It’s been a mostly good week (with ups and downs). Despite that it makes common sense for there to be ups and downs, it is good to hear from the medical team that is perfectly normal and to expect it for another month or longer. Yes, we traveled to St Louis today. It was also Terri and my anniversary. Kai turned 10 years old yesterday (my second real trip out of the house). I got out of the house to visit some friends at work the day before, a stop over on our way to see my local oncologist. I won’t count doc visits or going to the store a trip out. But lets back up…

This post and the last one are more personal than helpful (sorry transplantees). After we got home and had the kids to ourselves, it was pure joy. The weekend went by too fast, partly because I had a bad day on one of them, but even then there was lots of hugs, touches, being close. I’m a physical person when you come right down to it and contact is essential. It makes me feel whole. Even when I feel like crap.

Monday – Have yet to find a routine cuz stuff came up, but I am really looking forward to a routine. Monday was busy. The morning was good because I am one of the things I am putting in my routine is to help get the kids up and off to school. Before this journey I left the house before them and was trying to get my own shit together in the morning. I like this much better. Then we saw friends at work and it also gave Terri a chance to get some work done, as I chatted it up. It was a purely social affair and it was really good to see them. Then off to my Doc. He is a good guy and got me through seven years of anxiety, gave me great advice, and is someone who gives it to you straight but with a gentleness that is comforting. Evenings are a blur, mostly because I am wiped out. One of the reasons I need a routine is to build my endurance.

Tuesday – Kai turns 10 (and its Day 60). Two great reasons to celebrate. We had been watching the whole Avengers series starting with the Incredible Hulk over the weekend. We finally got to Iron Man 2 Tuesday morning just in time to go to the theater to see #3. Kai had a great time, and hid in Terri’s shoulder when things got too intense. That kind and amount of violence would not have bothered me as a kid, but Kai is a healthier person and is more sensitive to that sort of thing. And THAT is a wonderful thing. Too much of a good thing had me resting the rest of the day, but I rallied to help cook dinner, take pictures for presents and cake. and help him sort through his new legos so he could build his creation. Mind you not what the directions said to do. Kai started following them, but then started making it his own. Makes a father proud!

Kai's 10 B-Day

Kai’s 10 B-Day

Wednesday – Kids off to school and out the door we went to make an 11am appointment in St Louis. NP Steph was great, because I had a lot of questions. So… I can now drive on my own, if I can do it. Freedom! And people of Columbia I won’t drive if I’m wiped out, so that leaves me the mornings for a while. She gave me a new med to take to sleep. Getting 5 hours a night for three weeks was getting to be a drag. Prednizone… I need it, but the side effects really suck. Not only does it keep me awake, but also makes it harder for my muscles to “engage”. On the plus side they are reducing the amount each day. The GVHD in my gut has stabilized, now it is time to see if it has learned to play nice. Throw the pixie dust and rap on the wood! There was a lot more discussed, and I don’t want to fill up this post with a list of minor issues. When I’m up to it, I plan to create a new page and discuss the past three months from a transplant perspective for those who want and need to know what it is really like (or was for me).

And now its time to enjoy my 14th anniversary with my Love. We’ll have to see what happens, and with that I bid you adieu.

(PS from Terri – I am liking this tagging on at the end. 🙂

Mark forgot to mention that he was also freed from having wear a mask anytime he leaves the house. Use some common sense, and wear it if necessary, i.e. tight quarters with lots of people, being around people that are sick… but in general, no mask! Yay! Fresh air! And I can remove chauffeur from my list of duties, unless needed of course. No mask, drive a car, I think Mark is going to like this freedom thing! 

also am trying to figure out this routine thing. I have to have a routine to help keep me sane. So far I have the first half hour of the day mapped out. Roll out of bed, drink coffee, read news on iPad. Tomorrow I am going to attempt to add, go to office and get work done! I miss actually going into work and sitting at my desk, and have actual interaction with my co-workers.

