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!)

2:00 am.

Officially the beginning of day 15. He ate oatmeal on Sunday night, he’s been drinking orange juice here and there, and he likes to take his pills with little sips of soda :) But yesterday and today, when the nurses asked him to rate his pain, instead of saying his usual numbers of somewhere between a 4 and 6.5, he was only as high as a 2, sometimes even a zero. Granted, he’s still on the pain med pump, but they’re weaning him off it.  He’s doing better! His throat no longer hurts, no more mouth sores. Dr. Javi says this is definitely the first signs of engraftment.

He is getting platelets pretty much every day – They must have been going straight to healing up his mouth, throat and GI tract.  His ANC is still very low, it’s been at 40 for several days.  Dr Javi said to expect it to hover down there for a while.

I talked to the mom of a baby across the hall who got his cells the day after Ben did, and his ANC is already at 1200. Holy guacamole! I congratulated her and she said, “So they might let us out of here in 2 – 3 weeks!” I was thinking, “Well duh.  They’ll let you out next week probably.” Because I’m just expecting the timetable to work for everyone else how it is supposed to for us, if that makes sense.  We (obviously I’m using the royal We here) apparently have to hit an ANC of over 500 for several days in a row, we have to be fever and illness free, and we have to be able to keep food down and consistently be eating and drinking and taking medications on our own.  It used to be that BMT patients were routinely kept in the hospital for 100 days. I am hoping he will be released by day +30, but maybe that’s too optimistic.

Thank you again to everyone who made Ben’s birthday special, the fun stuff just keeps coming! The cards from Mason Intermediate 6th grade and church were awesome! A lot of talent, and we saw some of his very good friends’ cards, that was really fun.  These things have been great for his mood which is sometimes cranky, as you can imagine it might be, unable to leave a room for weeks and weeks.

I have so many people to thank, it is really overwhelming.  I love and appreciate all of you who are helping me and my family, and who have sent gifts and cards and food and treats and soda and words of encouragement and friendship and prayers and love, and when I start trying to count you all and write you all down, I get all choked up and the screen gets blurry and then I have to look for tissues and it’s a big ol’ mess. ;) Thank you from the bottom of my heart.

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1/29

First of all, I’m very touched by the overwhelming support for fulfilling Ben’s wish for a year’s supply of soda! It’s crazy, I tell you.  I can’t even imagine what it’s going to look like down in the basement all together.  Summer and Heather have spearheaded the campaign at church, while Laurie has taken the neighborhood.  Savannah got Pepsi to donate a bunch, and Laurie’s neighbor, just one neighbor, donated 30 cases. Laurie recommended we get our dentist appointments ready.  No kidding.  Seriously, thank you everyone, he’s going to be excited :)

This morning at rounds, we talked about how well he’s been doing, and how they decreased one of his anti-nausea meds yesterday, from every 6 hours to every 8 hours.  Today, they wanted to increase the amount of nutrients he’s getting down his NJ tube from 5 to 10. Basically, he has been getting about a tablespoon of food an hour and they wanted to double it.  I said, that’s fine to make the change today and see how it goes, but please, let’s not do anything drastic tomorrow, because I want him to have a good day for his birthday.  They all agreed that it should be an easy day tomorrow.

This afternoon, he suddenly gasped for a bucket.  It caught me off guard at first, it’s been several days since he’s been sick.  He started throwing up and I pressed the nurse button and said we needed our nurse please.  Then Ben said, “Mom, my tube!” I looked, and a loop of white tube was drooping out of his mouth.  I said oh crap. And opened the door and saw some nurses down the hall and said, “can I get a nurse in here now please?” one came quickly, and she said, “oh dang it.  Ok, buddy, we’re going to have to take your tube out, OK? It’s going to feel weird because it has to go back through your throat.” But she did a really good job pulling it out.  After it was all over, he said, “at least it didn’t happen tomorrow.”  I agree.

