On the Rockies road again…

We rolled out of family camp at Horn Creek this morning and are on the road again. I think Scott likes my family camp idea (my idea 5 years ago because my childhood best friend, Jamie, has been going as long as I can remember…) just because it’s a good reason to drive. I also think he takes advantage of my complete-geographical-ignorance-and-confusion despite being in Colorado dozens of times. He always picks the scenic route I am pretty sure sometimes we go out of the way so he can burn more gas and get more views and feed his wanderlust. It used to annoy me (and truthfully on any given day that’s still possible…) but there’s something about the wide open spaces and big mountains and fresh air and blue skies that breathe life into my man’s soul. And, for that, I am grateful. We sometimes bicker because he can’t stand for me to read or text because he wants me to share in every new view and gets fussy if I miss one and I just want him to quit interrupting because ‘hello, can’t a girl just read a book?!’ Apparently not…

Family camp was super fun and restful and good times with our family (including my mom this year…), our friends from home (Jamie’s big family and the Dawkins and the Mattlages) plus our Horn Creek ‘family’ from Kansas and Missouri and lots of other places. Really special people and a really special week and every year we are more sad to leave. I asked Lincoln what his favorite part of the week was and he said ‘everything…’ I thought that was lame so I tried again, ‘what was most special about the week…?’ And he replied with ‘being with my friends.’ Everything is better together! Love him. Some of the ‘everything’ was trying to trap chipmunks, building forts, playing in the creek, fishing, hiking, tennis baseball, rock climbing, train ride through the gorge, volleyball (he thinks he ‘played’ because we congratulated his ‘dig’ every time he threw his full body into the sand face first…) and lots of early mornings and late nights with constant companions of all ages.

Here are some pics with the people that, as Lincoln said, made everything special…

… family pic after hiking at Garden of the gods

  

…Building a fort with friends


… hiking with tired (and heavy!) little people

 
 

…Mama and me

  

…water slides with Hunter

  

…hangin’ with my peeps at Kraus cabin

  

… great views and great friends

  

…sweaty and tired and happy after tennis baseball

  

…precious and fun friends

  

…our menfolk

  

…train ride with ‘my big friends’

  

…playing in the stream

  

…whip cream and chocolate and pancakes and friends

  

…we love Norm and Beth!

  

… rock climbing w my ‘bestest girl’ EmmyKate

 
Thanks for letting me spam you with photos! Pretty cute huh? Everyone looks better and happier in Colorado with people they love.

One night during our standing spades challenges, I found a lump in my neck. It’s nice to have doctors for friends and Trevor confirmed what I expected – we both think it’s an enlarged lymph node. I texted Dr Osborne and we’ve now added the neck to our nex CT scan that they have scheduled for Aug 5. Have I mentioned that I love my doctor? On Friday, she was also emailing our very respected (and unrelated) Dr. Osborne in Houston with all the scan info and treatment responses the last few months so that they could review my case together and decide the next course of treatment. Also so thankful for Dr. Osborne and his team and their interest and help!

Our next stop: camping! Like real camping with tents and campfires and a 4 year old.  I vascillate between nervous and excited for the adventure. Definitely not my idea. But Scott has deferred to me the last few years and we’ve visited our camping friends but never spent the night … Until tonight! I can do anything for 48 hours right?! And I am a little torn because if it goes really well Scott will want to do it again but I don’t really want to have a miserable 48 hours to convince him otherwise!

In middle of that last sentence Scott spotted a fox in a field. Love it. We also saw a ring tailed cat earlier this week and of course lots of deer. Still holding out for a bear! But maybe not while we are camping….?

Thanks for the prayers for refreshment and rest for our family. I haven’t had as much alone time with the Lord as I would enjoy but sure have enjoyed the good gifts of His creation and His people – they are precious reminders to our souls that He is big and capable and in control and takes cares of us and loves us!

