Abby went into the hospital on Tuesday morning and started with the chemo that's in this next week. It's the same chemo she had last week. They anticipated she might get high fevers this week since it's the second go around and they were right. She's been spiking some pretty high fevers but last night and today so far she's been normal. She needed some more red blood cells which they gave her. They also give antibiotics and an antifungal in her IV once she starts with a fever just in case it's not chemo induced. She slept off and on yesterday but today she's a little more chipper and not as sore everywhere. Mark has been down with her the whole time because I'm sick and can't go to the floor until I'm better. My mom flys in today and will head to the hospital to take a turn hanging out with Abby.
We had planned the big bone marrow transplant consultation meeting tomorrow but our doctor is also sick so it's been rescheduled for Tuesday. We were able to get a little bit more concrete information about when things will roll with that. It looks like the end of this month she will start all the pre-testing if her counts are up to certain places. Then the week of March 14 she will have the transplant. Big steps ahead. We are daily hanging onto truths that God loves Abby and has a good plan for her life, even though it hasn't gone how we'd like. It looks so spiritual when you put it down in letters on the page. Truthfully, it's a wrestle. But, we've enjoyed many blessings on this journey even though it is been really rough. Abby is dealing with things most people don't have to deal with until they are much older. She's also wrestling with her own faith in a way that most kids don't have to do until they're older. We are hopeful that God will redeem and make new and beautiful things out of these ashes.
Abby got home Thursday afternoon. She's doing pretty well. She's on a high-dose steroid pulse which makes her really emotional. Her mucositis is healed so that is a great thing. She enjoyed painting some calendar pictures while she was in the hospital and I thought you all would enjoy seeing February's page. We are refreshing and getting some much-needed family time before she goes in for a couple of weeks on Tuesday.
Abby is doing the inpatient thing for a few days as she starts the 3rd block of her treatment. She checked in (no bellhop here!) Tuesday morning early (she and Mark drove to Denver through 14" of snow) and had her bone marrow biopsy and some spinal chemo and is now comfortable in her room getting more chemo and the high-dose steroid we like to call "the grumpy pill". Teenage hormones and steroids are not a good combo. This week's chemo gives her irritated eyes so they are giving her eyedrops every 4 hours to help. She may develop an infection in her eyes also and this chemo can give high fevers in addition to the nausea that comes with most chemo. So far, she doesn't have a fever. If that continues, she can come home Thursday late afternoon. If she does get a fever, they will do a blood culture and keep her 24hours after the blood culture stays negative. Her GI mucositis is just about healed up and the chemo she will get in a couple of weeks that caused it last time is a lower dose so hopefully she won't run into that problem again. So....that's the medical details. It's always hard to know how much you all want to hear on that front. The long list of procedures, medicines, and side effects gives you an idea of how she's doing but it doesn't give the full picture, of course. Abby is a trooper. The hospital stays are challenging because the sleep isn't great, the food is so-so, and she feels crumby most of the time. She loves being home, hanging out in her room, reading, playing with legos and her sisters on Minecraft. But we have enjoyed several chunks of time at home with her and we are so thankful. This month involves a lot of hospital time, most likely, but we are hopefully that there will be a couple of long weekends to enjoy as a family. My mom is here helping out which is a huge blessing. She is amazing! We are so grateful to my folks for doing this. She is planning on staying off and on through the bone marrow transplant. On that note, we have the consultation probably next week when we are in the hospital again for a repeat of this week's chemo. We will get lots of information from our new bone marrow doctor, get to ask all our questions, and Abby will get a full exam. Then, as we understand it, once block 3 is over, we wait for her counts to come up to a certain point and then we start doing scans and tests to check out how her whole body is doing, looking for any possible infection before the bone marrow transplant goes forward. You can join us in praying for all that this month has in store and for Abby's heart as she processes all of it. She is weary, we all are. We need wisdom on how to help her walk through this. We need strength to care for her, comfort and support her and each other. Thank you so much for your prayers and support.
Today was Abby's birthday. We had a small family birthday at lunch and then a few friends over for pizza dinner, ice cream Sunday dessert and lots of giggles in the living room.
It was a fun party, and unique too. We had everyone wear hats since Abby now has no hair -she's still a bit shy about that. So, to make her feel comfortable, they all wore hats. Great friends. We had lots of sanitizer and masks on hand to keep the germs at bay as well. It's not exactly the party that we'd all want, but we have to adapt and so we try to have fun with it.
Overall, Abby has had a good week since she came home. The pain quickly subsided, her ANC is moving higher and once she hits 500 for her ANC (immunity count), they will start the 3rd block of Chemo. That will probably be on Tuesday and will start with a bone marrow test, 5 days of Dexamethasone (the grumpy pill), some chemo in various forms (including the dreaded leg shots) and an in-patient hospitalization. Hopefully this will be a short time in, maybe a couple, or 3, days.
Then some clinic visits to make, a Bone Marrow Transplant team meeting on Friday, some more clinic time and then a long hospitalization for what might be the remainder of the month. Hopefully this will be less intense than the last hospitalization but I won't be holding my breath.
Regardless of what is to come, this little relaxing week at home really was a super nice little calm before it get going again. It was a great, and much needed, break. I took some bike rides, Tiffany and I saw a movie, we had some time with friends and some fun nights as a family too. Still not the same, but I'll take it.
So, here we go again. Probably starting block 3 Tuesday so we better make tomorrow count.
Well, they finally let her out! She was at 10 for a long time, then 40, 70, 90 today. They won't let you out till you get to 100 so they decided to do another blood test today at 3pm (instead of waiting till 1am like normal) and she passed!
So, she's on her way back home as I type. It'll be nice to be together as a family again. That was a long stint in the hospital. She still has some pain but I think it's more manageable now and she's off most pain meds except Tylenol. Hopefully now that her immunity is coming back up she'll heal up quickly before we start the next chemo round.