So they gave him 2 options. Get an NG tube (goes to the stomach, not all the way to the intestines this time, they can place it in the room and don’t need the help of an xray machine) or for him to take his meds by actually swallowing them.  Tonight, after much debate and coaxing and encouragement and bribery, he swallowed his pills and DID NOT PUKE.  Maybe he will be convinced to try a bite of cake tomorrow, but if not, I told him it’s no problem, people freeze or refrigerate cake all the time.  We’ll save him some for when he’s feeling up to it.  :)

Mark delivered the most beautiful quilt to Ben tonight, made and signed by the ladies at church.  We love the colors! I forgot to take a picture before we turned out the lights so I’ll take one tomorrow.  Thanks so much for your time, talents and thoughtfulness!! You are wonderful!!

Thank you again for all of your support and love, we pray for all of you every night, and appreciate all your prayers and friendship.

1/27

Today is day +7, and we keep hearing that days 7-14 are going to be the worst, but he’s really been doing well, all things considered! No vomiting since Saturday. Still has diarrhea problems though.  But his pain is being managed pretty well – he is able to sleep, and he’s able to sit up and talk and make jokes and flirt with the cute nurses.  :) He definitely still has his bad moments – a little frustration or unexpected pain can cause a lot of tears, but we are focusing on the good things coming up.  He’s turning 12 on Friday and keeps telling the nurses he’ll accept cash as a birthday present.  I keep telling him to quit pimping for gifts.  :P  He also said that he would like a year’s supply of soda, and Mark’s not going to be too thrilled about this, but some very good friends are working on that for him :) I keep pointing out that he’s not going to be able to drink soda for a while, but suddenly he’s gotten serious about his mouth care in the hopes that it will help him be able to have a little soda on his birthday.  :) He tolerated a little very flat root beer a few days ago, maybe we just need to let it de-carbonate.

I also turned in his Make-A-Wish paperwork today, so we have that to think about when times get rough.  He is open to suggestions on what he should ask for – he’s still trying to decide! It is a good topic to dwell on when things are looking grim.

The only things of concern (that are out of the ordinary) right now, is he is retaining water and his feet have been swelling and toes turning purple when they aren’t elevated, so they’re working on that. And, he’s been having double vision for over a week now – only up close is it really a problem. (He can see the TV just fine.) They did an MRI this morning and just now, as I am writing this, a doc poked her head into the room to say they want the ophthalmologists to look, but there’s nothing major wrong. Which is good, because I was thinking, Oh great… He’s got a tumor pressing against his eyeballs…

But not really, because he is looking pretty good :) Every doctor who comes in says, “You’re doing great, Ben!” and remarks on how clear his lungs are, his color is good, he sounds strong, is coherent, etc. He just had an echocardiogram about 40 minutes ago, and maybe it was their equipment, but his heart looks beautifully strong. It’s making me feel very hopeful, seeing him doing well, remembering that he started out really healthy, he had really awesomely healthy marrow put into him*, and he has so many people who are pulling for him and praying for him.  What a roller coaster this adventure is.

*Josh is feeling good! Mark told me that he just ran into our surgeon, Dr. Wallace, in the hallway a few minutes ago, and he asked how the boys are.  Mark said they’re doing well.  The Dr said he has a young man who donated bone marrow 6 months ago who is still complaining of pain.  Mark told him Josh isn’t even taking aspirin.  ;) The awesome thing I found out from Dr. El-Bietar last week was that they were a little worried about how much marrow they would get from Josh, since they are kind of similar in weight – well, I guess a 50 lb difference, but from my observations, most of the BMT patients are under 5 years old around here. Anyway, they had scheduled over 2 hours for the procedure.  They got all they needed in 1 1/2 hours, and they got 700 million cells for every kg Ben weighs.  A normal donation is 350 million per kg, or half of what Josh gave. So they got a huge amount of healthy cells for Ben. Dr. El-Bietar said that he’s hoping that this will help the engraftment come just a little bit sooner.  It’s not going to be a huge difference, as in, we won’t see any results this week, but maybe by day 18 – 19 instead of day 21 – 22. That would be cool :)

Someone sent Chicago Style Pizzas to the house – thank you, they were delicious! Mark brought me a couple slices :) We don’t know who you are! But thank you so much for your kindness! And thank you to so many of you who have brought meals, looked out for my kids, taken time out of your day to say hi, and showed us kindness in a multitude of ways. And a HUGE Thank you to my mother, who is systematically going through my entire house and cleaning it top to bottom, reorganizing closets, getting rid of junk, fantastic!

