Dec 16

We checked in yesterday, his ANC was 840. We’re in North, but I was able to put all our stuff away, basically, using some creativity. It’s fine :)

So, he already got one round of chemo for this phase (nelarabine) last time we were here, and he’s getting 3 chemo drugs during this stay. Two of them, cytoxan and etoposide, are heavy hitters and are already causing him headaches, nausea and vomiting. Those are for 5 days. The third is a teeny shot of clear liquid, called bortezomib, injected into his picc on days 1, 4 and 8. It can’t be more than 1/2 a teaspoon. Cytoxan is a more broad-spectrum chemo drug, if I understand correctly, and he’s had it before.  Etoposide and bortezomib are both fairly new, and they target t-cells, where Ben’s leukemia is lurking (nelarabine does this too).  The goal is to get him down to a negative MRD – Minimal Residual Disease. Mark and I learned today that having a negative MRD doesn’t necessarily mean it’s gone, it just means that it’s gone enough that it’s no longer detectable with flow cytometry.

So the chemo will go for 5 (and one more on day 8) days, and his counts will plummet. Then they’ll let him recover a while here, so he doesn’t catch any bugs outside the hospital. If he’s feeling good and he’s overall healthy, they can potentially let him out on a pass for a couple hours on Christmas day. (Even if we don’t get out, it will be ok, the family will come here.  We’ll make it work!) They’ll do a bone marrow aspiration to check on the success of the chemo, and if he is at negative MRD they will pat themselves on the back and hand us over to the transplant team.  If he’s not at negative MRD, they’ll have a meeting with the transplant team and discuss whether his best option is to go another round of chemo or to go straight to transplant and hope for the best.  Dr. O’Brien, with whom we met today, told us that they do lots of BMTs here and sibling matches are considered a walk in the park, something they practically look forward to, from how she made it sound. Every time she leaves the room, I turn to Ben or Mark or whoever is with me and say, “I really like her.” She’s great with Ben, she’s funny and thorough.  I like all the doctors here, but she’s one of my favorites.

After Ben fell asleep and Mark left, I decided to run to the target up the freeway to get a couple things. I opened the door to the hospital room and standing in the hall was a doctor who said, “Ah! I was just hoping that you’d come out! I’m your doctor on the transplant team, Dr. El-Bietar.” I was so excited to meet him! Dr. Mangino has said such wonderful things about him. It was all true.  We sat and he went over a lot of what Dr. O’Brien already covered (I heard he likes to talk, but I like to hear the details several times, so that was great) and I heard new things and got to ask questions.

So what Dr. El-Bietar expects is for the transplant to happen the 2nd, maybe 3rd week in January.  The week before, Ben will be inpatient.  He will get a combination of radiation therapy and chemotherapy to completely kill all his bone marrow, in preparation for Josh’s bone marrow to take its place.  They used to think they had to inject the bone marrow in various places of the body, but have discovered that the stem cells in bone marrow are very smart, and will go where they need to and plant themselves and grow, so they only need to put it in his iv.  It takes 3-4 weeks of watching Ben like a hawk to make sure he’s not developing Graft vs. Host Disease or getting a fever or infection or any kind of illness, and if he does, they will immediately treat with whatever it takes to keep him disease-free.  So that’s why nobody ever goes in or out of South. Everyone is sitting and watching their kids and scared to bring any bugs onto the floor, probably. I was going to try to be funny there and make a joke but that’s how I think I’m going to be. The doctor said that the radiation and chemo that they give him right before is at such high doses that he will be sicker and weaker than ever before.  He will definitely get mouth sores and won’t be able to eat, most patients get on TPN (that stuff that gives you nutrition through your iv) and he will have pain meds that he can push a button and self-administer. (He heard that part from Dr. O’Brien, he thought that sounded awesome.)

