Birthday Eve

My how life can change in a year!

On this night last year I was at Good Samaritan receiving my first CT Scan (of many, unbeknownst to me at the time). This year I am spending my birthday-eve at a hospital again! I have a sweet little roommate this time who is a total champ. She has continued to improve with each hour that goes by and is spending more time awake. Tomorrow she should be able to sit up and, hopefully, get moved out of the ICU and onto a regular floor.
 The 30th year of my life has easily been the most challenging. In the last 12 months I have gained the titles of cancer survivor and special needs mom, two things I never would have guessed would be a part of my identity.  Though I don't have the benefit of time passed yet, already I am able to recognize this point in our family's history as a time of stretching and growing into a new level of abundance.

Abundant: (adj.) present in great quantity; more than adequate; 

oversufficient; well supplied; abounding

My life has become more abundant in so many ways this year. Though our little family has had more than our share of burdens this year I can confidently say that life has never been so full. That is something to celebrate!

 Maybe my "30s" will redeem themselves after all.

Surgery Update

Mae's laminectomy was a big success this morning! Thanks to Dr. Mangano and Dr. Infinger, her neurosurgeons, and the rest of her surgical team. She is now resting comfortably in the Pediatric Intensive Care Unit. 

She was a good girl leading up to the surgery despite not being able to eat or drink anything. For no particular reason at all she really liked her anesthesiologist and kept reaching for him to hold her! They laid her on a warming blanket called a Bair Hugger that fills with hot air to warm the body and help regulate temperature before, during, and after surgery. As you can see from the picture below she loved it!

She also received pre-meds that made her drowsy prior to receiving full anesthesia which made her extra smiley and goofy. We got to walk with her down the hallway and said goodbyes at the OR door. We had some kind friends visit with us as we waited and before we knew it the surgery was finished.

If all goes according to plan, we will spend the next 3 days in the PICU and then will be transferred to the Neurosurgery floor and should be discharged on Sunday. It might be an interesting few days we have ahead of us as she is supposed to lay flat on her back for at least 72 hours!

Thanks for all of the encouraging messages, thoughts and prayers. We are all feeling the love!

Our Mae Annabel

I thought I had retired this blog. But, I am resurrecting it again and changing the name. I have taken off the tag “My Journey With Hodgkins” because that part of the journey is over (so far so good and hopefully forever!). But as all good journeys do, it has diverted us off the trail we thought we wanted to take and guided us to another, more abundant journey. 

For months we noticed subtle delays in Mae. Often times it wasn’t something we could necessarily put into words, just a recognition that her awareness was not typical for her age. At 11 months she was still not able to sit independently so our pediatrician referred us to an occupational therapist. After a few months of therapy it was suggested that we make an appointment with the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospial (CCHMC for you non-Cincinnati folks). Mae went through an evaluation with DDBP and they identified “global developmental delays” which is just a general term for delays without recognition of a source. In order to locate the source of her delays DDBP ordered a wave of testing including an ABR hearing test, a brain MRI and blood draws for metabolic, chromosomal, and genetic testing.

The first result we received was that she has permanent hearing loss in her right ear due to an enlarged vestibular aqueduct. This turns out to be an anomaly of its own and is unrelated to any of her other issues. It is treated with a hearing aid. The good news is they make really cool hearing aids these days. She will be sporting that around shortly and we look forward to seeing her awareness and speech progress with the aid.

      

      Shortly after the brain MRI, we received news that she has a Chiari I brain malformation, a condition in which cerebellar tonsils of the brain grow down into the spinal canal which can cause a compression of parts of the brain and spinal cord and can interrupt the flow of spinal fluid in the spinal canal. It turns out to be fairly common.  It can cause intense headaches and other neurological issues but many people live their whole lives without even knowing they have a Chiari malformation. We were referred to a neurosurgeon who ordered a total spine MRI to get a better look at the extent to her Chiari.