It was fun playing hookey for part of the day yesterday with Kai and Mark, and trying to make Kai’s birthday special.

Mixed in with today’s doctor’s visit was remembering that it is our anniversary and quietly enjoying that. OMG you guys, I have been married for 14 years! And all of you who have been married longer and are rolling your eyes can just let me have this moment, because 14 years is a frickin’ long time. Those years have just flown by. It sure feels like it was just last weekend that we were standing under the lighthouse, on that cliff laughing at the dive bombing pelicans and “Dangerous Condition” signs while swore forever to each other.

Am I babbling? I feel like I am starting to babble, so maybe I should shut up now.

One more thing to share… unfortunately this blog has started to get seriously spammed. And not in a PG kind of way either. We used to get one or two spam comments and they were easy to delete. Today we got 15. And like I said… they weren’t PG, I am not sure they were even R-rated. I don’t want to see it and we don’t want to subject you guys to it either. So, we have had to add comment moderation on the blog. All that means is that we have to “approve” comments before they will appear on a post. I hope this doesn’t deter anyone from posting comments because we really love reading them!

Okay, back to evening routine – time to get the kids to bed, and time for Mark and me to enjoy our evening and our anniversary 😉

Copy_of_home_sweet_home.2451702For those keeping track by days: Days 53 – 54.

So on Monday the Doc gave me permission to go home to Columbia (I should say we, since this journey is Terri’s as much as mine). She remembers all the things that I can’t or won’t during my hospital stay and 5 weeks slowly recovering. We have/had been staying at a great place called Almost Home, run by a lady named Toni. She was great! And when you stay at a place for over two months you tend to bring or collect stuff. We couldn’t just pack up the car in an hour on Monday and take off.

Tuesday – Terri and I (my part was mainly to watch and shuffle things around) organized and tidied up the place. Terri did almost all of it. I can’t clean, lift much (not over a gallon of milk in weight) or basically do anything substantial. That does not sit well with my male ego, but there it is. I have to accept my limitations for now. And fighting Acute GVHD in my gut takes its toll.

Anyway, Terri gets almost everything packed up and ready to go, but we can’t leave yet. Terri’s exhausted and I think Bob and Loretta are finalizing things at our house. Plus, we wanted to make sure the new meds were really doing there thing. To go Home and have to come right back to the hospital would screw everyone’s mind up. The kids still do not know, partly because what if I have to go into the hospital. But mainly we wanted to surprise them. Two months away from each other was really hard. Especially for them. I could see it in their eyes and demeanor when we Skyped.

Wednesday – Terri packs up the car, as I pack the frozen food. Double checked we hadn’t left anything behind. Got in the car and didn’t look back. As for me, I do not want to remember much of that time, it is temporary and unimportant. What is important is that I’m alive and recovering and on my way to wellness. That is my path in this journey through hell. Now I want to remember the events of the coming months, and look forward to it with some excitement. I’m sure there will be ups and downs, but now I can really heal. I have my family!

We pull into our driveway around 2pm, just enough time to unpack, rest and be ready for the kids to arrive. We even moved the car up the street so as to not give away the surprise. The bus drops them off around 4pm. Caitie came in first, and just stared at me in disbelief. She ran to me and we held each other for a long time as Kai joined in. Talk about an emotional moment, not one you can easily describe. At least I don’t want to. Loretta took a picture of Caitie running to me, but it is blurred, so not really a moment you can capture on film. Just as well… it is burned into my memory for life.

But the day goes on and the kids have things to do. Both did some of their homework next to me, while I laid in bed. I was wiped out, needed some rest, but to have them near me was pure joy. Then we ate and the kids and I played Minecraft for a couple of hours. I kinda hogged them to myself. Not sure how Terri felt about that, and I am sorry she was not with us. But there it is… I needed them and they needed me. We were a family again.

