I'm trying to not be too excited but we might get to go home for a night. We got the "all clear" from the clinic as long as things stay steady with Abby. Things have been pretty good today but since she is off of the antibiotic she has had a bit more stomach issues so we are super hopeful, but also holding our breath as we know that it could go either way.
But, if Abby is still doing ok in the morning we will load up the cars and drive up to Fort Collins for a quick overnight trip! Pray that things hold steady and/or get better for Abby's stomach as well as that any fevers stay away too!
Today we actually got out of the apartment and went to the Denver Aquarium. That was the farthest that Abby has been away from the hospital in over 2 months. We thought it wouldn't be too crowed if we went in the morning... but we thought wrong. It was packed. So, we stayed as far away as we could from all of the little kids and raced through some of the crowded areas. It would have been nice to stay for more than an hour but we'll take what we can get. Even though Abby has her industrial blue filter mask on whenever she goes out, we didn't want to push our luck!
So, pray that all stays well and we can enjoy our short but sweet time in our house. Also that Abby enjoys her time at home (she's a little nervous to go home since she can't stay there).
We had a great weekend here at the apartment with the whole family. The weather was great and Abby is doing wonderfully! She continues to have more energy and feel less nauseous. The C.diff symptoms are still with her, but they are slowly getting better. Most likely, she will need to continue treatment for the infection after Wednesday's last medicine dose but that's not a surprise. C.diff is hard to get rid of when you are immunocompromised.
I am down here with Abby for the first part of this week. We had our Monday clinic appointment and we walked there! Huge success for Abby. Walking there meant also walking back and she wanted to get some ingredients to make some dishes she picked from a cookbook Anna and Lily brought her so it was a day of walking. Even my feet were sore at the end of the day. The clinic report was great. Her platelets have officially engrafted and are now in the low end of the normal range. Her red blood cells are slowly moving towards normal as well, which accounts for her having more energy. Her white count is also in the normal range. It can take awhile for her total immunity to be in the safe range but she is well on her way!
We also got the go ahead for a trip to the aquarium on Friday. Very exciting. But, the most exciting news of the day was the possibility of going home overnight Saturday and attending church Sunday! Abby was ecstatic. Well, as ecstatic as a 14 year old can be. I got to see her huge, crinkly-eyed smile when we heard the news. Kelly, one of my favorite nurse practitioners, said that if she is still doing so great at Thursday's appointment then we can do an overnight!
Today we are getting school done and then going to the Angry Birds movie. I'm ready for some silly entertainment.
Abby and I went to the clinic for her Monday appointment today. On Mondays they draw labs, check her medicine blood levels, her blood counts, and just see how she is doing overall.
Today she was doing great. Her ANC is actually 4736! Her red blood cells are up in the higher than they've been for ever, and her platelets are officially engrafted too. It's only day 33 and she is recovering in record time so far.
They also had her disease results from last weeks bone marrow test, right now she still is disease/cancer free with an MRD of zero. The preliminary blood chimerism test is also great, all of Anna's cells so far. By Thursday we should have the bone marrow chimerism test results and we are hoping and praying to see 95% of the cells be Anna's cells. Basically she is rocking her recovery so far.
In the clinic she decided to play a prank on her Nana and put one of the stuffed animal owls (that is on loan from her Nana) in a biohazard and then brought it back to her Nana in the apartment. She thought it was pretty funny. When she finally got settled back in her room she said, "I think I'm finally starting to feel like myself again!" The picture below does show that her silly side is back in force!
The task sounds simple. Come live in Denver, in a posh apartment with your 14 year old daughter and just take care of her. She mostly wants to just sit in her bed and watch Chopped, or River Monsters episodes so you would think it would be fairly easy. I thought I might even get some work done while I'm here. Abby watches movies, I work and the girls get some quality time with Tiffany in Fort Collins...
But things don't always match up with my delusions of future realities. The truth is that living 5 minutes from the hospital is kind of like being at the hospital but without all of the help. We get to be a nurse, cook and housekeeper and more. I'm not complaining (much) because I do get to get a full 6 hours of sleep without any beeping or people coming into the room to check on me. But to have those full 6 hours, I also get to clean, give meds, and be a short order cook. I don't think I'll be changing to any of those careers anytime soon.