The second MRI revealed a Tethered Spinal Cord, a condition in which the spinal cord is abnormally attached to the tissues around the spine. As a result, the spinal cord can’t move freely within the spinal canal, leading to possible nerve damage. Interestingly, Mae’s pediatrician had suspected she had a tethered cord when she was 2 months old because of the presence of several birthmarks along her spinal cord and a sacral dimple. However, he had ruled it out after an ultrasound of the area. We are not sure if the original ultrasound produced an inaccurate read or if the tethered cord had not developed enough at the time. The MRI also revealed a Syrinx (short for syringomyelia), a condition in which spinal fluid enters the interior of the spinal cord forming a cyst-like pocket which can expand over time and destroy the center of the spinal cord thus causing nerve damage. Among other things, a syrinx can be caused by a tethered cord or a Chiari malformation. It is rare that a person would have a syrinx, a tethered cord, and a Chiari malformation. But, Mae is a one-of-a-kind girl who does, in fact, have all three.

Following the MRIs, we met with Dr. Mangano, Chief of Pediatric Neurosurgery at CCHMC. In his opinion, the tethered cord is likely the cause of the syrinx rather than the Chiari (which he believes is probably asymptomatic). So, he plans to perform a surgery to untether her spinal cord. The goal is to free up the spine which will, hopefully, eliminate the syrinx and restore the normal flow of spinal fluid. Surgery will be on Wednesday, May 27^th and she will stay in the hospital through Sunday followed by a 2 to 3 week recovery at home.

In the midst of all of that, we also received chromosomal test results. We have gotten a quick education in genetics. Here is a link that gives the basics. Testing revealed that Mae has an unbalanced translocation.

“A translocation occurs when a piece of one chromosome breaks off and attaches to another chromosome.  This type of rearrangement is described as balanced if no genetic material is gained or lost in the cell.  If there is a gain or loss of genetic material, the translocation is described as unbalanced.” – Genetics Home Reference

More specifically, she has a partial duplication of chromosome 13 (13q22.2 to the end of 13q) and a partial deletion of chromosome 9 (9p24.2 to the end of 9p). For a cultural reference, a more common chromosomal abnormality is Down Syndrome which is when a person has a partial or full duplication of chromosome 21.

We had the honor of meeting with a team at the Department of Human Genetics at CCHMC, the largest pediatric genetics program in the country. Dr. Burrow and his team spent several hours talking through the science of Mae’s condition, the details of what this means for the present and how it will affect her in the future. Of course, there is a lot of “we have to wait and see” but it was encouraging to be able to build a picture of the future in our minds. They were quick to ensure us that Mae does not have full Trisomy 13 which usually comes with a fatal diagnosis. So, we have all been able to breathe a big sigh of relief. From what information they have, they believe that she should be able to live a long and healthy life. All of her major systems seem to be functioning properly, with the exception of her Central Nervous System as evidenced by her tethered cord and Chiari issues. The “wait and see” has more to do with her level of independence and pace at which she learns things, as it is with all people with intellectual disabilities. 

It is a lot of heavy things to process all at once. I was led to an On Being interview with Jean Vanier and it has really shaped my attitude. For those who are unfamiliar with Jean Vanier (I was until recently), he is the founder of L’Arche communities, intentional neighborhoods throughout the world where people with and without developmental disabilities live and work in community together. He was a close personal friend of Mother Teresa and is a lesser known transformational true angel-on-earth. He told this story in a speech he once gave and when I heard a recording of it, it really spoke to me:

“I don't know whether around here you have some normal people, but I find them a very strange group. I don't know—I remember—well, one of the characteristics of normal people is that they have problems. They have family problems, they have financial problems, they have professional problems, problems with politics, problems with church, problems all over the place. And I remember one very normal guy came to see me and he was telling me about all his problems. And there was a knock on the door, and entered Jean Claude. Jean Claude has Down Syndrome and, relaxed and laughing, and he just shook—I didn't even say, "Come in." He came in, and he shook my hand and laughed and he shook the hand of Mr. Normal and laughed and he walked out laughing. And Mr. Normal turned to me and he said, "Isn't it sad, children like that." He couldn't see that Jean Claude was a happy guy. It's a blindness, and it's an inner blindness which is the most difficult to heal.”