We got the match results today and have a match... actually 2 matches! Yup that's right both Anna and Lily are matches for Abby's bone marrow type. Very rare that both siblings are matches. The bone marrow transplant (BMT) team will do some further blood tests on both girls to see who might be a better match and then we'll go from there. We have an appointment with the team in early February to get all of the details and hopefully have a better understanding of the timeline too.
In other news, Abby is still in the hospital, still in some pain (but much less, just depends on the day), off of the morphine, and still has an ANC of 10. We have to wait until her ANC is 100 to leave and I think they want her pain to be manageable with oral medication too. Hopefully we will continue to move in the right direction.
We watch a lot of movies, do some crafts and she has built a few lego kits that friends have brought in. The legos have been a nice distraction and it is great to see her actually use her brain a bit more than just watching the cooking network. Since we are probably here for a while longer I decided to buy her a big kit for her to work on. It has 1600 pieces so that should keep her busy for a while!
Today was a busy day actually. Abby finally got her head shaved as the hair loss was ramping up again and she was getting tired of the mess of hair. We also changed rooms to a room with a tub so that she can take some baths now. That is a huge help for her right now so we were very happy. We actually have the same room that we had for the initial stay and it is a very nice room with a great view.
So, lots is going on this week. On Thursday morning, before we had to rush Abby down to the hospital, we all did our cheek swabs and sent them in to the lab to see if any of us will be a bone marrow transplant match. I don't know when we'll have the results but at least it is all sent off.
It was nice to be able to do it at home but it was a bit stressful too. I just kept wondering if I was doing it ok or not. I didn't want to mess up for sure. Lots of pressure on those cheek swabs. I almost dropped one of Annas but caught it mid-flight before it hit the ground. I had 4 swabs for each of us so it would've been ok but still, a bit stressful.
The 2nd MRD (minimum residual disease) test will be sometime this week. It was suppose to be on Monday but since she has no white blood cells to test they will need to move it to later in the week. We should have the MRD result and our bone marrow match test results soon too. At that point, they will be able to make some decisions on what the rest of the winter and spring will look like for Abby.
We do hope that one of us is a match and that her MRD is a lot better than last time.
On the hospital front, Abby is doing better. Still on some pain meds but she can go for longer in between the doses now. She's also eating again, at least a couple meals today. I'd say she is 50% better and we just hope things keep moving in the right direction.
So, Abby's having a hard day but better than yesterday. Without going into too much detail, Using the bathroom is very painful. She was on morphine yesterday and has a standing order for it if she needs it. They almost gave it to her again today but the oral pain med finally kicked in. They think it is probably sores, like a canker sore, in various places down her digestive system. Just part of how chemo works, targets rapid dividing cells, and can be indiscriminate.
It's so hard to not be able to take the pain away. But she's in good hands here.and I'm glad they have pain meds that help her tolerate the pain. Once her blood counts get better her body will be able to start to heal again. Hoping and praying that that time is soon. Her ANC is still at 10 so she has a ways to go.
Thanks for reading, for all the Facebook comments, texts and for everything else you all are doing to help our family through these trials.
It's really not fair to you all reading this, we either post when things are hard or we don't post at all. I guess the fact that we hadn't posted much lately was a good sign. But I'm sure we'll be posting more soon as things are getting pretty tough right now.
Abby is still home and that's been nice. Actually last week, though we drove dailiy to the clinic, 1.5 hours each way, wasn't as bad as we thought. Abby tolerated the medicine pretty well and we enjoyed having here home in the evenings. It takes about a week for the medicine to fully work: drop your blood counts, give mouth sores, digestive issues, and kill the bad cancer cells too. So, that's where she is now, at the bottom.
It's a tough place, the bottom. It's tough on her physical of course but emotionally too. She cries a lot about her sore everything and just wants it to go away. I just want to take it all away. But standing by her bed, rubbing her back is about all I can do for her right now. I want to take it away but I can't.
As a parent, this is one of the hardest tensions that I've ever encountered in life. What do you say to your crying little princess with cancer in a time like this? The answer is, 'nothing'. You say nothing and instead you cry with her. You rub her back and wipe her tears. You run your fingers through what's left of her hair and you pray words for her that she can't pray for herself.
At the beginning of this I wrote an email to some of our friends in Colorado. I said that this is the hardest thing we every had to do, twice. That's true. But, as my friend reminded me the other day, I often also say that I'm, 'just taking it one day at a time.' I think that is God's grace in this week too.
So, through the joy, the pain, the good days and bad, I'm just going to continue to fight for myself, my family, and especially Abby to just take it one day at a time.
Ok, so I had the best of intentions. I have a stack of thank you cards that I sincerely would love to sit down and spend time on, thanking each and every one of you for the gift cards, meals, blankets, craft supplies, slippers, hats, coloring books, stuffed animals, notes, cards, money, and many other wonderful heart-felt gifts you've all sent to help Abby and us through this. However, as you can imagine, it's been a challenge just keeping food in the fridge and the laundry done.
I know no one expects a thank you card from us right now, but we want to make sure each person knows how much we appreciate your thoughtfulness.
So we say a very sincere "thank you" to each of you who have reached out to us with a gift, even if it is a simple card with words of encouragement. It helps tremendously in the practical sense but also in knowing we aren't alone in this.
There's a cool story in the bible where Moses is trying to keep his arms and staff raised up so that the Israelites can remain victorious in battle. Eventually, his arms get too tired but every time he lowers them, the battle turns and the Israelites start getting beaten. His two friends, Aaron and some other guy I can't remember right now, stand with him and each hold up an arm. Although Mark and I can't compare ourselves to Moses, you all are our arm-holding friends. When we feel like we are being defeated by despair and exhaustion, one of you steps in to hold us up and help us toward victory.