To top off the normal workload around here, Abby now has C-diff again ;( So, I'm trying to keep her hydrated and out of the hospital. If she can drink enough, keep food down, and keep the fevers away, we can stay here. She is a trooper and really does take this all seriously. She drinks when I tell her to, even is she isn't feeling well. Pray that her nausea will go away soon though, that would make things much easier.
On the trooper note, Abby really is a pretty amazing kid. I know I'm biased, but to me she really does embody the verse in Philippians, "Do all things without complaining or arguing". Sure she has her moments, but it is relatively easy to turn her around. I listen to her pain with a sympathetic ear, and then call her back into the trenches... and she does it with that big Abby smile that we all know. It's crazy to me. I'm struggling just being at the apartment alone for just a few day and I don't even have to take all of the meds that I give her! So, she's a trooper, point made.
Oh ya, she also had a minor surgery/procedure on Thursday too. It seems so weird that these have become some normal that I forget to post about them.
Thursday was her day 28 bone marrow test. She's still pretty sore from it so I don't know what all they took to test but it was not the norm. They will be checking for 3 things. Chimerism, how full the marrow is as it starts to repopulate, and if they detect any cancer still (the MRD test). I think we'll have some of the results back late next week or so.
Oh ya, and Lily and Anna are fighting colds (Tiffany maybe too) so they can't visit until they are symptom free. I asked the BMT nurses if they could come and visit just in case... they said no. I understand, we want to keep Abby healthy too so we will keep on keeping on! Probably don't wat to expose the girls to C-diff anyway. Hopefully that little pesky gut-bug will go away and stay away too. Please pray for that.
Well, a lot of people have asked me, "What do you do in Denver now that you are out of the hospital?"... well, ok, just one person asked me but I though it was a good question so here's the answer.
We clean, we give meds, we make sure Abby is drinking enough water and cook her meals... and try to tiptoe quietly (we had a visit from our downstairs neighbors) sorry ladies, I forgot that the wood floors might make it kind of loud below ;)
Here's a time-lapse of our cleaning the main room this afternoon. I knew having the girls around would be helpful! And yes, I did make Lily help clean even though it was her birthday. Double digits the big Ten-O. Happy birthday Lily, and thanks for the help!
Abby is doing pretty good, she had that allergic reaction in the clinic yesterday but Benadryl is a pretty magical substance and she can now move her mouth again. That was weird reaction. She's never had any other reactions like this before, but since the transplant she's had 2 reactions. I need to ask if for some reason Anna might be allergic to these drugs too since it's now kind of her immunity living inside of Abby. Crazy huh?!
Tonights agenda includes a cake (provided by Brent's Place), present opening, and lots of meds for Abby. Just a typical birthday celebration right? Well, it's typical for us anyway and we all are together for Lily's birthday. That, right there, is celebration enough!
So I'm sitting in an infusion room at the clinic with Abby while she sleeps off an allergic reaction to her new weekly IV antibiotic. She was almost finished with the hour-long infusion when her lips froze up and started feeling numb. I grabbed the first person I could, which happened to be our BMT doctor who was walking by. We got her pump turned off and IV Benadryl administered and after some shaking chills in addition to the mouth thing she was out. That was an hour ago. Poor kid. She was mid-bite into a tortilla chip with salsa when it happened. I thought she had hit a jalapeno and offered her water. She couldn't answer because her mouth had frozen. It was pretty nerve-wracking. She'll wake up soon and we'll head back to the new digs, a two-bedroom apartment behind the hospital. We spent the weekend there as a family and it was bitter-sweet. Sweet to be together, to have Abby out of the hopsital, to have Mother's Day together. Bitter because Anna and Lily could go in the big hot tub and Abby can't, we have cleaning and meds and IV fluids daily that take a lot of time and energy, and we had to say goodbye to my folks Friday night as well as each other at the end of the weekend. That's the quick update. We are so very glad Abby is out of the hospital and doing so well.
All of the daily encouragements are gone, it's sunny outside and Abby is doing well enough to get out of here!
The doctors came around this morning and Abby was her smiley and happy self! She did everything they said she had to do yesterday, drank the prescribed amount of fluids, did her walks, took her meds and kept her nausea under control.