Through this process of evaluations and diagnoses and more evaluations and more diagnoses, our eyes are being opened to our own inner blindness and we are seeing the world in a new light through the eyes of our baby Mae. Though in some ways we are grieving the loss of what society has taught us is a “good life” (academic achievement, well-paid work, marriage, kids, repeat), there is nothing to be sad about. Mae smiles more than anyone I know and she loves to be close to the people that love her. She is a curious toddler who is exploring the world around her and taking it in with all of her senses. She is truly “fearfully and wonderfully made” and, I have a feeling, will teach us more about God than we can even comprehend.

So, our lives right now are full. Full of doctors appointments and waiting rooms, therapies and new rhythms. But also full of lessons of love, sacrifice, and vulnerability. We will use this blog to update anyone who is interested in following along. Please keep us all in your thoughts and prayers as we approach May 27^th. We have had to lean into our community a lot this past year and we appreciate the support and kind gestures we have received. Thanks for all the love!

“For you created my inmost being; you knit me together in my mother’s womb I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139: 13-14

D.O.N.E

Today I received my 12th and FINAL chemo infusion! I will have to have a blood draw and check-in with Dr. Brennan every 3 months and a CT scan every six months for the next two years. Definitely manageable.  It was a huge sigh of relief to get get the "goodbye" from Dr. Brennan, unhook my port from the IV, and walk out the door.

A kind neighbor gifted me this beautiful bracelet (from Fort Thomas Central) and when I put it on the impact of the word survivor really sunk in for the first time.  I am now officially a "Cancer Survivor." An identity that I am not quite used to yet but one of which I know I will some day be really proud. There are a lot of emotions that I have put on hold during this journey in the interest of inner strength to press on and now that I am on the other side I am starting to really grasp what we have been through. I know over the course of the next few months, as my body and mind recover, I will be able to search and understand those feelings at a greater depth.

For today I am resting in God's faithfulness, not only that I was able to be healed physically through the miracles of modern medicine and dedicated doctors and nurses. But, also, that He was present every day, every hour, every minute through his earthly daughters and sons. Since I have been in the habit of posting cheesy song lyrics on this blog I will go ahead and top everyone off with another (and this one is extra cheesy). There is an old Alabama song called "Angels Among Us" that has been whispering itself in my brain the past few days. They go like this:

"I believe there are angels among us. Sent down to us from somewhere up above. 

They come to you and me in our darkest hour to show us how to live, teach us how to give, 

to guide us with the light of love."

I can't think of any other words that more accurately describe my feelings about all of the support we have received over the past 6 months. To those of you who have written cards, sent gifts, cooked meals, babysat our kids, listened to us vent, or prayed for us... you have literally been our angels. You propped us up when we couldn't stand on our own. Truly, you have done the work of God whether you acknowledge that or not. Thank you isn't enough but it is all I have.

There are three people that I want to call out specifically: 

Bradley. He has listened to me me fret and feel sorry for myself while gently leading me back around to positivity. He has watched me physically balloon into a bloated, bald mess while all the while encouraging me (read: lying through his teeth :) )that I am still beautiful to him. He has spent many extra nights waking up with Mae for bottle duty. He has been brave for the both of us at the countless appointments for scans, surgeries and chemotherapy infusions. He has been everything one hopes their spouse means when they vow "in sickness or in health." This experience has certainly been an exercise in strength for our marriage and we have prevailed. Thanks be to God.

Mom and Dad. There are no words for they way they have supported us. I am fairly new to this parenting thing and am only just beginning to understand the depth of sacrificial love that the job requires. My parents have embodied this in the truest sense and have set a beautiful example of servanthood for us and our kids. Without hesitation they opened their home to us, toddlers and all, and have accepted the night time crying, mealtime messes, mountains of toys and general chaos with which we come. They made space in their busy but peaceful lives and happily accepted the tornado that we are. There is no greater gift.    


Thank you again for every kindness you have shown to me and my family over the past 6 months we are forever grateful. Please continue to pray for us as we make adjustments to get back to our "regularly scheduled" lives, and for the many others who continue to fight the good fight against cancer.  

Love, Love, Love,

Liz

Guest Post: Almost There!

It's almost time to celebrate! Liz has only 1, yes O-N-E chemo infusion left...woohoo!!!  She received the news on Monday that in addition to a clear PET scan, she also had a clear CT scan and there is no more cancer to be found!  Praise God, praise God, praise God!!!