Anyway.  We are grateful to be here and to get the ball rolling.  We’re grateful for LuEtta and for Dave and Andrea who, even on their death beds, allowed her to come.  We’re grateful for our wonderful friends who bring us dinners and treats and offer to give rides to our kids and sit with Ben, and so many other things! We’re grateful to all of you, our friends and family, for your good thoughts and prayers and kind messages.  I was feeling a little down yesterday and after wallowing in the mud for a few minutes, I knew exactly how to cheer myself up, I read your messages and they inspired and encouraged me.  Thank you so very much! I have the best people in my life.

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Well, we’re back home. The short version is that his ANC is too low to start chemo so we go back on Monday to check it and see if we can be admitted and begin. Long drawn out version below, because I’m a dork –

All the bags were packed and I was thinking how nice it is to have a scheduled trip to the hospital, where you can plan ahead and pack what you need instead of asking Mark to bring it bit by bit over many days.  I had a bunch of food for me, a bunch of comfortable bedding in 2 big bags and one of those eggshell mattress toppers all rolled up in its package.  I had my purse and a bag holding my binder and Ben’s laptop and cords. And of course, a suitcase – but instead of the little carry on I’ve used every other time, this time I used a big rolling duffel bag – my idea is that I can store it under his hospital bed! Nobody ever uses that space! Storage space is such a premium commodity in these hospital rooms, especially on North.

LuEtta* was going to take the van back home instead of having Mark drive them down and pick it up later, it just seemed more sensible with all the things that were going on last night with the boys’ choir concert and such. So, my idea was to get a cart and bring it down and get our stuff on it, get Ben, and go up to 5 where we were supposed to go.  Usually it says clinic on my little reminders but this time it just said A5. So I didn’t even think about the clinic.  I stopped by the desk and quickly validated the parking ticket, but they were in the middle of helping someone else so I didn’t wait around to check in, because I first needed a cart! And the front desk doesn’t know where those are. So I went over to a security guard by the A elevators and asked him, he had no idea, so I said, I’m going to go check on 5. He said, go ahead.  So I went up.  I looked where they store wheelchairs, nope.  I then went over to Central and walked in when another family swiped their key card. I stopped at the desk and said, “Hi, we’re supposed to be admitted today.  Do you know where I can find a cart to bring up my stuff?” And I realized I was talking to the HUC with whom I’ve had a couple run-ins before. (She’s the one who had told me I can’t write notes on my glass door in expo marker.  After I’d been doing it for a couple days and it had been working great.  So I then wrote my note on a paper towel and taped it to the door.  She got fed up with me and typed up my message and gave it to me in a sheet protector. “Everything posted on the door needs to be in a sheet protector.” Fine with me.)

Anyway, back to the story.  Ms. HUC said, “wait wait wait.  First of all, I have no idea where carts are ‘sept the cart I have here. The PCAs find them wherever they can. Second, you’re sposed to be admitted? How you know that? To here? We’re full up. Donna, check the sheet.” I glanced up at the screen behind Donna’ s head that lists the last names of each patient and their assigned nurses and doctors. It was indeed very full. I smiled at Ms. HUC and Donna and tried explain what’s going on, trying not to sound crazy but failing. Ms. HUC eventually patted me on the shoulder and says, “Donna will take care of you.” and pushed her cart around the corner.
Donna kept muttering under her breath, “I bet they’re sposed to go to clinic. Clinic. Sposed to… Clinic.” and so on.  For several minutes I stood there with what I hoped was an easy going look on my face while she typed and shuffled through papers and did her regular job (which definitely takes priority over me, but just tell me to go away if you’re too busy.) She then announced that yes, we are definitely supposed to go to clinic.  I said, OK, thank you, sorry for the trouble, can you please buzz me out? And I raced to the elevators. Ben texted me just then asking what’s the hold up. I said, still looking for a cart.