I know that she doesn't' understand sociology or group dynamics but she may have a future leadership role coming in her future. Today on our required walk around the floor, she passed by her group of doctors that were visiting another patient, caught there eyes, waved and said, "hello everyone!" with a smile on her face. I don't think it was intentional, that's just Abby. But, at the same time, that was a brilliant moment that I really think solidified their decision to release her today.
Keep on smiling kid, you are amazing!
Off to go pack up, and take a lot of load out to the car. It's amazing how much stuff can be collected in a small room over the course of 4 weeks.
I just got to talk to the team of docs in the hall about Abby. There is still a chance that she could go home (or to the apartment) tomorrow and I'm going to do all that I can to help move Abby in that direction. Oh I hope she can find the strength to persevere this afternoon. She is a trooper but the news that she might not be able to get out yesterday really took the wind out of her sails and she has been a bit down whenever they talk about it. I think she is starting to wonder if she can trust what the docs are telling her about her release date.
Could you her help by praying these 3 things:
That Abby's nausea will go away and/or be able to be managed by medications.
That Abby will choose to (and feel good enough to) drink more fluids?
And specifically that Dr. Craddock would feel comfortable with Abby's progress tomorrow and discharge her.
I am confident that the Drs. will make the best medical decisions possible for Abby. Right now it is just a battle in my mind to submit to this authority in our life. The docs are in charge and I need to honor them in that role. We'll see what tomorrow brings.
So, as is often true, we are going to take it one day at a time!
Update: 12:30pm
Things are a bit up-in-the-air but overall pretty good. The biggest update is that Abby is having some stomach pain and a low-grade fever right now so hopefully it is nothing and will pass. If not we may have to stay longer than we were anticipating. If she spikes a fever, then of course we would have to stay in but if not we might be able to get out Thursday.
Original Post:
Abby's ANC is at 700 today, 610 yesterday, 410 the day before and 500+ 4 days ago. So, she is on her 2nd consecutive day of +500 meaning that she may be able to get out tomorrow! We are sure praying for that to be the case. This tummy pain could push it back to Thursday or even next week but hopefully they'll let her go tomorrow. We'll see.
Abby is ready to be out. It's officially Day +20 today but Abby's been in Denver for a long time, since the beginning of April I believe, I think she started radiation on the 5th and she is ready for a full night of sleep without beeping alarms, blood pressure cuffs, and pulseOx noises.
Yesterday we got to start our "Independence Day" training. Basically this is the day that we get to give all of her meds, do her central line care, and show the hospital that we are capable of fulling taking care of her while we are out of the apartment.
Tiffany and I started yesterday with a couple of cap changes on her double lumen Broviac line. Then Tiffany got to call the nurse to tell her when Abby needed meds, and set an alarm to get up at 2am and 5am to give the meds to Abby. Tiffany is pretty tired today, the night nurse is a great nurse but is also really loud. We actually joke that it's like having a truck in your room during the night. The nurse was in a lot last night because Abby had to get platelets and red blood cells which is a lot to do in the middle of the night. Hopefully Tiffany can get a nap today.
Praying that the fever stays away, the stomach pain goes away and that they let us out soon.
I woke up today to the printout of Abby's counts with a big 520 for her ANC highlighted in yellow by our night nurse. So exciting. Right now, Mark is making his Saturday morning pancakes at home and Abby and I are talking about how next Saturday we should all be in the apartment eating pancakes together for the first time in a month! She is so ready to get out of here. They do a great job on the BMT floor but we are ready for no IV beeps, no vitals every four hours, and uninterrupted sleep, not to mention a change in scenery and food choices. I will miss the ladies who come through twice a day and clean the room. We will be doing that once a day at the apartment, which will most likely take us an hour each day.
But we are so thankful for the hospital and Brent's Place because without them we would be living in a hotel room for the next 2 months. We lived in two small Japanese hotel rooms for two weeks last August and we are pretty much over the excitement of hotels. Anna and Lily are excited to do city life again. Abby is excited to get out of the hospital but a little apprehensive about living with loud sisters again (she said to me last night). It is pretty quiet here in the hospital. An introvert like herself could get used to the solitude.... so it will be a bit of an adjustment there.
