penguin, who is awaiting his jet pack, that watches over me, which my brother gave me.

Wednesday

Aloha! *waves*

Yay! The server is up! Good server, nice server. 🙂

I am happy to report that I have no real news. Nothing significant happened today. Although the dreaded mouth sores did reappear, they were nothing like the ones from Day 6/7. I had to ask if they were there. Not one complaint about them.

Physically, he felt about the same as yesterday. Still taking the Ativan (nausea) and Dilaudid (pain) meds. But went for his walk and shower. Bet some of you never thought you would know about Mark’s shower habits. Be grateful I don’t share everything. We will leave him with some dignity.

He was awake most of the day. I got some work done. We had a mini Star Trek marathon. He was even in a good mood most of the evening. He says he is starting to feel better. And he told me that tonight, so that means something.

ANC yesterday was back to diddly-squat and they hadn’t calculated today’s by the time I left tonight, so I don’t know what today’s number was. I know, I know – they told us the numbers would roller-coaster. But a slow, steady increase would be nice. And geez, how long does it take to calculate that silly number. Some of us are hanging by our fingernails here. His nurse today told him he would start to feel better before the numbers showed significant improvement. Billy was cool.

We have been lucky. Most of his nurses have been great. They work a 12 hour, 3-day shift and then have a break. I am not sure how many days off they get in between. But it seems like we get someone, get used to them, like them a lot, and then it’s day three and we are like, “No! Don’t leave us!” And then they come back to work and we wave in the hall.

I am also happy to report that his hemocrit (which my spell check just changed to democrat WTH?) and platelets were good, so no infusions tonight.

And there you have it. A medium, creeping to good, day. I know, I have my wood next to me and I am rapping away on it. Gosh are my knuckles getting sore. How about you?

I have to tell you, Mark was getting caught up on reading comments today and you all had him awww-ing and laughing. So keep ’em coming!

Until tomorrow,
~terri

Tuesday

Going for a short and sweet, since the server that hosts our website/blog has been up and down since last night.

It was a fairly uneventful day, with Mark still being exhausted and feeling blechy. He did rally for a walk and that wore him out for the rest of the day. It was also the day for the last dose of methotrexate which is the chemo drug that is used to help prevent graft vs. host disease. There were 4 doses total and the last dose is on Day 11. When he got his previous dose on Day 6, it caused those awful mouth sores. But his doctor thought that he wasn’t going to have the same problems this time. I didn’t notice if he was knocking on wood as he said it or not.

His ANC was not back from the lab before I left last night, so I didn’t write down all his counts. But they were still low enough that they ordered two bags of blood and one bag of platelets. He was getting his first bag of blood as I was leaving. Before he was to get his platelets, they were going to pre-treat him with tylenol and a steroid. This was to avoid Benadryl and prevent the negative reaction that he got the night before with the attempted platelet infusion. I will find out this morning how that went.

That’s all for now. Server willing, I will be back tonight to let you know how it all went.

Wishing you a pleasant day!
~terri

Iv_StandMonday

I have to remind myself what day it is because they are starting to run together. Our floor tech, who is a real sweetie, asked me how my weekend was, and I just looked at her blank. There was a weekend?

We are hitting the point where the chemo has pretty much done its damage and the low blood counts are really starting have a physical impact. Mark is exhausted and weak. But while they had his IV unhooked this morning (he gets about a two hour “breather”) he forced himself to get up and go for a walk and take a shower. And that was about all he could manage today.

This afternoon was snoozy. Blood counts came back a little early and they were good news/bad news. His white blood cells were up and he actually had an ANC count (I think the “C” and count were redundant). We were warned not to get too excited, because they are going to fluctuate. Of course they are. But his hemocrit and platelets were low, so he needed to get transfused for both.

Usually, the platelets and blood don’t arrive from the blood bank until I have left for the evening, but today they got here in the afternoon. Generally, they give Benadryl before platelets to ward of any adverse reactions. But Mark doesn’t react well to Benadryl, so last night they tried the platelet infusion without and it went fine. Today however was a different story. He got flushed, a slightly elevated temperature, itchy palms and soles, and hives. So he got the Benadryl after all. It took about an hour for all they side-effects to subside. And they stopped the platelet infusion. It looked like he got about half the bag, but I bet he will need more tomorrow. I asked if that would impact his blood infusion and the nurse said no, she would start that after he was back to normal. Whatever that is, right? And to make it all really different, this time the Benadryl knocked him out. Go figure.

So, for those of you keeping track, here were today’s blood counts:
white blood cells – 0.6
ANC – 402 (!)
hemoglobin – 7.5
hemocrit – 21.0
platelets – 7

If hemocrit goes below 24, he gets blood. If platelets go below 10, then he gets those.

But I left him tonight just feeling yucky. He had gotten his pain meds about 1/2 before I left and they were just starting to work. And he was between his 2 bags of blood. I swear I looked at the IV pole and there were 6 different things running into him. But I couldn’t with certainty tell you what all of them were. I hate leaving him like that. I know he is in good hands, but I hate it anyway.

Jeff left back for Chicago this morning. The report is a good time was had by all. He stopped by my little house on his way back home to drop off some mail and bring me a gift. A little penguin. Minus his jet-pack. You really have to hear one of his stories and the flying penguins taking on the evils of the world, especially squirrels with flame-throwers. His facebook friends know exactly what I am talking about. Well, apparently the penguins watch out over sisters too. He unfortunately lost his jet-pack somewhere along the way, so we will have to order him a new one. And he needs a name. What do you think?

For anyone who… huh, I typed those 3 words and then got up to do something, and now I have no idea what I was going to say. Now that is really going to bug me. And I am going to leave it there to bug you too, because I hate to be bugged alone. 🙂

And THAT is the way we are going to leave it for this evening. Hoping for a better mañana. (I am soooo multi-lingual)

~terri