~ Mark

PS. from Terri – We are home. We are with our children. I AM HOME! I get to hug and kiss my kiddos. It was like a real live game of tetris trying to fit all the boxes, luggage, and bags into the car, but I did it! We left the key on the desk of the duplex, closed the door behind us, and were out of there! I do remember every single day we were in St. Louis and I am now ready to move on with our lives. I realize things will not go back to exactly the way they were before we left. But will be working together as a family to figure out how life is going to be now and work through this process of helping Mark recover.

homepagefamily

April showers and all...

April showers and all…

Monday

Thank you for joining me in rapping on ALL the wood! I am constantly knocking on all the doors and chairs as I pass them and so far it is paying off.

We had a regularly scheduled doctor’s visit today, of course with labs, and everything looks pretty good. Dr. John D suspects Mark may have a mild case of Graft vs Host of the skin and/or the gut. But before you start to worry, it is not a bad thing. A mild case helps him build immunity to it. So they actually want him to get a little GvHD. Honestly, I can’t see anything in his skin. He has freckles and he is pink. But that is normal. Every once in a while his cheeks get flushed, but it goes away. Tummy troubles are more obvious and a pain (not a pun) to deal with. But it is hard to determine what causes what. Is it GvHD? Is it recovery from chemo? Is it the drugs he is taking?

Oh, oh! And before I forget, the hair is starting to grow back. His head and cheeks are getting fuzzy.

But over all, the doctor was pleased. And we have a target date of May 1st to go home. Pixie dust, do your stuff!!!

So blood counts for today:

—————————-Mark             “Normal”
White Blood Cell     8.0 (up 1.0)        3.8-9.8
Hemoglobin           11.6 (up 0.7)      13.8-17.2
Hemocrit                33.4 (up 1.7)     40.7-50.3
Platelets                  84 (up 10)         140-440
Neutrophil               7.1 (up 0.9)        1.8-6.6

Obviously, things are continuing to improve. But, after all this time of wanting the neutrophil numbers to go up, up, up – they can stop now. They are good.

Somehow, we got it into our heads that he would be getting bone marrow biopsies on days 30, 60, and 90. Turns out that is incorrect. He doesn’t need another one until Day 100! So yay!

Next doctor’s visit is scheduled for April 29th. Cross your fingers for continued good progress. Because if it is good news, we are packing up the next day, and going home the following. (*reaches over for her block of wood to knock on*)

Mahalo for all your continued love, support, emails and everything!
~terri

Psst - guess who won again?

Psst – guess who won again?

Monday/Tuesday

Good news on the almost home front. Blood counts look outstanding! Let’s recap, shall we?

Mark                                “Normal”

White Blood Cells     7.0 (up 2.6 from Friday)           3.8 – 9.8
Hemoglobin              10.9 (up 0.7)                          13.8 – 17.2
Hemocrit                   31.7 (up 2.9)                          40.7 – 50.3
Platelets                   74 (up 20)                                140 – 440
Neutrophil                 6.0 (up 2.6)                              1.8 – 6.6

tumblr_lzxziiuM9X1r3ec6wo1_500The way they measure neutrophil count for out-patient is a little different than when he was in the hospital. We were looking for that magic 1500 number. Obviously the ones I am reporting look much different. Never fear though, they have not dropped thousands. For example, 6.0 is really 6,000. As you can tell, some of these have moved in the normal range and some are still sluggish. But not considered a problem, as the recovery from this takes a good long time. But our donor stem cells seem to like their new home and are doing their job. Keep it going stemmies!

