So it happened. It had been an elephant in the room for about a week now. Yesterday the word "discharge" was finally voiced, and today it just happened! Just like that, Katie walked out of the hospital to our home away from home, the Ronald McDonald House. She has been steadily improving in several ways over the past week and there was finally no more reasons to keep her inpatient. We love our inpatient nurses who had become our friends, but we hope to grow to love the outpatient nurses just as much.
She has 3 more days of whole lung radiation and will then begin more specific proton radiation sometime during the following week. After that she will return to infusions of the immunotherapy medication every 3 weeks or so. Although she will definitely have a need to be here daily for quite a while longer, we hope she may get to visit home soon.
While we are utterly thrilled with today's turn of events and how well Katie has done lately, we also recognize that we don't actually know how these treatments are affecting her Lymphoma yet. We are hopeful that her appearance is indicative of improvement in her disease. We certainly don't want to have a negative attitude but, the truth is, we are guarded. This has and continues to be a long road and we literally take it one day at a time (today being Day 72). However, today seems like a pretty good day to rejoice and celebrate!
Please continue to pray
- that the cancer in her chest is being destroyed day by day
- that she can continue her treatments outpatient without any need for re-admission
- that her appetite and strength will continue to increase
- that we will enjoy family this weekend as several are coming into town to spend the weekend with us
Sarah and Chad and the Cobb 7
A few weeks ago I was standing outside Katie's bedroom (aka Room A568 at Cincinnati Children's Hospital) speaking with the social worker who takes good care of us here. She stopped me mid-sentence and asked, "Did you hear what you just said? You said, 'I wish my kid was just getting chemo.' " And I realized that, yes, I did just say that. And yes, I do wish that. Who says that? What parent ever wishes their child was getting chemo?
Well, me. I wish my kid was getting chemo. Now, let me first say, I hate chemo. It is such a horrid medication that destroys so much along with the cancer cells, yet it also has a long standing success rate with many types of cancers, including Hodgkins. I wish my daughter could go to the hospital for her dose of nasty, toxic ooze and then go home with numbers beside her name that oncologists call a "cure rate." Unfortunately, Katie can no longer receive chemo because her cancer is completely unresponsive to chemo (at the time I made this statement, I didn't know even know that). Now we fight with new and old treatments. Although both have shown good success with Hodgkins, one is too new to project effectiveness and the other carries long-term toxicities. In addition to that, she continues to recover from severe respiratory distress and failure, a fungal infection in her lungs, a blood clot, electrolyte imbalances, pleural effusions and all the lingering symptoms of each of these. So, yes, right now I do wish my kid was just getting chemo.
Katie moved out of PICU on Monday and has been doing a little better every day. She is still on a little oxygen for now but weaning down, with much less coughing and distress. She has been without a fever for several days now which is a HUGE improvement. She is definitely looking and feeling better than last week. Radiation treatments started Tuesday and will continue every weekday for 4 weeks. She will also continue to receive the immunotherapy medication every 3 weeks for an undetermined amount of time.
So, other than a crummy afternoon today for other reasons of which I won't share details, she has been improving over the past several days. We are grateful for that. We are thankful for good days, however and whenever they come. Although most days include a variety of emotions, we also know that each day we live depressed and worried about the future is a day we miss enjoying our amazing girl.
Please pray for
- daily radiation treatments to go smoothly without side effects and with great effectiveness
- no coughing and improved breathing
- increased appetite and strength
- actual improvements in the cancer progression that correlate with her clinical improvements
- emotional and physical stamina for all of us
Thanks for fighting with us.
Chad, Sarah and the rest of Cobb 7
Some days it is just hard to write an update. We have not seen a lot of forward progress, and it is hard to find words to share with friends and family. But that also means that there are no words to give back to us either. It's hard to be encouraging and even to be encouraged. We want to believe, but Lord, help our unbelief.
Katie received her first dose of a new immunotherapy medication last week. We knew beforehand that it would likely make her seem worse before better because of the nature of how it will fight her cancer. While not easy to hear that, it is even harder to see it happening. It became necessary to move her back to the ICU yesterday for closer monitoring and slightly higher flow oxygen. Additionally, she is being prepped for radiation therapy to begin around the middle of next week.