O LORD, our Lord, your majestic name fills the earth! Your glory is higher than the heavens. You have taught children and infants to tell of your strength, silencing your enemies and all who oppose you. When I look at the night sky and see the work of your fingers— the moon and the stars you set in place— what are mere mortals that you should think about them, human beings that you should care for them? Yet you made them only a little lower than God and crowned them with glory and honor. You gave them charge of everything you made, putting all things under their authority— the flocks and the herds and all the wild animals, the birds in the sky, the fish in the sea, and everything that swims the ocean currents. O LORD, our Lord, your majestic name fills the earth! (‭Psalms‬ ‭8‬:‭1-9‬ NLT)

A little ditty about Jen and chemo…

Far less interesting than Jack and Diane but it will definitely be ‘little’ because I don’t feel so great tonight. I’m learning the pattern of these drugs…

Days 1-2: feel pretty good thanks to anti nausea and steroid IV drugs

Day 2-3: bones ache and tired girl (slept until 10:30 today and really thankful that little man was worn out from fun friends and play dates so he was curled up beside me sound asleep too…)

Day 3-4: little headache and little nausea and torn between wishing for throw up to put me out of my misery and totally hoping it never comes…

Right now I am on the couch headed to bed and hoping I don’t leave another throw up trail on the gorgeous rug in the backhouse (if you’ve been over to our new digs I know you just cringed!)

I only got one of the 2 drugs I normally get (gemzar and carboplatin) because of a concern about carboplatin so soon after the brain procedure. I am hoping that this means a little reprieve in side effects?

Also, in our doctors appointment on Monday, we learned that we are changing treatment courses again. She’s not liking the brain lesion and referred to my cancer as ‘clever’ in its ability to get around our intended roadblocks. She’s plotting and planning and partnering with Dr. Osborne in Houston to decide the next action steps. We leave for Colorado (our 5th year with friends and precious folks at Horn Creek and a second week at YoungLife camp at Crooked Creek with our dear friends the Manos’) and will be home on Aug 2nd for another round of this ‘cocktail’ on Aug 3rd plus another CT scan that week. So, we should have more information after Colorado. And between now and then I hope to send lots of smiling faces of our family enjoying each other, the mountains, and the beauty of our God.

Thanks for the ways you pray for us, love our little man with play dates and gifts, encourage us and walk alongside us.

Also, a sweet week finishing our Heaven study and to you ladies that joined us please know (again!) what a precious 7 weeks that was for me … My heart and head and soul are well prepared for many more years with you all or “being absent from the body and present with the Father” as Paul wrote. And if you’re a guy who couldn’t come or out of town or just curious, you can click here to listen to the discussions thanks to my dear friend Eraina!

Love!

Short…and sweet

Hi guys – this is Jamie again.  Jen asked me to update all of you who have been so kind to text, call and pray about her radio surgery which took place today.  The good news is that the procedure literally took about 8 minutes (SHORT) and she came out of the operating room looking like a rock star.  That is, if a rock star wears a mask like this.

IMG_5930

Seriously.  Don’t we love our Jen?  And even though we keep tossing around that it’s ‘only 8 minutes’, let’s be clear that 8 minutes might not feel so short if you are relegated to this position.

IMG_6801

And in this room.

IMG_6800

And even though Baylor has valet parking (so I heard), don’t let that fool you.  It’s still a hospital. And whether you are there for 8 minutes or 8 days, you usually don’t let the door hit you on the way out so to speak.

For those of you who like the short version (i.e. all the guys), all you need to know is the surgery was ‘uneventful’ and Jen will have a follow up MRI in 3 months to make sure the lesion hasn’t grown (best case scenario is that it has shrunk or even disappeared).

For those of you who like the longer version, let’s get to it.  (The teachers at FBA who taught Jen and me would confirm that neither of us is short on words, so this blog serves as the perfect outlet.  You can decide if that’s fortunate or unfortunate).

Jen’s posse arrived at Baylor close to 2:15 today (SWEET) and quickly moved outside the intended waiting room due to all of the stares from the other patients.  (It’s clear that Jen approaches cancer differently than most others and may be known to cackle loudly or smile excessively.)  Even (especially) prior to brain surgery.

We quickly discovered that our landing area had amazing light and we all started taking pictures with Jen.  (No wonder she owns that rock star persona).

IMG_5914

Jen & Sheila

IMG_5919

Jen & JuJu

IMG_5918

Jen & Jen

IMG_5916

Angela, me, Jen & Amy (the chemo crew)

IMG_5917

Jen & Scott

(Several other sweet friends were in attendance but showed up after the impromptu photography shoot.  Let’s just say I bet now they are glad they did.)

I was deathly afraid to look back into the original waiting room (just on the other side of us through the FULL GLASS PANES) to see how many patients were now staring at us for other reasons.

After about an hour and 45 minutes, they finally came out to get Jen for her procedure.  Sweet Ramona made sure to brief the obnoxious crowd group on what was about to happen.

IMG_5925

And poor Ramona didn’t know that she was about to fall victim to a good lighting scenario.

