She got to stay at a freinds house for the last few nights so that was really nice. Great to be able to cook her buttered noodles, and have her rest in a comfortable place.
Here spinal tap with AraC is scheduled for 11amish. That will target any remaining cancer cells that may have passed through the blood/brain barrier. Last time she did this it made her super nauseous and vomity (is that a real word?). Anyway, pray that it doesn't cause that this time.
The radiation is over. She did really well. Day one was actually the worst and then the 2nd and 3rd days were all pretty good. Thanks for the prayers and please continue them for that big list of side-effects on the last post.
Heres a look at our week:
Friday= Admit + IT AraC. Clorox wipe all items that we bring into the room at the door, set up Abby's new room (hoping its on the sunny side of the hospital).
Saturday, Sunday, Monday = Chemo, Chemo, Chemo. This on is a big gun chemo drug that she's never had before. This, along with the radiation, will destroy her marrow and make room for Anna's marrow to effectively graft in. Lots of possible side-effect here too, hearing loss, reactions, mouth sores, intestine sores and other things that would cause pain. Please pray for those as well.
Tues= Wait and help Anna who will probably be really nervous.
Wednesday= Day 0. Transplant day. Anna will go under, get the bone marrow harvested, they will spin it down to just stem cells and get more marrow if needed (she'll be under for about 4 hours). Once all of the marrow is ready to go, they will bring it up to Abby, hook her up on an IV and drip it in. The stem cells will make their way to her marrow, graft in, and grow new blood for Abby.
Day 1-21 = We don't know what this will look like but we'll keep you up-to-date for sure. Probably there will be a lot of waiting, a lot of symptom care, pain care, and keeping her from getting (or treating any) infections.
Hard to believe we are actually doing this. One day at a time, right?!
Radiation started yesterday and she did ok. Tiffany and I cried a bit, talked a lot and prayed even more. The treatments are broken up into 6 sessions, she's in the middle of session 3 right now, half way done.
They line her up, the doctor checks it out, as does a physicist, crazy huh!? He walked in the room and said, "Hi, I'm a physicist, I'm going to check out the set up for a minute." I thought to myself, by all means! I always wondered what jobs physicists could get, now I know ;)
The treatment made her nauseous for the first one and by lunch she was throwing up. After the 2nd session she was throwing up more and her jaw was painful and swollen (a known short-term side-effect. Ice, ice chips to suck on and Tylenol helped a bit. She slept ok at the hotel last night.
We will be at a friends house tonight who are out of town, that should be much more comfortable. And Tiffany will have a place to cook for Abby if she can hold down some buttered noodles.
I'm back home, had to go to the Dr. to check and make sure I didn't have any pneumonia or other contagious stuff and make sure the sinus infection is getting better. They said I'm fine, just need to take it easier and get better... we'll see how that goes but today I'm going to rest while Vicky and Tiffany take on the radiation machine effects on Abby.
Just a quick post to update you on the plan, let you know what the schedule for the week is and what you can be thinking about and praying about for Abby & Anna as well as the rest of our family.
Overview:
We're a bit nervous to get started. Abby is doing good, not cold, good spirits and fun to have at home. It's going to be hard to give that up and start this all back up again. But, pretending that she is well doesn't really work either, so, off we go. In other news, our house looks like a small pharmacy. Tiffany and I are both on antibiotics for sinus infections, Lily just came down with a chest cold tonight and Anna is still recovering from her last cold. The focus is now shifting from keeping Abby well to keeping Anna well too! So, Lily has a room to herself tonight and Anna is in our room on the floor. Pray she stays well and that the rest of us get better soon!
Schedule and Specifics:
Tomorrow Abby starts Total Body Irradiation (TBI). She has marker all over her torso so they know where to aim and where to not aim as much. There are a lot of possible long-term side-effects with radiation. And then short term ones too like nausea. If I could selectively aim the X-Rays at just the cancer cells and miss everything else that would be great, I'm praying that every ray would land on a cancer cells and the rest of the rays wouldn't cause any damage.
