Monday, November 30, 2015

Someone To Help These Hard Times Pass


I've found that I'm a member of a club that seems an odd thing to elicit pride: the "clubfeet moms" club, the "moms of kids with Down syndrome" club, the "cancer kid moms" club, the "moms who have been there" club. I'm a part of that club for Eli's clubfeet, Ruby's Down syndrome, and, now, Ruby's leukemia.

In the past ten years, I've received messages from parents who are struggling with their baby's casts, or from a mom who is trying to figure out how to make the brace work in daily activities, or from an acquaintance or friend who knows someone who just received a T21 diagnosis. Or more recently, from someone who knows someone else with a young child's cancer diagnosis. Every one from close friends to internet acquaintances have come to me with questions, often asking if their friend can message me, or if there’s anything they can say to their friend and what should they do to help. And for every question that has been asked of me, I have asled ten of someone else. That's the way this circle of life seems to work.

Although these interactions sometimes make me feel like people see me as an odd 'take my bad news and tell me why it's not bad' self-helper, I never see them as a bother. In fact, I consider the fact they come to me as a compliment of sorts. It isn’t a compliment I necessarily wanted to receive, at least when it comes to leukemia, since I sometimes wish I knew nothing of the subject, but it’s one I accept humbly. The people who reach out to me trust me enough with their hearts and emotions to invite me into their private lives. And I get it. When all of our diagnoses were new, I wanted, needed someone to talk to also...someone who had gone before me and could tell me that things would be alright. Someone who wouldn't run away if/when I dissolved into tears. Someone that had gone through what we are facing and could give me the real deal. Someone who wouldn't be shocked by some of my new and possibly offensive questions and statements. Someone who wouldn't sugar coat things, but who also wouldn't hit me with difficult to process statistics and medical facts.

And then there is the part of this role that helps me relive the initial diagnosis. The part that lets me redeem my early moments in the club(s), especially when it comes to Ruby's Down syndrome. When I talk to parents who have just received the news while pregnant, or who are struggling with the early days of a little baby and what feels like a big diagnosis, I see who I was when Ruby was born. I see the fear, the grief, the confusion... It helps remind me how far Ruby has taken me and how much she's grown me. And I remember how alone I felt in those first few weeks, before we told everyone. How, even when we told friends and they were amazing and loving and supportive, they were still on the outside and I desperately needed someone else on the inside with me. I needed someone to say, "I know. I understand. I really do get it because I've been there and I'm here with you now."

When it comes to the leukemia especially, that reliving part also helps remind us how far down the road we are. How many procedures and chemo treatments and transfusions and hospital stays are behind us. I happen to think that is encouraging both for me and the parent I'm talking to.

One area most of us struggle with in this role is how to help, really help, someone who is going through the chemo. When I don't know someone well enough to stay with their child, or coordinate a meal calendar for their friends and family, the only thing I can do is offer advice of little things that helped me. My hope is that they can hopefully unload that information on the close friend or family member who is most likely to help oversee things for them. We are so unbelievably fortunate to have friends and family who rallied around us to take care of the older kids and get meals and do our laundry and and and...I would say having someone (or a few someones) to coordinate all of that for us was the single biggest thing that helped take some of the stress out of processing the diagnosis and plan for hospital stays for multiple weeks at a time.

I’ve had short, single-serving conversations with people who had a question about chemo or a test. I’ve talked to people for hours just about nurses or hospitals or hospital stays. and I've typed pages back and forth to moms who have gone before me and those who are just starting out. I will give advice in one email only to turn around and text a more seasoned mom for advice or a pep talk for Ruby's next step.  

All of this goes both ways, since we need each other. SO much our journey is about others. We aren’t alone in our bubble of diagnoses. We’re part of a community where we all need someone. I learned very early on, through the kindness of other parents, that it’s important to take our own struggle and turn it into strength for someone else. I am so grateful to be that strength for other parents, even if just for a moment of time. No matter how many days or weeks pass by, I will never forget the fear I felt during different moments of Eli's early months, Ruby's first days, and Ruby's third year of life so far. I can't forget the tears I shed during moments of despair. And I hope I never do. Those feelings are what motivate me to comfort others past those tears and fears and back into the joy they felt before their changing moment. Those feelings are what motivate me to help others find their new normal.

Sunday, November 29, 2015

Thank You Sir, I'll Have Another

Ruby's counts continue to climb (her ANC is over 100 now), and her cultures continue to come back negative for any growth or signs of bacterial infection, but the doctor on-call wants to keep her another night, just in case.

I get it. It's the safe way to go. But I'd be lying if I say I didn't internally swear when he told us.