I went to the clinic and said, “hi, my son Ben -” the lady pointed to the sign in sheet where a couple and their child were already huddled. I tried again. “It’s just that we’re supposed to be admitted today, and I have all our stuff and I’m wondering if there’s a cart I can use to bring it all up from the garage?” The lady said, “Oh. Well, it might be a while before he goes up… How about you leave his stuff in your car and get it later?” I wish. “My mother in law is taking the van.” “Oh. *siiiiiigh* Let me call someone.” After a while they procure a lab cart, saying this is the best they can do, and smile as well as I can and thank them and get to the garage elevators, planning out how I can possibly use this thing. Purse and computer bag – top drawer.  Food – bottom drawer.  One bedding bag goes in the space under the drawers, other bedding bag and mattress pad tie together on top, Ben’s blanket and pillow on top of that.  And the suitcase dragged in the other hand.  And the backpack on my back.  Looking like a homeless person? Double check!

LuEtta spotted that I lost a pillow on the way to the garage elevator before she drove away so I ran back and tucked it back in under the cart.  Then we were off to make a spectacle of ourselves.  I tried to keep the cart out in front of me and the suitcase close to the side because Ben likes to walk next to me and he’s a little wobbly so he takes more space than usual.  Then he wanted to push the cart, which I wouldn’t let him at first but then I figured, what the hell.  We’re already late.  So he pushed it and then we REALLY stopped traffic.  In both directions.  We were like a huge slow moving boulder in a stream, people had to squeeze past us.  On three separate promenades down the hall – first to the main clinic, then down to the older clinic because they always are full in the main clinic but have rooms in the other one, and then at the end, to wait for Mark to come get us. 
In every place, once all our stuff was against a wall everything was fine, it was all pretty compact. So we were in our room waiting for our hospital room to open up, and the nurse came in and did labs, and Dr Mangino came in and talked to us and examined Ben and was happy to hear that his feet are feeling so much better! He’s losing some function in his hands now but we’ll get him working with OT to keep on top of it.  A little while later Dr Mangino popped her head in and asked to talk to me in the hall.

She said some of the cells in his blood work looked strange, and she is going to go look at it under a microscope with the pathologist to get a second look.  His ANC is 200 which is too low for chemo, but if the cells are abnormal (which she thought was unlikely) then they’d start chemo right away.  They looked and were pretty sure it was fine but ordered immunophenotyping to make sure and everything is OK, she called me last night to let me know. 

Anyway.  We go back Monday morning at 8am. They would like for his ANC to be 750, but they’ll take 500, and we’ll be admitted. We were bummed to be sent home because this definitely ensures that we will be in the hospital for Christmas.  But, Dr. Mangino said that if he’s doing well we might be able to get him home for a couple hours on a pass. Ben was in a really really bad mood after hearing that we wouldn’t be checking in and doing the math about Christmas, and was taking it out on me. We had to wait a while for Mark to get out of work to come pick us up and the clinic room was making him more and more upset. I decided we could do with a change of scenery and did our third promenade.  We at least had pretty and interesting Christmas trees to look at out there, there has been some type of competition for decorating Christmas trees in the main corridor and they are very cool to look at.  Got his mind off things and pulled him out of his funk a little.  But he was still spitting venom when Mark finally arrived.  Getting him some chick fil a on the way home helped!

OK. So now he’s under house arrest and very mad about the situation. He’ll live. ;)

* LuEtta – so glad she’s been here for the past week willing to help us out! He was scheduled to go back in the day she came to town, but he has been delayed, so we all have been able to enjoy her company. We have felt bad that we’ve been hogging all her time with
no emergencies over here, so she has gone off to visit Michael and Tracey and their adorable kids for the weekend. I’m so glad that she will be able to see them and this visit will be more worthwhile!

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Dec 8

Hello friends and family, I’ve had a few inquiries about Ben and how he’s doing so I figured you’re due for an update.  He’s doing well! Generally in a good mood, even tolerating his sister being in his room and watching some Netflix with him occasionally. He’s taking his pills better, especially since we’ve eliminated some of them, paring them down to the essentials, and using gelcaps for anything unpleasant-tasting.

His feet seem to be feeling better – I soaked and washed them tonight and he winced in pain but no tears. It still hurts if he bumps into something or someone accidentally sits or steps on them. He is very wobbly and has fallen down a couple times, and as a consequence is now nervous to leave the house unless I am able to keep both hands on him.  (He was surprised that I was so strong and able to pick him up so easily, haha. Under this layer of winter blubber that I’ve been working on while sitting on my rear at the hospital, I’ve still got my muscles.)

