Last Thursday was the first day back to school for our kids. We have two in high school, two in elementary school and a preschooler. I guess the middle school gets a reprieve from the Cobbs for this year.
Katie started her freshman year with the rest of her peers. It was a long day for sure, but she hung in there. She continues to show us what courage really looks like ... one day at a time. She plans to be in school as much as possible, although we will continue to make frequent trips to Cincinnati. Immunotherapy does not lower her ability to fight infections but the newly added medication may, so we will continue to monitor her white blood cell counts and adjust accordingly. She is very social and driven, so it's important to her to be in school. The great thing is that because it is important to her, it is also important to her doctors. They are compassionate to her desires and do their best to make those things possible for her. They are the ones who suggested we go on vacation so that Katie could get her toes in the sand when we didn't think that was an option. They arranged an unscheduled visit last week so that she could get home in time to be ready for her first day. They hug her and sit on the bed with her and look at her pictures. They are such a blessing to us during this ridiculously painful season.
We head back to Cincy later this week for a couple appointments on Thursday. She will receive her next immunotherapy infusion as well as planning for proton radiation. If the risk/benefit analysis for radiation is in her favor, we will begin those treatments in early to mid September. All parties involved feel that this is a necessary intervention, and we would like to see it happen sooner rather than later.
Some prayer requests:
- for endurance for Katie as she goes into each day of school, another day of treatments, and the dreaded experience of radiation. She told Aaron one day that it was like lying on concrete for half an hour.
- for endurance for Chad and me. We are trying our best to keep life in our house as normal as possible but the extra weight we carry is exhausting most days and overwhelming the rest.
- for the immunotherapy to build momentum as it works in her body. Katie's cancer is very aggressive. We need this therapy to be even more aggressive.
Thanks for fighting with us.
Sarah and Chad and all of Cobb 7
After a couple days of scans and appointments, we came home from Cincinnati with a reality check. We definitely have reasons to celebrate. The improvement in Katie's lungs is incredible. The radiation in conjunction with the Keytruda has done an amazing job of clearing out the numerous nodules invading her lung space. For that we are so grateful. This has allowed Kate to be home, walking, laughing, keeping up with physical therapy and experiencing no visible symptoms.
The scans also reminded us that Katie's cancer is very aggressive. It has not backed down or submitted yet. Outside of the lungs, there is still very strong evidence of the Hodgkins. The next step will be to add another agent to be taken at home which may augment the immunotherapy. We also plan to go back to the proton radiation (the more precise radiation which was postponed previously) in the next few weeks. In the meantime, Katie will be enjoying the last couple weeks of summer before starting her freshman year at Winfield High School.
We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. . . So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
(2 Corinthians 4:8-9, 18)
We don't know about tomorrow, but today can still be a good day.
We continue to pray for complete healing for Katie.
Sarah and Chad and the rest of Cobb 7
Last week we were blessed to go on a vacation that we didn't plan to have this summer. Once Katie got her little self out of the hospital, she really wanted to get her toes in the sand! Thanks to some friends and a big thumbs up from her oncologist, we spent a week in Florida and really enjoyed our time together. We even sat back and listened to some of the fussing between kids with a little appreciation.
Just before we left, Chad spoke at River Ridge Church for the first time since before Easter. He shared some of the struggles we have had and things we have learned. If you have half an hour one day, you can listen in on that below.
We will head back to Cincinnati later this week as Katie has a CT and PET scan on Thursday. This will be her first set of diagnostic scans since she started immunotherapy about 7-8 weeks ago. We will meet with her oncologist on Friday to discuss results and she will receive her next immunotherapy infusion. To look at Katie, she looks incredible! We want to be hopeful that the internal images will match her external appearance, but we have this fear that we carry around with us. Scan anxiety we call it. It's hard to live with some days.
Please pray this week
- for a smooth IV insertion, labs, scan and infusion
- for results that show the cancer is responding to this treatment
- for clarity regarding next steps in the treatment plan
- for peace
Chad and Sarah and the Cobb 7
There is this place between fear and hope. We have all been there at times, even if we are unaware, either leaning toward hope or toward fear.
I live here now. In this place, acutely aware of each day, each opportunity, each interaction. While 'normal' swirls around me, I stand frozen in this space. Do I move into the next day, next week, next month, as if Katie is cured just because her hair is growing again and she can walk around the street? Or do I put an anchor in today, indulging my kids' every request because I don't know what tomorrow will bring?
If you want the answer, you can stop reading. I have no idea how to do this. I am figuring this out as we go along. For today, that means taking my kids on an amazing vacation and enjoying every minute with just the Cobb 7. We move forward each day. We can't see the future but, the truth is, neither can you. We are just maybe a little more aware of the space we live in now.
Katie had appointments in Cincinnati twice this week. It is a drive we know well by now, but I enjoy it more with her in the car beside me (even if she wears her Beats the entire time). She had another infusion of Keytruda, her immunotherapy medication. The one that was approved for children less than a month before her relapse. Her oncologist is thrilled with everything she sees clinically. In a couple weeks, she will get her first diagnostic scans since starting immunotherapy and finishing radiation. For now, the plan is to continue these infusions every three weeks with labs, check ups, physical therapy and good days in between.
We are hopeful. And fearful. We do our best to lean toward hope.
But when I am afraid, I will put my trust in you.