I usually try to pick my battles with the doctors and nurses, since I know there will be many things I feel strongly about that are not in line with their protocol. Once he said we would be here at least another 24, I pushed for Ruby to be taken off of fluids. I've asked both nurses and the doctors on call about it, since she wasn't dehydrated and she was drinking and eating fine, but the answer has come back that it's 'standard protocol'. If we're here for a 48-culture watch, I can do that. But longer than that calls me to be a mama bear. Especially when Ruby was up the entire night (I do mean that - at least once/hour) with a full FULL wet or dirty diaper and a diaper rash that made her scream and cling to me like a baby monkey every time I changed her. Thankfully the doc said, "Sure....she's having a great output so she doesn't really need to be on fluids." That's one of those 'shake my head' moments, but I'll save that for another blog post.

So for now, Ruby's ANC is still on the rise and she is coughing less, but we are here for another 24+ hours. I did take her out to the garden as soon as they unhooked her at noon so that she could run. Due to the 4-lined hook up system she's been on, I have not been able to let her walk around and play at all. (Imagine walking 4 dogs at once...I swear it seems like the four lines of fluids all had a mind of their own and they were all different lengths!) She had a blast playing with the leaves on the ground and she completely wore herself out. The sunshine and fresh air did both of us some good, for sure.

Saturday, November 28, 2015

No News is Good News

Ruby's initial cultures are negative, which means we are good so far. Her fever has not been present since before her first round of antibiotics, which is great. Even though her cough sounds horrible (which any cough she's ever had does), the doctors and nurses are encouraged that her lungs sound good.

This morning we had a visit from a respiratory nurse who had the fun job of suctioning out Ruby's nose and throat. Tiny tiny little tube that went oh-so far up/down my baby's nasal passage after saline was flushed. Needless to say, Ruby did not enjoy that, nor did I (I got to hold her down while it happened).

A few doctors came to see Ruby during rounds and were happy with everything so far. They even said that her ANC is starting (just slightly) to go up, and where we saw monocytes (precursors to a good white blood cell count) in her blood work yesterday, there were even more present today. That means she is already starting to trend up. I did not expect that to happen so quickly; we were still trending down on Wednesday.

As of this afternoon, we are on-track to go home tomorrow night, after the full 48-hours of culture growing fails to happen. Things that would change that return would be another fever or a change in the way Ruby's lungs sound.

Friday, November 27, 2015

Home Again?


As much as we want to be in our own beds, there is some comfort in the hospital, and it actually does feel like home sometimes. Probably due to my 'creature of habit' nature, I guess.

Ruby has been working a runny nose for the last week. She got two new teeth just before her latest round of chemo started and I'm pretty sure another one came through this last week. Since she's not had a fever at all, and the product has been clear, we have not been overly concerned. Unfortunately, sometime yesterday afternoon she did start coughing also. While it sounded horrible, she has sounded that way many many many times in her previous always-congested days, and the doctors have never found her to have anything more than the congestion causing the cough (no lung issues or deeper infection). So even though it raises a red flag, I'm also aware that it's not out of the ordinary for her to sound that bad when she's congested.

Ruby woke up happy today and ate a great breakfast, even with some coughing. We planned to go as a family to get our Christmas tree; I was determined to get it all set up as a family of five. And even though Ruby was in good spirits on the drive to the tree farm, her cough and occasional cuddliness throughout the morning was enough to convince me that I would call the doctor when we got home, just to be sure we didn't need to come in to be checked out.
Once at the farm, Ruby walked around, petting dogs and checking out trees. But after about ten minutes, she only wanted to be held and was no longer happy. We quickly took pictures and got our tree. I had Lehr pull out the thermometer as I drove home; her temperature was 39.0 (we are supposed to call and come right in if it hits 38.0). So we decide to bypass home to drop the tree and the kids off and head straight to the hospital to drop Ruby and I off. A few minutes later we take her temperature again and it's 39.6. Yikes. She is not happy either. She's mostly sleeping, but also very uncomfortable.
There was a holiday mix-up with the clinic where we were supposed to be communicating with en route, so they didn't know we were coming into the ER. Once the Aflac Team found out we were in the ER though, they got us to the front of the line (it was busy) and right back to a room where they hooked Ruby up to antibiotics right away. Once she had the antibiotics in her system, she started smiling a little bit and talking again. Her temperature went down quickly, to my relief. (She was HOT when we got there!) During this process (during which Ruby mostly slept on me), the nurses took blood to do cultures and other tests on. Before we left the ER we knew that the first round came back negative: no respiratory infections like RSV or bronchitis.

