Ben is in the operating room, getting his central line removed. Another big milestone :) He’s been doing great, and he’s very excited to have his line out, which will mean swimming, Kings Island, and much more freedom and normality. The surgeon said the only thing that could really go wrong is the line breaking inside him when they’re trying to take it out, but the line is only 5 months old, so that’s unlikely.  I should hear how he’s doing in about 30 minutes.

Josh has only a few more days of high school left, and did a fantastic job at his Percussion concert last night.  I should post the video of one of the pieces. He has his last full band concert tonight.  He and Sam had their Choir concert on Monday which was also outstanding. We love our schools!

Back to Ben one more time. I just want to say thank you, again, to everyone who has been there for us through all of this.  It has been a crazy ride. I look back and it feels unreal. Maybe I was in denial, but I always looked at the situation with the full expectation that Ben would fully recover and we would beat this.  I purposely avoided information for the first couple months of what the worst case scenario would be, and just focused on what needs to be done. Even the day I found out, I remember thinking… Well, first I thought they’re probably going to rerun the tests and find out they were wrong. But then I remember thinking that even if it was true, it was going to be ok, we would deal with this one step at a time like everything else. And everything was going to turn out fine. I drove Ben to the hospital and set him up in the hospital bed and got the needle in his hand and we treated it like a big adventure.  Attitude is so important.

Still waiting. I look around this waiting room full of scared parents and think how extremely lucky and blessed I am. I have heard only 2 other conversations, one child is getting a liver transplant and another has a hematoma on her brain with a possible skull fracture. How could that have happened? The parents and grandmother are all crying. I know we had our scary times too, and our doctors are always quick to remind us that he needs to keep taking his many meds to keep him from returning to the hospital. But we’ve been extremely blessed and fortunate that his transplant and recovery have gone so smoothly.

I was called back, everything went great :) The surgeon said he even cleaned up the yucky adhesive that Ben hasn’t let me remove from his skin, because I showed him in pre-op :) Thanks again for all your support, prayers and good thoughts. I wish I were able to give back to each of you all, I feel totally inadequate. But please know that I love you and appreciate you, more than you know!

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Ben had a good 100th day! We learned a couple new things at his appointment – here’s a quick recap.

I asked about school in the fall, thinking it was a given that he would be allowed to go. We’ve signed him up for classes already and his current wonderful English tutor will be his future 7th grade English teacher. However, when I ran it by the doc, he said he’d feel a lot better if Ben started mid-year (1 year post bmt). August would put Ben at only 200 days post bmt and he said it’s too risky being around so many sick kids without immunizations.  He will stay on antivirals and antifungals for at least a couple more months, if not the whole year, I’m not too clear on that. Then he can start getting immunizations next January.

We are supposed to be down to labs 1x a week, only coming in on Thursdays.  No more nurses coming to the house to draw labs, and etc etc etc! However, his creatinine level today was pretty high which shows that his kidneys are having a hard time processing, and he really needs to step up his liquid intake.  As a consequence, they are sending a nurse to the house for Monday labs.  If his level goes back to normal, they will go ahead and schedule the removal of his central line.

Meds – no change in amount like Ben was hoping.  Mondays, Tuesdays and Wednesdays have extra pills, and that will continue until at least day 180.

He was scheduled for an echocardiogram on Thursday as well, as part of a study his doctors are going to go present this coming week at a conference on the effects of certain meds he took right before his bmt. They did echoes on days 7, 30 and 100. I don’t know the findings.

I have been trying to finish this for days! Mark just got back from a 2 week trip to Asia and Sam had his play rehearsals and Josh with his orchestra rehearsals, both for Fiddler, which was outstanding… Life is super crazy busy, as I know it is for everyone. Ben just got a beautiful cookie bouquet yesterday from Team Quest, his school team – you guys are awesome! Thank you so much for your thoughtfulness and continued support throughout the year!

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I am so fascinated by his hair. It’s coming in darker and has a bit of wave in it. So soft too!

4/14

It’s been a while! Sorry about that. I get busy and I guess I assume that you all assume that no news is good news.

Ben is doing really well! It’s pretty remarkable that we have made it this far and haven’t had to go back for any overnight stays at the hospital for fevers or infections or illnesses. We’ve had some close calls with fevers that quickly went back down, so we avoided the trip. Thank goodness. Because last time we went to the hospital for a fever, we were stuck in there for an entire month. Not saying that would happen again, but our track record with fevers and the hospital hasn’t been great – way longer stays than just a 48 hour turnaround.