Recently, I have been reading a devotional on a few notable Hebrew words. Today's was appropriately about Jacob, whose name was changed to Israel, which in Hebrew means, "wrestles with God." The ancient Jews did not see struggling with God as a negative reflection of their relationship, but rather that God invites the wrestling match. We have to continually remind ourselves that he is here with us and that he is okay, maybe even glad, that we are staying in the wrestling match instead of leaving the mat.
Genesis 32:28 - Then the man said, "Your name will no longer be Jacob, but Israel, because you have struggled with God and with humans and have overcome."
Please continue to pray for Katie and our family.
Sarah and Chad and the Cobb 7
Waiting. We've done a lot of waiting in this season. Waiting for appointments. Waiting for meds to finish. Waiting for test results. Waiting, eagerly waiting with hope. And we find ourselves in that familiar place once again. The CT results showed that we need to move on to a different treatment plan as the previous one was not being effective. So, yesterday began another regimen with a different medication and yet another time of waiting.
The Bible has a lot to say about waiting. In one of my favorite chapters in all of Scripture, Romans 8, Paul tells us how to wait. He reminds us to have an eternal perspective and to keep our eye on the ultimate promises of God, where we will find an "incomparable glory revealed to us" and where we will be "liberated from the bondage to decay" of this broken world. And like Paul, when I begin to think about eternity with our good Heavenly Father, I "wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us."
More and more I want that day to come sooner, where there will be no more tears and where joy won't be interspersed with sorrow and pain. I want that NOW, but Paul reminds us that we must "wait patiently and confidently." And I think perhaps the way that we do that is to really capture and relish in the moment of each day.
I have found that I am much more appreciative of the little things. Katie has been given some passes the last couple of days to leave the hospital and I found that I enjoyed my birthday dinner more than usual. I sat on a bench with her and Sarah and watched the clouds go by and made up images with them. We enjoy watching the sunset from her hospital room. Talking and laughing with long-time friends brings a deeper love for our brothers and sisters in Christ. God is teaching me how to see and savor his goodness and his grace while we eagerly wait and hope for our prayers to be answered.
For those that are holding us up in prayer, here are a couple of specific requests.
- For God to completely heal our Katie.
- That this round of treatment will be effective and have little side effects
- For continued improvement and strength so that she could possibly be moved to the Ronald McDonald House in the coming days.
- For eyes to see and savor God's goodness and feel His presence while we wait
We are forever grateful for your encouragement and support for our family!
Waiting with Christ,
The Cobb 7
I have been thinking a lot about hope over the last few days. I listened many times to the song we recently posted and I also read the blog of a friend walking through a very similar struggle with their child. In the last several weeks, I have often found myself saying that I feel hopeless. I realized that when I say those words I am implying that my hope is in doctors, medicine and good outcomes. Then, in the seemingly next breath, I might say that my hope is in Christ. So what does it mean whey I say that my hope is in Christ? Am I living that or just saying it?
To truly put my hope in Christ does not simply mean that I am hoping for a supernatural miracle. Ultimately, it means that my hope is in Christ and his power to redeem humanity from this fallen world. My hope is that he has an eternal plan for Katie, not just a temporal one (and the rest of my kids for that matter). My hope is not in the health and happiness of this world but in the redemptive power of Christ over eternal death. Many days I have felt that Satan is stealing my hope until I realized that he can impact my trust in the doctors and the medicine available for Katie and he can make me question the expectation of seeing her healthy, but he cannot take my hope from me. So I told him to lay off.
Believing is different. I continue to pray and believe that Katie will be home soon. I believe God can intervene on Katie's behalf, both through and in spite of the medical interventions. I believe we have excellent physicians who are exerting an enormous amount of effort on her treatment plan. I believe God brought us to Cincinnati to heal our girl. I am believing God for a miracle, but ultimately, my hope is in Christ.