Unfortunately, when you are in count recovery from chemo, like Ruby is this week to two weeks, any fever is a bad thing and involves a hospital stay. When a patient like Ruby heats up like this, they worry about a bacterial infection, so they draw blood and wait for cultures to grow or not grow. That process takes at least 24 hours, and once a fever is present (and the patent's blood counts are down), the patient has to stay in the hospital until they are 48-hours with a negative blood culture. So even if Ruby's cultures never grow (a positive), she will have to stay for 48 hours.

So here we are, back in the room we were in a few weeks ago for chemo, rockin' the fluids pole and hospital food. Ruby's friend, Claire, checked in a few hours ahead of us for her scheduled chemo, so at least we are in good company. Ruby didn't miss a beat, waving to all of her beloved nurses and techs as they wheeled us onto the unit tonight....she doesn't see being here as a bad thing at all.

I'm so thankful that her fever went down on the first try. I'm so thankful that she had five days with Grandma and Grandpa before this happened. I'm so thankful for an amazing husband who helped Ruby and I get checked in and then went home and packed up overnight stuff for us, AND brought us dinner. And even as crazy as it sounds (and feels to say!), after a crazy few hours of my girl being so not herself, I'm thankful to be in a hospital where I actually feel safe, and kind of at home.

Thursday, November 26, 2015

Thanksgiving

We were so fortunate to have Grandma Cathie and Grandpa Jim come back to visit for Thanksgiving. This trip was planned before Ruby's diagnosis and before we asked them to come help so much this fall, but no one wanted to forgo another opportunity to see each other. We did surprise the kids with Grandpa's visit; they knew Grandma was coming because of the join GG trip. He (Grandpa) surprised both older kids in a perfectly awesome way. Maddux came in from playing to use the restroom downstairs and he was in the adjacent bedroom making some noise so she investigated and he gave her a "Boo!" Eli was across the street playing basketball, so I brought him the phone (with Grandpa on it) to chat for a second. Eli walked slowly across the street, talking on the phone until he got just about to the driveway when he saw Grandpa standing by the garage, talking on the phone. He was so excited!
Unfortunately, Lehr came down with strep throat the night before Thanksgiving. He got antibiotics, but we still asked him to wear a medical mask all day (luckily we have a supply from Ruby's stash). Even though he felt bad, he was still able to hang out with us the whole day and pretend to not feel horrible.
The weather for Thanksgiving was amazing, so we did get some great outside time. We started off with Dutch Babies, which we usually do for holidays. Then Grandpa and Eli made tickets for a basketball game; we were all invited to watch on the back deck. Then we watched some of the Macy's Parade (Ruby LOVED all of the dancing and floats...it was more fun to watch her watching it!) Maddux got her toenails painted by Grandma and Ruby took a good nap. Dinner was perfect...everyone loved it except Ruby (she ended up with Cheerios instead). After dinner we took a short walk around the block because it was still about 55 degrees. We ended the night with apple crisp, pumpkin pie and board games after Ruby went to sleep. It was a great night.

Monday, November 23, 2015

Speech Update


So I really really really don't do a good job of getting Ruby's progress, especially speech, on video. I promise to try harder!

As much as I worry we are plateauing in a few areas, she is rocking in others. She still does not say a whole lot unprompted; she will give you 'more' every time she wants food, but has to be reminded to sign or say what type of food (usually not decipherable) and 'please'. When we work on flashcards and/or I prompt her for sentences in our daily activities, she gives me so much, but unprompted is our struggle.
One area she's excelling at (in my mommy-biased opinion) is her ability to say so many letters of the alphabet. I've been working on her with a flip book series since just before round two (so maybe the beginning of October?), and she knows so many letters and words by sight! She will say "a, b, c (kinda), d, e, f" great. Then she'll get caught back up at "l" and go through to "q". But even the ones she doesn't say well, she still gives an approximation. In this series, there is also a book for words starting with each letter. She will do "apple" and "bus" and "up" without any prompting at all; I only have to show her the page with the word on it (no picture).

If you want to smile, ask my girl to point to herself. When we do our family game of "Where's so-and-so?", Ruby loves to point to everyone mentioned, with a huge smile on her face. When you ask "Where's Ruby?", she used to pat her belly, but now she will often turn her pointer around towards her face.....seriously cute.