Ben put on a little over 3 lbs over the past 2 weeks. He’s eating and drinking more. We finally found the secret to getting him to drink water – Crystal Light On-The-Go packets. Lemonade flavor. Don’t leave home without them. We’ve been reducing his overnight fluids – 1000ml, then 750, then last Thursday it was down to 500 and last night I set it to only 250 ml over 10 hours – the pump was running so slowly both Ben and I thought it wasn’t working at first. Tomorrow night might be his last night of fluids! It’s funny, every time they change the amount, the pharmacy calls and asks if I feel comfortable changing the settings on the pump myself. The pump is very easy to run, but it’s an expensive piece of equipment. They trained me, gave me written step by step instructions, and send out new instructions with every new shipment of fluids (which I never even look at).

So each night, several hours before bed, I need to remember to take a bag of fluids out of the fridge so it can sit on the counter and warm up to room temperature. If I don’t, I have to carry it around with me and hold it in my lap while I read to the kids or put it in a heating blanket if I’m really late. Then I wipe down the tray I use for all Ben’s stuff, glove up, open and prep the tubing and spear one of the access ports on the fluid bag. Then I hold the line up high so the air filter is at the highest point and squeeze out all the air in the bag. The fluid runs up the line, fills the filter and starts down the other side of the line. Then I can hang the bag on the pole and run the fluids through the rest of the line. When the fluids reach the end I clamp it and start to get rid of the air bubbles by pulling the line tight and playing it like a bass guitar. The bubbles run to the end of the line and I let them out, and then we are ready to hook up to Ben’s central line. Which is then scrubbed, dried, unclamped, pushed with saline, reclamped, and then hooked up to the line, unclamped again, main line unclamped, pump started. See, no big deal. ;)

In the morning, I scrub each line (30 seconds!), let it dry (30 seconds again!) push saline on the one that had the fluids going into it, then heparin for each of them, then cap them off.

Then there’s the pills morning and night, the nurses come on Mondays to draw labs and ask all the questions and tell me that it’s time to change his caps and dressing, which we do and I’m getting better and better at, and Thursday mornings are the long clinic visits at the hospital downtown. Oh, and physical therapy once a week – we found a girl he really likes and wants to go back to! And school every day.

So, what’s coming up? Today is day 84! We are getting so close to day 100 – April 30th! Dr. El-Bietar is talking about getting Ben’s central line out as soon as possible, I’m assuming that twice a week labs will be a thing of the past, and hopefully several of his meds will be discontinued at that point. Ben would like to have a normal summer – going to the pool and Kings Island with his friends, etc.

Speaking of summer and relaxing and all that… Have I mentioned that Ben qualifies for Make-A-Wish? The good people at Make-A-Wish are coming to our house tonight to do paperwork and discuss what Ben would like to wish for.  It sounds like his top pick is a trip to Hawaii to learn how to surf and see a volcano. But he saw a brochure for Universal Studios again last night (thanks Roxann) and now he’s torn. I’m quietly pulling for Hawaii, I need a beach vacation. I’m super tired. Standing in lines and keeping the energy up to run around theme parks doesn’t sound like fun right now, but I am comfy in my bed right now, so that might be why.

As for the rest of life, everything is going way too fast.  Josh will be graduating soon, there are transition meetings for Jill and Ben who are both moving to new schools next year, Sam is in Fiddler on the Roof and then this summer will be in Les Miserables down at Sycamore High I think, Mark is traveling again, I’m trying to get projects done in the house, we have the kids’ friends in and out of the house all the time, which I seriously love, and sometimes I have to text or email Mark and the kids information to be sure they get it because otherwise I’m not sure I’ll remember to tell them when I see them. But this is all the same for every other busy mom, I’m sure. Here’s to a fabulous April that is already halfway gone!

Update since 7:30am when I finished writing this – Jill threw up on the bus, the bus brought her straight back home, we got her in the shower where she threw up again, then got her cozy in some pajamas sitting on my bed with a bowl. A little while later, she slowly flopped back on top of me – something Josh would have done to be weird, but out of character for Jill.  I got out from under her and saw that she was passed out, eyes open, unresponsive – it lasted less than 10 seconds and then she sat up and threw up again. So now we’re at the doctor. They think probably she started throwing up and couldn’t catch her breath and passed out, and it’s probably a virus. She also told the doc her vision started to get weird on the bus before she threw up. Anyway, she’s negative for strep, and her BP is a little low but not bad.  So that’s the news, I may have overreacted.

