Sometimes, in the midst of uncertainty, being thankful takes intentionality. We have so much to be thankful for... always. 

I am so thankful we have a God who cares deeply about the details of our lives. I am thankful He has given me the strength, time and resources needed to daily walk this journey with Gwen. I am so incredibly blessed each and every time I get to advocate for, pray with and listen to Gwen. These are memories and treasures I will hold for all my life. 

The most recent update is that her PET scan report shows no additional cancer. A HUGE praise. We have had (or have scheduled) follow up appointments with her primary care doctor, cardiologist, a new pulmonologist, an oncologist as well as her current urologist. We are still uncertain as to the cause of the fluid building up in her lungs but one doctor suspects that it is her body's informational response to the transitional cell cancer. We hope to learn a little more with upcoming appointments. 

As Gwen receives her 4th (of 6) chemo treatments today, she continues to choose joy and strength each step of the way. Other than fatigue, she hasn't experienced additional chemo side effects... another praise!  She will receive her final treatment on Dec 4th. She will then have another procedure, with sedation, to see if there are any cancer cells left in her bladder, kidney or ureter. This will happen sometime in January. After that procedure, we should know more about what steps are next. 

Thank you all for your continued prayers and for the notes some of you have sent. Those notes bring her so much encouragement. My next update will happen after we have "next steps" in January, unless situations occur that create a sooner need. 

Gwen having her 4th chemo treatment

    

Give thanks to the Lord, our God and King, His love endures forever! 

"As you do not know the path of the wind or how the body is formed in the mother's womb, so you cannot understand the work of God, the Maker of all things." Ecclesiastes 11:5 

We can sing praises to our Maker, even in the uncertainties of life, even when the storms seem to rough to see the shore on the other side and even when we don't get the answers we want. He is faithful. He is good. He is sovereign. He does care about the details of our lives. He hates the brokenness of this world and the consequence thereof. He hurts when we hurt. His love and grace sustains. Even in the storms, His graces are there.

In early October 4th, Gwen had another cystoscopy in Iowa City. Dr. Gelhaus allowed me to see the screen as he performed the procedure. He explained every part of the procedure, as it occurred. He showed how the dye pushed into the kidney and showed that there was no obstructions in or near the ureter and that the bladder showed no signs of new tumor growth. 

After the cysto, she was able to start her first round of chemo. The type of chemo she is receiving is put directly into both her kidney and bladder. She receives two different types, back to back, so each treatments lasts about 3 hours. Although her first treatment was super uncomfortable, the next one didn't seem to bother her much at all. 

Fast forward to October 28th. Gwen ended up getting ill and being brought home from church early. She noticed that her breathing felt more labored than normal. She noticed that she was extra tired, nauseated and had a headache that wouldn't subside. She decided to visit with her primary care physician, here in Des Moines, on Tuesday because she was still struggling to breathe. A chest x-ray showed fluid in both of her lungs. 

Wednesday morning, we made the decision to take her to the ER in Iowa City to keep all her care coordinated in the same medical facility. We arrived around 11:30am. She had her vitals and bloodwork taken at 12pm. We were then ushered back to the waiting room until a room opened up. It wasn't until 9pm that she was brought back to a room. After noticing that her PR BNP levels were high, they were confident that she was in congestive heart failure. They ordered a CT with contrast and a EKG. Surprisingly, it showed that her heart is actually fine. Her lungs showed fluid and several nodules but not many definitive answers. 

She was admitted around 2:30am. Her blood pressure continue to fluctuate throughout the following day. It became difficult for her to stand without almost passing out. They discovered that her blood pressure was dropping about 40 points every time she tried to get up... the reason for her consistent light headedness. A change in heart medication seems to have leveled her BP significantly. 

Later on Thursday, they performed an ECHO and attempted a thoracentesis (draining fluid from the lung), but her blood pressure crashed into the 80's and she passed out. While they couldn't proceed with the thoracentesis, the ECHO showed that her heart is pumping well and that she is not in congestive heart failure. We are currently unsure why fluid continues to build in her lungs. 

Friday they decided to attempt another thoracentesis except this time they would use the guidance of a CT and allow her to lie flat. Success!! They were able to drain 150cc's of fluid from her right lung. They did not attempt her left. Dr. Save (the hospitalist overseeing Gwen) also ordered a PET scan. Because the scan could not be performed until Monday afternoon, she needed to stay admitted throughout the weekend. Throughout the weekend, she experienced a little more difficulty in breathing, a consistent headache and occasional back pains.