As far as the plan for December – you may recall that we were supposed to check back in this past Friday. Our doctors took pity on us, though, and allowed him a little more time to recover from the last chemo treatment. Then the idea was to come back this Wednesday, for our best shot at being out by Christmas.  However, I had asked them several weeks ago if it is at all possible, can we avoid the hospital on the evening of December 11th, or get Ben out on a pass… I bought tickets back in the early summer for an event that night for the whole family to attend. It is supposed to be an early Christmas present. The older boys know but I haven’t told Ben or Jill, just in case Ben gets a fever or something and isn’t able to go, I don’t want him to be really upset.  So anyway, they decided it would be easier to start his treatment the day after instead of trying to get him out on a pass. So, cross fingers and knock on wood that we can make it to Thursday with no fevers or weird medical problems!

The rest of December – he is to get some heavy duty chemo for the first 8-9 days, which will cause his counts to drop drastically and hopefully completely eradicate the leukemia. The rest of the time in the hospital in December will be waiting for his counts to come back up to a high enough level that it is safe to release him to go home. And we hope the release date will be by Christmas, but there are no guarantees, and I am definitely not going to push them on that, since I feel like this is our big chance and we need to do this right.  So I’m going to be extra vigilant about germs and meds and nutrition and everything I can to make this work. Once he is released, he will stay home for a couple weeks while his body continues to repair and prepare for the transplant.  I’m still a little fuzzy about that stage, and I told Dr. Mangino, our head oncologist, my worries about having him home with a zero ANC and a stupid dog that still has potty accidents occasionally, that can’t be healthy? She said we can’t use that as an excuse to get rid of the dog (dang it) and any illnesses he gets will have most likely come from within him and the benefits of having him home outweigh the precautions of the hospital. Which, I agree, I don’t want him stuck in the hospital the whole time, I just wanted to see if we needed to get rid of the dog. ;) She’s cute and she’s happy. But she’s not playful or affectionate.  She’s an old lady beagle and she’s not the worst dog, definitely, and if it weren’t for the pee I’d be ok.  But grrrr.  OK dog rant over. :) I like animals. She’s a good dog.

Anyway. Back to the schedule… He comes home when his counts come back up.  Then he has a couple weeks before the transplant, while there check his systems and organs I guess and make sure he’s ready for it. And, they give Josh his shots to prepare him to donate. So around the middle of January they should be ready. We will then check into the elusive and mysterious 5 South wing, with all new doctors and nurses – the bone marrow transplant wing.  I feel like nobody ever goes in or out of that wing – the steady streams of traffic certainly flow from central and north and barely from South. I’m sure the doctors and nurses are lovely in South. I’ve grown attached to the awesome doctors and nurses in the main hem/onc wings though, and I don’t know how different things will be over there in South. I feel like we’ll be in stricter isolation from some of the comments I’ve heard about transplant recovery, but I really don’t know.  I honestly need to reach out to some people who have been there, and I have been given several names of lovely people, I just haven’t had a chance yet. I will.

One more plug, if you are available on this Thursday night between 6-7 and don’t mind a q-tip swiping your mouth a little, and would like the chance to be a hero, come drop by my church and get on the bone marrow registry.  You’ll feel like Superman or Wonder Woman and all you have to do is swab your cheek! ;)
7118 Dutchland Parkway, Liberty Township.

Love you all, thank you for all that you do for us.

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He knew full well that there was a blob of bbq sauce on his face.  “I know. But do I have any on my LIPS? I don’t want bbq sauce on my straw. I’m just going to leave it on my face.” weirdo.

We’re HOME!  Wooooo!! That was another longer-than-expected stay. We were hoping to be able to come home Sunday evening and finish Ben’s nelarabine treatments on Monday and Tuesday in the day hospital, but his low ANC, low hemoglobin and a weirdly high creatinine reading on Monday morning prevented that. So, today, we thought we’d be out fairly quickly – just finish up caspo, nelarabine and a healthy helping of platelets because he’s getting low.  Sigh.  I always seem to forget getting released takes for-e-ver.

