Pop Goes the Bubble

Isaiah 40:31   But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Here is yet another opportunity for me to not be weary or faint….here is another chance I have to trust Him to take care of my family.

Ruby is doing amazingly well still. Her blood counts are all good, she’s not running any fevers, she’s been off of nausea medicine for several days and hasn’t shown any signs of needing it, and her energy is spot on with what it was before we started chemo. Outside of the fact that we are in the hospital, it’s like there is nothing out of the ordinary going on with her.

Because of this clean bill of health, rounds for Ruby each morning are very quick and uneventful. I decided to rock the boat this morning and ask about future rounds, since this one has been so easy going. Our doctor told me that next round will be some (all?) of the same chemo meds as this one, including the 4-day drip, but they will be stronger and she will feel it more. Because of the increased intensity (here’s the mic drop), Ruby will be in the hospital for another 21 days.

Do not be weary…..do not be weary…..

The stay in the hospital is no picnic, but it’s manageable, and Ruby and I still get outside, get some speech and OT work done, and even see friends a few days a week. Until this point it was just a goal I had in mind and we were powering through, looking very forward to October. 

Now I know we can manage that for another month. But our family being split in two has been hard for me, even for just the 10 days so far. The things that we’ve built our family on, dinner together each night, bedtime reading, after school check in with homework/sports/goings on….I am missing these things a lot. On top of that, October is a fun month for me and the kids…we do several Halloween and fall type activities: crafts, fun foods, pumpkin patch trips, scarecrow sightings, parades...

And of course this plays into Ruby’s school. I don’t know how it will work because the longer she’s away, the less likely it is that she can hop back into her class. And while she’s rocking and rolling with speech and some fine motor things (because I get to work on it so many times each day), her fatigue for this next round will affect her energy, which could affect her willingness and/or ability to practice those skills.

I know my family is strong, I know this is a short phase for the long life Ruby has ahead of her, I know He will see us through. But this was a deflating moment.

More of the Same

Isaiah 40:28  Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.

Today was much of the same for Ruby, starting with a very decent breakfast which she mostly fed herself (she is enjoying holding the spoon out for me too). We took our oral meds and then got unhooked from the IV. Ruby and I went to the fountain, to the playroom, to the other playroom, and to the fishtank all before rounds. Ruby's team had nothing new for us: Ruby's numbers are still looking great, as are all of her vitals (checked every 4 hours, around the clock). She is still ok'ed to be on fluids only at night, and she is still not showing any need for Zofran. That, combined with her current energy levels, may mean she makes it through this first round of chemo without any vomiting or fatigue....we'll take it!

Around lunchtime, Grandma Cathie and Grandpa Jim came for a visit. Ruby had a great time running them all around the hospital. Then Grandma stayed while Ruby napped so that Lehr and I could meet with the social worker (mainly to work on Katie Beckett) and then attend a new diagnosis orientation/training with the nurse manager. So much information...so so much.

Lehr requested to stay with the girl, so I came home to have dinner with the big kids. It was so good to sit next to them for a relaxed meal around our table at home! It's hard not seeing them every afternoon and knowing what is going on in their classes and at school. Eli has a presentation tomorrow that I knew was coming up, but had fallen off of my radar. This boy has prepared well though and is so impressing me with his maturity in the area of school work. Maddux had her first Art Club meeting today and was excited to be back with her art teacher for the extra time.

Tonight I thank God for all of the people who are still tirelessly praying for and caring for our family. Support notes, cards, gifts, emails are still pouring in and we are so very humbled by it all. Thank you is simply not enough.

One Week

Psalm 27:14  Wait for the LORD; be strong and take heart and wait for the LORD.

Ruby woke up at 7:15 in a great mood. We ate some cereal (yay!) and then I asked the nurse about Ruby coming off of the IV for a bit each day. She said she'd check into it and low and behold, we could be free!! Ruby did not have to take Zofran (or anything else) orally this morning, so that was another major plus.

After cleaning up, Ruby and I went downstairs to explore. We tried to check out 'The Zone" play area, but it wasn't open until 10, so we opted for the garden instead. Ruby had a blast walking all around the fountains, pointing out the water and everything else. Around 10:30 we came back to our room to have a quick snack (including me making her drink water before every cracker) before the Songs for Kids music hour. So much fun!  (Seriously, it is amazing the amount of stuff they have going on at the hospital during the week for these kids!) There was only one other child in there when we started, which was great because Ruby tends to be a bit 'in your face' at times and she lost interest in the one child quickly. After about 10 minutes more showed up though, so I had to hold her a little more. But before that, she was dancing and singing...the volunteers were going crazy over her! Halfway through the music, I got a call from the nurse and rounds were starting, so we had to head back up.

During rounds, the team said Ruby's numbers are still looking good. As long as she doesn't appear to be nauseous, she can skip the Zofran (orally), BUT she has to take an anti-fungal med twice/day orally in these after-chemo days. (The day nurse let me give it to Ruby after lunch and it was less dramatic than expected.) Also, as long as her fluid levels are good, she can stay unhooked during the day and just reattach at night. SUCH good news! Lunch was boring: only Fage yogurt and raspberries seemed to appeal to Ruby (it could be worse!), but she did eat a whole container.

After a short nap, Aunt Ju-ju came to visit and brought Ruby a few new distractions. Then we ate dinner (or rather turned our nose up at everything and begged for 'nack' (crackers) instead) and walked downstairs so I could buy a salad. Lehr brought the kids by for a quick visit: Ruby so loves seeing Eli and Maddux! We walked out to the fountain again since Ruby loved it so much this morning. Bedtime was quick and easy (except for the oral meds) tonight as this girl was tuckered out!