On Monday, December 1st she will walk out of that clinic with chemo behind her, and a full life ahead of her.  Very full I might add! I just spent the last few days visiting her and my family up in Fort Thomas, and full it is.  Life with a 2 1/2 year old and a 1 year old is bound to be filled with lots of laughter, tears, joy, frustration, patience, impatience, fun, exhaustion, and diapers, diapers, diapers.  Until I was able to be with Liz at her infusion, I was not able to fully grasp the extent to which she has handled all of this so admirably, with such grace and fortitude.  Seeing those chemicals drip into her body, drip by tiny drip, for hours on end and seeing how each drip took away another bit of her energy with each drop and YET she walked out of that clinic went home and still had to be happy, encouraging, enthusiastic mommy to Austin and Mae that very afternoon.  I can't imagine still having a good attitude and remaining cheery, and perhaps most amazingly still being patient with my young children while feeling so ravaged by the chemicals that are literally designed to kill the cells of the body.

Living in Texas and mainly just hearing about Liz's experience over the phone, in some ways for me, it was able to seem like life wasn't all that different.  Liz still took the kids to the park, still found time to go to things like the pumpkin patch and the county fair, a trip to Michigan to say goodbye to our Aunt Laurie who passed into the next life after her own battle with cancer, and all the while kept life quite normal for Austin and Mae.  The thing is I don't know how she did it! How did she muster the energy and endurance to continue life as nearly normal for her two sweet children?  The answer is simple: sacrificial love.  Liz set aside her own needs for her children many, many times over the past 6 months in a way most of us will never do.  I saw her get out of bed after her chemo infusion as soon as her kids arrived home, despite feeling completely drained, weak, and "out of it" from the chemicals and act as energetic as possible as she played with Austin and gave him a bath because he wanted "mommy to do it," as she cuddled Mae and praised her for crawling, as she's just starting to hone that skill.  You can tell, when you really look and observe, that Liz is so very fatigued, but it is beautiful to see the way she presses on.  I will always treasure the example she has given to me of perseverance, positivity and love.

With a 22 month old and 6 week old, I can't tell you how many times over the past 22 months of parenthood that I have felt sorry for myself, thinking "oh poor me, I can't come home and take a nap...I have to wait to eat dinner so I can feed the kids...I have to wake up and feed the baby in the middle of the night...I have to pick up ALL these toys...do ALL this laundry...go to the grocery store AGAIN?"  How petty those things sound, and how embarrassed or even ashamed I am that I complain about such minor inconveniences when I see the ways that Liz has continued to do all of those things and so much more while undergoing a battle against cancer, enduring 6 months of chemotherapy.  Liz nor any of us would have ever imagined her going through something like this at such a time as this, and thankfully it will soon be in in the past. You can never know quite how you will handle something until you go through it.  I couldn't be more proud of the way my sister has handled her cancer journey.

Last but not least, the other remarkable and inspiring part of these last 6+ months has been the many, many people that have shown unending love and support to Liz and our family.  So many have brought meals, helped with the kids, offered prayers and encouragement, sent cards and packages, run errands, and helped in countless other ways.  It has truly been God's provision for our family.  We will be forever grateful for the way that so many were a part of bringing Liz and all of us through this journey.

So mark December 1st as a day of celebration! While the affects of chemo can take up to 6 months to fully subside, it will be downhill from there. It will be the day that Liz will be able to say that she is finished with her chemo treatment and she is cancer free!

~Tina Hubert (Liz's Sister)

"Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus." Philippians 3:12-14

"The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him!" Psalm 28:7

Over the Hill

Oops... I haven't written an update in two treatments! We've been busy, busy, busy with the kids on the weekend and I've been using weeknights to rest up for the next day. The last post was written before I had my mid-treatment PET scan to see whether the cancer was hanging around. Fortunately,  I received the news that the PET scan showed no signs of cancer! I still have to finish out my chemo regimen but I will not have to do any radiation. We are so thankful!

Today I am "Over the Hill" with my treatments. This is my 7th treatment (out of 12) so from here on out I have fewer treatments behind me than ahead of me. A small milestone but a milestone worth celebrating nonetheless. My blood counts continue to be good and we are moving right along. I should have my last treatment on December 1st (party anyone?). It will be a beautiful thing to close the book on 2014 and start fresh with a new year cancer free.