We are keeping a close eye on Mark’s skin for any rashes. So far (knocking on ALL the wood), there haven’t been any major signs of Graft vs Host Disease. Mark does have a rash on his face, but the Doc didn’t say, “That’s it!” Which is amazing as 90% of patients get some form of it. It usually takes place in the liver, the gut, or the skin. Blood tests aren’t showing any liver issues, GI tract seems to be doing okay (other than the nausea that all the meds are causing), so that leaves the skin. Those of you know Mark personally, know his fair Irish skin. So we are trying to look between the freckles and under the pink for any signs of rash. We think we maybe see something, but then it goes away. So crossing fingers, that he is one of the lucky 10%. Of course, our nurse practitioner said GvHD could show up at any time for the rest of your life. What a buzz kill!

We were happy to actually talk to his doctor on Monday and get his take on everything, and start grilling him on when we can go home. Mark also had a list of issues that he needed answering. Stephanie, the nurse practitioner, said they never let any one leave before 60 days.  But doctor says, well…. maybe we can let you go a little early. Next set of labs and doctor visit is on Monday the 22nd and the 29th, and if all goes well… who knows? We’ll be home for Kai’s birthday, and that is a BIG motivator.

Of course, we really weren’t expecting to get out of here before 60 days, so now my mom and dad are scrambling to make sure the house is ready for Mark to come home. Allergen free, carpets cleaned, that kind of stuff. But it is big, pain-in-the-neck stuff. I don’t think I have really expressed the gratitude I feel for all my family is doing. My mom and dad have pretty much put their lives on hold to move into our house and take care of our children. It is not easy. It’s fun to try to remember how to parent youngish children (she says with much sarcasm). And, of course, everything that Jeff has been doing with coordinating fundraisers and stuff. He set up the Give Forward thingy (which is the widget to the right), but also is organizing a serious event in Chicago. The generosity of people, from my family to people I have never met, amazes me. And I will never be able to say thank you enough.

Okay, I am babbling and getting a little teary. Besides, I think Mark had something he wants to say…

with much aloha
~terri

I am really glad we saw my Doc. I got my questions answered, and we are back on track. I’m on only the meds I really need. Back on the Tac and we need to monitor my kidneys closely. We bought a bunch of gatorade so I can help flush the toxins out of there.

~ Mark

One step back…

Last last few days have been frustrating health- wise. I’m trying to get stronger, eat better, all those good things. But they don’t have my meds right and it makes me nauseas and drained of energy. As Terri said they screwed up a week ago and I was taking to much meds. So they had me stop taking my tacrolimus (anti-rejection/immuno-suppresant), tac for short. I understand that my kidneys counts are elevated, but tac is what is keeping my new immune system from attacking the rest of my body. Graft vs Host disease can be really nasty, and can kill you. So I’m a bit on edge right now.

We see my Doc tomorrow, instead of the nurse practitioner. She’s great, but I trust my doctor. He’s the Man! I don’t think we will be going home early this time, too many issues to solve, some big (tac), some small (nausea). And then when we do (which I can’t wait for), Terri still has to drive me to St. Louis once a week until Day 100.

The weekend with the kids was good for all of us. Unfortunately, Caitie was getting over a sore throat and had a serious case of the sniffles. I couldn’t give her the love she really needed from me, she got some… I hope it was enough. They won’t visit with us for another two weeks and that is a long time for both her and me. Kai got his full share, which is a good thing. I think Terri got her’s too.

I don’t know how she does it, but she is incredible. So thank you My Love! for all the big and small things you do.

DCP_0855

~ Mark

No matter the storm clouds, the view is beautiful

No matter the storm clouds, the view is beautiful

Wednesday, 8:50am

Sometimes its two steps forward, one step back. While Friday’s biopsy was done with remarkable efficiency. The drugs, the stress, the whatever kicked my ass. It was not until Monday that I felt back to where I was before it.

But today, Wednesday, we get to find out results. Honestly, I’m not nervous… I can feel it, everything is good. I have really no idea what results will be ready when we get there, except if I’m 100% donor, or there is still some of my bad cells left. As I said in the last post, its virtually impossible to kill off all of them. But we certainly do not want them to grow and multiply.