Today, we are praying for more detailed answers as to why fluid continues to build in Gwens lungs. Please pray we are matched with doctors that are right for the care she needs and that we are able to discuss next steps for her urology chemo. Please pray that we ask the right questions, that we are patient in our expectations and that we are able to process all that doctors discuss with us. 

Thank you all for your continued support! Thank you to Erin Fish and Meg Jaques for the meals brought to my family this past week. Thank you to those who have called and messaged Gwen, those encourage her greatly. Thank you to those who continue to reach out and ask for updates and how you can specifically pray. Thank you for walking this journey with our family! 

One of my favorite seasons of the year is winter... I know, I'm strange. Snow is one of my favorite parts of winter. Not because it makes roads messy and more difficult to drive through, not because I have the inconveniences of layering my kids to keep them warm, not because our heating bill skyrockets. I love snow because every time it falls from the sky I am reminded of Gods grace and how He cares about the details of our lives. Each and every snowflake is unique, not one the same. While millions of snowflakes falling in a snow storm seems overwhelming, a single snowflake is breathtaking. 

He cares about the details of our lives and we trust Him... especially in the storm! I am praying we don't miss the graces sprinkled throughout this specific storm. 

Cancer is a disease that can bring so much pain, anxiety, stress, grief, uncertainty and fear. What cancer cannot steal is HOPE.

As we continue to walk this journey, I thought it would be better to have a place where I can update everyone without fearing I left someone out.

Today, Gwen had a second resection of the tumor in her kidney. They were unable to use the current nephrostomy site because it did not allow them access to the tumor as they had hoped. They performed another nephrostomy, in a higher location, and successfully retracted most (prayerfully all) of the remaining tumor.
They removed the stint that was left in her ureter and performed a chemo bladder wash to kill any floating tumor pieces washed down into the bladder from the kidney resection. That treatment was extremely uncomfortable but she pushed through with the strength she always seems to muster.

She is finally sleeping a bit after getting more anti-nausea medication. Her kidney seems to be slowly regaining function as it's draining urine... which is amazing!

She will still return home with a neph tube. She will need to keep this tube in for the next 2-4 weeks until she is able to heal from todays surgery. They will then cap the tube to see if she can function without the use it. If she can, they will be able to remove the neph tube! (Something she would LOVE to see happen soon as wearing her bladder on her leg has not been her favorite new hobby.)

Next Steps: There are many treatments that need to be performed... weekly chemo treatments within the kidney, another cystoscopy in the bladder, weekly chemo treatments within the bladder, additional  regular kidney and bladder scopes and another bladder surgery. Knowing all this can be overwhelming so instead of focusing on all of it, we are focusing only on the next step. Even our next step is unpredictable and leaves us in a constant state of flexibility and surrender.

Please keep Gwen in your prayers as she recovers from todays surgery and as she faces many additional treatments ahead. Please pray for physical and emotional strength, for continued healing, wisdom for doctors and us as we decide next step options and for us not to miss the quiet whisperings and amazing detail God wants us to not miss as we ride these waves. Thank you! 

Notes of encouragement seem to be something Gwen turns to (re-reads) during dark days. If you want to encourage her with a note, please send them to 3714 157th St, Urbandale Iowa 50323

New Mercies

Lamentations 3:22-23  The faithful love of the Lord never ends! His mercies never cease.  Great is his faithfulness; his mercies begin afresh each morning.

I love these verses! I realize that it has been over 2 years since my last blog.... a loooong time! Life has been more than busy these last couple of years. As I read through my past blogs, I was reminded that His mercy is so abounding and so refreshing - EVERY day. 

I thought it would be fun to share a few of this past months milestones to restart this blog. 

This little man... that's right, he's no longer a baby!... slept through the night for 6 nights straight!! This would be the first time - EVER - for this little dude. So, needless to say, a little rejoicing going on in my house. Even if it's just me doing the rejoicing. 

This beautiful young lady turned 16! I feel like it was just yesterday that we moved to Urbandale and sent her to all day kindergarten. She is such a blessing to me. 

I turned... wait for it... 40. Ok, I said it. It's been a bit harder than I thought to leave my 30's... but so far, being 40 hasn't been so bad. 

God's Mercy is fresh and new everyday. 

I am excited to write more as life stays busy and as God continues to mold me into who He wants me to be... sometimes very painfully. 

Crossroad of my heart

Do you ever get to a point in life that seems to look like this? There doesn't seem to be an obvious "right" way to go - just several ways that seem to offer the same scenery as the next? This blog is my journey over the last year, one that brought me to a crossroad... in my heart.