Last night was our seventh night in the hospital. The seventh night that our family has been split up so drastically. The seventh night that Ruby has been hooked up to fluids. Seven down, 15 to go. We are waiting patiently.....

Chemo Free!

Lehr stayed with Ruby last night so that I could go to a worship service at our church with Eli and Maddux. They got to sing in a children's choir...this may have been their first time? As expected, Eli followed directions at rehearsal and stood still on stage. That boy is showing me maturity so much more these days...sometimes I don't even recognize him!

Maddux....well, she made it through. Once again, my girl struggles to not get pulled into less responsible choices. After the night was over and she and I were discussing one area during the service that she was struggling (chatting and being a distraction during the part of the service that she was not on stage), she told me, "But I didn't want to sit next to them" (referring to the girls she chose to sit with, which are friends - meaning a constant temptation for Maddux). I reminded her that she actually begged me to be able to sit with them, even though I reminded her that it may not be a good choice. In the end we had a good talk about the best decision is often the one you make before you're in a position to make the good or bad decisions we usually think of. (AKA - Don't put yourself in the position in the first place!)

Ruby had a good night and woke up with an appetite. Lehr said she ate bowls (bowlS) of cereal for breakfast and then the two of them went on a few walks away from the Aflac unit. (Now that she's off of chemo, she can leave the immediate area!) Ruby had a good lunch as well, followed by a killer nap. I switched out with him just before 4PM. Ruby woke up a little groggy and snuggly, but after dinner (not such a good success rate), she pepped up.

After dinner we were playing on the floor with puzzles when I noticed a pile of water. Upon further inspection, Ruby's IV had come unhooked. I have no idea how it happened since we were just sitting (compared to all of the times I've stressed about it happening when she's rolling around in bed or running away for the two seconds I put her feet to the ground!). It was no problem; the nurse came in and said she'd re-run a line in a few minutes. As soon as she was out of the door I got Ruby up and had her walk and 'jump' and do all of the things I haven't let her do all week. It felt like a breath of fresh air for 4-5 minutes!

Once we were hooked up again, I took her across the hall to the kids' playroom on our floor. She and I stacked blocks and played with Mr. Potato Head for about an hour before coming back and getting dressed for bed. The nurse came in to get her vitals just before 8 and I asked about the evening's oral meds. NONE!! The only one she may need is Zofran, but we are going to just wait and see if she needs it. YAY!!

I Don't Know How You Do It

2 Corinthians 9:8  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 work.

Before I had Ruby, I said it all of the time: "I don't know how he/she does it." I said it when I saw a parent of a special needs child, I said it when I heard about a spouse with a terminal diagnosis, I said it whenever there was a situation that sounded too hard for me to handle.

Then Ruby came along. And in the hospital that first night (and likely the second), I still said it to myself: "I don't know how to do this. I can't do this. It's not who I am."

Over two years later, people say it to Lehr and I still...sometimes with their words, but often by what they don't say. They say it because it seems like we've figured it out (whatever it is). I don't find this offensive, because I still say or think it when I hear about someone else facing something that scares me. But what I have learned, through Down syndrome and now Leukemia, is that the whole "God doesn't give you anything you can't handle" saying is true.

And false.

It's true that sometimes God puts us on a path that puts us outside of our comfort zone to help grow us. Most people over the age of 30 can look back and see examples of that throughout our lives. Things that we thought we wanted, only to realize it was to our detriment. Things we didn't want only to realize how necessary it was.

But stuff happens in life that challenges us, stuff that is hard, stuff that's 'not fair', even stuff that's not at all of God. I don't think the hard stuff, or even the bad stuff, is always intentionally given to us. I don't think God gives us everything that happens on earth. (But I do know He makes everything work for His glory. I do know He can take the scary stuff and use it in amazing ways.)

And then there is the part of that saying: "...you can't handle". That part is wrong, regardless of if your current situation is of God or not. None of us can handle anything, even the good stuff, on our own. We just can't; we will mess it up because we're human.

I think the more common saying should be "Nothing happens on this earth that God can't handle", because that is something I can say and mean. When people say "I don't know how you do it" to me now, I want to tell them that anyone could do it. Anyone could face anything. Seriously. What we are going through with Ruby is scary on top of scary...two diagnoses that shook me to my core before they happened to me. But we're not scared....not really. Not the way I am when I hear about something happening to someone else. And trust me when I say that my lack of real fear is not because I somehow 'know' how to do this. It's because He does and He is walking us through. One day at a time, baby.

Sunday

Psalm 130:5   I wait for the LORD, my soul does wait, and in His word do I hope.

Last night's sleep was a little interrupted: Ruby's IV bag ran out at 3AM and caused the alarms to go off, which woke us both up. I finally got her down to sleep again by 4....just in time for the 4AM vitals and blood draw. She normally sleeps through that, but she was not deep into her sleep again, so it was close to 5 before either of us saw any more sleep. The good news is, she slept until after 7AM.

Today was more books, more blocks, more speech therapy (I've got nothing but time!), and more oral meds. That part just sucks. Ruby has had to take several medicines (chemo, Zofran, Bactrim...) orally each day. Sometimes it's twice a day, but today was three times. In the beginning, it was mildly bothersome to her, but we are at the point now that she sees the nurse with the oral syringe and starts crying and says 'nooo'. Yup....I get to hold her down while the meds are given to her. That is always fun. I really really really don't like that part.

Ruby drank a bunch more water today than she has been. She ate plenty of calories too, though she is still struggling to enjoy the same foods she used to. Today's success included peanut butter, crackers, mashed potatoes, a little bit of meatloaf, and raspberries.