Another update, 2pm – Jill has a low fever and passed out and threw up again. Hmmm…

Things are going well! He’s still losing weight – 46kg today down from 49.x when we discharged a couple weeks ago.  Which, if you know your Bob and Doug McKenzie, the conversion rate for metric is always double it and add thirty.  (Really, it’s about 109 lbs down to about 101.)

So we heard from the nurse practitioner, the dietician, and the doctor, about how to work  high calorie foods into his diet.  Also I got another big earful from the np about his liquid intake and how he needs more, more, more. I assured her we are neither starving this boy nor depriving him of fluids. In fact, he has a vast array of water, flavored water, juices, milk (even almond milk) and of course, every soda imaginable available to him… Many within reach without even getting out of his bed. I tried really hard not to, but finally used the line, “I can lead the horse to water, but I can’t make him drink.” Ben glanced away from his computer screen and shot me a dirty look, and the np got the message. She switched tactics and started harassing Ben.  He nodded and okayed until she finished her lecture and left. Then the dietician came in with different goals.  She didn’t know about his near dehydration problems, didn’t know he was still on overnight fluids, and started talking about high calorie foods, and don’t fill up on water because it has no calories.  I refrained from rolling my eyes, and said, “yes, he needs to drink – he’s trying to get enough fluids in.” She said, “oh. Well, maybe you could switch to sodas and juices instead of water…?” I said, “he has just gotten over his problem with water, he usually drinks soda. We’ll keep a good balance.” I won’t bore you with the rest, but I was happy when she left.  She offered to get Ben a list of high calorie foods at one point, which he didn’t take her up on, thank goodness.  I’m happy to switch to whole milk in his cereal and buying caramel sauce to dip his apples in, but I don’t need him to have a whole sheet of foods that he can point to and say, “this sounds interesting.  I don’t think I’ll actually like it, but let’s try it anyway.” and then we’ll have more high calorie food in the house that nobody who needs it will eat, and everyone who will eat it, shouldn’t. We will load him up with peanut butter sandwiches etc, he’ll be ok.

Anyway. All his labs are looking good, his doctor is happy.  I pointed out that Ben is getting taller – maybe over a cm in the past month. That could explain the weight loss – the kid really is eating. He’s doing well with his school teachers.

One of our doctors here who also goes to our church contacted me this morning to ask if Ben could go to a Cancer Research Fundraiser tomorrow morning at Walnut Hills High School in east Cincinnati area. They’re going to be shaving heads and stuff, sounds fun! So if anyone goes to Walnut Hills High, come over to the tables on your lunch break and say hi!

Lastly, my condolences to my sweet friend, Leslie, who lost her dear husband Miguel to mesothelioma a week ago. I was honestly shocked that he went so suddenly, I have known both of them since high school and I thought that with his surgery he would have more time.  Love you, Les.

For documentation purposes, I thought I’d write about medication. I’ve been writing about his meds all along, and lamented his hatred of pills – it’s the taste of them that’s the problem.  So liquid meds are the worst, pills with no outer gel coating one step up from that and practically intolerable, pills in gel capsules several hundred steps up from those, and medicines that can be directly injected into his iv are the top choice God-sent drugs to be spoken of in hushed tones.

There’s one drug, pentamadine, which is an antibacterial, that needs to be taken only once a month, and I thought the only method of taking it was inhalation for 15 minutes, but then when it came time for him to get it again and he was right in the middle of being really really sick, they said, “don’t worry, it can also be through the iv, we will definitely give it to him that way.”  Holy guacamole.  The breathing treatment tastes horrible but we were happy to get it because he was able to skip out on some really nasty tasting pills (bactrim) three times a day, the taste of which made him vomit. Literally.

I bring this up because Dr. Javi said at one of our recent visits that he wants to switch him off pentamadine and back on bactrim.  I hate having him on so many pills.  But at least I know how to deal with the yucky tasting ones now… You want to know how?? I grind/cut up the pills and put them in gel capsules! And Ben is a rock star at taking them! A little education here… The biggest size of empty gel capsules (that I’ve seen, for people to use, etc etc) is 00 – they’re pretty big, some might call these “horse pill size”. Slightly smaller is size 0. Smaller than that is size 1, and that is the size of an extra strength Tylenol caplet. Size 2 is smaller than that, and is the size of a 15 mg Prevacid. There are smaller sizes and maybe larger sizes, but these are the only sizes I deal with.