Thank you to everyone who has been praying and fasting for us.  I am so very appreciative.  I do believe it helps.

P.S. Would anyone like an old lady beagle? She’s a very happy, smiley dog, with an adorable face ;)

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Ben’s eyes are dilated so they can check out his double vision

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Getting ready for the MRI

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See? She’s cute! Fat but cute :)

I’m becoming the kind of mom that the nurses roll their eyes about, I think.  The front desk has forgotten to call my nurse too many times, and they’ve taken too long to get here too often, that (after several minutes) I’ve started to go hunt them down myself.  And if I can’t find my own nurse in 30 seconds, I’ll tell anyone including the cleaning ladies who I’m looking for and enlist their help. I’m becoming a pain in the butt.

But my little boy is so so sick.  He’s now developed a fever and his heart is racing. His throat and mouth hurt so bad he refuses to talk except when absolutely necessary.  He has vomiting and diarrhea. He did make a joke today though.  He’s on a ridiculous amount of meds, and he whispered, “hey mom, you know how you’re not supposed to dump medicine down the toilet? My pee probably shouldn’t be flushed.” He’s still trying to get used to the NJ tube, not too fond of it yet, but it beats swallowing pills for sure.  He had some pain meds switched and now is on a pain med pump that gives continuous pain medicine and has a button that he or I or the nurse can press every 10 minutes for a little extra pain medication.

I’m leaving out the part of my journal where I talk about how much I’ve been crying lately and the descriptions of the events because it’s too much, and personal. Just know that I’m not a robot or a super mom and these days are really tough. And please don’t tell me I’m a super mom because I’m not, and I don’t want to sound like I’m fishing for compliments. I am writing this though because I think it can help others going through this process, to know what to expect.  And, I know so so many of you love Ben and are praying for him and are anxious to hear how he’s doing. So I want to keep you in the loop, all at once ;) I love you all and really appreciate your kindness to my family and myself.  I took a few pics tonight so you can see the ridiculous amount of tunes and monitors he’s hooked up to.

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The ridiculous amount of tubes he’s hooked up to. To be fair, some of these were about to be taken down, I believe.

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Sickie.

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A better view of the NJ tube.

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How do I keep busy? I printed off a bunch of mazes, and I color in the dead ends, and when it’s all done, it reveals the path.  It’s a colossal waste of time.  This is the one I did tonight.

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Finished maze.

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From the last couple nights, before I got colored pencils from child life. :)

1/20

Transplant complete!

Mark and Josh arrived this morning at 6am to Same-Day Surgery for his 7:30 procedure.  I had told Ben the night before that I planned to go down to see them so he wouldn’t worry if he woke up and saw me gone.  So I hung out with them while they prepped Josh and signed consents and met the anesthesiologists and nurses etc.  The surgeon who performed the procedure has done several of Ben’s lumbar punctures and bone marrow aspirations, so it was good to see him again. We walked him down and said goodbye, and they said they’d be done in about 2 hours.

We went back to Ben who had texted me earlier but went back to sleep, and talked to the drs at rounds about Ben.  He’s been in a lot more pain with his throat in the last 2 days, and lots of nausea, where he can’t eat or keep any liquids down.  I looked in his mouth and it doesn’t look too bad yet, so I’m afraid it has plenty of room to get worse.  Anyway, we’re switching meds to iv, getting morphine on a scheduled basis and getting some big doses of antinausea medication.