5PM marked the end of Ruby's IV chemo for this round...hip hip hooray!! She will still have blood draws each morning so we can watch her counts; her white blood cell count should drop over the next week, bottoming out on day 10 (from the beginning of chemo). So she has one less thing she is hooked up to, but unfortunately she is still hooked up to a tube. Ruby will receive fluids through the night and then 'more', as the doctor put it today. I think that means the same thing as 'we'll see'. I will be pushing for her to have some time off of the IV over the next few days. I know she needs it and it will make her feel better, but my girl needs to walk. She needs to explore. She needs to play without me telling her 'no no...don't move too fast/too far/too high/too low'.

This last week has not been as hard as I imagined, mainly because Ruby is still healthy. Her appetite is odd, and she has had a few more naps than usual (and then there is the roid-rage), but in general she is still the same. The hardest part has been the anxiety over her chemo and IV lines. She is hooked up via her port and I'm constantly stressing out over her pulling too far away from it or rolling one too many times in bed, or doing anything that could compromise the port or her bag of chemo. Something as simple as me brushing my teeth requires me to put her inside of her crib and try to coax her to just sit still because if she jumps around or moves around, the tubes get all tangled and short.

Lehr is with Ruby tonight and will be most of tomorrow. That girl loves her Daddy, and as not ideal as the circumstances are, I am so grateful for this one-on-one time they are getting. I am with Ruby so much during the week when the kids are at school, and during therapy and at Gigi's, but Lehr doesn't get to hang out with just her that often. That has been a gift, for sure.

Boring

 Acts 24:3   In every way and everywhere we accept this with all gratitude. 

Today was fairly uneventful, and we are so grateful for that! Last night Lehr and I tagged off so that I could be home with the big kids and he could hang with Ruby. The two of them had a guest, played hard, and finally got to bed around 9PM. Lehr even said that she took her evening oral meds without too much fuss.

This morning Ruby showed Lehr how much she does NOT enjoy the oral doses of chemo, Zofran and something else (I think it's an antibiotic right now). Vitals have been good all day.....one change in blood pressure for a minute, but no real cause for concern. Lunch was a milkshake and spoonfuls of peanut butter. (Did I mention that Daddy was in charge?) After a nap, Maddux and I came to the hospital and Lehr and I switched out again.

While Maddux was here, she gave the nurse (one that Lehr and I both like a lot) a thank you card and a bag of candy to share with the others. She also got additional beads for the Beads of Courage that she and I started for Ruby earlier today. Love that girl (even when she frustrates me to no end).

Ruby is definitely showing signs of irritation/outbursts which are likely due to the steroid component of her treatment. She will be fine and playing or eating one moment and then get very snippy and aggressively push you away the next (which is very unlike her). She ate an ok dinner with some variety (banana, squeeze food veggies, mac n cheese, water), and then she and I played until it was oral-chemo time again.

Eating has been a challenge, which we expected since patients often lose their appetite while on chemo. I have stocked up on the pureed veggie squeeze foods to start each meal with, just to make sure she's getting good vitamins. We can usually rely on some yogurt or crackers at each meal, but that's not going to keep her healthy through this, so baby food it is!

The oral meds are a problem..... I HATE how sad/mad she gets when it's time to take them. We seriously have to lie her back and hold her down; not fun! The good news is, tomorrow she has two more doses of the oral chemo and then she's done for this treatment. Oh yeah, and her last bag of chemo for this treatment was hung at 5PM so tonight is the LAST night she will have to sleep hooked up to all of that stuff!! I know she will likely need a line for fluids at some point(s) during the rest of her stay, but it will not be a 24/7 bag and it will only be ONE line instead of the three tubes she has now.

Today I am so grateful...grateful that Ruby's last bag is hanging, grateful that I got to spend almost 24 hours with Eli and Maddux, grateful that Ruby has an amazing dad that takes her out for more walks even though she's hooked up to stuff (and gets her milkshakes), grateful that God is growing me already through this so much that I feel at home in the hospital already (that's me 'swimming'!), grateful that this process, though only 5 days long so far, has not seemed so hard yet, thanks in big part to the many many friends who have jumped in and helped, grateful for the sweet times I've had with Ruby while in the hospital, grateful that we have a God that makes all things good...even cancer and chemo.

Smooth Sailing

Matthew 12:21 And His name will be the hope of all the world. 

Ruby slept well through the night; she didn't make a peep until 6:30 and even then, it was just her standing up in her crib. I picked her up and brought her to the chair to sit with me in the dark and she fell right back asleep as soon as her head hit my chest. She slept, even though her body was a bit restless, until about 8AM.

Ruby refused to eat anything except homemade protein bars for breakfast, but she was in good spirits otherwise. She definitely does not like taking oral meds right now, which is quite unfortunate because several times a day she has to take an anti-nausea, chemo and one other prescription. Those are not fun times.

We had less activity in the room, which meant we got less fatigued (only one shorter nap today). We did see the chaplain, a friend, and the doctors on rounds. Ruby's chest is sounding clear even though she has a little bit of congestion (sounds like she just needs to cough to clear her throat). No fevers so far and based on her blood work, if she did have a fever, it would likely be due to the chemo rather than infection. (That is good news.)

Just to make things interesting, as Ruby napped, I got a call from the school nurse and Eli was in there with a headache and 100 fever. He needed to be picked up. I was unable and Lehr was in a meeting, but of course our amazing friends jumped right on it and got him, brought him to their home(s) and gave him some Motrin. He was fine the rest of the night, but a little tired. Hoping it is allergies and nothing more serious.

Just before dinner, Lehr came to the hospital to let me go home and be with the kids for the night. As good as it felt to leave, it feels very strange to be home without both Lehr and Ruby. Her room looks so .....quiet. It was good to be home with Maddux and Eli. Friends delivered a DELISH dinner, and we discovered packages of TP, apples and oranges on our front porch. The acts of kindness fairy(s) visited us, I guess!!