I was cutting and grinding all his pills that weren’t already encapsulated and putting them in these awesome red size 1 gelcaps that I ordered from Amazon – They are berry flavored! However, you have to have them in your mouth for longer than half a second to be able to taste them.  But I applaud their effort and appreciate the theory. Anyway, when we left the hospital and first came home, he had so many pills that I was filling up 9-10 little red gelcaps.  Twice a day.  So then I was getting tired of this (my pill grinder isn’t the best and hurts my hand) and tried to shove the biggest pill into a size 00 and it fit! So I put the rest of his meds in the horse pill gelcaps. And I talked him into trying it, the selling point being WAY less pills, and he’s awesome at it. However, he still wants me to grind up that big pill so it’s not so big and flat. That’s ok though, because they have cut that pill’s dose in half, raised another pill’s dose and eliminated one altogether for the weekend to see if his liver labs stop acting crazy.  So the meds change so often, I never know how they’ll fit in the gelcaps.  It’s practically an art project every morning and night! Josh says I look like a drug addict.  Well, to each his own.  ;)  I don’t have any tin foil, pipes or other paraphernalia anywhere NEAR me. The foil is all the way down in the kitchen.

I will put up pictures of everything, just in case you’re curious.  If you or your child hates pills, a pill splitter is less than $5, and empty gelcaps are also inexpensive and can be bought from your local pharmacy. Worth a try!

(I wrote that on Monday. It’s now Wednesday and Ben’s liver labs came back looking much better, all of his tests are looking really good.  Thank you again for all your support and prayers!)

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4 size 00, then the red one and the black and pink one are size 1, then the next white one is a 2, then the pink and green is a prevacid, it’s either a 2 or a 3. The last 3 are his actual filled pills.

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Pills ready to be crushed

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This is where Josh accuses me of dealing drugs. I used to pour the powder from this paper into a funnel made from a straw but I don’t need to do that anymore.

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Pour the powder into the gelcap. Usually I hold the capsule in my hand. ;)

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Cut pills to use the space at the top of the gelcap

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Voila

3/4

It’s already been a week since I last posted, but it feels like a month or two. Or seven. Of course, I have a very weird sense of time so it’s difficult for me to judge. We’ve been back to the hospital 3 times since for lab work – two scheduled, and yesterday’s trip was a recheck because his kidney tests (creatinine levels) were very elevated. So they increased his overnight fluids, cut one of his pills in half, and told us to come in for more blood work.  We talked to him about how important it is to drink WATER and not just soda (!) and it all helped – not only did his creatinine decrease slightly from 1 to 0.9 (still too high, but the downward trend prevented us from being admitted) but his ANC jumped from 1670 to 2960!!! In one day! Without GCSF or anything! I asked the nurse if it was due to the decrease in acyclovir (the pill we cut in half) and she shrugged and said, “huh. Maybe.” Something to ask the doctor or cnp or whoever tomorrow. Ben attributes it to getting to go to ikea on Monday.  ;)

Aside from a couple headaches and vomiting twice, he’s been doing really well! A very cool highlight was that I got a text from one of the teachers at Ben’s school – Friday they were kicking off a fundraising week for the Leukemia Lymphoma Society. This teacher’s little 3 year old girl had ALL, the same type of leukemia as Ben but is doing great now, and there’s another little girl in the same wing as Ben who had AML but is now in full remission. Anyway, they did a “Pennies for Patients” drive, encouraging the kids to bring in spare change, and they honored these three kids at this kick off. The teacher texted me to let me know about it, and said she knew he was just out of the hospital so didn’t know if he could come, but it would be fun if he could. I decided last minute that he was doing fine (He was laying around watching YouTube for 2 days and absolutely needed to do something more productive) so I told him what was up and he was all for it. Even though he had to wear his mask and gloves, he didn’t care, he was very excited to see his friends and teachers. It was a big surprise because I had only texted Amy to tell her we were coming. The teachers at MI have been so supportive through all of this, and the kids have sent awesome cards – hundreds of them! To decorate Ben’s hospital rooms. There are some REALLY talented artists developing at MI. I’m very impressed!