Sunday, November 22, 2015

Four Generations

My grandmother came to visit us when Maddux was being dedicated to the church, in 2007 when she was still an infant. We then saw her in 2009, when my brother got married; the kids were two and four. So we were so excited when my parents said they were arranging for her to visit us this fall!
GG, as her great-grand kids call her, came to stay with us for about five days. Maddux and Eli loved hanging out with her and hearing her tell fun stories. She brought the kids some window stick-on decorations, which Maddux had up on the glass in about 10 seconds.
Eli wanted to have her take a photo with him at his science fair. Both older kids could not get enough of playing Rack-O with her; it is their rediscovered favorite game! Ruby warmed right up to GG; she was giving her hugs and kisses by the end of the night, even though she arrived at dinner time. She loved showing her some dance moves and her skills at saying "B!!".
It was so cool to have her with us; Lehr took a few photos of the girls all in one place at the same time. I'm feeling very blessed to have four generations of amazing women together this week!

Thursday, November 19, 2015

Eli's Science Project

Yup. It's that magical year where we get to work for many many weeks on a project for the science fair!

What a season for this to happen too, with all we have going on. I honestly think (hope!) it was for the better...that it forced Eli to be more independent with it because of the decreased parental involvement in his academics this fall. He did come up with his idea all on his own, though his dad and aunt helped him fine tune the actual question he ended up with.

Eli wanted to see if deflating a football actually made it easier to catch. We ended up getting three identical (new) footballs and a ball pump/gauge so that he could throw each level of inflation 20 times to each subject and record their success rate. That worked out to 60 throws per person. (Eli threw every time and counted off the distance with his own steps.)

Several weeks were spent planning for how to perform his experiment to best get the amount of results he'd need to come to a conclusion. Eli ended up using 5 or 6 friends and 3 or 4 adults as test subjects. Due to the rain and our fall, getting all 10-ish people completed before the end of the project did prove to be a challenge. (We even did two of the kids one hour before Trick-or-Treating on Halloween!) When it came time to put it all together on his presentation board, Ruby and I were in the hospital and the boys were in the middle of a soccer tournament. But Eli rallied and worked really hard to get everything done. We've been so proud of his work ethic on it!
In the end, Eli had a great time and definitely learned a bunch. I know if he were to do the experiment again, he would change several things to help fine tune his results. Of course there were heads butted (mostly Lehr and Eli, but I'm only off of the hook because I was not there in person for most of the work), but all in all, I'd say the project was a success.

We all got to attend Eli's school tonight to see all of the projects. Eli was oh-so proud. And how cool that the timing lined up so that all five of us were there PLUS Eli's grandmother and great-grandmother!

School Update

November has actually found Ruby at school more often than not at school! And she love love loves it. She smiles when we pull into the parking lot and gets so animated when we talk about it at home. It's so cool to see her playing at home, even more 'appropriately' than before. (That's a phrase new to me in the last year: appropriate play. Basically it means Ruby plays with a doll as a baby, and she plays with dishes in a play kitchen as dishes, and a car as a car...so on and so on.) When Ruby and I are playing in her room, she is SO busy at her kitchen, filling up cups under the faucet (complete with sound affects) and putting food on plates, only to use a utensil to pick the food up and bring it to her mouth, followed by "MMMM!", of course.
Ruby did have to miss her Thanksgiving party this morning, unfortunately. She went to school that morning, but only an hour in, she spit up a little of her breakfast, so I had to pick her up. We've found her doing this a little more often lately; I think she can't handle as much food as she could before and this morning she definitely had a bigger breakfast. She didn't have a fever and was happy the rest of the day, unaware of the Turkey Day celebration she missed.

Monday, November 16, 2015

Little Mama

Ruby LOVES her baby dolls these days. Sometime just before this last hospital stay she started playing with them very intentionally. She would put one of them in her chair to eat, or set it on the couch with a dishrag over it like it was napping.
One day I was trying to keep her occupied while I was cleaning up the kitchen, so I gave her an empty oral syringe and told her to give her baby some medicine. Ruby walked to her doll, bent over her and put the syringe to her lips. Then she put the syringe on the ground and picked the doll up and made her move back and forth on her feet, all the while saying 'sst sst sst'. She was making the doll dance. See, when we give Ruby meds in the hospital, we always cheer and dance after we are done, to lighten the mood. My girl brought that little gem home to her babies.

Sunday, November 15, 2015

Sweet Homecoming

I didn't know it was coming, so there is no video footage or photo of the event. I do keep playing it over and over in my mind though.

When Ruby and I pulled down the street to our house tonight, I could see that Lehr and the kids were outside, up by the street. As we got closer, I could see that they had one of Ruby's ride-on toys at the top of the driveway with them. I alerted Ruby to this and she pushed up in her seat, straining to see. Once she saw her people, she got all excited and started waving her hands and feet. Such happiness.