Lehr said she was picky at dinner again, even turning down the ice cream he got for her. Her tastes are definitely changing, as is her love of strangers. As happy as she always is to see someone new, the constant barrage of nurses with meds for her is making her a bit clingy when they come in sometimes.

When I keep the door open in Ruby's room, and the few times I've walked around the halls on the Aflac unit, I get to see other kids fighting their own battles. Most are without hair and I can tell that this is not their first rodeo...they just have a different presence about them. They are sauntering down the hall, or playing games in their rooms filled with laughter, or riding around the unit in battery powered cars. Others are in the deep end of chemo fatigue and frailty. They are being pushed in wheelchairs, or pulled in wagons. Regardless of which category they are in, they all seem to have hope. God is here and His mighty work is being done. Because my time outside of the room has been so limited by Ruby's tubes and wires, I have not gotten to meet anyone, but I am anxious to hear how God is working in their lives.

Community

Psalms 133:1  How good and pleasant it is when God’s people live together in unity!

Seriously, I am grateful today more for what God is doing for my older kids than for what He is doing for Ruby today. (And He is very present in Ruby's moment!) Today is the third day that I have not seen my kids in person. The third day in a row that they have gotten off of the bus with a different family and stayed with that family through dinner at least until Lehr could get them and take them home to bed. Even though these three particular families are close friends who happen to be awesome parents and who also have great kids that Eli and Maddux love, three families in three days is a lot of change-up for the kids. But I swear to you that the kids could not be in better hands. They are loving the glimpse into other families' every day lives and dinner routines, and they are being loved loved loved. And when I get a text or a photo at 2:30 each afternoon, my heart swells. How good it is, indeed!!

This is the part that brings me to tears today; part mourning the everyday moments I'm missing with the big kids, part incredibly grateful for what they are receiving by spending time with others. They are going to mature so much through this process and that's both encouraging and scary at the same time. I received an email from one of Maddux's once/week teachers yesterday:  "...Maddux shared with me some recent health challenges for her baby sister....Maddux was very grown up when she told me. She was appreciative of the wonderful neighbors and most excited about her dinner opportunities with different friends..." I also heard from one of my friends that Maddux was a huge help cleaning up after dinner the other night (and with a smile!). So proud of her.

Today started with a bang for Ruby. Monitors indicated *something* with one of Ruby's two lines just before midnight and that resulted in her having to have a complete dressing change around her port site. So bright lights came on, two nurses and I suited up with gloves and medical masks and we went to work. I held Ruby's mask over her face and her hands while the two nurses worked amazingly fast and gentle to remove the large, very sticky adhesive protection layer covering almost half of Ruby's chest. Then they took off the immediate protection around the port and then cleaned for almost a minute. Then we needed to put fresh protection all back on. Ruby cried a little, but stayed so still and brave. Seriously, so brave. The nurses couldn't stop commenting on how awesome she did (they even brought her a new pair of sunglasses for her rock star bravery). By the time they left it was 12:30 and Ruby was awake. She cuddled with me in the chair though and nodded on and off for about an hour before she was asleep enough for me to put her back in her crib without fear of her tangling in her tubes.

This morning she slept through 4AM vitals and blood draw (one benefit of the port is she doesn't even notice when they pull her blood), and then she woke up at 6:30, cheerful and well rested. She and I played and ate breakfast, then she received some oral meds at 9AM. She was not happy with that; I think she was having a flashback to last night's drama. (Normally, she does quite well with meds through an oral syringe.) Somewhere around 10AM, she fell asleep and rocked a 90-minute deep-sleep nap. I did change Ruby into her own clothes....just because I wanted her to feel more at home. I am struggling to feel not scared about her disrupting the port lines; they definitely make me anxious about her every move.

We enjoyed lunch with Carissa, had a visit from a therapy dog (which Ruby LOVED), and got our port lines wrapped to our back. (Ruby tends to sleep on her stomach and I was getting worried about her playing with the lines in front.) Several visitors today included a family life specialist, a social worker (we may finally get approved for Katie Beckett!), her whole team during rounds, a family liaison, and Daddy.

Good news: Ruby will not have a bone marrow biopsy at Day 14, as originally planned. Her numbers are good enough for us to wait until Day 28 (which *should* be after we go home!). So far, Ruby is tolerating chemo well; she is still eating and playing. She is more fatigued, but only slightly. She is not drinking much at all, but with her still being on IV fluids, they are not concerned about that.

And today ended perfectly for Ruby; her whole family had dinner together in her room! Lehr and Eli's soccer practice was cancelled due to weather, so Lehr picked E & M up and brought them over here just in time for the family dinner on the Aflac floor. (Every Thursday night is a free catered meal for families staying in the hospital.) Ruby was SO excited to see her brother and sister! They ate, rode in the wagon (during which Ruby was beside herself with giggles) and played on the floor. For a moment, everything was just as it ever was.

Day 1

Be completely humble and gentle; be patient, bearing with one another in love. Ephesians 4:2

My God is working on my flexibility and patience. He knows that I have much room to grow in the area of not being in control and knowing exactly what is going on. The last 48 hours have been a base-level test for me :)

So 'today' started yesterday. We planned on a full day of pre-op appointments yesterday, culminating in her receiving platelets through an IV to get her numbers up prior to surgery, after which we would go home and enjoy one last sleep as a family under the same roof. However, around 5PM they told us that the blood bank did not have any of her type, so they were having to get some from elsewhere. This meant that she would have to be admitted to the hospital so they could administer the IV when the platelets arrived (likely early evening). Around 9PM they came and hooked her up to fluids since the platelets were still not there (coming from out of state). She fell asleep and slept as well as can be expected with the barrage of activity in and out of the room all night.