Anyway.  Nelarabine exacerbates neuropathy, have I explained that? So they’ve come in and assessed him every day to decide if they should continue with the nelarabine that day or if it’s going to make his pain completely intolerable. They’ve increased his neurontin dosage and adjusted the frequency to when he’s allowed oxy, but he’s not using it as frequently as they’re allowing (4 hours instead of 6) so that’s good. They’ve also added an amitriptyline to help his pain at night and help his sleep. Last night was the first night he took it.  It was awesome, he got up to pee twice but went right back to sleep, like a rock :D

So the plan was to start the next round this Friday, being admitted for 2-3 weeks. They want to give his counts a little more time, however. We are probably checking in next Wednesday for those 2-3 weeks. That will still hopefully get us home in time for Christmas.

Now, for a shameless plug for my local friends!!

On Dec 11th from 6-7 pm (not sure of the end time actually), there is a Bone Marrow Donor Drive at my church, as part of the life-saving Be The Match Registry!

It’s incredibly easy, no blood test required.  I had to do it to see if I was a match for Ben.  They swab the inside of your cheek with a big q-tip, that’s it. 

If you’re between the ages of 18-44, patients need you.  If you’re over 44, you can make a $5 donation. I don’t know what’s the deal with the age limit, read about it and any other questions you have at bethematch.org :)

It’s a very worthy cause. I know a couple people who have been donors for total strangers, they haven’t missed that bone marrow or regretted that decision! ;) Chances are you wouldn’t get a phone call that you’ve matched, but wouldn’t it be amazing if you had the opportunity to save someone’s life?? Please consider going to the Registry!

Be The Match Bone Marrow Donor Drive
December 11th, 2014
6pm
7118 Dutchland Parkway, Liberty Township, OH

Thank you for all your support, love and prayers!

Hello friends.
It’s been a long time.
I’ve been writing on evernote and transferring my posts to Facebook and Caringbridge, but I don’t like Caringbridge, I miss my WordPress blog.  It has a pretty little app for my phone :) So I’m going to switch over, and update.

Ben, my third child, has leukemia. He was diagnosed on September 12th, 2014 with high risk T cell Acute Lymphoblastic Leukemia.

I have been documenting this process to keep our friends and family updated, because we are so grateful for the love and support we receive from you all and I know you are concerned and want to know what’s happening. Also it has been cathartic for me. A couple people have pointed out that this could be helpful for others who have to go through this. And it’s true, I searched for blogs that documented other children’s journeys through ALL but didn’t find many that matched my child’s specific illness.

So, we’re right in the thick of it – we went through the first two phases, Induction and Consolidation and they weren’t successful enough – so now we’re preparing for a bone marrow transplant.  Josh, our oldest son, is a perfect match.

So that’s the short version, I’ll start transferring the entries over when he’s sleeping (we’re in the hospital right now). Happy Thanksgiving!

Day 2-3 of consolidation.

Both Ben and I agree that going to the hospital is already getting old. ;)

We left the hospital this afternoon from his day 1 of consolidation, which required 24 hours of fluids to flush out the chemo from his bladder or it would do serious damage. He was cranky and his knees and ankles were in a lot of pain through most of the visit. Also, I realized just how cushy we had it over on the central part of the oncology floor. Our room was on the north side, the markedly older side, and holy guacamole, it was practically ghetto. I tried to keep a positive spin on it, but there is no comparison to the bells and whistles that accompany the rooms in central. Anyway, I’m off on a tangent because I’m all distracted tonight.

Because… We are back at the hospital tonight. I woke him up at 11pm because it was time to give him his chemo pills and decided to take his temp at the same time. It was 101.4. Dang it. I took it again, same thing. So I had to call, and of course they wanted us to come in. Straight to the emergency room, within the hour, so they can start antibiotics asap.

So I packed the bags I had just unpacked and we headed back.