I've been trying to figure out how to summarize what life has been like lately. But seeing the odometer roll over to 1500 miles since we've owned it seemed to fit the bill.
This is the clinic infusion week. Abby is tired and a bit emotional. She really just wants to feel better and play with her sisters. We've had a couple good talks with her to see what we can do to help her out but you know what it's like to feel sick and depressed... unfortunately that's kind of where she is right now. For a girl that doesn't express her emotions very readily, that is probably an ok thing. She needs to wrestle with the reality of this life just like the rest of us, unfortunately a big part of that wrestle will be centered around being a 13 year old with cancer.
So, we're plugging along. Trying to help her the best we can. Overall the week has gone ok so far. We get up at 7am and drive for an hour and a half to the clinc, get her hooked up. Fluids, chemo 1, flush, chemo 2, anti-nausea meds, food, ipod games, videos, coloring, a bit of online math, and then drive home by late afternoon.
We have 2 more trips down this week and then hopefully we can keep her from getting a fever somehow -not very likely but a guy can hope right? If no fever, she stays home for most of next week. If a fever... we drive her to the hospital and stay there again until her counts get to the prescribed level.
In the meantime we are waiting for the insurance to approve the bone marrow swab test for the girls and then we'll get to see if any of us are a match (25% chance for Lily and Anna, 5% chance for Tiffany or I). The rest of the extended family has the same chance of being a match as anyone who is reading this.
Once we know if they can find a match, and once we have the 2nd MRD test in mid-Jan, then we'll have a bit more of a timeline as to what our spring may look like.
One day at a time. Thanks for all of your support. We appreciated it more than we could ever express on a blog post for sure!
We got a pleasant visit from the oncology doctors this morning asking Abby if she'd like to go home today instead of tomorrow. She said, "Huh?" We were planning on going home tomorrow because it can take a bit of time to clear all the methotrexate out of your system. They had drawn a level this morning, however, and she was already low enough to go home. We were thrilled! So right now Abby is playing monopoly express with Anna, thanks to the Alvarados who lent it to us, in her room. Lily and I are trying not to fully succumb to whatever cold virus is trying to infect us. Thanks to Aunt Linda, we are doing the OnGuard oil thing, taking "KickAss Immune" from Whole Foods, drinking lots of water and drinking copious amounts of Nonnie's lemon-honey tea. Hopefully one of those things helps keep this cold away. I plan to go to bed at 8:00 tonight, though I haven't told Mark that yet...
Thanks for all the prayers for Abby this hospital round. She did well. The nausea seems to be the biggest challenge right now. Next week she gets 4-5 hour daily infusions in the clinic with chemo she hasn't yet had. There are two different ones and they both cause a lot of nausea. We are also starting a more full-time homeschool schedule next week with Anna and Lily. We'll see how this all goes!
As the new year begins, I am feeling a lot of things. The obvious things like confusion and sadness are there. I am also trying to release a lot of the things I can't make sense of, like most of what we are going through right now. There are so many questions, so many unknowns and possible scenarios that I can easily get dragged down to anger, despair, hopelessness. But I get up each morning and I do the next thing and amazingly, God meets me there with a thought, a bible verse that is profound, a word from someone who cares, or some small but big gift like snow crystals on our kitchen window that remind me that the God who created crystalization is with us through this and his love is steady, his plan is good, even when I can't see how.
Abby has been the hospital for the last couple days. She checked in Tuesday, had a spinal tap with chemo (went under for that one). Then she started her 36 hour high-does methotrexate infusion. She should be done with that in a few hours. Then she'll get a single does of the PEG (the one that they gave her shots instead of last time because of a possible reaction). They've looked into that minor reaction from when she was 5 and a going to try it today instead of 6 more Erwinia shots. I'm happy with that. Those shots were rough!
Next week Abby will get 5 days of other chemo agents. 4 to 5 hour infusions each day. These will probably make her very nauseous and will drop her counts back to super low again by mid January (1 week later).
This is quite the opposite of what we were planning on doing during this Christmas and Bew Years break. We actually have a rental in Hawaii that we were suppose to be enjoying. I removed all the phone reminders but I still flipped over to check the weather in Estes Park yesterday (10 degrees) and saw that it was 70 degrees in Hawaii. Such a contrast. Snow here, sun there. Hospital infusions here, beaches there. It's hard to not grow bitter in my sadness about the change of our circumstances with these contrasted of what could've been. Hopefully we'll be able to redo some of these things, that we have put aside/missed for now, at sometime in the future.
Abby is in good spirits. Hospitals make everyone tired but other than that we are doing ok. Have a happy New Years!
We finally got the call with the MRD results on Christmas Eve from Dr. Smith. Not the Christmas present we were hoping for though.
After lots of talking Tiffany said, "Well, who's gonna write that blog post?" Neither of of really wanted but it has to be done.
Basically the MRD ( results weren't as promising as he had hoped (translation: chemo alone isn't going to work. Secondary translation: Abby will need a bone-marrow transplant or more).
They wanted the MRD (minimal residual disease) to be less than 1 in 10,000. Abby's test showed 2.8% or 280 cancer cells out of 10,000.
We don't have much information on the future but here is what we kind of know. Abby will continue the Block 2 protocol and probably the Block 3 cycle of chemo to get continue to kill her cancer. Then somewhere this winter or spring she'll be transferred to the bone marrow transplant team. Once they have a matched donor they will do a set of intense chemo and x-ray treatments. The bone marrow will then be infused into her like a blood transfusion, it will make it's way to her bone marrow and graft in and then start to produce new blood for Abby.