Anyway, it was very fun to see so many awesome kids and educators in one place, what a great group! I was talking to one of Ben’s teachers at the end about how amazed I am at the amount of support given by this group, especially since he was only at school a couple weeks before he got sick. She said every morning when taking attendance, she asks if anyone is absent and people always call out, “Ben!” So they think of him every day.  That’s very touching :)

Ben wrote down his locker combination before we left home so he could empty out his locker while we were there. Only a small group was going back towards the classrooms and they went off ahead with Ben and a few teachers while I stayed behind talking for a minute.  By the time I caught up, I saw that a small mob had gathered around Ben’s locker area, but in the middle, 4 boys had taken it upon themselves to be Ben’s bodyguards and were yelling at people to stay BACK! in a joking way, but you could tell they were serious.  It was hilarious and I was grateful for these good friends.  All the kids were actually very respectful of Ben’s space and didn’t try to touch him or do anything joking to him – the teachers must have taught them well about what he is able to handle because we didn’t say anything… Either that, or the mask is scary enough to warn people to keep their distance, which is certainly a possibility.

I got to do his dressing change and cap change yesterday, which are both sterile procedures, under the watchful eye of a home care nurse. One more time on both and I’ll be passed off to do them both without the nurse coming out or having to go downtown… It will be so much more convenient.

We are all looking forward to April 30th, which is DAY 100! We are hoping that most of the medications will be done by then.  Ben and I were talking on the way home from the hospital last week and I was telling him how proud I am of him.  He’s been through a lot.  The worst is most likely over.  And now, all that’s left, is taking some pills in the morning and night.  He asked for how long? I said that I think the doctors are expecting to finish a lot of the meds by 6 months, and some by 100 days.  And he pointed out that we already have one month down! So, yay! I have long held the belief that you can endure just about anything if you know there’s going to be an end to it. Even more so if you know when that end will be. We also counted our blessings that he only has to take meds for 6 months or so.  Getting the bone marrow transplant was a tough route, but because of it, treatment should be over pretty quickly.  Regular treatment without a bone marrow transplant required daily medication for 2-3 years, and if I remember correctly, it was the mercaptopurine, or 6MP, which is a serious pain in the rear to take.  It was either wait 2 hours after eating, take the pills, then wait another hour then you can eat, or wait one hour after eating, take the pills then wait 2 more hours.  Either way, difficult for anyone, let alone a growing pre-teen boy.

And now the whole day is gone and I’m sitting in the passenger seat getting dizzy while Josh practices driving/sliding in the snow at the high school. The things we do, huh? The vomit tonight might be my own. Blech.

And now we’re home again and it’s time to get Jill in bed, do meds and fluids, etc etc. Oooh, one more cool thing, Ben’s hair is growing back! Hope you all are doing well.

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Ben, Maya and Ella

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Crouching down so there’s not such a height difference ;)

2/24

We’re home! I woke up dizzy with a migraine coming on, and now it’s taken over, but I’m snugly in my own bed with my husband downstairs who just called out that dinner is ready :)

It was a lot of meeting with people and instructions on how to take care of Ben’s meds and iv administration (I need to study! I’m going to be tested tonight!) and what kinds of precautions we need to take with Ben from now on. This poor kid.  He’s doing really well rolling with the punches. It’s hard for me to nag him to take his pills or whatever when I always have it in my head that he didn’t ask for this, and he is doing a really good job trying to do what he’s asked.  He might not do it right away, but he always gets it done, and that’s very honorable. I try hard not to nag, but instead I will talk to him and explain why he needs to take the meds within the next 15 minutes, and why I’m getting frustrated with the process (my back hurts, it’s 1am, the meds need to be taken on time and we’re already running 2 hours late, etc) and he almost always responds really well to being included in the decision making, you know? Also, I don’t know why I’m throwing this out there, but just like when you are having a hard time dressing a 2 year old, and you give him/her a choice of 2 shirts to wear and suddenly they feel totally in control of the situation, it’s been very useful to give Ben a series of choices throughout the day, since he has so little control of a lot of what goes on. Obviously he can choose what we do with our free time – books, games, movies, TV. But with pills, would you like water, Fanta, root beer or coke? Do you want to do vitals first or pills first? Etc.

Aaaaand now it’s Wednesday. I passed hooking up the iv fluids and taking him off of them in front of the nurse with flying colors. I was going to have Mark get trained on it also, but I realized that the 10 hours that the fluids need to be running can happen at any time of night and I’ll be there to start it no matter what’s going on.  Plus, I don’t anticipate Ben being on fluids for a really long time.

Anyway, to answer some frequently asked questions –

School – I do not think that Ben will be returning to school this year. Ben has to get all his immunizations again, and they do that at 1 year post-BMT, and I don’t know if the doctors (or the school!) will say that he is unable to go to school until he’s been immunized.