Now we’re sitting in our room in the ER, the nurses were a bit flummoxed by the picc lumens but were able to start the antibiotics just in time to avoid giving him a shot, and it’s almost 2am. I realized that his fever might be due to the flu shot they gave him right before we left this afternoon. Duh. I asked the doctor if that could be the case, he said he would bring it up with the oncologists. Sigh. Maybe we can avoid the promised 48 hours of antibiotics, but, whatever.

5:20am and finally we got a room and we had answered all the questions and they had taken all the bodily fluids they needed and almost all the people were leaving us alone, time for bed. :/

Good news and bad news.

First of all, we came home yesterday! Josh and the other Mason drumline guys came to the house to surprise Ben, and I can’t tell you how much I love those boys for that. I love the drums in any band performance, but our drumline is particularly awesome :D It was a crazy night. The home care nurse came right after the drumline left to discuss the meds and had to wait around an hour until the box of supplies arrived, so she could watch me flush his lines. I passed. ;)

Then I was up until 1 catching up with Josh, Ben woke up twice, and I was up at 5:45 waking up Sam and Josh (I let them sleep in and skip seminary.) Mark is on a business trip. Back to real life!

And LuEtta leaves today, she has sacrificed SO MUCH of her time and talents to keep our little family running. She deserves a medal and a trophy and a billion dollars. But I don’t have any of those. So my inadequate hugs and thank yous will have to try to be enough.

So now for the good/bad news. Good first – when we left the hospital, his ANC was 2,780 – almost triple what it was on Sunday! That is seriously amazing :) that’s healthy person ANC! And his white blood cell count was 15.3 which is higher than the normal level. I asked the attending oncologist if that was something to worry about (it was when we first came in) and she said no, because now they are healthy white blood cells. And they’ll go up and down with the chemo. But still, yay!

The other good news is that yesterday’s spinal tap was clear, it showed no leukemic cells. That was expected, but always very good news. :) If leukemic cells had been found, that would mean that the disease had spread and would need to be treated much more aggressively. But he’s been acting too healthy for that. ;)

The bad news, and it’s not all that bad – I got a call a little while ago from one of the oncologists. That’s usually bad news in itself. She said they have preliminary reports of the bone marrow biopsy. The definitive results will be available tomorrow, when we have our scheduled appointment to come in and discuss them, but she wanted to call and talk about them first. OK. So… The goal of Induction was for the leukemia to be down to less than 1%. His has greatly improved, but it’s not where they want it… It’s around 1.8%. So instead of waiting until next Wednesday to start the next round of chemo, they want to start tomorrow. So we go back in overnight again, just one night this time.

But again, the good news is he has really good counts, or he did yesterday, so he should tolerate this much chemo back to back fairly well.

This morning he is in a lot of joint pain, which is a common side effect of the methotrexate (the chemo drug they injected into his spinal cord yesterday) :( I am writing this in between leg rubs while Grandma goes to pick up some pain medication. Can’t give him motrin, it interferes with the chemo. No Tylenol, it might mask a fever.

So. That’s the latest. Oh, and I got a tentative calendar penciled all the way out to April 2015 of what the treatments will look like. It’s probably all just been thrown out the window because of this new development, but I am happy to have a picture in my mind of what the next 6 months will look like. :)

Love to all. Thank you for the warm welcome messages :D

One month ago today, we got the news that would change our lives. No matter how much we will strive for normalcy from now on, our schedules and travels and family activities and level of germ awareness will revolve around Ben. Well, at least for the next 3+ years.