IMG_5926

Jen went back for surgery, where she just happened to meet the physicists who worked on the formula for her brain radiation.  I’d say these were pretty important people, and apparently Jen thought so too, so – shocker – she got her picture with them as well.

IMG_6804

Jen & Andre

IMG_6805

Jen & Dana

Unfortunately the basement doesn’t provide ideal lighting, but we are so grateful for these geniuses that we will overlook that.

Once the surgery was finished, Jen walked out with a huge smile on her face and a grateful heart (I didn’t actually confirm this, but I know her well enough to know this is probably the case).    We all prayed in a circle and thanked God for no complications and for the love of friends & family.  With each step on this path, gratitude is ever present.

Thank you again for all of your prayers and encouragement.  I know they are felt and appreciated by Jen, Scott & little Linc.

In closing, I will leave you with a verse that continues to come to mind throughout this journey.

“Let us hold unswervingly to the hope we profess, for he who promised is faithful.” Hebrews 10:23

Much love to you all,

Jamie (“B”)

IMG_5922

Surgery Schmurgery.

Yall. This may be brain surgery but let me assure that to the peeps involved (Dr Barnett and Dr Cheek and apparently some brainiac physicists who calculate laser beam ratios) it is Easy Street. It is so non invasive and non complicated that my mom asked (no lie…) if she could ‘push the button.’ The neurosurgeon, Dr. Barnett, maybe shouldn’t have mentioned that there was an ‘easy button’ and that’s pretty much the extent of their involvement on the day of the surgery?!? Before the big day, the doctors (neurosurgeon and radiation oncologist) put their smart heads together to decide what to do (angles and dosage) and then some big brained physicists do calculations to tell the equipment what to do and all that gets loaded into computer, double checked by Dr. Cheek (radiation oncologist) and then they ‘push the button’ which fires some stereotactic laser into my temple for about EIGHT MINUTES. Yes, all of this talk of “brain surgery” boils down to 8 minutes.  The equipment and technology and brains involved in this stuff is so cool. And our medical team is even cooler. After our appointment with Dr. Cheek yesterday (who also did the radiation to breast and neck in 2012) my mom sent me this text:

“Really thought of today’s appt with Dr. Cheek as another encouraging visit. It seems like the neurologist-radiologist-physicist team involved in the radio surgery piece of this are top notch, even if they do keep the physicists in the basement and we didn’t get to meet with him (or maybe it’s the her). :) And how TOTALLY AMAZING is it that sweet Dr. Osborne would call Dr. Cheek while she is on vacation to pave the way for quick treatment for you, and that Dr. Barnett and Dr. Cheek were on the phone together after hours last night about your treatment. Absolutely awesome.”

To say the least, we are thankful. And admire the heck out of all 3 of these doctors and some mysterious physicists in the basement named Dana and Andre.

Today I went in to be fit for the uber tight mask that will hold my head in place to make sure they get the right spot. I also got a CT of the brain that they will overlay on the MRI to even more precisely calculate location and look for any more areas of concern. These people be smart.

The procedure (kind of hard to call it surgery when it’s so easy breezy) is at 230 next Thursday. Of course there are some risks (internal bleeding, swelling, headache or damage to that area which controls speech … That could be bad news bears for this talker!) but none of the doctors expect any complications. And though the tumor is not immediately eradicated it will slowly die, Lord willing, over following weeks and I will get a follow up MRI in 3 months (and the rest of my life). But while we expect this will work, Dr Cheek also told me to expect to have more lesions – but to be encouraged that we can expect to be able to treat them the same way. If for some reason this is ineffective in the targeted area (less than 10% chance I think) then we will do traditional surgery but the lesion is near my skull and in temple area so should he relatively accessible for surgery if needed. It’s tempting to try to ‘milk’ the ‘brain surgery’ for a week’s rest and vacation and doing nothing but the truth is that Dr Cheek said ‘we will have you in and out in an hour or so and should be great for dinner or even a glass of wine that night…’ For reals?  Unfortunately, Jamie has decided she is my personal liver guardian and any reference to alcohol has her coughing and awkwardly saying ‘tumors in the liver’ under her breath. She makes a good Baptist:)

I for sure covet your continued prayers and even though the procedure is simple and doctors are genius we know that the Lord governs all and we trust Him above all. And we trust Him to work through all of the doctors and technology according to His will.

As Job said, ‘shall we accept good from the hand of the Lord and not the bad? … The Lord gives and the Lord takes away, blessed be the name of the Lord.’