Somewhere around 5AM, the nurses came in and did more vitals and flushing of her IV, and then started her on her first round of platelets. They were able to push them in about 30 minutes; 15 minutes later they drew blood to test her levels. (If her levels were not high enough, we would have to do another round of platelets, but we did not have much - time before surgery or bagged platelets - to spare.) Her platelet numbers were high enough, so surgery was still on the schedule for the day. For some reason, they did come back an hour later and start to give more platelets, but then the bag started to leak, so they took it away. During that time, the nurse practitioner for the lumbar puncture visited us and assured us that her numbers were great and she wouldn't need any more platelets before surgery.

Surgery was scheduled for 11AM and they called us back just after that time. Unfortunately, it took another hour for the OR and surgeon to be ready, so Ruby had to hang tight a little longer. Once they took her back, the surgery took an hour, and she was back to us about two hours later, snoring, snuggling, and with a tube coming out of her chest. (The surgery was to place her port/central line. This is how she will receive most of her chemo and also how they will take blood for testing and administer fluids, as needed. While she was under they also performed a lumbar puncture/spinal tap. This was to pull some fluid from her spine to test for leukemia cells there and also to put the first dose of chemo for her spine and brain into her system.)

About an hour after Ruby got back to us, she woke up and returned to being Ruby quickly. She ate a TON and then an hour or so later started to fade again. This was a BIG day for her. At 5PM, chemo via IV was started. Around this time Ruby started to show some signs of pain when we moved around a little, but it helped to have all of her other IVs taken out (she had two others in place from earlier in the day). Ruby rallied until 7PM and then couldn't keep her eyes open another second.

We're in the deep end now. Somewhere around the beginning of the platelet appointment yesterday, this new world we would be living in started to lure me into the water. It's not all bad, but still scary if I let it be. My baby coming back to me with six tubes connected to her, including the tubes implanted in her chest, and the first round of chemo into her spine during surgery pulled us the rest of the way in.

I think part of the ominous feel of this part is the harsh reality that we are actively making her sick. Yesterday morning Ruby was running around, drinking her morning smoothie and getting into trouble all over the house. This last weekend, Ruby was digging in the garden and pushing herself on her bike in the driveway. She wasn't sick, she wasn't fatigued, she wasn't slowed down. The very potent drug that I am watching drip into her body while she sleeps will suck some of that life out of her as long as it's in her system. That is not an easy pill to swallow.

Good news came from the leukemia fellow we've seen most often during our journey. She came to visit us just before chemo started today. She said that since Ruby's level of leukemia cells in her bone marrow was low enough, she will not have to have the bone marrow biopsy normally planned for day 14 of this first treatment. (Typically that biopsy is done to determine if the leukemia is at a high enough level to warrant starting the second round of chemo early. Ruby's beginning level is already under that threshhold.)

We are continually showered with texts, phone calls, cards, prayers, meals, childcare for Eli & Maddux, posts on Facebook...the love is comforting and so appreciated. We are rich in community!

Washington DC Trip

For Eli's 10th birthday, Lehr and I gave him a weekend trip to DC. Instead of it being just Eli and Mommy though, we opted for the whole family to go, since we know the next six months will be a bit up in the air. Eli was thrilled, and Maddux was pretty excited too.

 

We landed in DC at 9AM Friday and left at 4PM Sunday, so the trip was short, but we managed to fit in as much as possible in that time. Lehr got us a hotel close enough to see the Washington Monument out of the window, and we walked and took the Metro everywhere. 

The first day we probably walked seven miles...we went to the Spy Museum, the Washington Monument, the White House area, and we walked the whole thing: no Metro. Ruby napped when she could in the stroller. After we grabbed dinner, the girls and I settled in for the night and Lehr and Eli went to rent City Bikes and see some monuments. This was very cool for our boy. He got to see Lincoln that night, and he read the Gettysburg Address.

The next morning we went to Ford Theater which was by far my favorite. We then walked and Metro-ed the rest of the day to hit a tour of the Capital and the Museum of Natural History. After dinner we followed the same protocol (after a quick dip in the pool), and Eli and Lehr hit the Jefferson Memorial.

The last day only left time for one thing, so Eli opted for the Air & Space Museum. The kids loved it! About halfway through, I took Ruby outside for a walk so she could nap, and I hopped into an art museum for a minute or two. There are so many amazing things to see and do in DC!

Eli was adamant about recording everything...he kept his journal with him and wrote a synopsis and/or review of everything we did. Love that boy!

The plane rides were uneventful. Ruby did fairly well; Lehr kept her quite entertained. On the way there, the pilot pulled Eli and Maddux into the cockpit as soon as they boarded the plane....so cool! And on the way home, one of the flight attendants gave me a goodie bag of food - she was tipped off from a friend of mine (who also works for Delta) that we would be on the flight. Amazing!

A Pause

I am still in a good place reagarding Ruby's diagnosis. Honest. But this post is about the pause that I need to take to be sad for a minute before continuing on the journey that God is walking us through. This is not the feel good post...this is the poor me post. The one that complains and struggles and can't stop the tears. This is the post about school.

When Ruby was first diagnosed with Leukemia, I realized that her treatment would interfere with school. It choked me up, but it was far enough away that I could still bury it. This week it has come out of hiding and it is a full reality. Today was Ruby's last day at school until who knows when. She could go back in a month, or she could go back after the holidays, or she could not return at all this year. Between the hospital stays and compromised immunity and not wanting to disrupt the class with her sudden return(s) randomly throughout the year, everything is up in the air.