As most of you know, a little over 3 years ago, Dave and I made the decision to trust God in adding more children to our family. Little did we know the blessings that would rain down on us in traveling this road. We have been blessed with 2 more beautiful children, lots more smiles and laughs, many more snuggles, new beginnings, beautiful moments as we watch our older children fall in love with their younger siblings, and the grace each day to embrace each moment as they come.

I always knew that this journey would be difficult. I knew that re-entering the sleepless nights that infants bring and that running out the door with diaper bags, car seats, snacks, bottles, extra outfits and listening to "wheels on the bus" was all about to wash over me.  I knew that many people would think I was either crazy or bored rather than simply obedient. I wasn't, however, prepared for some of the other difficulties I encountered. I had no idea my pregnancies would prove to be so difficult for me and my family. Although I am blessed to be living in a time where meds are available, I never anticipated being in need of constant IV's for months on end. Feeling exhausted, constantly throwing up, muscles spasming from lack of necessary vitamins and mineral, feeling helpless to meet the needs of my husband and inadequate to mother my other kids the way I used to. Let's just say, it wasn't only difficult physically. I was mentally overwhelmed, emotionally broken and spiritually yearning. I remember asking God, "I'm doing the very thing we know you asked us to, so why all this?" 

I was about 6 months pregnant with Malachi when I completely stopped all meds. I was elated. I was exhausted. I was so incredibly happy to not have any more needles aimed my way. Imagine this... it's 65 degrees outside, the sky is the most beautiful blue you have ever seen, the air is crisp and fresh and the birds are tweeting as they bustle about making their nests. THAT is a little how I felt. Ahhhhhh. Finally, God, I can rest and simply enjoy. Right?

Then my world turned upside down. My parents announced they were pursing a divorce, my mother-in-law, who had just gone through surgery for kidney cancer, was in and out of the hospital with major bowel blockages, my father-in-law's heath continued to decline, my husband was going through turmoil at work and then Cai was born with breathing struggles. All this in 3 months. That is NOT what I had in mind!!! 

I wanted to enjoy my summer, my kids, my husband, my friends and family and cherish each moment a newborn would bring. That is when my crossroad began. Did I still believe God was in the midst of all the chaos occurring in my life? 

If you have read my blog over the last 6 months, you already know that struggles that we have gone through with Cai. At one point, 2 months ago, after seeing several doctors and Cai already going through one surgical procedure, we were told that we needed to have him tested for cystic fibrosis. It seemed that Cai had over half the symptoms this disease brought about. We were told to not assume the worst but be prepared for it. I gotta say, that was really really hard to do!

Cai had to have a chloride sweat test performed to either confirm the existence of CF or rule it out. The first test was administered improperly so not only did it not work but it burned and blistered Cai in the process. REALLY? Really God? After all this, You are going to allow THIS????  So, here's where I want to share what I now know God was doing in ME. 

I am one of those moms that let my kids play in mud - because of the invention of bathtubs. I don't freak out at sand being poured onto my wood floors - because of the invention of brooms and vacuums. I don't freak out at dishes being broken - because I know that they can be replaced. It's easy for me to surrender the menial things in life. The things that are temporary, material or simply wants. What I wasn't doing each and every day was surrendering my children to the One who blessed me with their very existence. I was worrying about all the "what if's".  

It wasn't until after that first sweat test that I realized this. I truly believe that God allowed (didn't cause) that test to not be effective simply to work in my heart. Was I willing find joy in being blessed with a child with cystic fibrosis? Was I willing to give up my "right" to see my son grow up and live a full life? Was I willing to allow God to use my children in whatever ways He chose to glorify Himself? 

It was then that I realized that I needed to completely surrender my "ideals," my "needs," my "cant's," my "don't want too's" and trust Him to lead where He wanted. 

He has taken me here several other times in life, you would think I wouldn't have to be reminded! 

Last week, we were given the news that some test results seem to show some answers for Cai. As my last post shares more in detail, it is a diagnosis that doctors hope will be the best case scenario. After IV antibiotics for one week and oral antibiotics for 4-6 weeks, he might have the hope of completely being cured. THAT is what any parent would rejoice to hear. I am rejoicing. I am also trying to be careful to not once again want only what is "ideal" rather than what is glorifying to God. I'm not saying that my "ideal" isn't glorifying to God, but will I be ok if it's not?  I fully trust that God can completely heal my son. I am simply prepared and willing for Him to decide otherwise. Would it be hard? Absolutely. But that is where my crossroad continues each day. I will always have several paths to choose from each morning I am blessed to wake. Which one I choose.... that's up to me. 