I might have been too optimistic about the next phase… I have been envisioning consolidation and maintenance as fairly smooth sailing, that Induction is theworst part of treatment, and that the hardest part is behind us now. But. There was a little luncheon thing for caregivers down the hall on Friday, and they were practically begging for people to go. So I went. There were 2 other parents there, a mom of a 5 year old who I’d seen around, and the dad of a 22? year old who was diagnosed with a different kind of leukemia, AML, in 2011. Listening to them was eye opening. The dad had been in the hospital with his son this time for the past 9 months, it sounded like. He had relapsed at least twice from what I gathered and had a bone marrow transplant. AML is much more difficult to treat than ALL, which is what Ben has. The mother of the 5 year old was saying how worried she was about this next round of chemo, that she had hoped the dosage would be lowered. I asked her what were the side effects that she was trying to avoid. She said he got terrible mouth sores all over, making eating impossible. The dad chimed in and said his son got that too, and also all down his throat to his esophagus. This makes me worried… For some reason I thought we dodged that bullet because he never got mouth sores while in here, and even though he’s gotten better at doing the swish-and-swallow nystatin, he still hates it, and I was for some reason thinking that would stop once we left the hospital. But, if a 20-something kid can’t keep on top of his mouth care enough to avoid mouth sores… Crap.

I’m still not the type to freak out. This extra information is good – just one more thing to keep an eye on. It also gave me a heads up that we’d have more medication than just the one pill that was shown on that sheet. And today at rounds, that was confirmed – about 6-7 prescriptions are being called in to our cute little neighborhood pharmacy. I hope they’re ready to become friends on a first name basis with us. ;)

He had a rough night and morning, belly pain and then still under the fog of the phenergan this morning, cranky and sad and not knowing what’s wrong. When that finally wore off he was doing much better. His ANC was 590 yesterday so he got to go out of the hospital on a 4 hour pass with Mark! They saw Dolphin Tale 2 and went to Steak n Shake. He had a great time, and I think it’s made him a little more antsy to get out of here. :)

Today his ANC is 880 (!!) but his hemoglobin went down to an 8.6 so they’re going to check his levels at midnight to see if he needs a transfusion before his bone marrow aspiration tomorrow morning. He’ll also get a lumbar puncture with chemo into his spinal fluid again, and once he’s all recovered and all the people who need to have signed off on him, we can go home :)

October 9th (almost 10th)
We are in the home stretch of our month-long hospital stay! Thank you to everyone who has gone #baldforben, and all who have supported those who have shaved their heads or cut their hair – it’s a huge commitment and we are very touched at all the love everyone is showing each other. Thank you also for the cards from all over the United States and Canada! It has been really fun to find all these places on the map, and some people have included pictures of their gorgeous areas – Canada really looks like a beautiful place! And thank you also to my wonderful friends who sent care packages. I just love you all so much. <3

So today, we finally got some information about What Happens Next. Thank goodness, because I was starting to worry that they were going to spring all the info on me as we were wheeling out the door.

1- the picc line will not stay in for a couple months, we have a surgery scheduled to place his port on October 22nd. (port is short for portacath, a circular device placed under the skin on the chest, with a tiny tube a lot like the picc line, it goes into a vein and ends right above his heart.) People will be able to see a raised circle on his chest most likely, but it will give him a lot more freedom because the entire access is under the skin and we won’t need to be careful about an open path into his bloodstream 24/7, if that makes sense. Anyway, they will put numbing cream on his skin when they need to access his port for blood draws and giving meds and chemo. If they’ll be doing several days in a row of chemo, they can leave the needle and access line in and tape it to his chest, much like the picc line, and easily remove it when they’re done. He can/will have this port for the next several years. He will be able to swim, ride bikes and play but no contact sports, nothing where there is danger of anything slamming into his chest. That means baseball and roller coasters with chest/shoulder restraints (=the good ones) are out for the next several years. So he’s a little bummed about that.

2- this phase we’ve been in at the hospital is called Induction. The next phase we move into starts on October 22nd as day 1 and they call it Consolidation. There are 57 days in that one. There are 2 scheduled overnight admissions where the chemo requires 24 hours of iv fluids, otherwise we will go to the hospital every Wednesday for sure for chemo, and then some other days too, and sometimes they’ll just come out to the house. They’ll also come out to take blood draws fairly frequently (but not every day like it’s been here). They taught me how to flush his picc lines, I need to do that every 12 hours.