Then Eli opened the door to get Ruby out of her seat. She was over the moon, and he was so gentle with her. He got her onto the driveway and she was all smiles and shrill shrieks....could not contain herself. The rest of the night was spent with her eyes wide open and never looking away from Maddux or Eli. It's good to be home.

Saturday, November 14, 2015

Day Four

Another kink in our 'normal' today.... Ruby's chemo bag ended around 7AM, at which point they flush it out. At the end of the flush, they start a new bag. Each time they start a new bag, they flush the line and do a quick 'pull' to make sure the flow is going in and coming back out (blood). When the nurse tried to pull this morning, no blood came. She tried four different times on both lines, but nothing. So they ended up injecting a medicine to break-up a possible blockage in her tube. That had to sit for 30 minutes and then be removed (it was not supposed to go into her vein). Before the 30 minutes even finished though, the nurse was able to get a pull, so we were a go to re-hook up the chemo.

The rest of the day was fairly uneventful. Ruby was somewhat fatigued, but not as much as yesterday. We still fit in plenty of speech and playing. She did knock out a monster almost-three-hour nap though; that was impressive. Ruby's appetite is still there, but she is picky, though not as much as the first round. One thing she's started doing during this hospital stay is drinking milk out of a real straw (from the carton) incredibly neatly. I'm almost tempted to let her do it on her own (instead of me holding it). That hasn't happened yet though because I fear she will definitely dump, spill, or throw it, filling our dorm room with a sour dairy smell...I know this girl.

We are still on track for leaving tomorrow afternoon. I imagine it will be dinnertime or so before they let us go. Hopefully we don't have any more issues with Ruby's line to delay us. So far they've been able to 'catch up' with the speed of her drip, but I think any other kinks would slow us down.

Friday, November 13, 2015

His Blessings, Full Heart, Can't Lose

2Corinthians 2:8  And God is able to bless you abundantly, so that in all things, at all times, having all that you need, you will abound in every good word.

My heart is so full. So so full. So abundantly blessed at such an unexpected time.

When you think about blessings, extended hospital stays usually doesn't come to mind. But today, this stay has been a blessing for all of us.

Ruby has been incredibly cuddly today. And not in a pitiful way...she's just wanted to sit with me and read with me and giggle with me.... She and I have spent all day just enjoying each other's company whether it was working on speech or reading books or taking countless laps around the unit or singing round after round after round of "Wheels on the Bus". My girl and I have been communicating all day, verbally and nonverbally.

And Eli and Maddux got to have a great Friday afternoon. They went to a friends house after school where they both have friends that they each cherish so much. They spent the glorious, sunny afternoon playing outside with some of their besties.

And finally tonight, Eli is getting what he wants more than anything in the world: one-on-one time with a parent. He and Lehr are eating dinner and working on his science project. Then they will wake up early and leave the house before the sun comes up for a weekend soccer tournament. Meanwhile, Maddux is with a friend whom she's not had much 'alone' hang out time before. She's spending the evening and all day tomorrow with a family that our family loves, even though we rarely get the chance to hang out.

Meanwhile a friend brought me lunch today, and all day long my phone has been lighting up with texts, emails, and Facebook messages, all encouraging and praying for my family.

As I held my baby girl tonight, soaking in all of the kisses and hugs she was giving me, I was reminded how incredibly blessed our family is. How blessed we are to be separated under three different roofs tonight, and still feel so loved and connected.

Halfway!

This morning marked halfway of this hopsital stay! That came SO quickly this time!!

Our Friday the 13th started with a bang: Ruby slept until just before 8. When the nurse came in, Ruby sat up, so I got up too. I walked over to her crib to kiss her Good Morning and when she stood up to come to me, her chemo tube stayed on the bed. It did not appear to have been unhooked for long, as there was only a small amount of toxic orange on her sheet, but we would still have to play detective and catch-up all the same. The team narrowed down the amount they thought she missed and recalculated her dosage rate so that she shouldn't miss a beat with her schedule. (This was after the evacuation of everything possibly touched by the chemo was totally removed, including the Unit Directors top shirt, which he wore while he personally changed out Ruby's sheets.)

Ruby has been a little less than her usual 100% energetic self today. More thumb sucking and cuddling with Mommy (not complaining!!). She still ate a good breakfast and an ok lunch, but was picky about what she did consume. Just as I've seen before, she will bounce in and out of the good and bad; one minute she'll have her head on my lap, sucking her thumb, and then she'll pop up with a smile and start talking. Our days have been spent doing speech, visits from nurse or doc, taking a few laps around the unit while catching riding on our chemo 'pole', doing OT, playroom on the unit, more laps, and more speech :)

Plenty of time in this round still for hair loss, but it's amazing to me that Ruby's hair seems to be filling in a little from when she lost so much during Round 2. It got so so thin and some of it short, but now there seems to be more short hairs in the place of some of the bald spots that were there just weeks ago. Crazy how her body still has the ability to grow with such strong medication in her system!