We trust the One who numbered my days even before I was born, the One who loves me even more than the Mama who wanted to check the GPA and credentials of the physicists, the One who is not subject to statistics and the only One who is the Greatest Physician.

Little lesion and little surgery.

The quick update can be cut and paste from text to friends this afternoon (6.30) after met w neurosurgeon:

Wow. Dr Barnett was freakin amazing – smart and kind and engaged and patient. And offered me to call him or come to his home if needed anything?! Clearly smart and in the brain surgery world this is on the low difficulty scale w incredible technology. Meet w radiologist tomorrow and these 2 docs plus Osborne will confirm plan. Hopefully scheduled for next week. Truly grateful.

Tomorrow, 7.1, I meet w my radiologist from previous treatments, Dr Cheek, and then we will begin scheduling.

As noted above, I think this is very simple in the world of complex brain surgeries. And I think this combo of doctors is amazing and a blessing! I pulled the connections card late on Sat night when I realized the doctor that had been scheduled was in same practice with a doctor (Barnett). He goes to our church, did Matt Chandlers brain surgery, was the surgeon my friend Miriam worked for as his PA (and she adored and admired him!), and I know his wife. I texted her and asked if she would ask him about doing my surgery (or  ignore my text if that was awkward and I would then have just pretended I didn’t ask…). But she texted back real quickly offering to help and first thing Monday morning his office called with an appointment. Scott, Jamie and my mom were there and we all felt the same – wow. My mom summarized it by saying ‘I don’t think an appointment with a neurosurgeon could possibly have gone better.’ I agree.

The surgery is really just a fancy math equation by a super smart physicist  probably done in the bowels of Baylor and the doctors just show up and push the button. It has very few side effects and is very effective for tumors under 3cm (and mine is .9cm). It was wild to see my brain on the screen and we could clearly see the tumor (or ‘lesion’ in medical terms) as well as the skull fractures though I think chemo will continue as the course of action for tumor activity in the bones.

Despite being weird to even be in the waiting room of a neurosurgeon (and then funny to see people we know there!), it was as great as weird can be.

And this morning we had a really fun time studying Heaven with friends (and personally fun for me that my high school friends and old coworker from Andersen and old neighbor and college friend were all there!) and getting sooo excited about where I am headed and the joy of being reunited one day with those there that I love and those of you that will come a little later. I feel like the Lord is making me ever more grateful for salvation through Christ and ever more excited about seeing Him soon. But, until that  day, I really enjoy the sweet gifts of my family and friends and fellowship in Him. And understand these words from Paul more than ever:

“For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body. Convinced of this, I know that I will remain, and I will continue with all of you for your progress and joy in the faith.” Phil 1:21-25

Goodnight friends and families. You are a gift and a blessing and the reason I am happy to continue alongside you for our progress and joy in the faith.

PS Truly, any of you ladies of all ages are welcome to come to Northwest Bible at 930a on Tuesday mornings to discuss heaven with us. My friend Kay will lead next week’s discussion and then I will lead our last discussion on 7.14. Come one, come all.

New news…reality bites

Hey guys, this is Jamie (aka Aunt B, B, etc.).  I’ve been tasked with updating Jen’s blog again today.  Let me just start by saying you know the feeling you get when you have to follow someone completely awesome at something?  (Probably like how Brock Osweiler feels when he comes in for Peyton Manning during a Broncos game or like when Solange Knowles performs after Beyonce.)  Well, that’s me right now.  Jen is so amazing with words and following her feels a wee bit intimidating.   But here we go nonetheless.

Yesterday Jen started feeling nauseated, had a headache and started vomiting. Today, it started all over again and Aunt Liz and Gigi were quick to come to her aide.  This is typical behavior for Jen’s body after chemo, but she was unable to have chemo this week due to a low platelet count.  Because of that, she texted Dr. Osborne, who suggested she come in for an MRI to rule out anything going on in her brain.  I picked Jen up and we headed to the hospital around 9:45 to see nurse Christina who helped access her port.  We then made our way over to a different building to check in for MRI, where we were joined by Scott.  While Jen went back for her MRI, Scott and I walked over to join many of Jen’s close friends and mother who had already planned to meet at Baylor with the child life specialist that morning. (She will update you on that part later I’m sure – such a gift in so many ways).