April 5th, 6th, and 7th: 8am-9am and 2pm-3pm she'll be getting radiation
Pray that she will be comfortable while she's in there all by herself.
Pray for no longterm side effects from this treatment (the list is below)
Here are the specific side-effects that we are most concerned about:
Pituitary and Thyroid gland damage can occur (they create all of the major hormones like cortisol, growth hormones, sex hormones, and more) -please pray against that damage.
Liver and Lung damage (they block out some of the rays to these area because they are more sensitive). Pray against this damage and for a speedy recovery for other organs too.
Brain function -can cause you to have a loss of memory, attention, and other cognitive functions can be impacted.
Fertility -most girls become infertile after this procedure from damage to the eggs, but some bone marrow transplant survivors still have had children, pray she could have that option somehow in the future.
Pray that mouth/intestine sores will be minimal if any and nausea will be minimal too.
That mentally she will be peaceful during and after these procedures.
Sickville and beyond:
Pray that Anna stays well and Lily gets over this cold quickly.
That all of us can sleep well during this next week and beyond.
That Tiffany and I can recover soon.
That Abby has minimal nausea, pain, sores, and other side-effect from the radiation and Chemo which is on the 8th-11th.
That Anna stays well until the transplant (and through recovery too)
That we all will have as much peace as we can, that we can walk in a strength that isn't our own and that we will not doubt or have fear about the coming weeks and months of this journey.
J I love analogies and visual examples. I’ve been trying to find a good one for this phase of Abby’s journey but the perfect one has been eluding me. At first I likened it to putting your kid in a car, checking all of the safety devices, closing the door and hurling her toward a wall -in order to smash out all the cancer cells. But that just felt mean -why would a dad do that to his kid? But if feels like that, there sure is a lot of prep, safety checks, infection checks, and scans -so what else is it like?
A Launch. Yep, I think the better analogy is that of a rocket launch… or maybe a human cannonball.
You see, we’re in countdown mode here in Schreiber World (yes, that’s a real place). T-Minus 13 days to be exact. Yet, that too is a bit of a misnomer, Abby actually only has 1 more appointment on Monday, then starts 3 days of Total Body Irradiation (TBI) on Tuesday. After that starts, there’s no abort button to press, we’ll just be holding on and praying, “God speed”.
In the last 2 weeks we’ve ran Abby through the gauntlet of appointments. Eye exams, CAT scans, organ function, radiation simulations, final marrow test, meetings, consents, consents, and more consents. She took learning tests, talked to the Phyciatrist, drank some tracer liquid and went to the 'hot lab'. Yesterday she had another surgery, they put a new central line in called a Double Lumen Broviac that will be used during the bone marrow transplant. The preflight workup is almost complete.
Anna also got some hospital time. Had a finger prick, donated a unit of blood, (to give back to herself later) and we signed forms, forms, and more forms. She also had an exam and got to talk to some of those “childlife” folks who all wanted to make sure that she knew that she wasn’t being forced to do this, it’s her choice. She cried a bit from the blood draw, but got to order off the hospital menu! I think the French Toast made it at least 25 percent better, maybe.
The TBI appointment was the most disconcerting to me. We got to visit the big lead-shielded room and see the machine that will shoot X-Rays at every inch of my daughter, in 6 sessions, over 3 days. We got to hear about all of the other potential side-effects that this therapy can cause. Short term like nausea, to longterm, like other cancers, infertility, brain/memory issues and cataract -to name a few. Out of all of the appointment though, I really appreciated the frankness of this radiation doctor. I asked her to help me be more at ease about this procedure (after that list of side effects who wouldn't be agitated). I said, “For some reason I’m ok with chemo, but radiation makes me uneasy.” After lots of questions, and even more answers, she responded, “Yes, we all should limit our exposure to radiation. But, this is the best chance for Abby.” And then she said a phrase that I’ve been mulling over ever since. She said, “We wouldn’t do this unless it was her last option. Yes, there are risks and we should limit them for everyone else, but it’s a necessary risk for her.”