Still doing the routine, and I am getting a little stir crazy from being in the house. I can’t drive, I can’t go out into the sun, without major protection. Apparently, sunlight can trigger graft vs host disease. And while I know I will get some just because, why add to the plate. And this is a good sign, I feel good enough to want to go do something. I certainly won’t be running, or chasing the kids. Something easy and low stress. Any ideas?

~ Mark

Thursday

Life is crazy, you know? You would think that being minus two kids to chase and pretty much being chained to the house, we would have tons of spare time on our hands. Ummm…yeah, no. Hence, why I didn’t get my two cents in yesterday and am posting late.

So the biopsy, all great results! 100% donor cells, no signs of dysplasia. As Mark likes to remind me (and sometimes I remind him), that is from just a sample of the marrow. Who know what could be lurking outside that sample. But you know what, I am going to take it!

Wednesday was labs, doctor visit, and treatment if needed. So they took about 7,000 vials of blood. We got 6-7 pages of test results (nope, not kidding about that part) and basically MOST of it looked good. Blood counts were good. Some are coming down a little, but still acceptable. And some are even in the “normal” range. One little issue though. His kidney function was out of whack.

Apparently, when he had his biopsy done, the doctor’s side put in an order to the biopsy side that they were to give him a liter of fluid while they did the biopsy AND relay the message that he was supposed to reduce his tacrolimus (anti-rejection/immuno-suppresant) from 6 pills a day to 4. WELL, neither of those things happened, which we didn’t find out were supposed to happen until yesterday.

So, he was immediately sent over to treatment for fluids and told to stop taking the tac until we talk to the doctor side again on Friday. And we had to go in this morning for fluids as well. Then tomorrow we go in early, early to get labs drawn and see where his kidney function is now and possibly get more fluids and maybe/maybe not start his tac up again. The tac is kind of a crucial thing so I hope they get this figured out soon.

In the mean time, Mark is starting to feel a little better. He went for a walk yesterday, about 2 blocks, and then walked from the car in the parking garage to all of our appointments. That is a LOT of walking. Then he did it again today. And went grocery shopping with me. This is a lot of walking and exercise for him. After about 15 minutes in the store he said he was done and could he have the keys and go wait in the car. Yes, my dear, yes, you can. You have earned a rest.

Tomorrow after all the med visits, I am driving home to pick up the kids to bring them back here for the weekend. Can’t wait to hug and kiss the kiddos!

Oh! And if just all of this fun wasn’t enough. The owner of the duplex we are staying in has decided to sell it. And found a buyer in 3 days. So we have had inspectors and repair people up the ying-yang trapsing through here for the last week. We aren’t getting kicked out by the new owner, she bought it as investment property and our property manager has a 2 year lease on the place that the new owners have to honor. Monday, they are replacing the “stack”. I think that is like the main drain for the house. So no water, can’t use the drain. They have to tear out the kitchen sink cabinet. The city inspector has to come and approve it, then they have to put the cabinet back and clean up their mess. Guess who is staying in a hotel Monday?

I tell ya, the fun never ends.

But all in all, I am grateful for the way things are going. Knocking on wood that they continue. 🙂 I will try to pop in real quick tomorrow and let you know what comes of the new blood tests.

Aloha my hoaloha!

~terri

 

Why-Just-Being-Positive-Is-BadThe routine is paying off, although I am still fighting nausea after taking my meds. But spreading them out is certainly helping. I’m enjoying my hour of Qigong and meditation in the morning. It really sets up my day positively and with hope. And I am building up my strength by walking. I do feel better everyday, overall.

Yesterday Terri and I went for my 30 day biopsy. Hopefully, they will have results by Wednesday – my next appointment. In this biopsy they will be determining how many of the stem cells are my donor, and how many of mine survived. Yes, some do survive all that chemo, lets face it there are billions of blood forming stem cells throughout your bones.