Having this understanding has enabled me to get myself off the floor (figuratively, and at times, literally) to face another day. The days here are still pretty tough. She did not have a good weekend. Everything with her is a very fragile dance. Heart rate, blood pressure, fluid volume, oxygenation, potassium, antibiotics, anti-nausea meds, appetite, and on and on. One affects another and there's a lot of back and forth, up and down. On Tuesday, she had another procedure, a thoracentesis, to drain the fluid that had again accumulated around her right lung. Everything went smoothly and she has been breathing much better since then with no oxygen supplementation. Some of her counts have had trouble recovering from chemo and she has required several platelet and blood transfusions in the past few days. Fevers continue most days which make her feel crummy at times. She definitely feels better in some ways which is encouraging.
Here are some prayer requests:
- Today is day 45 since Katie has been home. She wants so badly to go home even if just for a few days. We are all grieving the loss of normal.
- For the fevers to abate so she can at least walk down the hall or out on the deck. She hasn't been out of this room in 12 days.
- For elevated mood and increased coping abilities
- For increased appetite and energy levels
- Above all, for the upcoming CT scan on Monday. We are becoming anxious as it approaches. We need to see that the cancer has taken a big hit from last week's chemo. A HUGE hit. A GINORMOUS hit.
We loved hearing the talk and seeing the pics of the softball/baseball tournament, the Lemonade 5K, the incredible congestion at Panera, and so many other supportive events and fundraisers from you sweet folks. We are enormously humbled and thankful. We wish we didn't need that kind of support right now, but we do appreciate it.
Believing and Hoping,
Chad, Sarah and the rest of the Cobb 7
"But now, Lord, what do I look for? My hope is in you." Psalm 39:7
Monday's lung biopsy results were definitely directive. The pathology shows that the progressive disease in her lungs is the lymphoma and not infection. Unfortunately, even though the pathology again confirmed that it is Hodgkin's, it is not acting like Hodgkin's normally acts in that it is quite aggressive. Over the last several days, on top of recovering from yet another surgical procedure, she has developed a more frequent cough, nearly constant fevers, and has also required a little bit of oxygen. The numerous antibiotics are being weaned back and a new high dose chemo regimen started last night.
Home keeps feeling farther away. Hope keeps getting stolen from us. The questions in our head are abundant. The doubts are real. At times, our faith feels thin. But we know that this is why we take the time and do the work to develop roots in our relationship with God when life is good. Because the roots need to be there when the storms come. God does not promise in his Word that if we follow him, life will be easy. In fact, he explicitly says the opposite.
As the attacks of this world batter us, we lean on what we know about God and not what we feel. We are so grateful for family and friends who are continuing to encourage us and immensely thankful for the Living Word that comforts and guides us. There was a time when the disciples were filled with fear and with three simple phrases, Jesus allayed their fears and restored their hope: "Don't be afraid. Take courage! I am here!" (Mark 6:50).
And that's what we'll do. We will find our courage to face another day because He is here with us. And that is an anchor of hope for our souls.
Thanks for journeying with us!
In Christ Alone,
The Cobb 7
Well, that didn't turn out as we hoped.
Yesterday's CT scan showed some worsening in her lungs. Infection? Hodgkin's? It isn't clear to anyone. Though she has been stable and improving in many ways, her lungs apparently have not. She has been treated with good meds for the infection and good meds for the cancer, but now we need bigger guns and more direction. In order to fight this properly, she needs a lung biopsy. This is planned for Monday morning.
In general, we feel pretty defeated and discouraged with no pretense of understanding any of this. We knew that everything hinged on the CT results, but this was far from what we planned or hoped.
But we have today, right?
So instead of discharge, they gave Katie some time out of the hospital on pass so we could spend the weekend together. We went to dinner as a family on Friday evening and spent Saturday afternoon at the outdoor space at Ronald McDonald House. It was awesome to enjoy some smiles and laughter amidst the gray clouds of uncertainty.
Pray for us on Monday. It's another surgery. Ugh. Everyone is on call for Katie that morning. I guess that's good. For those who want the medical jargon- the intervention radiologist plans to use core needle for the biopsy. However, pathology will be on hand to determine if the tissue sample is adequate and, if not, surgery will step in for a VATS. Basically, pray that the biopsy can be obtained in the least invasive way but with an adequate sample for clear answers.
And then we wait for more pathology. Waiting is awful. As bad as scans. Pray for quick turnaround.