We are thinking of trying out a half and half schedule for now. Monday-Wednesday I will be with Anna and Lily in Ft. Collins, doing school, having playdates (theirs and mine), getting errands done, stuff like that. Mark will be in Denver with Abby working and helping take care of Abby and get her to her appointments. Oh yeah, and cleaning the apartment daily! Then either Wednesday afternoon or Thursday morning the littles and I will head to Denver and we'll be a family in the apartment until Sunday. That's the plan. It will probably all change in a week like things tend to do in our life since we told God we were up for whatever he had for us.
It isn't the change itself that I struggle with but the lack of control it brings. Change in the framework of what you have learned to expect is one thing. Change that comes out of nowhere (seemingly) and throws your world into chaos can be hard to take, day after day and week after week. But God keeps on reminding me he is with us in this and cares deeply. I don't know where I'd be in all of this without my relationship with him.
Yesterday, at home, I looked out at the bird feeder and saw a bird I have been trying to coax to our yard for years with no success. I have had the food in our feeder that this bird supposedly prefers for 5 years now. This year, I sent Mark to the bird store when we got back from Japan and he brought home something different. I wasn't sure I liked the change. I really want the bird to come to our yard and the food I get is supposed to do that, all the bird people say so. Yesterday, the very bird I've been trying to attract showed up! A beautiful goldfinch sat on the feeder, eating happily. The change was good, even needed. It wasn't what I thought was needed. But it brought something that made me smile and reminded me that God is bigger and he cares a great deal, more than I can comprehend. He cares about small birds, he cares about Abby, he cares about the Schreibers, he cares about all of us. Crazy.
I just talked to the Docs this morning and it looks like she is on schedule to get out of the hospital during the middle of next week! ANC at 440 today and they expect it to double for a few more days. Once she is at 500 for 3 days in a row she can leave. So, Sat, Sun, Mon should be the 3 days and then we'll have our "independence day" the day that Tiffany and I get to give her all of her meds (it's a test to make sure we know what we are doing before we leave).
Once we pass our test, get trained on how to give all of these pills and when to give them, we'll get to take the 10 minute drive to the new apartment. Woot woot!
They will also be doing a chimerism test which will start to help them determine who's cells are coming back. Obviously we hope that these cells are Anna's and not Abby's. Chimaera is actually a greek mythological creature with 2 (or more) heads. In a medical sense, the condition is when you have 2 types of cells in your body. Oh those doctors are so clever in their naming! But we would rather have a successful takeover of Abby's cells by Anna's stem cells than a 2-headed creature let loose in Abby's bloodstream. This blood test will be an early indicator of that condition and then a day-28 bone marrow test will be the better test to see if Anna's cells have outcompeted Abby's.
Finally, Abby's IV pole is looking pretty good lately. Only 2 pumps on it now, and then basic IV fluids with an occasional antibiotic dose. She's been taking lots of oral meds, some of which make her very nauseous, but overall she has been having couple blocks of the day where she feels good enough to eat. Hopefully we'll figure out a way to kick the nausea soon and let her have full nights rest.
Hopefully it will stop snowing and be sunny by the time we leave. Gotta love the Colorado Spring!
I think the hospital is starting to catch up with us. We're all pretty exhausted right now. Life still goes on even when you don't sleep well every third night. Yet, there has been a lot of good lately to report, and, at the same time, a lot hard. But, as you all know it just keeps going. So, we keep on going.
I know that people are wondering how Abby and the family is doing so let me give you the quick update. The Good, The Bad, and The Ugly or in our case, The Exhausted.
The Good-
Well, let's start by saying that those baby monocytes keep marching along and are continuing to turn into lymphocytes. Abby was at 20 ANC for 2 days, then her ANC was 40, 50, then 90 and today she's at 130! As Tiffany said, Abby is also now off of the pain pump and is moving over to mostly oral medication. Her mouth sores are almost gone and probably her throat/stomach/gut is the same since the pain has subsided. The eating is going ok. Still have to offer her food over and over again to and remind her to try some food. If she doesn't eat enough then they'll move her over to an NG tube (basically a feeding tube through her nose) to feed her. I'm hopeful that she will eat enough to fully sustain her soon, get off the IV, and be ready to leave this place once her ANC is at 500 for three days. We had the discharge meeting yesterday and they are hopeful that she'll hit those numbers next week. So, I guess it really could be out of the hospital soon! Wow.