The team still agrees that she will be finished mid-afternoon on Sunday, and discharged shortly after. (Yes, I ask the SAME question every day to make sure it's the same answer!) Once home, she'll have those blood draws by the home nurse, giving us results within 24 hours so that we know if we need to keep her home from school/church (low ANC) or bring her to the clinic for a transfusion (low platelets or hemoglobin). The tricky part will be both Thanksgiving and Christmas. As the schedule stands now, she will not be receiving chemo for either, but her counts should be at their lowest those weeks. That means the random fever would mean an admission. Prayers for healthy healthy Ruby anti-germs those weeks, please!!
It's not from this visit, but I love this picture, and it's of Ruby in the hospital, so I'm including it.

Thursday, November 12, 2015

WWJD

Galatians 6:2  Bear one another's burdens, and so fulfill the law of Christ.
Matthew 10:20  For where two or three gather in my name, there am I with them.

Another one of those rambly posts, most likely.

Here we sit at the beginning of round three, not even half way through this journey, and once again I am humbled by the incessant amount of love and support shown our family. The verse above talks about bearing each other's burdens. This journey has not been a burden so far and that is because so many others have helped bear it with and for us. That is the only explanation as to why the weight of everything hasn't crushed us.

And talk about the hands and feet...The community effect on our family has screamed Jesus in every way. Every prayer and meal and kind note created for our family was a gathering, whether it was a family gathering or one person attempting to gather with us. In the past two weeks (while we were mostly home, not in the hospital!), here is just a sampling.
(*I want to mention some of these not to brag about those lifting up us - though they are deserving of that - but to thank them because so many of them have been anonymous, so I'm not sure how to let them know any other way just how appreciative we are.)
  • We have received several anonymous envelopes in our mailbox with tickets to Six Flags, gift cards to dinner out for Lehr and I, etc. Kind notes encouraging us included.
  • Friends (some we know well, some we have never met) have sent us little (and big) care packages, often including something for the big kids.
  • Ruby's tuition has been paid for a few months by an anonymous donor.
  • Two women I just met this week came to see Ruby and I: one brought a gift and the other brought lunch. 
  • Fruits, essentials like paper towels, and other groceries have been left on our porch.
  • A woman who works at the hospital spotted Ruby and I frequenting the outdoor fountain daily over the last few months and 'met' us in the hall one day. That led to a homemade hat for all three kids, some meal tickets for the cafeteria, and kind conversation laced with support and offers to help.
There are no words.....seriously. And I'm not listing everything here either...these are just some of the intentional acts of kindness in the last few weeks. I stand amazed every day at the prayers and love surrounding Ruby and our entire family.

Rest When We Need It

Exodus 33:14 My presence will go with you, and I will give you rest.

Such rest. We are only in day two (the second of four chemo bags was just started), but already, this is such a non-event. Ruby is a little tired, and a little more picky about food today, but she is still smiling, playing, eating, and loving like a champ.

Rounds today were simple, as they usually are. Ruby's chemo is a continuous drip for 96-hours, which means she will be done on Sunday afternoon. Her team confirmed today that she can go home then. She will have blood draws at home 2-3 times each week while at home, and when we receive those results, there is always a chance that she needs a transfusion. In that event, she will have to go to the Aflac Clinic for 4-5 hours. And if/when she spikes a fever, she has to go to the clinic or ER immediately for antibiotics. In that case, if her ANC is under 500, she will have to be admitted also. So life may be a bit of another kind of crazy some weeks....I foresee plenty of random afternoons for the older kids, but it still means us all sleeping under the same roof most of the time.

He gives us rest. This stay is still five days. Five days away from the kids and Lehr, five days hooked up to a machine and a pole, five days away from friends and outside and all of the things Ruby loves. But this stay feels like a huge rest because it is only five days. We had two great weeks home, and part of what made that time so relaxing was the lack of anxiety over entering the hospital for another month. Rest for my soul.

(*I did not bring my camera to the hospital for this round....five days hardly warrants a suitcase, let alone a camera. :) So no cute Ruby pictures except from my less-than-worthy phone photos posted on Facebook.)