Precautions – his immune system is still very compromised, so when you see him outside of the house he should be wearing a green N95 mask, I’ll add a picture below. We still need to stay away from church and movies and other crowded places, and also people who are coughing, sneezing, have sore throats, have family members with those symptoms… And as always, washing our hands and dousing ourselves in purell and politely ask everyone who comes in the house to do the same. (Not dousing yourselves, just a squirt.)

I’m out of questions for now, and need to go make dinner! It is so nice to eat with nice metal silverware again, instead of flimsy plastic forks and spoons out of Styrofoam bowls and plates! That is making me very happy today. By the way, one last thing – Ben is eating more today now that we’re out. Home food beats hospital food, no matter how hard they try I guess ;)

Love to all. Thanks for all your support and prayers!

Pics below – sitting around yesterday waiting for transport to come get us out of the hospital.

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2/20

Guess what? Ben’s bone marrow results came back – 0% leukemia! And 100% Josh’s blood and bone marrow, which is what they were hoping for! So, this is fantastic! :) it didn’t occur to me at rounds to ask if this means that we have zero chance of relapse, but nobody has raised that issue so far, so we will just enjoy this victory.

The only thing we need to watch for now is GVHD (Graft vs Host Disease) which is why he still has to take multiple meds and why the doctors are keeping a close eye on him.  I’m not sure what happens next, except they’re talking about discharge in the middle of next week, and Monday I’ll be taught how to do iv stuff and central line care, which I’m not worried about. (He might need to stay on fluids and some iv meds for a while).

Anyway, he’s been trying to eat more, after Dr Javi explained to him yesterday morning… “You know how some people say ‘I live to eat!’? Well, right now you need to ‘eat to live’. Even if things don’t taste right or you don’t really have an appetite, you need to try to get some calories in, to keep your body running.”  So he tried some of my lunch yesterday, and he liked the salad! So he had more.  Then today we sweet talked our way into getting a pass out of here for a couple of hours, which was a terrific morale booster for him I think.  We stopped at Five Guys where he ate half a bacon cheeseburger and some fries and half a coke.  Serious progress! We then went home (we weren’t allowed to go anywhere crowded like movie theaters) and hung out with the family and Ben watched a movie with Dad and Jill and Sam while I went out with Josh and got some good stuff done.  We were thinking maybe another pass tomorrow but the weather looks rotten again so probably not.  We had a good time today though!

Thank you again for all of your prayers and good thoughts and well wishes.  I can’t help but believe that we have been successful because of the faith of so many wonderful people in our lives. I was talking to our occupational therapist, who was marveling at how well Ben is doing (this was the day he pushed me upstairs in the wheelchair)… We were all walking back to the room and I told her that I attribute his recovery to 1) The fact that he was really healthy and active when this all started. 2) His big brother has always put a seriously high priority on health and fitness and has taken care of himself, and gave Ben really fantastic bone marrow. 3) Ben has been trying hard to have a good attitude and keep working towards getting better.  4) An amazing support system that has been through this whole ordeal with us since day one, here in our current area and all over the world.  We really do appreciate you and feel your love and prayers.  Not for one second did I feel like I was (or we were) alone in this, and I don’t think I’m putting words in Mark’s mouth by saying he has felt your immense love and support as well.

This is starting to sound like a goodbye – I will still update, but I am feeling like the crisis is over.  I hope I’m not speaking too soon.  I’d better post this, it’s been too long of a wait already for those of you who are waiting.  Love to all :D

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I took this pic on the sly ;)

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We were going to be late to get back to the hospital already, and ready to jump in the van, but Ben remembered that he hadn’t seen his throne yet!

2/13

First of all, happy birthday to Josh who is EIGHTEEN today, holy guacamole, and to my dad who is 45 years older than that.  :)  I love you both so much!!

I was telling my sister in law yesterday that it’s difficult for me to write updates when things aren’t going well. Even if it’s just a bunch of little things that aren’t going well, they all add up to several crummy days in a row and you don’t want to talk about it, and it’s definitely not fun to write it down in a permanent record.