Something I have been experiencing is the weekend weepies.  On the Friday and Saturday after I receive a treatment I have what I can only describe as little bouts of depression and anxiety.  I don't know if this is from the chemo or if it a product of coming off of the steroids at the end of the week or if it is just a psychological reaction. But, it consistently comes around, then, come Monday I pop back to "normal."   I considered an anti-depressant but decided against adding another drug to my body's chemistry. Since I know it is coming I am able to keep it in the front of my mind that this is temporary. The kids make it easier and more difficult. Easier because we are chasing them around and I don't have time to think about myself. More difficult because we are chasing them around and I don't have time to think about myself :)

Other than the weekend weepies I have just been dealing with the tiredness. My eyes are getting big dark circles under them and I have been gaining weight from the steroids. The mirror is not my best friend. Again, all temporary.

We have been continued to be blessed by the support and encouragement of friends and family. Thanks to everyone for continuing to let us lean on you!

Grace my Feet and Faith my Eyes

I am sitting in the “chemo suite” receiving my fourth chemo treatment today (that will be 2 rounds down!).  I have been great as far as blood counts go and have been able to receive treatments on schedule.  I will get a PET scan done a week from Friday which will tell us if there is still enough cancer hanging around to require radiation.  Our prayer is that the scan will be clean, radiation won’t be necessary, and that I can continue on with chemo. I never thought I would be praying FOR chemo.  But, studies are beginning to show that the long term effects of radiation are a bigger negative than the effects of more chemo.  So, here we are, praying for chemo.

My side effects have been mild in my own estimation when I hear others experiences and what it could be like thought I know it is cumulative and could get much worse. For now it is not worse though so we can be thankful for that.  It has primarily been tiredness and some mild nausea. I have also had hot flashes, mouth sores, and a metallic taste in my mouth. All pretty typical side effects. My hair is very short and a bit patchy but not all the way gone.  The last I wrote I was nervous about the side effects of the white blood cell booster and, praise the Lord, I have not had any achy bones. The doctor said if I didn’t experience it the first time around I will likely not experience it at all. So forward we go.

The little ones continue to be oblivious to the bump in the road that our family is working through. Thanks to generous people in our lives, the lives of the kids have been able to continue on as normal and they don’t seem to be aware that mommy is sick.  Mae is now 9 months old. We are still tweaking her sleep schedule and trying to find a way to get her to wake less during the night. We haven’t had a 12 hour stretch yet but I think we are getting close. What a relief that will be when we can all get a full night’s sleep! We are almost through that first year mountain that some mommy's love but I really hate. Give me a toddler any day (maybe I won't be saying the same thing when I've got 2 of them)!

“Keep 'em coming these lines on the road, and keep me responsible be it a light or heavy load. Keep me guessing with these blessings in disguise, and I’ll walk with grace my feet and faith my eyes.” – Caedmon’s Call – Faith My Eyes

These lyrics come from a song by the band Caedmon’s Call (it is Christian music with minimal cheese, is that possible?). It is a beautiful song that I have come back to again and again at different points in my life as a motivator and reminder of where to fix my eyes when things get rocky (though it should be ALL the time). It is about how tough it is being far away from your physical home, family, friends and familiarity.  When I went through my short Peace Corps stint as well as my first year of law school in Philadelphia I found it very meaningful in the literal sense.  However, now I am also finding it applicable in the figurative sense of being in a new place in life and feeling “far away” from the familiarity of my “normal” self. The last part has become a mantra of sorts, “I’ll walk with grace my feet and faith my eyes.”  Perhaps you will find it meaningful too.

We Are THANKFUL for:

•  Summer! Sometimes it is just the small pleasures that bring the most joy. Being able to enjoy things outside has been one of those small pleasures for us. 
•  
• Reconciled Relationships. Through this journey thus far we have had the opportunity to reconnect with several people in our lives with whom our relationship had fizzled over time. We are thankful that God is using this situation as an opportunity to reconnect.
• 
  
• Friends and Family. Always, always, always. Old friends and new friends. Family close by and family far away. We are receiving so much love.