Wednesday, November 11, 2015

Another Day One

Round three for Ruby is supposed to include a lumbar puncture before chemo (They insert a needle in her spine to pull fluid so they can test for leukemia in her spine and/or brain. The only other time Ruby has had one was just before round one and it was negative.), followed by admission to Aflac and a chemo drip for 96 continuous hours. This is the same dose/cocktail of chemo Ruby had for round one, so we aren't expecting any surprise reactions. Assumign all goes well, Ruby can go home when it's done (sunday night/monday morning).

We started on the right foot: Ruby did not have to report for her procedure until 9AM, AND she was scheduled to have her procedure in the day surgery center of CHOA rather than the Aflac Clinic (across the street from the hospital). So far our admissions through the clinic have been a compilation of delays, waiting room stays, delays, and more waiting. So when we were told that we'd *have* to go through day surgery instead, I was actually overjoyed. I think the protocol is to admit through the clinic and start chemo there, moving to the Aflac unit (in CHOA) once a room is available. That sounds like a great plan except we have never had that experience. Instead, we've arrived at the clinic at 8AM only to wait around all day (seriously, we've been moved over at 5:45, 4, and 3:30PM) to be moved over to the Aflac unit/CHOA and then start chemo.

Today's procedure didn't happen until just before 12, but Ruby was fairly happy through the morning. No problems with anesthesia, and we were moved over to her room on the Aflac unit as soon as she woke up! Ruby and I had a quick lunch with Daddy while the nurse drew some blood to test before starting chemo, then I took Ruby for a walk to the gardens. We came back to the room to hang out because the lack of nap was starting to wear on Ruby, but a quick speech video turned her mood around.

Once the chemo was hooked up, I got Ruby down for a short nap, but not without a fight. That is worth mentioning because even though she is two (and my daughter), she really doesn't throw fits. Nothing worth noting, anyway. But this afternoon she was in rare form, crying and arching her back and not wanting to settle down at all. Totally overtired. Fatigue finally won. 

We had a pretty tame dinner and evening. Ruby ride around in her 'pole' for 20 minutes or so before getting ready for bed. I forgot how much sitting around time chemo really means; we can't leave the unit when hooked up, which means we don't do much outside of our room. On the positive, lots of time for speech work!

Monday, November 09, 2015

Strong?

Just because I know me, and I know how to trip over my own words so well, this is likely going to be an awkward sounding post. It's not my intention though, which is why I feel the need to put the disclaimer out there first.

I've blogged before about how Ruby's diagnosis of leukemia didn't shake our world as much as I would have expected it to; her first diagnosis (T21) was our (my) earthquake and leukemia was just like a small aftershock...barely noticeable in comparison. The stuff that's come along with leukemia, mainly the hospital stays, has been the biggest challenge we've had, but that's been manageable thanks to incredible friends and family who have helped with more things than I could list.
So I tend to process things by writing in my head, usually on long hikes or runs. Then I put those words down when I get in front of the computer. That doesn't happen much in real life because, well....real life gets in the way. But in hospital life, lights out happens before 9PM and then I have an hour or so before I go to bed, so I have time to put those thoughts down. Those thoughts are the ones that run through my head not during the long hikes but during the long laps around the hospital with Ruby. Those thoughts always point me to God because when you look with the right set of glasses, it's impossible to not see Him.

When I was about 15 I started to require glasses to see the board (that's chalkboard, not 'smart board', kids) in class. Little by little, I've needed to up my prescription each year as my range of in-focus sight without glasses decreases. Every once in a while I'll grab an old pair of glasses by mistake and put them on in the car, or at a movie theater. I will quickly realize my mistake because those glasses do not allow me to see all that I need to see, whereas when I put on my current prescription, everything is in focus. When things don't go my way, it is far too easy to look at my situation with glasses that aren't showing everything in focus. Things that don't matter much will have too much importance placed on them, while that which should be the center focus might not even register.

All of this to say, I don't think how our family is approaching Ruby's situation is especially praise-worthy or strong. I really don't. We have plenty of not-strong moments, and the rest of the time we are getting through the best way we know how, putting on our glasses when we realize we've taken them off again. But we are often given praise for the way we are handling things, and people have asked me, "How can you be so strong in faith?"
When I answer that question in person it's always hemming and hawing, and I often replay conversations back in my head thinking of witty things I could have said. So when I answer that question in my head later, honestly my response is often, "We have to be strong because of the hand we were dealt."

Yup. Here's where it may come across as awkward.