The Bad- (or mixed emotions really)
Even when Abby is released we still have to stay close to the hospital until Day +100 to +120... That means she can't leave Denver/can't come home until late July/early August. So, we will be moving again... kinda. We now have a 2-bedroom apartment near the hospital in Denver. It's almost as fast to walk to the hospital as it will be to drive. I wish our house was just a bit closer to Childrens Hospital so we could all be a family together again. But the reality is that we won't all fit very well in 600 sq/ft and to keep Anna and Lily in Denver all summer would be tough for them. They'd basically miss their whole summer playing in the yard and seeing their friends. So, we'll have to figure out some rotation of time together and time apart.
In the midst of all of this, our stuff came on back to our Fort Collins house on Saturday. We haven't opened up all of the boxes yet. As you can imagine, it's kinda like opening up a box of memories. It's nice to have more choices of clothes to wear and the girls were excited to get their bikes back. Understandably thought, they were also a bit sad. Lily said she missed biking as a family in Japan. Anna had a few hard days too and I think some of it can be attributed to the arrival of this stuff. They've had a lot of change.
The Exhausting
With all of that said, I think that not being a family unit continues to be the most exhausting part of this journey. We have always found strength together as a family. In Japan we biked to school together, played games together, had family nights, talked over spiritual and emotional needs, walked, shopped and sometimes cried together. But now, we are apart. Anna and Lily can't visit Abby in the hospital because it is still "respiratory season" and they are under 13. I think we all are starting to feel the effects of not being that tight family that we were. I had a little Daddy Daughter Movie Night on Monday night since I was home by myself with Anna and Lily. At the same time, Tiffany and Abby had a little movie night of their own in the hospital. And though we may be doing the same things, with 75 miles between us it just doesn't feel the same.
Last night after our movie I crawled into bed with Lily to tuck her in and pray with her and she asked, "Do you think we'll ever be able to go back to Japan?" I told her that she is still young and has lots of opportunities to go back to Japan. But then she said, "But will we ever all go back to live there as a family?". I had to pause. Finally with tears my eyes, I said, "I don't think so honey, I don't think so." And her final question, as if she was just trying to fully wrap her head around this all... Daddy, did they give our house away?" ....."Yes, sweetie. It's not our house anymore."
We all have had, or will have moments like these in our lives. Times like Lily expressed when you just want life to go back to the way it was. Hard times, sad times that you'd rather avoid. Ours just happen to be packed into this year. Yet, we will be a family together again soon, at least part-time, and then full-time. And we will be tighter as a family because of our times together, and because of this time a part. You only know what you miss when it's gone.
Let me leave you with this song from Passenger. I know he's singing these words from a different heart, but to me, they still ring true to where we are as a family. The truth is that you only see rainbows when it rains.
Well you only need the light when it's burning low Only miss the sun when it starts to snow Only know you love her when you let her go
Only know you've been high when you're feeling low Only hate the road when you're missing home Only know you love her when you let her go And you let her go
Here's a cover of the song by Jasmine Thompson that I like. I think she did this when she was 12 or 13 year old. Props to her and all Middle School kids that have dreams of they can do in this world.
So it is looking like Abby will be discharged sometime next week. We are blown away! Her monocytes are continuing to increase. Her ANC is 90 today. Once it reaches 500 and stays there or goes higher for 3 consecutive days, she is able to leave the hospital. In preparation for that we are working on getting her meds to oral, instead of IV. That is a slow process as some of them don't sit well in her stomach. On the stomach note, she also has to be eating. That is slowly happening. After 2 weeks of mucositis, radiation, and chemo her stomach is on strike I think. She has been getting IV nutrition for the past 2 weeks so it's a matter of stimulating her appetite, having her try some things even though they don't taste like much right now, and then having her stomach keep it down. She is being weened off of her pain meds as well. If all of that can come together and she doesn't get any infections she will be out of here! We will be behind the hospital in the apartment since we will be checking in a few times a week at the clinic. At around day 30 she will have another bone marrow test to see if the new cells are Anna's or hers. Obviously, we hope they are all Anna's. If they aren't, they have steps they can take to encourage Anna's cells to take over and Abby's to give in. Mark and Abby and I will attend a discharge class Wednesday to learn all the "rules" of caring for Abby once she leaves the hyper-clean hospital environment. We've taken the class to learn how to take care of her central line so we can check that off the list. I think there is also a meeting with the pharmacy to go over all the meds she will be on. Oh, and we have a day in the hospital where we have to be in charge of all of Abby's cares. Mouth, nose, meds, bath, central line.... to make sure we are able to care for her. It's funny, I was thinking they should have done that with us when she was born before we got to take her home from the hospital! Of course, if that were true none of us would have been able to go home with our kids!