3- They’ve also hammered into me that if he shows a fever of 100.4 one time, to call, and they’ll most likely tell us to come in. (anything higher we are all very welcome to freak out as we drive directly there I guess. Oh – and this gives us a free pass to never sit in the emergency room waiting area ever again, ha.) I have gone over a long list of things to watch out for at least 4 times, but that’s good, there are a lot of them. Any suspicious anything, call. For a fever, they’ll want him on antibiotics within the hour if possible, and he’ll probably stay here for 48 hours until they’re sure his blood is bacteria-free.

4- the blood count numbers are very important. His ANC (absolute neutrophil count) is The Number that will determine what level of activity he is allowed. Anything under 500, they’d very much prefer that he not go outside. Or, if he has to go outside, that he wear his heavy duty mask. If he’s higher than that but going to a public place with lots of people in close contact, he should wear at least a paper mask and lots of hand washing. If he’s over 500 and is out in the fresh air, that’s ok as long as he’s not with anyone who has a cold or anything. Just for comparison’s sake, a healthy person’s ANC is anywhere from 1,800-8,000. His last 3 days have been 260, 190, 430.
The other numbers are his hemoglobin and platelets. Neither of these have been a problem for the last 2 weeks. If his hemoglobin gets below an 8 he’ll need a blood transfusion (he’s at a 10) and if his platelets get down to 20 he’ll need a platelet transfusion (he’s currently at 271, which is within the normal level :) )

Oh. The one last variable is based on what the results of the bone marrow test on Monday will show. There’s one chemo med that can go 3 different ways (dosages, frequencies, etc) based on how much leukemia is left in his marrow, and whether any has found its way into his spinal fluid. They will give us his full finalized schedule of dates with the chemo clinic and the oncology floor on the 22nd.

We thought maybe we would get to go to Atlanta for Josh’s band competition at the end of the month and see some old friends on that trip, but every one of those days is a chemo day. Bummer :(

This has been a long post. Tl;dr: home on Monday, lots of germs out there! Love you all!

This kid. After all the back stuff yesterday. Last night at 1am I told him my head is killing me, I’m going to lay down with earplugs in (the air conditioning is always running and it’s fairly loud) so if he needs me, yell. He was set up with pain med and TV and pretzels and water. At 1:50 I woke up and said it’s time to go to sleep. He pointed out that he had a 4 hour long nap. I said, fine, finish this show and turn it off and go to sleep. (migraine, no mood to argue.) he said, “it’s nice to see you up again!” he woke me up once in the middle of the night for something, I can’t remember what, and the latest is 6am. He said, “look mom – it’s 6:00. Straight up and down.” and I first thought that was a respectable time to wake up. But then remembered he has had less than 4 hours of sleep, and can’t even order breakfast yet. So I told him so. He reminded me of the nap thing and talked about the math of naps + nighttime sleep, of which I fell asleep during. And he asked me if I came over and messed with his hair while he was asleep. (no, of course not.) He then he puttered off to the bathroom. He just came out at 6:40 and announced that he isn’t hungry and he will go back to sleep after all.

I took 3 migraine pills yesterday and I am about to take another one, just sayin. I think it’s mostly the weather. :P

Roxann and her friends strike again with a big pile of cards yesterday, and a set of drumsticks and a very nice letter from John Ritchie – drummer of the band Throw it Down. He was in too much pain to open all the cards yesterday, so one of his Three Good Things last night was that he has a bunch of mail to open today :)

Also, lately he is usually not hooked up to his pole unless he’s getting medication – meaning he’s no longer getting fluids round the clock, which has meant a lot more freedom and mobility :) so yay :)

And last thing, yesterday he told me that today is the day he wants to shave his head. Last night he pointed out a bald spot. The hair falling out might be bothering him more than he’s letting on… He’s really been funny about fixing his hair for the nurses even in the middle of the night if it’s sticking up, this was before he even knew he’d lose it.

Oh, and one more last thing. His appearance has changed quite a bit. Prednisone gives people “moon face” – it makes your face swell up. I wanted to warn you of that before I post the next set of pictures. So here comes the fat bald man I talked about…

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