Our instructions were to contact nurse Christina after the MRI to see if she had the results.  She had told us previously that she ordered the results to come back STAT.   Now listen, I’ve seen enough Grey’s Anatomy to know what that means.   However, that must only work on TV because this particular STAT allowed us enough time to eat a leisurely lunch with the group in the hospital cafe AND play a round of monopoly in the waiting room.  (Or maybe it just felt like that).  Christina even came out to the waiting room to let us know there was a glitch in the electronic transfer of the results.  She told us we could either stay there and wait it out, or go home and she would call Jen once she had the results.  Um…have you MET this crew?  We debated for a millisecond, planted firmly in our chairs, and decided to wait it out.

Eventually, Christina called for us, and the group (Scott, Jane, CC & Gigi) headed back to the exam room.  At that point, she let us know that the MRI show a ‘met’ (short for metastasis) in her brain.  The mood of the room suddenly changed and we all settled in to that place we don’t like to go.  I think it’s called reality.  Further explanation revealed that the ‘met’ was small (under a centimeter) and that there were also spots on her skull.  The skull spots weren’t too alarming because we already have the knowledge that cancer has spread to her bones. (And even though this was new information to us, it wasn’t as significant of a finding according to Christina.)  The ‘met’ in her brain, however, was a new character we didn’t want to introduce to this already sad story.  We don’t know, nor will we ever, if this ‘met’ is new or has been there awhile.  Up until this point, Jen’s brain hasn’t been scanned.  But what it confirms is that the cancer is spreading and will likely continue to surprise us in unexpected places.  Reality, does in fact, bite.

The next course of action will be for Jen to meet with a different doctor (who deals primarily with brains) on Wednesday to get scheduled for radio surgery.  From what I understand, this is radiation to eradicate the ‘met’, and will be an outpatient surgery.  It can last anywhere from 1-3 days total (meaning she may have to come several days in a row).  She will stay on the same chemo treatment for now, and will possibly have a scan sooner than anticipated to check the rest of her body (as of now, insurance only pays for a scan every 3 months and her last one was at the end of May).

As you might expect, Jen, in typical fashion, began seeing God’s goodness and provision immediately despite this setback.  She saw how the Lord allowed her to get sick, really sick, on the day her family & friends were already scheduled to meet at Baylor allowing some sweet fellowship while receiving difficult news.  She saw how he allowed her to get sick, really sick, despite the fact that she hadn’t even had chemo so her doctor’s wouldn’t dismiss it as just a side affect.  (Side note: they believe Jen may have a virus of some sort, but the nausea and vomiting are not necessarily related to the ‘met’).  She saw how he allowed connections with her friends & family to the child life specialist helping Linc and to the nurse coordinating the surgery.  In other words, she saw how He is in all of the details.  And she continues to acknowledge that at every turn.  It’s a beautiful thing to watch her share God’s sovereignty with every single person involved in this process without her even knowing that she’s doing it.  She loves the Lord and trusts Him with each step.  And even though that seems impossible given her circumstances, I’m here to tell you it’s consistent and it’s real.

In closing, I hope you understand that processing all of this, for me, requires some element of humor.  I would hate for you to mistake my somewhat cavalier prose above for lack of concern or understanding about the serious nature of what we are facing.  Jen and I are together a lot and can joke about even the most serious of things.  It’s how we do it.  It’s how we’ve always done it.  But I also really hope you understand that I love my friend with all of my heart and I wouldn’t wish this journey on anyone.  It’s been the most excruciating thing to watch someone I love being poked and prodded all of the time and land in countless exam rooms never knowing what she’s going to hear from the doctor.  But this is where we are.  And this is where she is.  And I rest assured knowing that our Lord and Savior has a master plan that will eventually bring glory to His name.

Jen just texted and asked that I share this verse in my post, which I found extremely appropriate to my aforementioned point about Jen. (Also, she likes to have the last word, so this proves THAT point. Thanks Beyonce.)

“We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure.  This makes it clear that our great power is from God, not from ourselves.  We are pressed on every side by troubles, but we are not crushed.  We are perplexed, but not driven to despair.  We are hunted down, but never abandoned by God.  We get knocked down, but we are not destroyed.  Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies.”  I Corinthians 4:7-10

Thank you for your continued prayers and support.