One pro is that a bone marrow transplant is a significantly shorter process then 2.5 years of chemo but it will be intense. 6 or more weeks in the hospital is all we know at this point. But if all goes well, she'll be done by the fall, maybe earlier. Children's Hospital in Colorado is one of the top bone marrow transplant centers so I know we are in good hands. They might decide something different when the leukemia team meets on Wednesday but it seems like the bone marrow transplant is the most likely.
We are just trying to take it 1 day at a time right now. I don't have enough brain and emotional energy to look much further ahead than that. We had a good Christmas morning and have 2 more days here at home before we have to check back in to the hospital for a 5 day stay. The week after that are clinic infusions for 4-5 hours each day and then we'll have another little break (though she may spike a fever in there and have to go back to the hospital again). Either way, we are going to enjoy our next couple of days at home!
Hopefully you had a good Christmas and are looking forward to the New Year. Take care and we'll post more as we know more.
So the initial bone marrow test was negative, 0% leukemia cells out of 100. The more in-depth look (MRD-they look at 10,000 cells) is still in the works in Seattle. We made another trip to Denver today to the clinic for the first round of chemo on block 2. It's another 29 day block with a bone marrow test and another MRD at the end. They compare the two MRDs and decide if chemo is working or if we need to go the bone marrow route. Block 2, as Mark mentioned yesterday, has another 5 day hospital stay in it, followed by a week of 4-5 hour days in the clinic. Then we get a week off in terms of chemo. Her ANC will be really low by then so we may end up in the hospital again if she gets a fever. We also took a peek at the chemo roadmap for the next 6 months. Block 3 is even more intense than block 2 in terms of hospital stays and types of chemo they give. Obviously, we want to follow the doctors' recommendations since she is a special case, but it's a lot of chemo. It was a long road last time too but it seems like we have more on our plates now with older kids, a whole life to pack up in Japan, and a this sudden u-turn in our life journey. I was talking to a wise friend today who reminded me that gratitude keeps us afloat. It keeps us from sinking into hopelessness. There is always something to by grateful for. Yes there is a lot of pain in our journey right now, a lot of loss to grieve and a lot of hard things ahead. There is also a lot to be grateful for. It's Christmas and we have a God who loves us beyond what we can wrap our minds around. He shows us how much he loves us by giving us daily gifts. Leaves with frost on them on a morning walk that reminded me the beauty is all around. People caring for us at the clinic, at home, at church so that we don't have to shoulder this heavy load alone. Cards, emails, texts, gift cards, words of comfort... we are so grateful for the knowledge that we are not alone during this trial.
It's been so nice to be have everyone in the same house again. Abby's been feeling ok. Mornings are a bit tough with nausea but she's still eating pretty good overall, she just eats more at night now.
Block (or cycle) 2 starts on Monday with chemo and the grumpy pills (high-dose steroids) through Christmas. Then she'll be admitted again for a week or so starting on the Tuesday after Christmas for a higher dose prolonged infusion.
We don't have the full test results of the bone marrow test back yet but the initial results look promising. The Dr. made the analogy of a garden where plants and weeds grow for her bone marrow. Basically they just used Round Up on her garden and they killed it all, good and bad. The results right now show that not much of anything is still alive in that bone marrow garden and therefore the chemo is working well.
It's nice to see Abby feeling good enough to go outside a couple times in the last days and I'm not looking forward to this next pulse. Hopefully each pulse will be a little less intense as we move on through this treatment. Monday's results will define that path more clearly. And as we all are, I'm praying for the easier of the 2 paths as well.
Seems weird that it has already been 29 days of treatment. Japan feels so distant and yet so strangely close. We still haven't settled back into Colorado, still feel split between to places.
This day has been looming over us since we left. It was basically the "third option" as Dr. Smith called it. Come back for the first treatment, see how she responds and then we can decide from there. It was a great option, without it I would've had to decide if we were going to start treatment in Japan (knowing that she might not be healthy enough to leave on a plane for a while), or if we were going to just fly home and leave everything be had just built in Japan -that's a hard decision to make in 3 days.
So, we took the 3rd option which gave us time to think it all over, to let the reality of what this new road would really look like sink in. Time to be honest with what we had already lost. Yet, we have already lost our life in Japan, the way it was. The bike rides to school as a family, the smiley visits and hugs from Abby and Anna during their passing periods. We've lost the dream of being together each day as a family. We'll have to grieve that. It'll be a process but we'll walk it out together, as best as we can. So, the reality is, that things have already changed.
I was hoping that the Day 29 test would somehow make it all magically clear, we would know if we should stay or should we go back to Japan? However as we walked out the last couple weeks it has already become clear. We will be staying in Colorado for the rest of the treatment.
Here are a few paragraphs that Tiffany I wrote to convey our sadness to some friends and colleges at ASIJ:
"The Schreiber family will not be able to return to ASIJ while Abby is undergoing this treatment.
-that sentence has brought many tears with it, and is hard to write. Oh how we wish it was different in so many ways. But it's not, and so we'll walk this new path out in faith and hope and see where it leads us.
We did want to come back, we've been holding out on having to make this decision, hoping to wait until the 30-day test are in. Unfortunately, the test result timeline put the school in a hard place for potential re-staffing. I had a candid and honest conversation last week that it was very unlikely that our family would be able to walk out this treatment in Japan, especially in the short-term. Even if the test results are good, and she only has to do the chemo route, it would still be several months before we would even have the possibility to return and at that point who knows what our needs may be.
So when we look at it that way, we see that unfortunately things have already changed, we can't go back to the way it was in Japan, and that is what we really are longing for.