A necessary risk.
There is a scene in the movie “The Martian” that this makes me think of. If you haven’t seen it, Matt Damon plays Astronaut Mark Watneywho gets stranded on Mars and has to survive until the people back on Earth can figure out a rescue mission. He sciences his way out of a lot of problems and finally has a chance to get off Mars… but in order to do so, he has to take a ride on a stripped down rocket -with a tarp as a nose cone. He follows the rescue plan, strips all of the heavy parts off the rocket. He gets in his space suit, straps into the rocket and is ready for launch. He has no controls, they were removed to lighten the load, so the rescuing astronauts in orbit remotely fire the rocket propelling through the thin Martian atmosphere and hurtling him at extreme velocity into space. On the ride up, he blacks out. The ship shutters violently. Pieces fall off the rocket. He's going so fast. At last he regains consciousness and finds himself in space.
https://www.youtube.com/watch?v=z1KC60TqNjo
If that’s not a good enough analogy then I give up.
For 2 weeks we’ve prepped. We done all of the safety checks that we can. But this isn’t a safe thing that we are doing. It’s a bone marrow transplant. It’s a necessary risk. We wouldn't do this if there were other good options. At this point we’re just trying to get Abby off of Mars. If that takes some risk, then that’s what you do. If that means getting rid of the windows, the controls, and even the nose cone, that's what you do. If it takes strapping your daughter to this rocket and trusting a bunch of amazing doctors and some risky technology to save her, then yes, that's what we'll do.
“Spoiler Alert” -In the end, Matt Damon’s character gets home safe and sound. Back on Earth we see him teaching new astronaut trainees lesson from his time on Mars. He says, “...you just begin. You do the math. You solve one problem, then you solve the next one, and the next. And if you solve enough problems, you get to come home.”
https://www.youtube.com/watch?v=mDYCLFE86Po
We are all praying, I know you all are too, that Abby’s journey will bring her safely back to our house as soon as possible. I’m sure there will be problems, but we are praying that each will get solved, one at a time, and when they solve them all, she too will come back to this little pocket of Schreiber World that we call home.
Stay tuned in the coming weeks.
-I’m sure lots of launch updates will be hitting this page soon.
Thank you all for all of your prayers and encouragement.
So I'm sitting in an exam room waiting for Abby to come back from her lung tests. She gets to sit in a glass box and breathe a lot into devices. Later today we have A meeting with the dietitian to go over what she can and can't eat during transplant. Then we have a palliative care meeting. And then she meets her child life specialist who helps her process two different procedures before and after they happen. She's doing really well and feeling pretty good considering our week started pretty roughly with lots of nausea after Monday's chemo. We had to go down to the ER at Children's on Tuesday afternoon because she was vomiting blood. They did lots of checking and it was nothing serious, probably just some tears in her esophogus from all the vomiting. She's been doing fine since. She and Mark got stuck in Denver Wednesday because of a surprise blizzard that hit early Wednesday morning. They drove down in it and it took about three hours to get to the hospital for Abby's appointments. When they were all done with the appointments parts of I-25 had been shut down and there were no hotel rooms left so thankfully, Mark was able to stay with a friend's parents who live close by. They took great care of Mark and Abby and we were so thankful! Yesterday we did a lot of CT scans and nuclear medicine blood tests. We had a long neuropsychology appointment as well. This week is about checking all of her major organ functioning and everything looks great so far.
Anna and I came down yesterday as well so that she could have some blood tested and some blood drawn to save and give back to her after the procedure. She also met with a child life specialist to talk about what to expect. She had a history and physical exam also. She was a trooper. She was all geared up for the blood draw and was holding it together pretty well until they came in and said they were going to do a quick finger poke before the needle stick. At that point the tears started flowing and all the nurses were surprised because a finger poke doesn't seem like a big deal. However, Abby has mentioned before how difficult finger pricks can be because they have to squeeze and squeeze to get enough blood out for test. At that point the nurses started talking about how it was a new device and didn't hurt at all and started pricking each other's fingers so that Anna would calm down. She got through it eventually and was able to order some French toast and enjoy that before she went to her next meeting. The other two appointments were just for information and an exam. Although we tried to reassure her there were no more pokes, Anna was skeptical- especially when they started trying to get to know her and ask her about the stuffed animals she had brought. I think she's starting to realize that when they try to get to know you they may eventually poke you with something. Overall a character building day for her right? That's what we tried to remind ourselves when we were collapsed on the couch from emotional and physical exhaustion later that night.