School is a big deal for me. When Ruby was born we quickly learned about the delays and what we could likely expect from her regarding milestones. The gap(s) between her development and that of other children her age grows with time. When she was less than six months old, it wasn't noticeable, but by her first birthday it was starting to show. So we worked with her on everything we could to get her to keep that gap at a minimum. And because Ruby is a rockstar, she has exceeded expectations: she walked earlier than most kids like her do, she's very interested in learning new things, she's curious and social and easy to work with. So when I started looking for schools, I knew all I had to do was find one that would give her a chance because she would rise to their level.

Lots of phone calls and visits and emails exchanged with one school in particular last fall and spring before we finally committed. Then we met with the specific teachers twice before the school year started, to allow them to meet Ruby and ask any questions they had. I was heartbroken when Ruby then had to miss the first day, but she came back on the second day with a spring in her step and wowed everyone. The loved her and told me every chance they got how great she was doing.

Ruby has been to school a total of four times, but that girl loves it. She lights up when I say the word 'school' and she smiles when she sees her school bag. She waddles down the hall to her classroom, holding my hand and pointing to all of the cool things on the wall. Then when she gets there, she finds her picture and points to it before pointing to those of her friends. And to top it off, she says hi (sometimes) to her teacher and then walks confidently into the room without looking back. Ruby is learning routines and manners and social awareness and all of the things little people her age should be learning. And she loves it.

So when I think about how much I hate cancer, it's not because of the scary factor or the chemo side affects (which I'm sure I will hate soon enough). Right now my hatred of cancer is due to it robbing Ruby of experiencing this awesome class she was given to thrive in. Right now I'm furious with cancer because it is stealing from her the chance continue her start with other kids who, while not delayed like her, are starting something totally new also. Right now I'm mad at cancer because it is taking away a time where she was able to do something that had nothing to do with Down syndrome. Right now I'm grieving the window of opportunity we had by starting with full inclusion at a time when she was the same age as other typical kids, still operating at a similar level. Right now I can't complete a sentence about school without my voice cracking.

I just sat down with Ruby's teachers and told them the news. I was shaking the whole time, trying to hold back the tears. I succeeded until the very end when they told me how great she was doing in the class and how proud I would be of how well she's learning the routines. The minute they started talking about her in that environment, doing what I prayed she would be able to do for so long, I couldn't hold back the tears. Her teachers were amazing, ARE amazing, and I hope she returns to them soon.

Locker Room

We just had our final appointment with the Leukemia team before chemo starts. It very much felt like the last minute review of the plays before a big game. Or rather a whole season. The good news is, our Team Captain is the star quarterback with JC on his jersey.

The short version of our pregame talk in the locker room:

• Kids under age 4 with Ruby’s type of Leukemia are prescribed six cycles of chemo. Each cycle lasts 28 days, so ideally, we are done in six months. However, things that can stall her restarting every 28 days are infection, low blood counts, fever…. So there is a high probability of delay in this schedule at some point.
• The plan right now is for the chemo to start next Wednesday, but we are waiting on confirmation.
• Ruby will go in the day before chemo starts to receive platelets via IV and then come home. The morning of her chemo, she will be admitted to the hospital. She will be put under and then have surgery to place her port (in her chest), where she will receive her intravenous chemo throughout her entire treatment. While she is under they will do a lumbar puncture to administer chemo to that area and gather a sample of spinal fluid. Later that day they will start her first round of chemo which will go in through her port for 96 hours. She will also take chemo orally 2x/day for the first 4 days.
• The first round of chemo is monitored incredibly close for everything from allergic reactions to adequate tolerance to desired effectiveness. This monitoring includes many blood tests and another bone marrow biopsy, as well as many machines and nurses keeping very close watch over her.
• (Here's the doozy) Ruby will stay in the hospital for at least three weeks for the first round of chemo. She will have many other overnight stays, likely 2-5 days each, throughout her full treatment, but hopefully this will be the only long one.

So.... Go Team Ruby! Fight! Fight! Fight! We have the winning team, the best cheering section; we just need to stick to the plan and listen to the wise words of our Team Captain.

Staying Afloat

I don't want to focus on chemo or sickness or hospitals, so this is what I'm focusing on these days: swimming. Since swimming is not my forte - in fact, I often say that I never learned how to properly swim - it seems to parallel the journey we're on since I've never learned how to parent a child with leukemia.

If you've ever seen a 5-year old swim in their first swim meet, you've probably seen more splashing than forward movement. This is likely what I look like when I swim in open water; I'm way more worried about not sinking than propelling my body forward.

So while it's obvious that my body knows nothing about swimming, I do understand how it is supposed to work. I know that my body will float if I calm myself. I know that stretching my body out will allow my arms to pull my body through the water. I know that thrashing and kicking actually slows me down and exhausts me at the same time. I know that if I just use my arms and legs in the way a swim coach would guide me to, I will get to my destination safely and efficiently.

So I'm going to try to continue swimming. I feel like so far Lehr and I have been in the shallow end of the pool with God right next to us, holding us up if we dipped below the surface. But we are approaching the time when we will be swimming in deeper waters, without floaties. God will still be with us, guiding us with His words, but we will have to rely more on what He has taught us because so much else will be clouding our confidence. We will have to resist flailing our arms, we will have to resist fighting against the reality of the 'water', we will have to calm ourselves and allow God to lead us through.

Triathlon

Eli wanted to do a triathlon again this year. This would make #3: last year we missed it for some other event, but he was adamant about getting back to it. (Maddux opted out.) He even trained a few times, doing a full 100m swim, 2 mile bike and 1 mile run two weeks ago. (All by his own motivation.)