Much love,

B

Twists and turns…

As soon as you think you understand the program, you realize you don’t. With the change to every other week I presumed that my blood levels would bounce back and we would have chemotherapy as scheduled. Thought wrong. Today, my high school friends and I were joined by a dear friend and old neighbor named Julie Bell – she and I discussed that cancer regularly  bursts the bubble of the “allusion of control.” That is true again today. I took labs and felt fine and waited for results in the chemo waiting room…

Standard protocol is that you get labs done and they wait for results and once the doctor clears you for chemo they mix your drugs. So it’s usually an hour or so wait between labs and chemo. It’s never good when the nurse comes to talk to you instead of just calling you back. When we heard my name called I jumped up to go in and I am pretty sure the girls and I let out an audible sigh when the nurse walked towards us instead of waiting for me to come back.
She ‘gave me the good news first’ that I would proceed with a bone strengthening infusion (once a month since bones weakened by cancer) BUT I wouldn’t have chemotherapy because my platelets were too low. Since me and my friends now think we are doctors, Jamie replied with … ‘So can she have a shot?’ but no-go because today it was my platelets that were too low (need to be 100 but were 46) and there is nothing they can do to elevate platelets. 

And, I am kind of reading between the lines since I didn’t see my doctor today, but since she was pushing it to give me chemo two weeks ago when my platelets were at 92, I am presuming that it wasn’t worth rescheduling because it is unlikely they would rise 60 points in the near future. So, we will try again on my next scheduled chemo date – June 13th. And I got hints today that she is considering modifying my regimen because it seems that the side effects are a high risk. She may just lower one of the drugs or maybe try something else? They also mentioned waiting until my next scan (end of August) before changing the course of action. So, yet again, a holding pattern until the 13th. When I sent the chemo news to Scott today he replied with ‘this can’t be ideal.’ And I think that sums it up – in a much more concise way than I just did!

While all this was happening on the 3rd floor, Lincoln was with his Aunt CC who took him to meet with the child life specialist again – he jumped right in to playing with her which is really sweet. She’s a friend from Bible study years ago and a blessing that she is now paid (and free to us) to help families through hard seasons like ours.  And that she knows Jesus!

After he finished with Emily, he came up to wait on Mama to finish chemo – and had a little lovins with his Aunt B.  And ‘Nothing’ (as he named his lovey/dog).This Friday, he will meet again with the child life specialist – and a few of his friends. We are realizing that he’s not the only one that has questions and it’s sometimes hard for moms to know how to handle the little one with their questions about ‘Lulu’ (carryover from Lewis…). Emily is going to meet with my friends and our littles to help us all process and communicate effectively. There are so many days when I think this is entirely lost on Lincoln. And then there are other days, like today, when I realize he knows more than I give him credit for. As he got on the elevator to come up and wait for me, Aunt CC said he greeted another woman by saying “my mom has cancer…”  She replied with, “… Well that makes two of us.” His little quips crack me up. Love him. And so thankful for the tender spot he has in many of your hearts that prompt prayers for his security and well being. We are grateful.

Love…

Good News. Bad Mom.

Since you read this blog to share in our cancer journey (rather than my parenting!) I will start in order of priority for you. Even though, thankfully, I am much more attune to the latter than the former. 

Cancer is now our normal and as my chemo schedule changes to every other week I am finding a rhythm that makes this normal more manageable. My body is able to recover between infusions and my platelets, white bloods cells and neutrophils are able to bounce back without the shots that have us playing the schedule guessing game related to when we will have chemo (or not). So I am thankful for this new schedule and more predictable blood work. And, in today’s pre-chemo blood work, Dr. Osborne was excited to report that my tumor markers in the liver are stable or declining. And, my completely inflated and off-balance boob is back to ‘normal’ … This is all super encouraging news that the chemo is working! It’s taking a hit on some other things (potassium, iron, magnesium and today my blood pressure was 165/40😁) so we are managing side effects while thankful for medicine and doctors that the Lord uses to sustain my life as long as He ordains.
And in an effort to prepare my heart for the expected likely abrupt end (prognosis is average of 26 months from stage 4 diagnosis – December 2014 for us) of my earthly life, I have been studying Heaven with a few dozen women this summer. If you are in Dallas and want to join me, come on! It’s super fun and encouraging for this life and the next! My friend Kay and I alternate leading and we meet for 7 weeks at Northwest Bible from 930-11 on Tu. you are all welcome – unless you’re a man:) Can email my friend Eraina at neighborhoodstudies@gmail.com for the book info and electronic copy of the study guide. 

And, on the family front, some girlfriends and I took our kiddos to my friend Lezleys’ parent’s lake house last week. Linc loves having his friends and swimming all day and snacking on Cheetos puffs (see below) and I like my friends and being at the pool all day too (minus the puffs!) so it’s a win win.