Though it's only been a semester, ASIJ feels like a big part of our family. We know you and all of the other staff would've supported us in more ways than we could even imagine. We know that the ASIJ community would've rally around our family, around Abby. However, when I really think about what Abby needs, what her little 13-year-old personality can take, I just can't see her walking this out in a Japanese hospital. I know the medical care would be great (and I'm sure she would learn Japanese extra quickly there). However, I don't see that road as a road that would really build her up, something that would encourage her faith. Even with all of the support that would be rallied around her, I see it being a very lonely place for her.
We moved to Japan to do life together as a family, and we did. We loved getting hugs from the girls whenever we could see them, the beginning of the day, at lunch or anywhere in-between. Through the good and the hard, we were grounded as a family. And now, with this radical change of events, we are striving to be in this together as well. We just wish we our extended ASIJ family could be here with us along the way.
So, it's day 29 and we don't have to wait for the results. Either way we are staying here and re-starting our new life. More changes to come but we'll walk this out just like we always have -in faith and as a family.
Just a quick update that we are still in the holding pattern here at the Hospital. Abby is a trooper for sure. She has a great attitude about having to be in the hospital for so long. We are hoping that she'll be able to go home soon but you just never know. Today the ANC was at 60 so maybe it will keep trending up. I would think she'd be out of here by the weekend, hopefully sooner.
Well, we are still here. Tiffany, Vicky (tiffany's mom), and I have all been taking turns staying overnight and keeping Abby company. One of us drives down in the late morning, hangs out for a bit, then the other one drives home before rush hour traffic.
I know this drill all too well and I also know about the record keeping for medical. I just dug up one of my old spreadsheets to use as a template for expenses. This morning I entered our mileage since the start of this and we have already hit 3300 miles of commuting since her first appointment.
Overall Abby is doing good. She's a real trooper and has a positive outlook on this whole hospital stay. Still it isn't fun all of the time and we've had some tears together over various realities. The reality of her hair coming out is probably the biggest one right now. It brings the reality home when your hair starts falling out. I'm sure the bald head thing will be a challenge for her more this time than last time. Did you know that they make a bald Barbie with wigs and such? Yep, Abby has one now. I actually think she is excited to play Barbies with her sisters (for the first time in her life).
Tiffany's mom is going to come up and cut it a bit shorter today so that she won't have as much to loose as it come all out.
Still in the hospital. At least she is starting to decorate the room though.
The 70 mile oneway trip is getting a bit tiresome though. Usually one of us goes down sometime in the late morning, hangs out, stays for any procedures (i.e. shots), and then the other person drives back home before rush hour. We've been doing this for a week now, that's over 1000 miles this week. It doesn't seem as long as it did the first couple of times but still I'd rather have Abby back at home.
Unfortunately her ANC is still low, actually lower now (down to 30 today). We were hopeful that the ANC boost from the steroids last week would peak at 100 and we could leave before it dropped again but it didn't happen. So, now we are planning for another week down in Denver.
Maybe she'll have a great immunity building night and wake up with an ANC of 100... but I'm not holding my breath right now. Only time will tell.
So, more shots tomorrow and then again on Monday. Wednesday is her bone marrow test and hopefully the results of that will be awesome. We are praying and hoping that the chemo is working extra good (should be given her counts) and that the test results will show the cancer is gone (or at least under 1 in 10,000 cells).
Pray that she can come back home soon. Obviously it would be so much nicer to do this all at home instead of as a commuting family.
Abby is still in the hospital. Basically waiting for her immunity to get strong enough so that they will let her leave. It has to be above 100 and right now it's only 50. It was 80 yesterday so hopefully it'll move up sooner than later.
For now we are trying to find ways to keep her for getting too bored or watching movies all day. She has a felting kit so that's been fun. She's making a felt sushi. They also brought in a star to paint today.
We'll take some walks and just keep waiting it out.
Abby is still in the hospital. Her ANC is 30 and needs to be 100 before we can leave. Also, she needs to be fever free and no blood infection for a couple of days. Those two things are happening so far but the ANC needs to come up. We could be here awhile. However, her spirits are good. She has some familiar faces now and has been able to replace our first week here's experiences with some positive ones. She had a blood transfusion which helped her energy level since her hemoglobin was so low. Her nausea comes and goes. She's still pretty pale but her really bad headaches are now just now and then and she's not dizzy anymore. They continue with chemotherapy while we are here, the priority being staying on the roadmap so we can hopefully see good results on the 16th when they test her bone marrow again. She gets to go shopping today with the Make-a-Wish people downstairs. She did this when she was 4, it's a great event! She gets to get Christmas presents for 6 people. They help her pick them out and wrap them for her, and I think there are christmas treats at the end. So, it sucks to be in the hospital but she has been blessed by lots of fun things to do and great people. Yesterday she got a visit from a nurse who was her primary nurse last time around. It was so great to see her. We hugged and cried. She has had a picture of herself and Abby on her desk for years. She brought it and gave it to us. She is here in the clinic so we will see her again. Abby doesn't really remember her but she was a huge gift to Mark and I! She's a wonderful lady. Abby also received a "bag of fun" from an organization that puts backpacks together with fun things to do for hospital stays and chemo treatment stays. There are some amazing things in the backpack, including a Kindle Fire. Wow! We are still blown away by it. Thanks for all the texts, emails, gifts, meals, and prayers. We still feel shell-shocked but know God is walking with us through this and when we look up from the pain, we see his hand all around us from beautiful mountains out our window to all of you letting us know we are not alone.
We were just about to leave the clinic, she had done great with her shots and all. The unaccessed her port and just as we were getting her shoes on, we felt her head... Hot.
So close. They just hooked her back up, drew some blood for cultures and are giving her some heavy duty antibiotics. She'll have to be admitted tonight, and possibly for a while. Her ANC (infection fighting blood count) is 10. Mine is about 2000 so she pretty bottomed out.
So close but at least we were already here. She'll also get a blood transfusion to bring her hemoglobin back up as it a bit low today too.