He’s had several bad days in a row, with a couple hours of doing well each evening. The worst was the other night when he started feeling really good, and the doctors told him that one of the main things he needs to do to get out of here is start eating again, and they said sometimes spicy, strong flavored foods taste best at first… So he first tried Fanta and doritos from the vending machine, which went well. He then sent me to the store for taquitos, more doritos, fruit cocktail, ranch dressing, nerd ropes, etc etc. And he ate 5 taquitos, they tasted good. Then, we had a no nonsense nurse that night who stood there waiting to watch him take a certain pill. I was trying to get Ben to take it, saying, “come on, this is the tiniest pill, let’s just get it over with, then she can leave and we can take our time with the other ones.” Sometimes Ben stalls to be silly, and I thought this was one of those times.  I kept coaxing him, but then he started crying, harder and harder, until he worked himself up so much that he started coughing and he threw up everything.  The nurse was still just standing there with her arms folded, and she said, “do you think he’s going to take that pill?” I said, “well he’s not going to be able to for a while NOW…” it took me hours to get him calmed down, and he finally told me after she left that his stomach was upset. I told him I would never push him to take pills if he’s feeling sick, but he needs to tell me, otherwise I think he’s just being silly or stalling.  And he needs to be serious about taking his pills so things can go more smoothly, and we can just have better communication all around.  Anyway, I felt horrible for letting the nurse silently push me into pushing my kid like that. Seriously, he sobbed for like 3 hours. I think he was so upset because a) I was upset with him (but I apologized profusely, and so did he) and b) he felt very discouraged that he had thrown up everything in his stomach, and felt like this was a major step in the wrong direction.

(Disclaimer – normally the nurses and PCAs on the BMT floor are very professional, this was a very out-of-the-ordinary night.)
We barely saw the stern nurse after that.  They usually need to measure the volume of emesis and everything else that comes out of the boy, so I left it in the bathroom and asked the nurse if she needed to do anything with it (it smelled) and she said the PCA would be in to take care of it.  A while later his pump was beeping and I needed to go to the bathroom anyway, so I told the people at the desk (one of which was our PCA) who were sitting around goofing off about our pump, and went on to the bathroom.  On the way back past the desk I said to the PCA that the nurse said that you would come in and take care of the vomit… The guy whose job it was to really be sitting there spoke up and said, “Robin went in, she’ll take care of it.”  I smiled and said OK and left, thinking yeah right.  Robin was just about to leave when I got back to the room and practically begged her to take care of the vomit.  She reluctantly snapped some gloves back on and went in and announced that there was a lot of undigested food in there! Then she came back out and put her hands on her hips and said, “did you eat too much, too fast?” I said, “it was his first time eating in a while,” and slid my eyes back to the Harry Potter movie. She said, “Ah! Well that explains it. They almost always throw up the first time. Blah blah blah….” I was mad about so many things by this point, I just gave her little glances and nods and said “Thank you for doing that.” and tried to clearly show I wasn’t interested in discussing vomit with he anymore.

The next morning at rounds, the 20 doctors and nurses and their rolling laptops all stopped to stare at me as I tried to get my brain to work after 3 hours of sleep.  They asked me how the night went and I rubbed my eye and squeezed my head trying to remember.  I told them that he ate, but threw up – but I didn’t think it was because of nausea, it was because he was upset.  And then he couldn’t sleep again, this is the 5th night in a row that he hasn’t been able to sleep.  “Well, you just need to keep him up during the day! Work him harder at PT!” said this week’s attending doctor. I looked at him exasperated. “He pushed ME in the wheelchair up to physical therapy yesterday. (Gasps from the audience) He didn’t take a nap at all yesterday. He’s working hard.” The doctors and nurses put their heads together in twos and threes, except for the attending and our main CNP. They both agreed there was nothing more they could do, medicine-wise, and to just keep doing what we’re doing. Sigh. Our main CNP is much more easy going when she is not in front of this particular doctor, I’ve noticed, and definitely more at ease when she’s in our room just by herself with us. She apologized for not warning us in advance about how he probably would vomit after eating the first time. And she was much more understanding and compassionate when not being stared down by 19 colleagues.

The pain team doctors, on the other hand, are always concerned and helpful.  They have increased his elavil to help him sleep and would like him to take his pills at 9pm, but he still stalls until 11. My favorite pain doctor is a mother of 3 boys and we sit and talk for long periods of time about all sorts of things. Very sweet lady.

Dressing changes are painful, labs at 4am are super annoying, he just threw up AGAIN in the process of me writing this, and I keep bugging him to let his school teacher, physical therapist and occupational therapist work with him on days that he’s feeling good, which is just awful, isn’t it?

On the plus side, we just finished the last Harry Potter movie yesterday, it was very cool to watch them all back to back like that.  He gets unhooked from his pole for several hours every day, and this allows him to go up to physical therapy easier instead of always doing it the room, and also we can walk in the halls on our floor.