Soon I went back to see Josh, and the doctors came out and said everything went great, they got all the marrow they needed, and faster than they planned.  Our transplant doctor told us to expect the cells to come back from processing around late afternoon or early evening (the boys have a slightly different blood type so they needed to remove the plasma before introducing it into Ben’s system).  The cells came back way early – at about 1:30, so there was a huge flurry of activity getting Ben prepped with pre-meds, child life coming in to sing, Dr El-Bietar coming to take pictures, Josh coming in to be part of it all, etc.  I’m glad my mom was able to be there with us too.  :)

The rest of the day was fairly low key, lots of waiting around for the bone marrow cells to finish and meds to deal with whatever is going on with Ben. I have a killer headache, I’ll let the pictures say the rest.  Love to all, thank you for your prayers and love and support!

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A bit sedated, ready to go into the OR

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Dr. El-Bietar and Ben after the Dr took his own selfie ;)

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The brothers are TIRED

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But they sit up to watch the cells go in.

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Late night game of halo reach.  Ben and Josh both played the first round, after that, Ben just watched.

1/21 update.
Josh has done great, has dealt with the pain really well and had no complications.  Someone asked how they got the bone marrow out of him… They made small holes along the top of his iliac crest, which is the top of the hip bone.  If you can feel your hip bone on the side of your leg and continue to feel it with your fingers around to your lower back, that’s the part where they were working.  They made 2 small holes in his skin and did all the drilling through those holes.  The surgeon explained how he was going to do this and Josh finished his sentence for him. “You’re just going to move around inside that hole to different spots? OK.” Totally cool with it.  That’s my boy. ;) Anyway, once they tap through the bone, they extract the marrow with big syringes. They took 1400mL but still that’s just a small amount, maybe 5%, of Josh’s marrow, and he’ll replenish it in a couple of days.  His hemoglobin was over 11 this morning which greatly impressed the doctors.  They said he must have started out with a hgb of about 15. He boosted Ben’s hgb also, from 8.5 yesterday to 13.6 today – that’s the most effective blood transfusion he’s ever had! So Josh was discharged around noon with some bandaids on his back.  Here’s a picture of his battle wounds :)

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Ben is getting pretty sick.  He started throwing up last night, yucky green bile since there’s nothing in his stomach.  He can’t eat or drink anything.  This morning we made a change to his anti-nausea meds to see if that will help, to see if we can get an NJ tube down him before his throat becomes completely uncooperative (tomorrow will be the last day probably). He’s getting scheduled morphine but we haven’t moved to the pain pump yet.  He has to wear monitors 24/7 and he dislikes that, so we’re holding off as long as possible.  (an NJ tube is a feeding tube that goes through the nose, past the stomach and into the small intestines – the jejunum – to hopefully avoid having him vomit up a tube which would end in his stomach, which would be an NG tube (nasal – gastric).)

Someone else asked me why he’s so sick if he’s already got his new cells. It’s because of the radiation and chemo, and even though he’s done with last week’s heavy hitters, he is still feeling their effects.  Also, he has new meds and side effects to deal with.  The graft vs host disease preventative med that he absolutely has to take twice a day gave him a bad reaction the first time – his throat was closing up, his face felt like it was on fire, lots of coughing.  Then we tried it in pills but too much vomiting.  So we’re back to the iv, run slowly over 2 hours, pre-med with benadryl and Tylenol. And certain meds can cause lots of damage to his kidneys so they give him extra meds to make him pee all day and night and we have to wake him up if he hasn’t peed in the last 2 hours.  Poor kid.  That med is over for now though, yay.

So that’s the news for today.  Oh, except my mom made ciabatta bread this morning and it is heavenly.  And she’s going through and reorganizing my house :) It’s only fair, I do the same thing to her when I go visit her.  I’m so thankful for you, mom!

