I have been thinking a lot about ruins lately. I read a blog post on finding God in the ruins of life. I read an article about Kay Warren commenting on her son's suicide and a sermon she had heard called "Glorious Ruins" by the pastor of Hillsong in Australia. I listened to the sermon.
As I sit here with Abby, who is sleeping now after a hard day of throwing up and being exhausted from a 36 hour chemo infusion, I keep thinking of la Jolla beach and the hours I walked with her as a new baby in the baby bjorn while Mark worked his network job and I learned what it means to be a mom. All those hopes and dreams for Abby's life were just beginning. And now here we sit. It feels like it's all in ruins.
God has a lot to say about ruins in the bible. He's into them. He is a God of hope and redemption. I plan to dig deeper into those stories and see what God might teach me about himself. I wanted to share a song with you written by the guy who wrote the book "Finding God in the Ruins". I haven't read it yet, it just came out. I plan to. He and his sister, who has cancer, sang it with their mom. It really touched my heart, met me in my pain. Maybe it will encourage you too.
Abby and I checked into Children's yesterday morning for her week of chemo. She had a lumbar puncture with chemo which she's had before. The chemo is called methotrexate. She is also getting it through her IV for 36 hours. It's the one that most likely caused the GI sores that gave her so much pain last month. This dose is a bit lower and her ANC was 1400 yesterday when we started so that's all in her favor. She is napping now since she was up last night with some nausea. We are still on isolation from the C-Diff but it's not too bad. She just can't leave her room but hopefully we aren't here past Saturday. She gets her last Erwinea shot Thursday morning so that is a celebration! She has come a long way in being able to stay calm with those. When I think of where we were at the beginning of all of this in terms of her anxiety, I am so thankful that she has come this far. Every day is something different, something new. No day has been like we thought it would be so we have just stopped having expectations (as best we can). I am sure there is freedom in that but I'm not quite there yet! I'm so thankful for Mark, his personality does much better with constant uncertainty. I am often amazed at his ability to stay laughing in the midst of this. It's so good for our family. Many nights, after dinner, he will spend time just being silly with Anna and Lily. He jokes with the doctors and nurses and is a light in this dark place. We are both scared, of course, but the lightness in Mark reminds me that I can let go and relax, be present. I'm not in control anyway so being hyper-vigilant does nothing but negative things.
Hopefully we will all be home together by Saturday and enjoying a visit from Mark's folks. Next week will be the bone marrow test that will tell us if we go forward with the BMT or look at other options to try to get Abby's cancer cell percentage to zero. We'd love prayers for that test. Hope you are all having a great week, enjoying the coming of spring!
Mark took the girls to dinner since they missed the annual Butterfly Kisses Dance. They are going for japanese, of course! Abby passed her counts today so she is ok for chemo tomorrow. It's a 4-5 day inpatient stay starting tomorrow. Hopefully it will seem like a breeze compared to February's long stay.
So Abby gets to come home tomorrow. We are so excited and know you are celebrating with us! She will be on an IV antibiotic once a day. They had to find one that was compatible with methotrexate, which she will be getting next week, and is effective in killing the enterococcus bacteria in her blood. There's only one, and it is only given through the IV. So a home care company will come with an IV pump and the antibiotic and show us how to do it. If you look way back on this blog, we did this a lot back in the day. Of course, we don't remember any of it it's been so long but we are hoping it comes back to us and that she doesn't unplug herself out of curiosity during the night like she did when she was 3.... kind of funny now but still gets my heart rate going. She is bringing home a couple of respiratory devises to keep working on her lungs. Her stomach issues are almost resolved. Most importantly, she can keep up with her hydration without IV fluids. Celestial Seasonings teas are our heroes right now, she is downing copious amounts of it since water tastes funny to her right now. She will come back to the hospital for a few days starting next Tuesday for her, hopefully, last doses of chemo. Then we get to rest for the weekend and start all the BMT workup tests the 14th.
On the BMT note, Anna and Lily were tested Friday for blood types and some viruses to help the doctor decide who might be a better match. So.....drum roll please..... they are all exactly the same blood type (O Negative) and they have all had all the same 20 or so viruses, EXCEPT one. Anna tested negative for the antibody and Lily tested positive. Here's where it gets interesting! Abby tested negative last month but positive this month. Hmmm.... it's a respiratory virus you get as a baby. So, there thought is two possibilities. A)She has the virus now since her immunity is so bad or B)she just has the antibodies from one of the blood transfusions. They tested her further today (saliva, urine) to see if she really has the virus now or she's just borrowed someone else's antibodies. Makes me a little weirded out to think of but it's the least of our concerns.