Sarah and Chad and the Cobb 7
After 80 days away, Katie arrived home last Thursday evening to a large group of friends, family and community lining our street to wave, smile and cheer as we drove in. It was certainly a very sweet homecoming! After a few minutes in the driveway reciprocating the smiles, we retreated into our house and, basically, locked the door to anyone else. Just as it is hard to find words to describe the difficulty of being separated for several months, it is also impossible to render a picture of the delight of being together! For the past week, we have enjoyed the normalcy of cookouts on our patio, trips to Aldi, neighborly drop-ins, favorite meals, and kids fussing at each other. Like waking up from a nightmare, it all seems a little surreal.
Oddly enough, we had begun to think of the hospital as "home." This was our room . . . our kitchen . . . our laundry facilities . . . our quiet place. The staff became our friends. The constant activity . . . procedures . . . interruptions became our way of life. The pain and hurt and dreadfulness became all we knew, day in and day out. I know it sounds weird, but in some small way, it was sad to leave. And yet, it was GLORIOUS to come home! Our real home - where the tea is sweeter, the beds are softer, the hugs are stronger, and there is carpet! Where people smile and wave and welcome us with sincere joy. Where the love is deep and real.
I am struck by how much the hospital resembles this world, full of brokenness and pain, yet still all we know. We become so accustomed to the people, places, and goings on of this world that we call it "home" and we don't desire Heaven. We read about how glorious it will be to live in the presence of God, yet we struggle to imagine life outside of these walls. I read recently that the blessings of this world are meant to point us toward eternal blessings, which makes me think that an earthly homecoming must be a rudimentary representation of a heavenly homecoming. As hard as it is to think about not being present in this world, imagine the excitement, sweetness, and joy of going Home!
We traveled back to Cincinnati on Thursday for a clinic visit. We happened upon one of the Child Life Specialists and her therapy dog, Chevy, who was an important friend to us, and it was so nice to talk with her while Chevy curled up next to Katie. We spent time with our social worker, care manager, fellow, and oncologist, all of whom smiled and loved on us a little. Even one of the cafeteria workers waved at us, remembering. I was sad that there wasn't enough time to walk to the secret Starbucks with a friend who is still living there with her child, but we were happy to drive back to WV after a full afternoon of labs and meeting with Katie's team.
The plan from here is to continue with weekly clinic visits, some of which may be able to take place in Charleston. Immunotherapy infusions will occur in Cincinnati every three weeks for an indefinite period of time. For now, she does not have either a port or a picc line in place. This is great for summer as it allows for swimming and tank tops, but it means that almost all of her visits will include sticks for labs or an iv, which she utterly hates. She will also be doing physical therapy to build up her strength. Her next scans are being planned for early August.
If you see Katie around, she looks a whole lot like the Katie we all love. She may be a little thinner and has transitioned to a ball cap instead of a winter hat, but her smile is back - along with the sparkle in her blue eyes. It's really good to see that.
As you pray . . .
We have a long and arduous battle ahead of us, but we are so thankful that we finally got a major victory! We are happy to be "home."
Sarah, Chad and the rest of Cobb 7
One of the most vivid ways that God describes the church is the body. In Romans 12, Paul says that God brings believers together and makes them interdependent on one another. And when the Body of Christ is healthy, it's a beautiful thing to witness. When one part of the Body is hurting, the rest of the Body responds to provide healing.
Romans 12:12-15 - Be joyful in hope, patient in affliction, faithful in prayer. Share with the Lord’s people who are in need. Practice hospitality. Bless those who persecute you; bless and do not curse. Rejoice with those who rejoice; mourn with those who mourn.
We have had front row seats to the beauty and grace of God through His people. We have seen these verses lived out on our behalf as we have been hurting. We have received countless texts, emails, and phone calls from people who have encouraged us to remain focused on our hope in Christ through this process, who have patiently and faithfully prayed on our behalf, who have blessed our family in practical ways, and who have mourned with us through these last few months. We have been touched and humbled by the outpouring of prayer from our community and from those that are a part of the 24 hour prayer for Katie. And what's amazing to hear is that this has extended well beyond our church home, River Ridge. We're hearing from people from across the country who are praying for us and with us. That's the Body of Christ in all its splendor, and we are so blessed to be a part of it.
The last several days have been a true gift from God. We were able to celebrate Daniel's 4th birthday at the Ronald McDonald House and then went to Kings Island for the evening with aunts, uncles and cousins. On Sunday, we were able to go to church together as a family for the first time since April! That was a real joy!
Katie finished up her radiation treatments on Monday. The treatment plan has changed a little. For the present time, they are going to hold off on the more focused proton radiation so as to avoid over-radiating her lungs. It's still really early in the treatment, but the most recent scan showed that there was some response to the first dose of immunotherapy, so she has received her second dose and they have been monitoring her the last couple of days. She has continued to grow stronger each day (even went to a Train concert on Tuesday). And here's the news we've all been waiting for ... if she's still looking good at her next clinic appointment, she can COME HOME later this week!! We'll continue to go up for weekly appointments and clinic visits, but this is a huge answer to prayer - to be together as a family again!
We have been surrounded by prayer warriors and we are so thankful for those that are praying for Katie night and day. A few specific prayer requests:
1. That her next clinic appointment goes smoothly and she can finally come home.
2. Continued weight gain and strength gain in the coming days and weeks.
3. That the immunotherapy would be effective in wiping out the cancer.
Thank you to all who have journeyed with us so far, and I hope that you can rejoice as we rejoice in these gifts that God has given us.
In Christ Alone,
The Cobb 7
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