They sent out a lab on Monday that is supposed to tell us how much of Ben’s blood and how much of Josh’s blood is in there right now… Since they are so closely matched, it takes 4-5 business days to get the report back.  No results yet, and I’m not sure what exactly we are hoping for – I would assume we want to see Ben’s blood because that means he’s making his own cells now (which seems obvious from the numbers, but what do I know?) Maybe we’ll hear back this afternoon, maybe not until next week. Also, his next bone marrow biopsy is on Feb 17th, next Tuesday – to see if we have been successful. Thank you again for all that you do for us. Love you all.

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Ben’s current mix of morning pills – Happy Valentines Day!

2/8 1am

Well, up and down.    ANC up to over 1,000 thanks to that immunity booster (GCSF). Nausea, vomiting, diarrhea. And lots of it. Lots.

Immunizations – he’s going to need all his immunizations again, now that he has a brand new blood system. So this measles outbreak is hitting surprisingly closer to home than I ever expected, since my kids all got their shots and I have no little tiny kiddos anymore.  But all of a sudden I’m paying close attention, because my 12 year old is now susceptible to measles and all other childhood diseases. Ben will be allowed to get his immunizations at one year after his BMT. Mark had to talk me off a ledge as I was telling him all my fears about letting Ben go anywhere over the next year – can we go on the trip he wants to take so badly? We might have to wait until next year. Mark talked some sense into me, that the news is sensationalizing the outbreak.  But still… And I don’t get all one-sided on things often, but if you’re all iffy on vaccinating your children, just on moral grounds or fears of autism or whatever, please do some real research and immunize your kids. For their good and the good of those around you.  I have several websites and even personal friends who would gladly fill you in with friendly, correct information.  OK, soapbox over – man, that was directed towards absolutely NOBODY that I know.  That is what happens when I have only had 4 hours of sleep in the past 2 days and I watch my kid vomiting and hobbling to the toilet 20x a day.  So I hope nobody took direct offense, it was unintended.  But if you haven’t immunized your kids, seriously, reconsider.

Back to the topic of being here at the hospital, Ben got off his pain pump tonight, which allowed him to be off 24 hour monitoring, and we took a little walk in the halls tonight! They weren’t going to let him because he’s still technically in isolation, but the only test still pending I think is giardia… Whatever it is, they said it’s pretty much only contracted in mountains and rivers, and obviously we’ve been far away from those, so it’s highly probable he’ll be negative, like he has been for every other viral test. So he shuffled through the halls, it was nice to have him out.  His pt brought him a walker and said she’ll set it up Monday (since he threw up right before she came Fri) and he tried it out in the room but didn’t want to use it in the hall. So we held hands or he ventured on in front of me.

There’s a whole thing about his pain meds and how he pushed himself hard to get off his pain pump, too fast I think, but he did it and it’s done, and I’m looking forward to less monitor-beeping tonight as we sleep. If we can sleep.  He’s not sleeping yet, which is part of the problem I have with him getting off his pain meds so fast.  No sleep, discomfort… They doubled his elavil (to help him sleep) and it’s not doing anything.  He was feeling really uncomfortable tonight around midnight and I told the nurse, she said he could bring in a pain pill.  He took it and immediately vomited everything in his stomach.  So he got the pain med in his iv, but still no sleep.

Which reminds me, everything in his stomach equals the pills he’s taken and the little bits of root beer he’s used to swallow them down, and nothing else, except yucky green bile.  Just saying, he’s not eating anything. The oatmeal was a fluke, he’s not hungry. Maybe when all these stomach problems pass he’ll want to try again.

One last bright point, with his ANC so nice and high, Dr Javi named yesterday, Feb 7th Ben’s official engraftment day.  :)  there are lots of monocytes in his blood which are baby neutrophils – neutrophils are the “N” in ANC and what are counted to determine how his immune system is doing. His white blood cells and hemoglobin are both rising without the help of a transfusion – that means his body is working with Josh’s cells to make new blood :D

We are not out of the woods yet, things can still go wrong. But the doctors are very pleased with how he is progressing! Sleep and stomach troubles… Pssssh.  ;)

A big thank you to my sister Allison who came out for a week and laid down the law on my kids! They haven’t had a mom of young children in the house for a while, and she didn’t put up with their garbage! I’m very grateful for her and I think my kids still love her :D and baby Madysen is adorable.  Thank you again, Allison and Kevin, and Kevin’s parents for helping with their boys while she came out!

I planned for this to be like 2 paragraphs long at the most and I got carried away again.  Sigh… I talk too much.  ;) Love to all.

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The pole with a lot less stuff on it (even if it doesn’t seem like it, it does to us!)

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