Things we are thankful for after 26 days of February spent with her in the hospital....
1. Children's Hospital factuality and staff
2. Sisters who are ready either way to donate, one if Abby has the virus, the other if she doesn't.
3. My folks heling out in person
4. All of you helping out from farther away. Meals, cleaning, encouraging, supporting, listening....
5. Bath time
6. Abby is STILL smiling and shining God's light in all of this.
7. BBQ Pork sandwiches at the hospital
8. Panera when we get sick of hospital food
What are you thankful for as we head into Spring? We'd love to hear. It's good for our souls!
Just a quick update to say that Abby is turned a good corner. Off most of the monitors, off of oxygen for now, and her fever is gone without tylenol. Rough few days but she seems to be on the mend again. She's coughing a lot but I'm sure it's helping to clear the fluid out of her lungs.
She's praying that we can get out of her soon. If she can get to 100 on the ANC she can hopefully come home and remain on oral antibiotics.
Abby is doing a little bit better today. Her fever has come down a few times but it keeps going back up to 104. We know what bacteria is causing the blood infection and they tested it in the lab with the anabiotic she's on and it does kill that bacteria so that's good news. She's been really nauseous and had a lot of other stomach issues that led them to do a test for C Diff which came back positive. C Diff is a bacteria that lives in most peoples' intestines and keeps in check with all the other bacteria in there. However, when a person is on anabiotics for a long time and they are the broad-spectrum type like she's on, and that person is immuno-compromised, the C Diff bacteria can overpopulated. Ironically, The treatment is another anabiotic. So, hopefully she will start feeling better soon.
As I write this, I am sitting outside of the hospital enjoying some sunshine. Two life flight helecopters have landed on the hospital roof as I've been out here. It's always sobering to see. Makes me thankful that we are in such a great facility was a great staff taking care of our Abby.
I'm sitting here with Abby and her 104 degree temperature. The bacterial infection is streptococci and most likely came from her gut. The second IV antibiotic will take care of it but it takes some time. So, she's feeling pretty bad right now but at least we know what is causing it and she's getting everything possible to make her comfortable.
Anna and Lily were brave today and got their blood drawn. They let us do it early so we could be with Abby during an X-ray. They had gelato after with Nana and played outside the hospital in the sun with their Barbies. They headed back home with Mark a bit ago and my mom and I are staying the night.
Abby is going on day 17 of this hospital stay. She's been on an antibiotic and anti fungal for the whole time. Last night she spiked a fever and they cultured the blood to see about infections. She had one so now she is on a second antibiotic and they are doing more blood cultures. She wasn't feeling good at all. The ICU. Doc came up to assess her and said she didn't need to go down there yet.
-(Morning now) He's coming again soon since her fever is 103.9. Hopefully they can bring it back down and keep her out of ICU.
Tiffany drove down in the middle of the night to be with Abby. I'm going down with the girls now. Hopefully they can get this infection under control quickly and hopefully her immunity come back soon to help fight it too.
The girls get their blood drawn today (we'll see if we can still do it) to see who's the better match as well. Hopefully Abby's fever comes down and she can get some rest. But she probably won't feel like coming off the floor to see her sisters today :(. More video calls in the future will have to suffice until we get to bring her home.
Hi everyone. Abby is dong really well, considering. Her ANC is still zero and not showing signs of coming up yet. However, she has been nauseous much less. She has been needing periodic blood and platelet transfusions and is still on the IV antibiotic and anti-fungal medicines.
Her spirits are up, as you can see from her photo. She is holding a batch (clutch? brood? pack?) of felted dragons she made. We took them for a walk on the floor to show them our favorite picture, Owls in Bowties. We think the one with the purple tie just arrived at the hospital and is feeling a little overwhelmed with his new life here. We can relate.