The trick is getting my new (donor) immune system to seek out and destroy my old cancerous stem cells. That is really what happens over the next 3 to 9 months. The doctors reduce the immunosupressing drugs so that my new immune system destroys them all. But they have to be careful, because that is what causes Graft vs Host disease. That’s when the new immune system attacks my body and can cause lots of problems. So it’s a balancing act my doctor (and his team) get to play with my body.

So Friday was not very fun and I spent most of it in bed or on the big comfy chair and watched a marathon of Big Bang Theory, cuz I felt like crap. Today, it’s Saturday , and it’s a new day… My hip still hurts but I can ignore it most of the time.

Blood counts were status quo, none went up or down worth reporting… And that is a good thing. White cells are just where we want them, in the normal range. It takes about two months for the red cells and platelets to catch up and stay in the normal range. I probably will not need any more transfusions… Grab that wood, as Terri would say, and give it a good knock!

Look for next Wednesday’s post, we hope to have good news!

~Mark

s226358262This is my first real post since I posted my last, A Last Minute Thought. In that post I think some interpreted that I was having second thoughts on doing this. No way!… the last line I wrote was, “Spring, the transplant, is just three days away. I’ll meet you there, take hold of my hand.” I was crossing through to the other side, ready and willing to go all the way.

Well it’s Spring now and I made it through to the other side. When I try, I can remember some of those things that happened on the other side. I will alway remember my transplant night. When Life was given back to me. And when Tim came to town and kept company with me. The rest can stay behind that door.

Later, in a post or two for transplant patients I will go into detail about the experience. I have not forgotten you, its a good part of why we are blogging this journey. I may need therapy afterward, but they have to wait. I’m still trying to heal.

Healing is a slow process. My brain say lets go, go, go. But my body says, “Dude, slow down, you’re hurting me, we have to take baby steps until you can take off.” I guess that is why they tell you it takes most people up to 6 months to heal from a transplant, some even longer, and some never do. Those are the odds, 30 to 40% long-term survival rates. I know I am one of those 3 people… I know that I am going to be cured. So I’m learning to take each day as it comes, and focus on healing.

So I am fine tuning a routine for each day. I take my meds over three hours as I wake up, cuz the alternative is a visit to the porcelain god. I eat a little along the way which helps. Then I try to eat more… it depends on the day. Next, I practice my Qigong and Meditation for an hour or more… depending on the day. Then, I go for a walk and take a nap. I kid you not, this is exhausting, and every step takes will power and determination. Afterwards, I try to eat lunch, then play a game or read until dinner. Finally, I get to spend quiet quality time with my Love.

If I go to the hospital for labs, treatments or a visit, most of that routine goes out the window. Today, we went to the hospital, but I’ll let Terri share that with you…

~Mark

IMG_0551Now that we are out of the hospital, and the children have gone back home, we are trying to establish some sort of routine. I am not sure exactly what that is yet… but we are working on it. I am getting in the habit of sitting at my dining room table desk and getting some work done. Going into the office seems like so long ago, and something I can’t wait to get back to.

But part of this routine is the hospital/clinic/treatment visits. Today was treatment. That just means going and having labs done, which is blood tests, and then transfusions of blood and platelets if needed. I am happy to report no transfusions were needed today!

We thought it would be interesting to compare blood counts from the day he was admitted to the hospital to today and see how far we have come…

…………………….2/27       4/2         Normal Range
white blood           1.1         5.3          3.8-9.8
red blood cells      3.31       3.53        4.5-5.7
platelets                51         48          140-440
hemocrit               37.2       31.3        40.7-50.3
neutrophil               .2           4.3         1.8-6.6
ANC                      260       4346

The big numbers we are looking at as signs of improvement are the white blood cells and ANC. And as you can see there is huge improvement there. So keep knocking on wood and blowing pixie dust, because it’s working and things are looking good.

Next medical visit is on Friday, so I will update you more then.

~terri

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:

IMG_0637

IMG_0641

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!