Come to Me, all who are weary and heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. For My yoke is easy and My burden is light." Matthew 11:28-30

Answers for Malachi

Proverbs 3:5-6 say... "Trust in the Lord with all your heart, lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight."

T.R.U.S.T       It's a word that many of us choose to use when it "feels safe". Over the last few months, its a word... its an action...  I have had to put into practice every day. Not only trusting that God is still in control, but that He would lead us to the doctors we needed to see to find answers.

A.N.S.W.E.R.S      That's a word we have been waiting to hear for many months. We think we have finally found answers. Here is what we know.  When Cai had the bronchoscopy on March 13th, Dr. Albasida took a culture (just in case... but I know it's God's guiding hand). He received the results this week. There is a bacteria called "Moraxella" that normal resides in the upper respiratory of children... causing ear infections, eye infections etc.... but the bacteria was found in Cai's lungs. VERY rare. Actually not ever seen by these doctors in a child under 1. The probability is that he has had bronchitis since very early on. All his aspirations have probably been from reflux just complicating his condition. Hence why all his tissues are white and grey rather than pink. The lung cells that "fight" bacteria should be around 4-5. His are at 71.  We also found that he is fighting one other bacteria along with 2 other virus'.

T.R.E.A.T.M.E.N.T       Because of the severity of this bacteria, we were asked to have Cai admitted. Last night they placed an IV (in his head) because they needed to start antibiotics asap. This morning, they placed a more permanent line called a PICC line. The main reason they chose to place the PICC line is simply to allow us to take him home and administer antibiotics intervienously for the next week... allowing us to not have to stay in the hospital that whole week. Then, once they remove the PICC line, he will be on an oral antibiotic for 4-5 weeks. Our prayer is that he will totally be cured!

Thank you all for your continued prayers and for walking this long road with us. We have been so blessed with AMAZING doctors.... Dr. Steinmann, Dr. Beltroy, Dr. Elliot, Dr. Albasida, Dr. Castagnini. We have been blown away by all of their amazing bedside manors and they willingness to take time to research all these bacterias and virus' to better know how to treat Cai.

I will do my best to keep you updated over the next few weeks!

Praises, Party and Prayers

My blessings are more than I can count. Have you ever truly tried to count all the blessings that have been poured down upon you? I tried.... it was impossible! This month has been no different. In the midst of all the craziness our amazing family brings, God, once again blew me away.

On March 5th, I had to bring Malachi in to repeat the sweat test that would either confirm or rule out cystic fibrosis. Not only did the test go smoothly... no burns or blisters, no crying and lots of sweating...  but I found that my stress level going into that day wasn't nearly what I expected it to be. I believe, a result of prayer... from all of you! Thank you.

That same day, two years ago, I gave birth to our amazing little firecracker - Olivia. Two?! Where have these last two years gone? She has grown into such a little "lady".  Our days are filled with lots of "tubby's", Elmo, dancing, reading, pouring water into any and all things found, HUGE smiles, running to the potty a gazzilion times (she is now 1/2 way potty trained) and many many hugs and kisses. My colicky little baby has turned into a cuddle bug (Thank you Jesus!) that I hold dear to my heart.

Not only did Livi turn two on March 5th and Cai get re-tested. We got the call we were so uncertain we would get. Cai does NOT have CF. NOT! They were words I had somehow not expected to hear. God had totally prepared my heart for him to be diagnosed as positive. To accept that if that was how God was going to get glory... it would be okay. Needless to say, I was ecstatic! God was choosing to receive glory in my son being diagnosed as negative to this disease. This day... March 5th... amazing!

As I have continued to consciously be mindful of the blessings I have been given each day, here are some of my favorite.... forgiveness, hot water, beautiful smiles, soft warm blankets, my husband and children, toothpaste, mirrors, flip-flops, fuzzy pants, warm pajamas, blow-dryers, my sight, my hearing and my ability to be mobile, my friends, my family, and most of all - God's continues grace in my life.

Tomorrow, Malachi undergoes another surgical procedure. He is receiving a bronchial scope. We are praying that God will allow us to have an answer to Cai's months of struggles. If it's a structural concern, a different more intensive surgery will be needed. If he finds nothing, well, we ask the "what now" question once again. Either way, my prayer is that God will use me, that He will mold me into a woman, mother, friend, daughter, wife that is more like Him. That He will give me the strength to press forward, trusting that He will lead and that in His leading we will somehow glorify Him.

Thank you all for your prayers!