1/16 6:15am
I just said goodbye to him as he started his second to last radiation treatment.  He looks exhausted, and not just because it’s so early. Yesterday he said as we were leaving the afternoon treatment, “I hate this place.  You people are fine.  But I hate this whole radiation thing.” I started crying this morning standing there with him strapped to the stretcher while we were waiting for them to be set up, he looks so tired but he’s not complaining.  He just said, “I can’t wait to get back to my bed.” I walked into the room yesterday morning after the treatment as he was throwing up. They added another anti-nausea medication, and it helped for his yesterday’s afternoon treatment, no vomiting, but he still felt kind of queasy.

I just had to run into the room, he started throwing up in the middle of the radiation. I couldn’t rub his back like I usually do because of the dumb vest so I rubbed his arms, neck… Gave him water, waited with him and got him back on the bicycle seat for his last 5-7 minutes of radiation. The thought crossed my mind that some moms would say to the techs, “we’ve had enough for today.  Screw the schedule, we can do this tomorrow.” But I have always pushed my kids to try a little harder, to finish what they started, etc. When I write that out, that doesn’t sound very fair in this situation, since he didn’t sign up for this.  But I knew he could do it. And he did great, and was in a good mood when it was over. One more treatment to go!

Oh, and one more thing, the ambulance rides.  I have no idea what they are costing, but they are a little ridiculous. Wednesday morning, we got ditched by a crew who was changing shifts and promised their relief crew was on their way. The ladies at radiation said it would only take 15 minutes… And they said, “we know, they’re on their way.” And they left.  Soon they brought Ben out to me, saying, “they should be here soon…” Ben was so so tired and wanted to lay down so I laid his head on my lap. 15 – 20 minutes later I had him lay down on the bench while I went to check the various doors, maybe they didn’t know where to go. (the first crew didn’t, I had to show them on the map on my phone.) Didn’t see them, but one of the radiology ladies saw me and as me and asked if she could help. I explained that we were waiting for transport and she was incredulous.  “I can’t believe they left!” and she got on the phone and very nicely raised hell with all sorts of people. Then she I put us in a consult room so Ben could lay down on an exam table and we waited some more, until a children’s hospital crew came and got us.  So now we have experience with Children’s Hospital transport, Mercy Health (they’re the ones that dumped us), Rural/Metro and Lifecare. Lifecare had the most talkative paramedic, a guy from New Zealand who apparently doesn’t like silence because he filled any quiet moment with chatter. Nice guy, but Lifecare doesn’t have hospital rights so we had to wait 10 minutes by the front doors for an escort to get them on and off the elevators. Children’s easily has the best ambulances and stretchers and equipment. $$$$$. There have been 2 other times that we’ve been late to an appointment because of transport. It all boils down to – if I could be allowed to drive my kid to and from the Barrett center, it would cost me about $3 in gas, tops, and we wouldn’t be late for any appointments or have to use the special elevators. Sigh. It’s just dumb.

His ANC is steadily falling every day, but it’s still high enough to be considered a healthy immune system. Still, they won’t let Jill come up to visit, because soon he won’t have any way to fight off infection, and there’s no way of knowing if she’s bringing a bug along with her from school or something, even if she’s healthy.  So Mark brought her with him the other night and she and I snuggled in the family resource center and read a book and talked while Mark went and hung out with Ben.

Tomorrow and Sunday are big chemo days, possibly the beginnings of the dreaded mouth sores.  Have I talked about this yet? Everyone gets them, it’s pretty much inevitable.  If you have ever had a canker sore, imagine that, all over your mouth and down your throat.  It’s a side effect of the combined chemo and radiation. Very painful, and you can imagine, you wouldn’t want to eat or drink anything. Many kids get an ng tube during this time, which I hope Ben will be cool with.  It is better for his body to deal with and recover from than TPN, which is when they just feed the nutrients straight into his bloodstream.

I’m really excited to see my mom, she comes on Sunday, I haven’t seen her in a long time! Time to go sneak in a shower while Ben’s asleep.  Love to all.

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A quick pic as I was leaving the room the other day.  Nobody is allowed to be in there with him. The heavy sliding door is down the hall, around the corner and at least 6 inches thick.

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