Anna continues to get back to normal- at least physically anyway. The life of an adolescent in the throws of cancer is nothing close to normal. Lily is doing well, lots of energy and keeping us all laughing (or tearing our hair out, which for some of us threatens what little hair we have....not naming any names). Anna and Lily are home doing school right now. Mark is getting some work done at a coffee shop close by. My folks took a much needed break for a couple days and are staying in the apartment here in Denver re-cooping. Abby is playing with some Lego Elves kits she got and is feeling really well today.
As always, we appreciate your prayers and support of us as we walk it out. It seems like we have come up the down side of the BMT and are now on a solid road to healthy. It feels good.
Hi all. This is Tiffany. I am sitting with Abby at the hospital right now and for the first time since radiation started, I feel like there is a little breathing room in this whole experience. I think we all feel it, although we are all very, very tired. It feels like there is some time to process all that has gone on from radiation to now. It feels like there is room to go get a cup of coffee from the kitchen and stand at the window and drink it and look at the view from the 7th floor here at Children's. Abby is doing better. She is still hooked up to lots of things, pain pump included. However, she isn't needing all 3 anti-nausea medicines round the clock. She hasn't needed her pain meds to be dosed-up which is good. She is talking more, engaging more with those around her. Her mouth sores are not getting any worse, neither are her GI sores we believe. Today, for the first time, we saw some monocytes in her blood! Huge deal. That means Anna's stem cells have found their home and are beginning to produce some baby-blood cells (monocytes). We will wait through the weekend to see if it's really beginning. It's day +9. The BMT manual (yes, they gave us a manual) says engraftment can start as early as 7 days. It's still a slow climb out of no immunity but we are starting up the other side and that is wonderful! Anna was starting to worry that her cells weren't going to get to work, or that they would cause more problems. I can't wait for Mark to tell her the news!
We also have an apartment down here now. Another huge deal to celebrate! Brent's Place is managing 4 new apartments that the hospital rented. Since Brent's Place is full full full we get to stay in one of the new apartments but still use all of Brent's Place resources. So... we get to have meals brought to us Monday, Wednesday and Friday at the hospital if we want. We get to go on outings with Anna and Lily once a month in Denver. A music therapist comes on Thursdays to Brent's Place and can do lessons on the piano or guitar for the girls, Abby too when she is out of the hospital. The apartment has a swimming pool! Abby won't be able to use it but Anna and Lily will. We are going to try to play that down and so are Anna and Lily because we all know how much Abby loves the water! At least our place doesn't overlook the pool. So, we will have a place to crash down here for now if needed and when Abby gets out we will have a home away from home that puts us right next to the hospital for all those appointments until day +100 and keeps us close in case something urgent comes up.
Prayers needed for Abby to start eating a bit more so that she won't need the feeding tube. Also, continue to pray that the monocytes are being made and the whole blood factory is up and running soon! No infections-so far so good.
I love this pic of Abby! For obvious reasons! This is the girl who smiles, who loves simple things...who gets excited about handling spiders and collecting owls...a girl who is just as much at home with dragon television shows/movies as she is with My Little Ponies. Abby has a delightful innocence to her spirit, an inquisitive heart and focused mind. What been amazing to me (this is Robin, the "Papa" writing) is to hear of the steadfastness and incredible mature manner that Abby is displaying for all the hospital staff as well as our family/friends to see. I don't get a chance to see her often because I'm on "home duty" with her sisters, Lily and Anna. Even so, I hear the stories as well as see for myself when I get a quick Facetime glimpse of Abby "in battle" mode. I remember when she was three and I wrote often in her blog about the amazement and awe that we, her family, felt as we watched a young girl fight the cancer demon. Now, the story is the same...from the stories I hear from her mom, dad and "Nana" (Vicky), Abby is focused, heroic, and proving once again that she is able to handle and work through whatever this Leukemia treatment is dishing out. For those of us who look for inspiring moments and people around us to emulate and from which to gain strength and perspective in our lives, I have no further to look than my eldest granddaughter. She has more bravery than I would have in the same situation. She rarely suffers publically...she bears all things at the same time that she joins us in believing all the promises of God for His overwhelming presence in the darkest of our despair.