Things have been pretty quiet since Thanksgiving and it was nice to not have to update the blog since things were going good. I guess no news is still good news. We did get our roadmap (treatment plan for the month last week so I thought I'd share what I know about this plan with you all.
Basically, right now our Monday, Wednesdays, and Fridays are a bit full since we have to take Abby to Denver on each of those days. These extra trips are primarily for the shots that she has to get. I think today is #6 in the 6-shot series of Erwinia. She gets 2 simultaneous shots in her legs each time so she hasn't really been enjoying these days (to say the least!). We are hoping and praying that she will find that place of strength that she has often shown in the past when she gets flu shots or other needle sticks. Unfortunately right now she hasn't found that strength very often and the shots are producing a lot of anxiety for her prior to the appointments.
Today she will also get another chemo drug today in her port and then start the second round of Erwinia shots on Friday. That round will finish out right near her Day-29 bone marrow test.
Here's the basic roadmap as we know so far:
Nov 19th- Officially started Block 1 (28 days of an intensive 6-drug rotating chemotherapy)
Dec 16th- Will be the Day 29 test of bone marrow to find the MRD (Minimal Residual Disease)
Dec 17-23rd -Treatment break and MRD test results back.
Dec 24th or Dec 28th- Start Block 2 (28-day intensive chemotherapy)
End of Jan- MRD bone marrow test and 1 week break for counts to recover.
After that... we don't know yet.
Based on results of both Day 29 bone marrow tests (but the first test is the most important) she will either:
1) Continue chemo (still don't have a good roadmap of what this would look like)
OR
2) Start the process for a bone marrow transplant.
So, we are very hopeful (and praying hard) that the Day 29 test shows that the cancer cells are gone. If that is the case, we have a lot more options on what our future looks like in terms of here treatment and where we might be able to get that treatment done.
Off to our appointment. I'll try to most more often this week too.
In August I started capturing our life, day by day, in 1 second clips. My thought was that it would be great to post it all over on the web on Thanksgiving Day. Show off our new life in Japan, a way to remember all that we are thankful for in this new life.
Everyday, I would capture a quick moment. It was a fun to look over the ever-forming video from time to time, especially on those days when I was worn out and missing Colorado. It was a video highlight reel of our new life. On November 14th at Narita Airport I posted the video with this message, "Well, I've been making this 1 second everyday for a while. I think this is probably a good chapter break for now. A new chapter begins when we land."
I thought that would be my last 1 second a day video clip. Why would I want clips of the Children's Hospital, of chemo drips, hard times or bald heads? At that moment, the Japan clips seemed less-than-realistic, just all the high points of our new Japan life. I had omitted all the clips of Anna crying about math homework, or people missing our Colorado home. I didn't have clips of us taking the kids to the Japan Drs... in the rain... on bikes... with bronchitis. -so why start now?
I told my good friend this same story, that I was done with "1 second everyday", the chapter break would be the end. But he's a true friend and he wouldn't let me quit. He challenged me to not stop the clips, not to stop looking for the good in the midst of challenging times. He said that the Japan clips weren't fake, they were real, they were about finding the blessing in a hard transition. Sure, it's a bit manicured, but we all do that to some extent.
Manicured... Or, it's called looking on the bright side ,or counting our blessings -And that's what I'm going to continue to do. I had to go back and fill in the few days that I didn't want to capture but I think that's ok. So, here's the video of the beginning of our new chapter, a chapter that will most likely be a challenging journey, but one that I will capture and find things to be thankful in nonetheless.
All of are home today, Abby is doing good as are all of the other other kids. Thanks for walking with us in this journey and Happy Thanks Giving to you all!
Well we went down to Denver today for a treatment, spinal injection of chemo, shots and another chemo via her IV.
They checked her counts and her white counts are super low. Good and bad at the same time. She's severely neutropenic (means her body is very low on her infection fighting cells, neutrophils.
If she gets s fever we have to rush her to the hospital and admit her so we are praying she doesn't get a fever! Please pray for that as well. Thanks! They want her to eat more as she lost 6 lbs in the hospital last week, that's a lot for her. So, I guess we'll see if she wants to eat lots of cheese or maybe a Whopper. Or a Carl's Jr. burger. Or a cheese cake, the whole thing... that would get the weight back on her huh!?
Other than that she is good. It is so nice to see her here at home. Ahhh hopefully we have a little time to relax now. Enjoy your turkey day and hopefully we will too!
We are really hoping and praying that Abby will get out tomorrow. Try as we might, they still didn't let her go home today.
To be honest, it was a rough day. She really wanted to go home. She had more shots and she was on a big combinations of anti-nausea as well as anti-anxiety. The effect of them all was not the best, she was super emotional and repeated the same thought over and over and over, all day long. She is tenacious and just wanted to go home.
To be with her was hard. As a parent you just want to unplug her, throw her in the car and leave. Yet, at the same time, we know they are all trying to get her better and are looking out for her so we just have to trust that the Dr.s and nurses are doing the best that they can.
So, she is still there. Vicky is staying the night with her and it sounds like she has calmed down and gone to sleep. They will take her vitals again later tonight and if all is still good, they will release her tomorrow morning. It will be super nice to have her back in our Colorado house again.