We have the weekend off and then we do another week of appointments. Thursday Abby will have surgery to get another port put in. Enjoy your Easter weekend. We hope to just enjoy some family downtime, cook a ham, do some Easter egg hunting, and hopefully connect with with the holiday means.
Anna! We've had a full week. I'm sitting here with Abby in radiology right now about to go for another scan but I wanted to let you all know. She is with Mark right now going through her donor appointments.
Abby and I headed down to Denver at 7:30 this morning after our usual stop at Starbucks for a coffee for me and a cheese danish to tuck away for later for her (she can't eat until after her spinal taps and bone marrow biopsies). She did average for nausea on the drive down. It's been a great past week of no nausea and no anti-nausea medicine. She hasn't been sleeping very well but having her feel better during the day than she has to date is a huge blessing. We got there a little early so they loved us...until I told them I had let her have almond milk to take her morning meds. We had to move her procedure an hour and a half down the road. I felt so bad. She had to wait until after her (now)1:00 procedure to eat. She did pretty well. They had her going on fluids through an IV all day to help. During our wait, she had about 30 blood tests done. They didn't need to take all her blood for that but it looked pretty close. The counter was lined up with test tubes. These BMT folks are very thorough. In one of those tubes was the test to see if Abby really does have lasting antibodies for the CMV virus so that we will know if Anna or Lily will be the donor. We should know Wednesday morning, maybe afternoon. Whoever it is goes down Thursday for their orientation and a one more blood draw. They will also take some of the donor's blood and save it to give back to them after the procedure. The transplant is scheduled still for the 13th of April. The rest of the morning was spent going over the schedule for the next three weeks with the bone marrow transplant coordinator and meeting with Dr. Craddock (our bone marrow transplant doctor) for a quick exam and to ask questions we have. Abby's procedure went well. She was able to get about an hour of sleep which was good because she hasn't slept well that past few nights. Our recovery nurse was very sweet and took very good care of Abby. She got two warm blankets and extra time to sleep. So....we are home now. Abby is resting in her bed. Her back is sore but her nausea is under control. We can anticipate high fevers from the chemo she got but were asked to give her tylenol round the clock to help keep them at bay. Yes, round the clock means we have to get up every four hours for the next two nights to wake her up to take a tylenol but it will hopefully keep her out of the ER with those high fevers. We have a few other things to take care of before we back Wednesday. I couldn't help taking a picture of the supplies we brought home. I'll leave you guessing what it's all for. The espresso maker in the background is definitely going to get used in the coming days!
Well, I guess it makes sense. You run this hard for this long and someone is bound to get sick. Well, that someone happens to be everyone... except Abby right now.
Pray that Abby stays well, especially this close to her transplant. We've had to basically keep Abby in her room now and we all wear masks and wash our hands a lot. I emailed the BMT coordinator to see how germaphobic we really need to be and she said, yes, we need to be germaphobic and diligent with hand washing to hopefully keep Abby well. I guess colds can become infections and that would definitely push the transplant back further. So, please pray for protection for her and for quick healing on the rest of the family.
We did have some family time this weekend and a bit yesterday before the colds really took hold. So, hopefully next weekend we'll be able to hang out in the same room again.
Abby got to come home Saturday afternoon. Since then we've been enjoying some time with Mark's parents who are in town for a visit. It's been springlike outside so we've been trying to soak in the nice weather. We have this week off and then Abby starts her bone marrow transplant workup two weeks. Hoping it's a low-key week with nothing eventful happening.
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!