This morning's event was predicted to be a wet one with thunderstorms likely throughout the entire morning. When we arrived at 6AM, the skies were clear and they remained that way until Eli transitioned to the pool to start his race around 8:30. Sprinkles started during his bike and then drops fell through his run. The real fun started just as he crossed the finish line: thunder, lightning and hard rain poured on us for the next 30-40 minutes as we tried to find cover, then get his bike and gear out of the transition area before walking to our car across the highway. All of the while, Eli was smiling; he even said, "Hey, it's not like we can get any wetter!"

Eli did really well, passing several kids on the swim, keeping up with road bikes (he has a mountain bike) and passing several on the bike portion, and running just off of his fast pace for the final leg of the race. He didn't beat his best friend, but he definitely had a good race and he's already asking when his age qualifies him for longer distances.

Double Digits

Ten whole years. A decade. That's how long you've been giving us memories, Eli.

It feels like a whole lifetime ago, the years before you were born... They have been filled with fun and baseball and drums and wild hair and books and soccer and music and laughter and all sports and history and smiles. Mostly smiles. That is what everyone knows about you: you always have the biggest smile on your face!

This last year, your tenth year, has been another great one: you recently told me it was your best one yet! So I thought maybe we'd make a Top Ten List of the best parts of the last year.

1. Soccer: You played two more seasons, sharpening your skills and becoming a better aggressor on the field. 

 

2. History: You read anything about the Civil War you can get your hands on and you love listening to podcasts about all areas of history. At the end of the school year last year, you won a poster contest for your poster about Benjamin Franklin, which sent your poster to the state level. You went back to the Atlanta History Center for a camp this summer, and you've told me a few times that you may want to be a historian one day. 

3. Ruby: You are a great big brother to her, always thinking about her, playing with her, and supporting her with your Team Ruby shirt at school. 

4. Winshape: You and Drew went back to Winshape camp this summer and you enjoyed five days and nights away from home; can't believe how grown up you are.

5. Golf: As expected, once the Masters rolled around, your interest in golf was rekindled and you watched as much as we'd allow. You even created a golf course in our  front and back yard. You, Grandpa Jim, and some of your friends played it for over a week.

6. Running: You ran your first official 5K this year: you, Ruby and I completed the Gigi's 5K on World Down Syndrome Day. You were steady on the course and you ran the entire thing, even through some really tough hills! 

 

7. Maturity: So many ways you have shown your maturity this year, Eli. You bring home assignments from school and complete them all on your own with minimal help from us (your safety unit, your Ben Franklin poster, etc.). Your interest in your sister, Ruby, and her cause is showing in your interaction with others. You stood up in front of your entire class and talked about her and Down syndrome and then asked them all to participate in WDSD this year. Amazing. 

 

8. Swim: You continue to love the summer swim season. Your favorite event is the one all other kids dread, and you smile through every practice and swim meet. 

 

9. Boundaries: You've earned some freedom with your responsibility in the areas of where you can go without us and how long you can stay. One freedom you seem to love is the ability to ride your (bigger) bike all around the neighborhood, checking in via walkie talkie every once in a while. 

10. Innocence: Sorry, but even as grown up as you seem at times, you are still amazingly innocent when it comes to so many things. (In a very good way!) I love that you still play with legos, and that I find you in your room setting up army men for hours. It warms my heart when you ask for family movie night or a date with mom or dad. From your movie selections to the way you play with your sisters and friends, you are still an amazing kid, and I'm so grateful for that.

The Calm Before The Storm

Just four days after Ruby's bone marrow biopsy the first level results came back, confirming the presence of Leukemia in her bone marrow. Even though we expected this, getting these results was a necessary step in the process of confirming her diagnosis.

Speaking of diagnosis, her official one is AML/M7 (Acute Megakaryoblastic Leukemia/M7 Acute Myeloid Leukemia). I can go into a Google explanation for you, but since I only understand half of what I've read, I'll let you do your own research and I'll fill you in after we've had the sit down with the doctor to go over everything in detail. We will meet with Ruby’s 'team’ of doctors next week to go over all questions/concerns we have and discuss the plan for treatment. Assuming we have no new developments between now and then, she will start chemo in two weeks and she is estimated to undergo this treatment for six months.

Good News:

• God is good. Again and again…can’t say it enough. 
• Ruby is still well: she's showing no physical symptoms (fever, bleeding, paleness, lethargy).
• AML is the most common type of Leukemia for kids with Down syndrome. (That means this team of doctors has a lot of experience with it.)
• Ruby will have a low-dose chemo treatment plan, as that has proven to be the most effective with this type of Leukemia. 
• Ruby’s blood work, outside of her low platelets, looks good. Even the level of Leukemia in her marrow is low enough to allow for the doctors to allow a little more time for full test results to come back before starting treatment.
  
• Kids, especially with Down syndrome, tend to respond very well to this treatment and have a high rate of remission.

As crazy as it seems (at least to me), Lehr and I have remained calm throughout this process, including the news yesterday. Maybe God is allowing us to save our strength and worry for when we will need it, as the diagnosis is only the beginning of this journey. Maybe He has used Ruby's first diagnosis to grow us to handle this type of thing in stride. Or maybe we are just trusting God because it's all we can do.

First Day

Ruby started school this morning.

Cannot tell you how cool it is to see that sentence in print!

Starting late last fall I researched and read up on local preschool programs that might take Ruby once she turned two years old. The one I landed on is inexperienced in children with T21, but they were/are very open to including her in their regular classroom. I met with the director last winter, then Ruby and I met with her early in the spring before signing on for a 2 day/week program this fall.