Well, Abby isn't quite ready to go home. Her phosphate levels are too high without the help of IV fluids to keep them down. If her nausea gets better, she may be able to drink enough liquids to keep them flushing out of her body. Her uric acid levels are too high as well. She is too nauseous to eat anything and hasn't kept anything down yet today. So, all of those things together mean she needs to stay in the hospital a bit longer. We will see how the week unfolds. She has more chemotherapy tomorrow and Wednesday and Friday (all of which include those nasty shots in her legs). Hopefully we can find a good combo and/or plan for the anti-nausea medicines so that she can get more on top of it. Her port sight is getting less tender so that's good. Her spirits are low. She is trying to work through so many things right now. We had a wonderful visit from her previous oncologist, Dr. Smith, and his nurse Sara, that were as good for Mark and I as they were for Abby. As Sara sat and talked to Abby she emerged from her shell and for that we are very grateful. Sara is a very special lady. She saw Abby through the whole ordeal last time. She and I were pregnant together with our third babies. She has the rare gift of being able to gently assess what's going on, take charge of the situation, and stay on a heart level with you the whole time. She is very perceptive and has a ton of experience with cancer kids and a ton of experience with Abby. Dr. Smith (deemed "Dr. Sniff" by Abby back when she was 3) is wonderful too, we are so glad he is on the team to fight this with us. So, right now Abby is sleeping, with the help of some medicine. Mark and I went out to dinner last night while my wonderful mom stayed with Abby. So many lovely people on this road. We couldn't do this without each of you.
Just a quick post to let everyone know Abby may be able to go home tomorrow but not today. Her phosphate levels are too high. As cancer cells die they give off phosphate so it's a good thing on that sense. She is also not eating much and not taking her medicine well today. Prayers she can start eating and drinking and taking her medicine would be appreciated. She just wants to be done with this. It's a lot to take in and deal with.
Today was a tough day for Abby. I don't want to sugarcoat these update but I don't want to depress people either. I guess all I can do is update: the good, the bad, and the ugly.
The Good-
She got to go for a walk to the gift shop without her IV pole with the family when she was feeling ok.
She ate dinner and played Uno with Tiffany tonight.
We had lots of support from friends and family and are feeling very encouraged.
She is in good hands of the doctors and nurses.
The Bad-
She reacted to one of the chemo drugs last time (PEG) and therefore can't get that shot again... unfortunately (is there a bigger word than just unfortunately?) she has to get 6 shots for every 1 shot of the PEG that she would have gotten.
This therapy had 2 PEG shots for each 30 day block... that means 12 shots in her legs
She sobbed in fear for a large block of time today and finally we got some anti anxiety medication for her so that she could get those shots.
There are a lot of fears of pain that are ruling her emotions, I think a lot of them are based on the subconscious fears from her last treatments... please pray against those fears.
The Ugly-
Sorry, I can't share much of that. It would just get us all down. In a time like this you can't really look more than 1 day in the future, it's too hard, too many "what ifs".
So, let's just leave it at this: watching your kid go through this, and not be able to do much to be able to help, is one of the hardest things I've ever done... twice.
Positive note to end this post: She might be able to come home tomorrow! Oh please let her come home. I honestly don't know how people get through this without faith... I'm having a hard enough time with it!
Thanks for all of the practical help, prayers, cards, thoughts, and email notes. We appreciate them all more than we could ever convey in a blog post.
I really don't want to post right now. I'm sad and mad but mostly sad. I can't believe we are doing this again. I can't believe she is doing this again. Almost 8 years after we took everything out and said goodbye we say hello and put it all back in. I don't want to have to watch my little girl suffer again but that's the only option we have right now.
Overall Abby is doing ok. She's sore and nauseous and it's only going to get worse on those fronts. We went over the treatment roadmap last night with the doctors. She handed us sheet after sheet of chemo drugs printed out with names and side effects listed for each. She told us what the 1st block (cycle) of treatment would be for this month and it's pretty intense. She is on a relapse protocol that has had good results in the past. It has some new chemo drugs in it and a lot of the old ones that we know about all to well. The goal is to get her into remission by the end of this cycle, test, and then we can decide where to go from there.
The reality of how much we may be at the hospital, and how sick Abby might be, hit me like a truck last night. It's a hard place to be. I so long for a nicer set of drugs that can cure these cancers but we don't have those yet. Chemo feels a lot like using leeches, or maybe a gun, to get rid of an infection on your leg. It's a really hard thing as a dad to stand by and let someone "heal" your daughter in this way. I guess this is why people tore their clothes so much in the old testament writings.
So, I'm overwhelmed, Abby is sad, we are all tired. We will all hit the wall at some point. And, at that moment we have a choice, either get bitter and mad or rest in our faith in God's plan for our lives. Fortunately and unfortunately, we don't have the choice to insulate ourselves from the harder realities of this world any longer.
To live means you also die. To really smile you must also cry. Pray that we will all rest in a peace that is not our own.
Just a quick update. Abby is all done. Port went in well, spinal tap and chemo, went well. She's sleeping now. That will be good for her as she hasn't had much sleep in the last couple days.
I remember this life. You can't sleep so you start to think. And thinking turns into the need to write and so you start to type. They you figure that you shouldn't keep these thoughts to yourself so... you post. It's kind of being in a coffee shop. Nice windows, free coffee, comfy chairs that turn into beds, clean sterile floors, lots of fun bells ringing. Well, I guess the coffee and chairs are the same. I wonder if they would let spruce it up a bit more. Maybe let me bring a laser cutter in here? -I could cut our a really cool room sign for everyone!
Anyway, Abby is finally asleep. It has been a rough re-entry. I think she just has so many fears that get brought up from her past experiences, fears that she doesn't even know are in there. Today her main emotion was fear and anxiety over what will be the next painful procedure. Jet lag doesn't help either. I'm wide awake at 10pm and I don't have an IV in me. They moved her IV yesterday and put it in her other arm but still she says it hurts. Her back was also sore but that seems better now with tylenol. Basically she has been in some sort of pain for the last 5 or 6 weeks since her legs first started being bruised and swollen. Chronic pain just wears you down, I hope she can get some sort of relief soon.