And you can keep praying for our emotional state. I can't even explain.
Lord, we have no power to face this vast army that is attacking us. We do not know what to do, but our eyes are on you. 2 Chronicles 2:12
If all goes smoothly, Katie will be discharged from the hospital here in Cincinnati and moving next door to the Ronald McDonald House with us TOMORROW. We are so excited to get out of these walls for a while! She has not had any further issues with her breathing or any fevers for well over a week. She is doing so terrific as far as her eating and activity as she still works to improve in both areas. We are also going to have our family together this weekend for the first time in a month!
So, I'll keep this quite short.
She has a CT scan Friday morning. Please pray that this CT shows huge improvement since the last one. We need the infection to be gone. We need the cancer to be going. We need to see that we are treating everything with the best meds and that they are working.
Also pray for continued gains in weight and strength. She is doing well but needs to continue. We would love for the tube feedings to be finished by the time she goes home. On her little frame, every pound makes a difference.
If everything works out ideally and looks good this coming week, home may not be too far away. She wants to sleep in her own bed and enjoy the chaos in our house. She wants to participate in the end of year 8th grade activities. Please pray that this can happen!
Enjoy the sunshine this weekend. We hope to as well!
Sarah and Chad and the Cobb 7
There's an account in Mark's Gospel that I love. It's the story of a paralyzed man, but more specifically, it's about the paralyzed man's friends. They'd heard that Jesus was in town and was healing people, so these 4 men run back to their friend, put him on a mat and each pick up a corner and run back to the house. But, by the time they got back, the house was packed and people were lined up outside. So, it says: "Since they could not get him to Jesus because of the crowd, they made an opening in the roof above Jesus and, after digging through it, lowered the mat the paralyzed man was lying on. When Jesus saw their faith, he said said to the paralytic, "Son your sins are forgiven."
As I was reflecting on this passage, a few things came to mind.
Katie has clipped off several good days in a row with no fevers and continuing to get stronger. We were even able to get outside for a few minutes this afternoon - her first time in 4 weeks. That was a tremendous blessing!
This week, she'll continue to get her antibiotic and PT everyday, and get another round of her chemo on Wednesday. A comparatively low-key week. A couple of specific prayer requests:
Thank you for your friendship through this!
The Cobb 7
This week has brought more improvements and more plans. Monday's scans showed that the cancer is chemo sensitive as it has already started to respond slightly to the initial round of chemo given in Charleston. A new chemo drug was started today and will be given once per week for 3 weeks. Unfortunately, the scans also showed that the disease in her lungs is not improving quickly, so she will continue the antibiotic for an additional week. Because the fluid appears to have stopped accumulating around her lungs for now, the chest tube has been removed. This greatly helps her comfort level and improves her activity tolerance, so she has been working with PT and OT every day, along with working on some algebra and enjoying the therapy dogs. Since there is concern that her port could be a potential harbor for this infection, especially if her counts drop low again in the future, the port will be surgically removed tomorrow and a PICC line will be placed temporarily on Monday. The PICC line will remain until which time it is deemed best to replace the port. In addition to receiving tube feeds at night, Katie has been eating well in hopes of getting back to her fighting weight of 78 pounds. If she continues to improve as she has, we hope to come home in a couple weeks before the next round of chemo. Today marks her 23rd day in the hospital.
I am not sure how many of you feel about spiritual warfare, that is demons and angels fighting over us and around us, but I strongly believe that what we are able to see with human eyes is a very limited view of what is actually happening in our world. Right now, I believe our family is under attack by Satan, the prince of this world, who is using all manner of chaos and disease to cast low blows against us. I do not think it is coincidence that we are stuck in Cincinnati just as River Ridge Church is expanding and growing, or that we were all kept away from potential mission trips this year because of this, or that Katie's own blog -meant to encourage other teens in their faith- had just started to grow when her own roots of faith were struck with an ax. And it makes me FURIOUS!
As you pray for Katie this week, if you are so inclined,
consider also the power of audibly repulsing the enemy by the power of the blood of Jesus Christ and demanding that he leave my family alone. I would be so grateful.
Sarah and Chad and the Cobb 7