So, there's not much to report. It is wonderful to have her feeling so well, eating, gaining weight, doing school, walking around, and making lots of creative things! She still has a week of chemo to get in as soon as her ANC is 500 and then it has to come up again after that to 500 again before we can start the 2 week BMT workup. So, we may be looking at the first week in April for the actual BMT. Abby was making some cards yesterday from a kit that came from a sweet lady at my folks' old church in CA and she found a card with this quote on it, "She stood in the storm and when the wind did not blow her way, she adjusted her sails." (Elizabeth Edwards) We hung it in the room to remind us that life is about change and not being in control but we can choose to accept and adapt as best we can.
Anna and Lily will be coming down on Friday for their follow-up blood tests to see if one or the other of them would be a better donor for Abby. They are nervous but stepping up to the plate for Abby. Children's is great. They will have a Child Life Specialist meet us before the blood draw so that they have someone with them, besides us, to help it go smoothly. Lily is still hoping she gets to donate. Hopefully, the next time we blog Abby is home!
Hi all! Day 11 and she's still here. Unfortunately this will actually be one of the shorter stays.
Many of you have asked what they could send, what are things that Abby would enjoy doing while she is sitting in the hospital? One of our friends, who's child also had a lot of hospital time, suggested making an Amazon wish list for this purpose. So, here it is. If this is helpful, please take a look.
http://amzn.com/w/BZO2G3JFWKCZ
We have loved all the cards, stickers, and especially the words of encouragement! So please know you are loving on us big time even if you don't use this link.
Well, I am sitting here by the sunny window in Abby's room at the hospital listening to "Good Good Father" by Housefires. I have had my doubts these past months if I'm honest. No one would blame me. It's been a rough few months. But there have been a ton of things I've experienced during this time that have also strengthened my faith in God's character and his love. I don't have any answers but I have my relationship with God and for that I am very thankful. There is hope, God is still in control even though brokenness seems to be winning out in Abby's body right now.
But....I didn't start this post to talk about the big questions of life. I wanted to update you all on what's coming up pretty quickly. On Tuesday this week Mark, Abby, my folks, and myself sat in this room for 4 hours in front of a white board and Dr. Craddock hearing about all that goes into and comes out of a bone marrow transplant. It was fascinating and frightening all at the same time. It gave us all hope and filled us with fear. It was a long and full 4 hours. The procedure itself is a bit anti-climactic. It's just like a blood-transfusion. It takes about an hour. Getting the cells from Anna or Lily is a bigger deal than it is for Abby to receive them. We will know soon which sister gets to donate. Lily has been asking God to make it her. And then we wait for the new cells to engraft. Before the procedure Abby will get total body radiation and a big chemo drug to wipe out her bone marrow. She gets 3 treatments of the radiation. We aren't too excited about that. As you all probably know, radiation has a lot of lasting side effects. Margaret Feinberg likened cancer treatment decisions to being placed before a table with a knife, a gun, poison, and a bow and arrow and being told to pick. Not which one but which order. Of course, without the treatments, cancer is deadly on it's own. So, we walk the fence of a love/hate relationship with cancer treatments. Dr. Craddock was almost giddy that we have two matched sibling donors. There's about a less than 1 percent chance of that. God is good. When Anna and Lily were being formed inside of me, he made sure their chromosome 6 had all the same protein markers as Abby's. Amazing. That's a sobering thought for me, that he knew then what we would go through now and provided what we are all hoping will be the thing that saves Abby. Matched sibling donors mean that all the graft verses host issues that come up should be lessened. There are a lot of those. Stuff I don't even want to list. We'll just stay on the side of being optimistic. So the big things to come are the radiation and chemo before and all the side effects of those that will make her feel crumby going into the transplant, and the risk of infections (viral, fungal, bacterial) that will stay with her for a year after but be extremely high for the first 30 days post transplant. There is still the possibility that her body will reject the new marrow so you can pray for that as well. Feel free to leave comments if you have any questions or encouragement for us! The whole thing is scheduled to start March 7th with two weeks of work-up testing to see if there is any infection or potential for infection hiding out in Abby's body anywhere. Then the radiation is scheduled for March 22-25 and she will be admitted on Friday, March 25th. The procedure is scheduled for March 30th.
Some follow up with, "But how are you really doing?"
-this second question often causes a dilemma for me. How do I fully
explain this situation when we are still trying to wrestle through it
ourselves?