They did the bone marrow test today and got the preliminary results in a format that they can read, in English this time too, which also helps with the readability. Acute Lymphoblastic Leukemia (ALL). We will know what type it is tomorrow but the Japanese tests already showed that it was pre-b, the same type she had last time. She will also go into surgery for 2 procedures: a spinal tap + chemo, and she will also get her med-o-port which allows them to access her veins without having to give her an IV.
It's weird to be here again, last time I wrote about her first treatment I was wrought with fear but this time I'm not. I just want her to get going so that she will start to understand that fear has no power over her. My prayer is, that her fears of the unknown will be replaced by a kind of peace that can't be taken away by these new circumstances in her life.
Have a good night, or day... depending where you happen to be in the world.
Abby is checked in at Children's Hospital. They haven't done much yet because the Japanese test results are a bit hard to read so we are going to repeat them tomorrow. Also in the mix is the fact that her blood counts are pretty good right now and they didn't see any blast cells in the blood today. So before we move full steam ahead with treatment, we are going to pause and make sure we are heading in the right direction. Several doctors have stopped by and taken a look at the bruising and Mark's well documented pictures from the beginning until now. Way to go Mark and the school nurses! Abby is doing well. With two new owls to keep her company and shrimp for lunch what else could a girl want? The first of the bone marrow test results will come tomorrow afternoon. The rest we will have to wait a bit longer for, Tuesday night or Wednesday morning. Thanks for the prayers and love sent our way, we are feeling it all and appreciate it more than we can say! We will keep you all posted.
This week, we pulled the eject lever, and rapidly came back to Colorado to start treatment for Abby's Leukemia.
Below are some excerpts of emails that I've sent this week to my friends and family from both sides of the globe. We leave in 30 minutes to the Children's Hospital in Denver and we will once again have a better view of what this journey will look like soon.
From Wednesday night after diagnosis to some great guys in my life: ****** "Well, it looks like this will be our 2nd time that we get to walk down the road of Leukemia treatment. But right now I'm in Japan so I need your wisdom and I have about 2 days before I need to make preparations.
Basically, our big fear came true today, when I took her downtown to St. Luke's (the International Hospital). They did another blood test that I requested and detected blast cells (they shouldn't be in your blood stream though). So to get the definitive answer, they asked to get a bone marrow sample. They got the sample and 90% of her marrow is blast cells (that means she has Leukemia again). They will know the specific type of Leukemia tomorrow. "
****
And to our Colorado Friends once we had made the decision to fly home for a bit:
******
Colorado friends,
I had lots of catchy subject lines for this email. Like, "Dusting Off the Old Abby Update Page" or "What are the Odds?" But, in the end I decided not to even do an executive summary and just put the news right in the subject line.
Yes, Abby was just diagnosed again with Leukemia.
8 years off treatment she has relapsed. This is very very rare, kids don't normally relapse like this... but when has our family ever been normal. I will find out what type of Leukemia it is in a couple of hours when the results come back. So yes, we are dusting off the old "Abby Update" blog from 8 years ago and I'll be recording some new entries. Or maybe I'll do a Facebook page but those are kind of the least of my concerns right now because I'm still in Japan. I definitely didn't see this coming.
So here is the nitty gritty. We are coming home for a bit. Abby is doing remarkably well. We caught this really early. She still has an ok immunity and we are praying for that to hold up for another week or 2. She has a bit of time before she has to get on treatment, probably a week. We've talked to a lot of people and prayed a bunch and both the people here in Japan and our doctors in Colorado agree that we should get treated in the USA, especially for the first month. So, we will be flying back to Colorado with 10 suitcases this weekend or early next week.
I'll post info on Facebook as I know and send out links to other ways you can keep in the loop in the future soon.
On to the heart stuff. This is hard. It's going to be a bumpy road again and we are all ready pretty worn out from all of this transitions that we have just gone through. I am optimistic that Abby will be cured again. And I also know what the treatment will look like. It will be long and tiring, there will be days again when I don't think I can do another day. And then I will do that day, and the next and the next. This time Abby is a teenager, she will also face this struggle much like Tiffany and I will. It will leave some marks on her, some more battle scars, some more physical scars too but we all need to continue to remember that our life is not our own and that we are not in control. That illusion of control has once again been stripped away for the Schreibers and I'm going to trust that we will experience God's freedom in new ways as we all walk this out together.
~The Schreibers
*****
More info will be posted here soon. From Tokyo to Colorado, we love you all!
Writing helps me think and process. While we were in the Japanese hospital, St. Luke's in Tokyo, I wrote this while waiting to get the bone marrow procedure and test. November 12th- Well, I guess we'll have done this twice now. Wow.
When you walk into a room with 4 doctors that is never good. That's what I just did. There are some things that transcend the language barrier huh?! Lots of doctors in a room after a longer-than-normal wait time is one of those things. I will remember this day for the rest of my life, just like the time that Dr. Samuelson told me the first time that Abby had Cancer. I remember that vividly too. I'll remember this in the same way. I will remember walking out to the little garden area, calling Tiffany and telling her that, “we need to talk.” But this time it is in Japan, on my Japanese phone, I took a crowded rush hour train here not a car. How will we do this cancer thing here? Oh, how your life can change with 1 train ride. Yet, at least this time I know the potential road ahead. Blood cell counts are abnormal, but you shouldn’t have 12.5 % Blast cells in your blood, you should have 0. 12.5- I will now have another number burned into my brain. Last time it was 70,000 total white count, this time it’s 12.5. -oh how numbers can have such significance.
But 50%. It could just be a scare. I used to have the mug that said, “reaching for 50%”, I wish I had that now. It would be good to carry around. That's all I got to write that day. The rest is a blur. Leukemia in Japan. The taxi ride home was worth the full cost. We sat in the quiet and I thought about how my life was once again going to change. I don't know what Abby thought about she is often pretty quiet. She is a strong kiddo but I don't want her to have to be so strong