As I mentioned above, I'm not on the hospital front lines. Even so, I daily get an earful of information from Mark, Tiffany and Vicky. As each of them make their way to and from the hospital for their 36-hour shifts, each comes home not just exhausted but completely amazed...amazed at how this young lady is navigating trying days. I think of Abby and then I think of the shallowness of much of our culture, the people who are held up as "role models," from Pop Stars who are doted over to athletes who revel in the public's adulation. It would be interesting to get everyone in the world to take a trip through the Seventh Floor at Children's Hospital in Aurora, Colorado. THERE is the place where real heroics are being experienced day in and day out. There is the place where people should be standing up and taking notice of children of all ages facing down not critics of their superficial music or complainers of the unfairness of a sport in which millions of dollars are made...no, these children display the real heroics. They withstand the suffering that few adults I know would handle with grace and acceptance. I watch Abby and hear the stories day by day...it is the same in almost every room of the seventh floor...heroic persistence, focused hope, and enduring faith.
This pic of Abby says what I can't say in words...a smile and a cuddle with another one of the seemingly millions of stuffed animals (especially owls) that adorn her room. This is the girl who is running the race and keeping the faith. We are in awe...we are in prayer...we will be the first to cheer as she crosses the finish line into health. More to come in the coming days!
Well, this is the "Papa," aka Robin Dugall. Mark has added me to the contributors list for obvious reasons: sometimes the guy is beat! He wants to do a blog post, but his fingers and brain are on a small but highly needed vacation! Seriously, I'm blessed and honored to be able to share with our extended family of friends. I simply pray that I can do the summaries justice.
Today is Day +4 - Abby is in the hospital continuing the fight. The post-transplant days are filled with buzzers, beeps, nurses doing vitals, doctors performing tests and consults, and a whole host of medical realities. I think the last number I heard was six - six different IV lines are heading into Abby's body carrying various drugs - for pain (four meds for pain, specifically), for nausea, for fluids, etc. At this stage in Abby's journey post-transplant, the highest concerns have to do with Graft vs. Host disease and its physical implications. As of today, Abby is dealing MORE with the continuing side effects of what happened with she received chemotherapy and radiation treatments PRIOR to the transplant. Most problematic is the condition called, mucositis. Here's a definition of the condition:
Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. Mucositis can occur anywhere along the gastrointestinal (GI) tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. Oral mucositis is a common and often debilitating complication of cancer treatment.
As you can imagine, the sores (that at this point are occurring in Abby's mouth and in her lower GI tract, are painful. This "window" of potentiality in terms of this side effect will go on for at least the rest of this week. The biggest issue is that she has no "fighters" within her blood. After the transplant, her body is attempting to accept the new stem cells. It is not yet at the point where it is producing the necessary white blood cells and antibodies that can do "battle" against mucositis or other "invasions." She still needs to be in a very protective environment. NOBODY can expose her in any way to something even as minor as a common cold. So, essentially, she is on medical lockdown.
For me, I watch my wife (the Nana) Vicky and Mark and Tiffany making their way to Denver (a roughly 65 mile trip) daily in rotation. Most days there is ONE person needed at the hospital to do mouth sore care, help Abby try to get a small walk in (if possible), bathe, and attempt to get her to eat and drink (if she can stomach anything at this point). One of them spends the night at the hospital and then gets "relieved" after a two-day, one-night rotation. As you can imagine, there is much to be aware of when having the on duty hospital care time. I watch all three of them in the rotation and I'm amazed and blessed. They can't sleep at the hospital amidst the beeping, buzzing and medical team vital checks. Even so, there are small celebrations that we have daily. For example, we cheered here in Ft. Collins last night when Tiffany (who was on duty) shared with us that Abby had a bite of BBQ pork rib. Vicky was with her earlier and was celebrating her eating a small amount of mashed potatoes. Another big concern at this stage is her calorie and fluid intake. So we keep praying that she can eat and drink even small amounts so that the medical team does not have to resort to other means of keeping her nutrition "up" (primarily, feeding tubes). At this point, remember, she has NO immune system. The prayer is that by day +28 she will produce three consecutive days of ANC levels (white blood cell counts) over 500 (normally that number is in the 1000's). But let me tell you what I hear, "Abby is such a trooper, she is strong, focused and incredibly brave to keep facing these days with confidence." Not only that but Mark and I estimated that at any given moment 100's of people from around the globe are praying for her. We have people praying in Japan, Romania, Poland, Hungary, the UK...Canada, Mexico, South Africa, New Zealand, all over the USA. It is amazing and such an encouragement. As I mentioned in https://spiritualregurgitations.com/ (which is MY blog) we have as a family such HUGE THANKFILLED HEARTS for the outpouring of love, incredible gifts, and more support than we can dream of!