However, some times I get really mean and demand that he eat protein or can’t have candy for breakfast or help clean up. And his response to one of these was a very loud announcement that ‘you are not even the best mom in the whole world…’ Really?! I think I know that but thanks for reminding me with your grateful heart. And if that wasn’t insulting enough for a 4 year old he followed that by saying, ‘even though you think you are!’ What?!?! Look, little man and ‘threenager’ (who needs to get the memo that he’s 4 since I’ve heard it’s better and need him to play along!), I may be foolishly arrogant about some things but it ain’t my parenting. I replied with all the sincerity I have to say ‘you’re right, I am not the best mom in the whole wide world.’ And tried not to die laughing. 
So, little man, when and if you ever read this, I hope it makes you laugh too. And I hope you have learned to accept the Lords sovereignty to give you ‘not even the best mom in the whole world.’ But for my many failings I can assure you that I love you and adore you and delight in you. Even when it’s not always mutual.

And while I wrap up in the chemo chair, he is with his Aunt CC and a friend Amanda who asked me if she could take him to ‘Build a Bear’ and make a bear with recordings of messages from me embedded in his little friend. How precious is that? And this …?  

It’s good to be loved. At 4 and at 43! Thanks for loving our family, friends.

On your 4th birthday…

Little man, you are such a gift. You are personable, friendly, animated, love to fish, love all animals, spirited, opinionated, make us laugh, and ask a million questions. And even when you are also strong-willed, independence-seeking, goofy, impatient, and living through a hard season, you are still a gift. 

Tonight, when we arrived home in seperate cars you greeted me at the car by saying ‘I want to tell you a secret’ and your cute little bossy self (wonder where you got that?) wanted me on the sidewalk where you could whisper so close to my ear that I couldn’t understand a word of it. Upon repeat, you let me know that ‘Daddy said I will be four tonight’! Since I was thinking it was your ‘birthday eve’ this was lost on me until you explained that while you were asleep you would be 4 (and later told Gigi that you would be 6 … Not sure how that math works!). Yes you will, young man, yes you will. And you were so cute and so proud of yourself. We are too. We are proud to be your parents and honored to celebrate your big day.

So, as your Mama awakes in one of her sleepless nights it occurs to me that you are now 4! Neither you or your daddy are awake to enjoy it but I think the Lord awoke me to pray. And, as I began to pray for you He prompted me to write. [Short intermission for a throw up break but your little stool came in handy while I sat by the potty.] 

I plan to do a video or two for you but find myself so awkward behind the camera that writing just seems easier. I committed to your dad that I would do a video by your birthday but I haven’t. Son, I will. Lord willing. And, Kurt, you can ask me about it again:)

On your 4th birthday, and for as many birthdays as I celebrate with you, I desperately want you to know a few things. Some of these are things I’ve learned the easy way and some the hard way – but all by my Saviors grace. And these would be the greatest gifts I could ever give you (which is a good thing since I realized tonight that your dad and I are giving you a party but don’t actually have a ‘gift’ for you…)…

– an understanding of how high and wide and how deep is the love of Christ for you. I pray that you will be overcome by His love for you … A love that does not need to be repaid or returned even if you could … A love that changes everything.

– out of that love I pray that you would know the great joy and fullness of life that comes from loving others. Living for yourself and your own plans and purposes will be a shallow and boring and less fulfilling life than a life where your eyes and hands and heart are oriented toward others.

– a love for His Word. It has been the greatest friend, teacher, counselor, comforter, guide, and gift to help me grow in a love for God and His people. I pray you will read it, study it, know it, memorize it and depend on it. As Moses said, these are not idle words, they are your life.

– and oh how I pray for you the gift of rich, honest, deep, raw, vulnerable friendships. This has been one of the areas that the Lord has been most exceedingly gracious with me … From April at La Petite Academy through junior high, high school, college, Chicago, single Dallas days, and my married life, my friends have made all the difference. I pray that the way you love your friends now (you ask me almost everyday if you can play with friends and you are under the allusion that your party is ‘friends only’ with ‘no badults’ as you told your DeDe on the phone today … No such luck) will continue the rest of your days. And, my son, the best way to have a friend is to be a friend – so this is my hope and prayer for you. May you be a faithful friend that enjoys the gift of faithful friends.

That’s 4 big prayers for my big 4 year old. And my hope is that I will be here to add to it for your 5th birthday. But whether I am here for your 5th or 15th or 50th, these, my son, would be my hearts desire for you. And if I am not here I pray that you will have a desire to read back over your Mamas words and hear her heart. And that you will take them to heart. And that you will know that I love you with all of my heart. Forever and always.