Sometime in my head I answer back, "Well, how much time do
you have?" Time is a factor to answer this question and we live in a
time-crunched feeling life. Facebook, Twitter, unending emails all take
up our energy.
At ASIJ, I would often see emails from people with items to give
away, or non-work life information. As a courtesy, they would put
"delete if not interested", in the subject line. I think this post is
probably similar. So, if you want an inside view of "how we are really doing" follow along. But
don’t feel compelled to -I am completely fine with leaving it at, “We are doing
ok, one day at a time.” if you don't have time right now.
So, as we said at school in Japan-
RE: Schreiber's - How they're really
doing -Delete if not interested.
Yes, the last 3 months have been really hard -a tiring
(emotionally, physically, spiritually) and demanding journey. And it's
right on the heels of another very tiring journey to and from Japan. A journey
that started more than a year ago and took a lot of energy. We gave up one
whole life: job, friends, church, town, school, driving, mountains -craft beer.
We packed, had lots of tearful good-byes, parties, “last of” experiences,
said our farewells and flew (by way of Hawaii -where Tiffany got painful
shingles) to start our new life in Japan. We started new jobs, got bikes,
train passes, met great new people, started a new church plant, and went to
IKEA way too many times. The girls got adjusted to not just a new school, but for 2 of them, the only school that they had ever been in (before
they were home schooled). Abby walked through a month of painful swollen
legs and a sore back (walking, in the rain, on the train, through crowds, to
multiple Japanese doctors and hospitals, with lot of needle sticks, and a final
bone-marrow test) before we finally packed up eleven suitcases and flew back to
our Colorado house that didn’t fully feel like home.
It was like we were running a marathon, almost got to the finish
line when someone told us to turn around and do it again. Sometimes, that’s how we really feel.
Oh, and then there is the relapse-cancer thing too.
We are now 3 months into that new marathon, I have 3 more
months of one-second-a-day videos and now.The title says, “The Schreibers in Japan” but what it shows instead is
90 seconds of hospitals, drives, and my daughter losing her hair.No job footage, no school, no biking, no new
adventurous footage of Japan subways, no IKEA, -such an abrupt change of direction.But, if you stay there too long, it can
really bring you down.
So we try not to stay in that place.Instead we pray.Honest prayers. Sometimes feeble, sometimes
mad, but we still choose to pray to a God, that I don’t understand but I still
trust (even though that can be really hard).
And with that said, I guess the next logical question is,” how is
Abby really doing?”Unfortunately I don’t really know that
question.She doesn’t share much about
this all. I can only guess what it would have been like for me as a 7th
grader to have gone through our last 6 months of change only to end up living
most of the last 3 months in the hospital.How would you feel?
No really, how would you feel? Put yourself in that place for a
minute, go back to your 7th grade year, give yourself cancer, all
this change… feel that for a minute. Now, will you pray for my daughter out of that heart?Please.She needs your prayers. We can't just strive to just save her physical body, we need to save her heart, her mind, her spirit -and her beautiful smile too. I know I didn’t have it in me as a 7th
grader to go through this type of suffering, you probably feel the same way, and I'd guess that she probably does
too. So, even if you’re, "not the praying type", would you try? Pray that Abby’s
faith would grow.Pray that her immunity
would rocket up so she could come home for a few days.Pray that she won’t just grunt through this,
but instead find freedom in the midst of it. That she will find some way to have a purpose during these hospital stays. Maybe even that she would find a way to embrace this journey, even during the toughest of times. -These are spiritual requests.
All I can think that is left to say is, "Thank you". Thank you for taking the time to try glimpse into
how we are all really doing (or at least how we feel sometimes). And yes, this is all heartfelt and true, but it
is also true that we are just taking it one day at a time -walking out each day
as it comes. Still taking one-second-a-day videos and trusting that we can find
the blessing, if even only for that 1 second, in each and every day.
Abby’s unhooked today.Doing well.Bored but in good spirits. Has 1 blurry eye from one of the treatments. Wants to go home though.There are only so many crafty things to do
and Netflix videos watch while you’re stuck in the hospital room. And, unfortunately this will be one of the shorter stays. Bone Marrow Transplant will mean she is inpatient for at least 6 weeks and then in Denver still until day 100 or more. One day at a time. Here's our last 90 days. Enjoy and thanks for journeying through this with us.
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.