Two weeks ago Ruby and I met with her teachers to answer any questions and let them meet Ruby, then last week we attended the formal Meet-n-Greet with the other kids. Last week's official first day was a no-go for Ruby due to pre-op appointments. But today, oh today, she went into a room with nine other kids (all typical as far as I know) and rocked it. I helped her hang up her bag outside of the classroom, right after we put her cup and diaper in the appropriate bins. Then she walked into the room all by herself (teacher preferred method). It was all I could do to not stay and peek in all morning, but I knew she would be fine. Three short hours later I came back and walked down the hall to find one of the teachers at the door, releasing kids as their parents approached. Before I knew what was happening, Ruby walked right over to me. The teacher said she did great.

Could not be more proud. Could not be more excited. Could not be more hopeful for what this means for Ruby and inclusion in general.

So What's Up?

So here we are again. Another (almost) diagnosis, but two years more experienced and (hopefully) wiser.

Each year Ruby has a full panel of blood work done. It's one of the many things that is just standard protocol for kids with Down syndrome to help detect anything from celiac disease to ITP (don't even ask me to define it, let alone spell it). After Ruby's tests earlier this summer, one of her nurses called us to schedule a re-test. 

Fast forward to the day of the retest: the nurse came in and told me they needed to run the platelet count again, so she pricked Ruby's finger to draw some blood. Ruby flinched only slightly and then we waited patiently while the blood took a while to pull into the small vile. She put a quick band-aid on Ruby's finger and told me that the test would only take about ten minutes, so she'd be right back with the results. When the nurse walked back in, it was obvious that she never hit it big at Vegas. She quickly told me that our Doctor was not in yet, but that she'd give me a call when she arrived to give me the results. Ruby and I walked out (waving like we were on the red carpet the whole way...they treat her like a celebrity there), and drove to speech therapy.

That drive is about 40 minutes long. Enough time for me to float around in my head a little bit, especially because Ruby was busy reading books. My 'spidey sense', as Lehr calls it, was already honed in on Leukemia. We've had a full CBC and other blood work run twice before for Ruby, but everything has always come back clean. However, one of the things that I've been trained to worry about with Ruby is childhood Leukemia, so pair that with the low platelet count and the wheels were already starting to turn for me. I honestly put it out of my mind during speech; I didn't even bring my phone into the office with me. But when we returned to the car, I was greeted with a voice mail from our pediatrician saying we should expect a call from a hematologist to schedule an appointment.

This is when it became a reality for me. This wasn't my overprotective mind running away with some random symptom....we were going to see a hematologist and oncologist.

The crazy thing is, the very first emotion that washed over me was gratitude. Immense and overwhelming gratitude. For Ruby, for the last two years, for her first steps, for her laugh, for living in Atlanta with doctors that help me remember how to be proactive, for her relationship with her siblings, for her work ethic, for her crooked smile, for the many hours I've been able to spend doing therapy with her, for her joy touching everyone we know. It wasn't a bittersweet gratitude, or a weird preemptive celebration of a life lost....it was pure gratitude just because. I know without a doubt that it was not because I am a strong person or someone who always finds the positive in things either; that was the Holy Spirit in that moment putting blinders on me and pointing me directly at what I should focus on.

There have been tears though, even some within an hour of that reality, but not many. Not nearly as many as I had in the first 48 after Ruby was born. That's another gift Ruby has given me: the ability to process things quickly and get to the 'now what' stage quickly. It's like she has taught us that things are not always as they seem, but even when they get hard (as we know they will), dance your way through it because it's coming regardless.

So where are we now.... We met with the hematologist (two, actually), and they took more blood. Then they ran a quick test AND did a smear to look at some of the actual cells under a microscope. We stayed at the office while they did that, so before we left, they could discuss the results with us. Ruby's platelet count and white blood cell counts were low still, and the doctor did see some concerning things in the actual cells. The next step was to send the blood to another expert to do another smear (that would be the fourth time Ruby's blood was looked at by at least four sets of medical professional eyes within a month). We received those results the next afternoon. The smear did, in fact, show Leukemia cells. Ruby will have a bone marrow biopsy next week to determine the architecture of the cells (?) and to get an official diagnosis and plan for treatment.

Where is the good news?

• Ruby is a rockstar who defies the odds. Duh. 
• She isn't sick at all...this is all coming about because of standard blood tests; she has shown no other symptoms so far. 
• While kids with T21 may be more likely to get leukemia, they also respond very well to treatment.
• The percentage of cells that Ruby has showing the leukemia is low. Not low enough to ignore, but still low.

Finally, the best news of all. God is good. I mean that wholeheartedly. Lehr and I have been very at peace through this whole thing. Even in my moments of weakness, I have never felt despair or like I was alone. My moments of weakness have come from the place of grieving my expectation. A mid-life issue of 'entitlement', if you will. ("But she's supposed to go to preschool this fall and skyrocket to the head of her class", "But I didn't have chemo on my schedule for September". "But this wasn't part of my plan").

God is walking us through this and I know He has great plans for this next stage.We sent this information out to our amazing friends, family, and prayer warriors and Lehr put it best:

We are all in a good place and know a few things. 1) God is good. No resentment, anger, or 'why us' here. 2) Ruby only knows one gear: and that's to kick ass and she plans to keep doing just that. Her words not mine. 

 

First Day of School

The kids love summer, but they love school as well. They didn't talk too much about it until our Meet-n-Greet last week. From that point on, Eli and Maddux have been very excited/anxious to return. Maddux was assigned the same teacher Eli had for 3rd Grade and Eli was placed with a teacher that I think will be a great fit for him.

Our first day at the bus stop picture has changed so much over the last few years, but this one is at the max: next year we will start to lose our elementary friends, starting with Eli.