PS After writing and as I attempted to post this with a few failed attempts, I heard the precious sound of your fast footsteps coming down the hall. At 4:40 (ironic huh?), you came to my side of the bed and when I said ‘guess who is 4…’ You answered with the cutest little ‘me’ before you climbed right up in between us. Once upon a time I would have been so foolish and arrogant to think, summarily, ‘people shouldn’t let kids sleep in their beds’. But one of the gifts of cancer is to be reminded of relationship over rules for our family – because I just don’t know how many nights I may have with you. And I love that both of your little feet are touching my leg while you are curled up facing your daddy. You are loved, 4 year old little man, you are loved.

Another day. Another doctor.

One of the many gifts of cancer is that my life is a little “off schedule” (to say the least) and I am learning to live much more day by day. I am less prone to try to plan out my days under the illusion of control. At the same time, sometimes that means that it’s late at night before I realize the next morning I have an early appointment for labs along with Lincoln because he is out of school. I curled him up in my lap this morning and asked if he would go to the doctor with me and he at first said “no” (and therein lies a problem since it was really a rhetorical question) but thankfully he quickly said “yes I will … Can I take a sugar snack with us?” Ain’t nothin’ like Teenage Mutant Ninja Turtles fruit snacks to motivate a kid to go to the doctor with you. Whatever it takes…

He entertained himself while we were waiting by being on all fours with his cars between patients. Slightly awkward but it was a long wait for three-year-old. Thankfully, a room full of cancer patients are pretty humbled and pretty gracious. 

He then sat in the chair with me to get bloodwork done from sweet Ms. Betty who, as of the last couple of months, always does my labs since my veins have been a little beat up and less cooperative. Here we are…  

Those of you that know him well know that he is a child of 1 million questions so poor Miss Betty had to answer questions about what the vials were for? why is there water in the bottom? where do you get her blood? and how does that work? After she taped me up, she taped him up too. He was feeling pretty big boy. The awkward smile in the picture is only because he is in the awkward photo stage. He wasn’t scared at all. And I actually think it worked well to include him in my world.

Thankfully, as I loaded him up to go to the doctor, his Aunt Kiki offered to take him with her to play today so after I gave blood we headed down the elevator to meet her. He jumped on a full elevator with patients and doctors and held out his taped arm and exclaimed “The doctor gave me tape… But I’m not sick… My Mama is sick though…” The whole elevator listened intently since no one else was talking and I heard this older African-American lady lean over to her friend and say “I think my heart might burst.” When we got off the elevator, I heard them talking to each other and saying “what did he say?” And heard the others recounting his little story. A pretty sweet little moment. And a tad sad too.

So he went off to play with Levi and Lily Ruth…

 
… And I went back upstairs to wait for lab results to see if I needed a shot before chemo or not. While I waited, I got a message that my grandmother had fallen this morning and was taken to the ER. Ain’t nobody got time for that! And of course I felt terrible that the message had been from a couple hours earlier but I had just seen it. The good news is that she didn’t break her hip and they sent her home with a couple stitches in her arm and some pain medication. And she was her chipper self when I talked to her. Her only complaint was that housekeeping hadn’t come to clean the blood off her floor and the nursing staff needed to return her buzzer. These are the woes of a 96-year-old. We are thankful she is okay.

As I was leaving her a message, Christina appeared in the lobby with my lab results and said I didn’t need a shot. I was really pleased because it is not a fun shot in the belly. My lab work was very stable – the red blood cells and neutrophils and platelets were all right at the border of approved limits for chemo. I can tell that I am still pretty anemic based on my energy level but hopefully a new iron regimen (or maybe a good steak dinner?!) will start to it help the red blood cells. And I think the new schedule of every other week for chemo may give my body a better chance of recovering between each dose of chemo. It was a nice reprieve to have an entire week last week without doctors appointments. And except for a pretty rough steroid crash on Monday, I felt pretty good.

The only other thing I have to report is that our house will go down later early next week. And we let a few of Lincoln’s friends help the demo guys by giving them a head start. It was pretty darn cute. Not too often that you tell kids to bring their hammers and sledgehammers and knock down your porch and your kitchen.

  
     

Pretty cute huh?!

And, hopefully, after chemo on Wednesday I won’t feel like Dr. Osborne took a hammer to me as well. Thanks for praying toward that end. 

Much love to all.