That's it for now...more to come as the days go by!
It's snowing here in Colorado. Nothing like waking up to 6 inches in the middle of April. I'll drive down through it today to tag out Tiffany and be with Abby tonight.
Lots going on of course right now. Abby is still in a lot of pain. Wakes up pretty sore and then has to catch up by pressing the pain button every 10 minutes. They took her off of the pump for an hour yesterday afternoon to give her antibiotics and that was really rough, lots of pain. So, they gave her a large dose of Dilaudid and that knocked her out for a bit. Today when they unhook her they will try to give her a large dose before they unhook to help control the pain.
Basically it's just a waiting game right now. Anna's stem cells are finding their way to Abby's bone marrow and grafting in. At the same time Abby's blood continues to die off from the effects of last weeks chemo. She has no immunity right now so she is on an antiviral, an anti-fungal, and antibiotics. She does anti-everything mouth care 3 times a day and anti-fungal nose spray (that burns) 2 or 3 times a day too at 4 squirts each side. Not her favorite thing. She tries to eat during the day but it is really painful so instead they are feeding her through her IV for now. Basically the routine is: mouth care, 3 walks, 1 bath, and fill the rest of the time with distraction via Amazon Prime, Netflix or something else on the Roku (yes, I was proud that I got that to work on the hospital network).
On the home front Anna is doing better day by day. Still pretty sore and tired. They did take a lot of marrow, gave her back her own unit of blood and still left her short by about 1/3 of her blood volume. She'll be taking iron pills for a month or 2 and drinking lots of fluids.
Lily is doing ok too. She could really use some attention as the focus has been off of her for a long time. She also was pretty much quarantined to her room for the 8 days before transplant since she caught a cold on the night before Abby's radiation. At least we kept Anna well enough to give the marrow -that was a stressful week for me at home and I'm glad it's over.
Life continues to roll on along. We have our shipment from Japan coming in soon. They tried to deliver it the week before radiation but I had to ask them to hold off since we really couldn't have a bunch of boxes that have been on a boat, in the damp, in the dark... delivered to our house. Hopefully I can reschedule that for next week. Do want some more clothes options but I'm not really looking forward to the memories that get delivered with those boxes. But the girls are excited about their bikes and other items that they had to leave in Japan. It's weird to look back at that day that we left with 11 suitcases, closed the door to a nice clean house, and then never came back. So surreal.
More life keeps rolling as well. I've been trying to get some traction for next year with my Maker Education Consulting practice. It's been going ok and I've had a lot of calls with schools. Unfortunately they all tend to get scheduled during some appointment with Abby. I had a great call with a school during Abby's Broviac surgery. And another great call after Abby's first radiation therapy. It's been exciting to get a new business going (but also tempered by Abby's hard times) Hopefully it will be a good part-time venture for now. In other life news, I punted on the taxes last week and filed an extension. Making money in Yen for part of the year in Japan didn't really fit very well into any category of TurboTax;)
Enjoy your Spring day whether it is snowing, sunny or cloudy... it's still Spring!
Quick update. Abby's still medicated pretty heavily. Threw up a bit today. Anna is sore still but is a real trooper. Tiffany and I will get one more good night sleep and then I'll drive down tomorrow (most likely through an April snow storm) and stay a night or 2 with Abby.
We subscribed to the Smithsonian channel on Roku (which I go to work on the hospital network) so Abby has some new show to watch. We'll see if she remembers any of these shows but for not at least it gives her something to do as she rides out the storm.
I'll probably go to bed at 8pm (Eastern time) well, maybe I make it to 9pm... we'll see.
Have a great night. We'll let you know if you anything get worse but for now we are just walking it out day by day.