That response is not meant in the way you likely think. When I say 'the hand we were dealt', that's not because we have nothing else to cling to, not because we've been given hardships like Down syndrome and leukemia, not because all we can do is put our head down and pray for a better tomorrow. Rather I wholeheartedly mean it's because we have a wonderful and loving Father to cling to, because we've been given gifts beyond what we could ever ask for in Down syndrome and in leukemia, because all we can do is raise our hands up and thank God for the blessings he's given us yesterday and today, which pale in comparison to our tomorrow.
This is where the glasses thing comes around again. It is very VERY easy for me to put on my out-of-focus glasses and complain about the hand I am dealt. With everything: weather, bills, disobedient kids. But when I look at life with clear focus, I see moments of awesomeness in every nook and cranny of my life and everything points to Him.

Sunday, November 08, 2015

Occupational Therapy

This is the only 'main' therapy that Ruby does not receive. While her PT incorporates some fine motor training into her therapy, and I read up on activities that will help her with OT, she's never had a professional in that area work with her. It was my thought initially to get her mobile as quickly as possible by hitting PT hard, and then once she could handle more, pull in speech to get her talking. Not that OT is not important, because it is, but I felt that walking and talking would help her more socially than holding a fork, or buttoning her clothes.

Because of that, there are many things I wish Ruby could do better when it comes to fine motor skills. She does not hold a crayon with proper technique, she cannot lace beads onto a string without assistance, she still struggles to pick up small objects due to inconsistently using her pincer. One area Ruby is starting to show improvement in, however, is her self-feeding with a utensil. Ruby's been using a fork for select foods (ones that are easy to 'stick' like Gardenburgers or some casseroles) with success for almost a year. We've been letting her use a spoon for cereal or oatmeal for about a year, and for the last 4-6 months, she's done pretty well to get that spoon loaded and then into her mouth, unassisted. However, she still would flip the spoon once it was inside of her mouth. During this last stay at home, she's corrected that and has had much better 'correct' form with the spoon.

As usually happens, that means I let her eat unassisted a bit more, which means she gets more curious without me hovering over her, so she's also used her fingers in the bottom of the yogurt or applesauce bowl if I'm not paying enough attention. So less mess from the spoon eating, but more (mommy's fault) finger eating.

Tuesday, November 03, 2015

Another Change Up

Just before I picked Ruby up from school this morning, a schedule nurse called me to let me know that Ruby's counts (from her home-nurse blood draw yesterday morning) were not registering high enough to start chemo tomorrow. So we are backing up Round 3 another week; Ruby will go in for her lumbar puncture and chemo start next Wednesday.
For those keeping track, that makes two weeks total delay for round three, since originally she would have started last Wednesday, but we didn't even leave the hospital until that day.

I can't say that I'm disappointed by this. I know in the big picture it puts us another week involved in the leukemia and chemo process, but when you get granted an unexpected week to be at home with the entire family, it's hard to see anything but positive.

Monday, November 02, 2015

Therapy Update

We don't receive services while in the hospital, but I do try to get as much speech and OT as I can into our days. Ruby is doing well with letter sounds and even some letter recognition. She will say 'Aaa-y' and 'beeeee' and 'deeee' when she sees those letters, and 'mmm', 'nnnn' and 'ooooh' when she sees those letters. I love it. Ruby does not give me most of the words that she can say spontaneously, but she does have so many words now. Her newer words are:
  • app-hhl (apple)
  • bussss (bus)
  • aaayt (eat)
  • hehp (help)
  • uhhg (hug)
  • isss (kiss)
  • nooo (no)
  • duhhhck (duck)
  • yahhhck (yak)
  • pea-sss (please)
Ruby is still working on threading beads on yarn...we work on it a lot and she is by no means there yet, but she's come a long way. She is getting better at feeding herself with a spoon and fork too. That is something we've worked on for probably a year, but every day I see improvements in her accuracy and cleanliness. She is also coming along with signing 'I love you'. That might seem like a speech thing, but it's a fine motor skill to get your fingers to operate that way, and she is darn close to it after trying so hard for two months now.

Sunday, November 01, 2015

Sports Science

Eli has been working on a science project for the last two months. Every fifth grader has to come up with an original project/'question', complete experiment(s), and present the final project at the science fair just before Thanksgiving.


Obviously our house has been upside down since before this was assigned, so Lehr and I have been pretty hands off with this process. That is a good thing, but I do hate that we couldn't have been more involved in the process from a support standpoint.
Eli chose to test if footballs with different levels of inflation/deflation were easier to catch. Lehr helped him get a few new footballs and a great pump/gauge for him to perform his 'experiment' with. This weekend Eli did another chunk of research by throwing the different balls to friends and recording their results. I haven't checked with our scientist, but I think the jury is still out on deflategate.