Miles and Kenna
Once again, I come to you with a prayers request. We do not know these children personally nor their families. I have gotten to know their little warriors a little bit through an online Neuroblastoma parent support group and how could my heart not be breaking as I witness what is quickly unfolding as their little warriors fight for their lives. I will post a brief description and photo so you can place them I. your hearts and lift them up and join our voices in asking God to please help these babies. I cannot stop checking their updates and thinking about them as both had traumatic events happen very quickly this week and out of the blue.
Miles is about Charlotte’s age. I had messaged with his mom a handful of times over past couple months as they are in transplant and naturally have questions that some of us who have been there might be able to help answer. Sometimes, in this online group of parents who band together and help each other, we are merely an empathetic ear for each other. How strange to bond with other families from all over the world without ever meeting. And to truly grieve at heart breaks. It astounds me. Miles is recovering from his second transplant, just like Charlotte did about this time last year. I remembering answering some of her questions about our own experiences during this part of treatment. As I followed Miles, things started to look familiar. He started desaturating and requiring oxygen just like Charlotte did. But his CT image made the doctors worried he could have a fungal infection in his lungs. They wanted to do a brochioscopy. We remember that conversation with our own doctors and Brian and I agreed only as a last resort. Thankfully, Charlotte took a turn for the better and we never needed to go that route. Miles has not. He had the bronchoscopy which revealed RSV infection. Basically a really bad cold. But he is not recovering. His oxygen levels in his blood continued to decline and he went on an oscillator. When that didn’t help, yesterday, the team put him on ECMO, life support, in an effort to have his lungs completely rest and help them recover. I cannot even go there in my head. This hit home. Brian and I remember our fears when Charlotte’s lungs showed damaged after her second transplant. All the chemo she had received and her bone marrow trying to engraft. She already had a rhino virus (cold) and we worried it could develop into a serious lung infection. Those of you who have followed her all this time probably remember those days. Our pleading and praying. It’s hard for me to go back into those days in my mind because it was so scary. And yet we didn’t live those serious fears out into reality. However, very suddenly, Mile’s parents are. They are watching their baby boy, who has almost beaten cancer, lie there on life support from treatment complications. Treatment that was required for him TO live. And there they are, standing there, feeling like they are in the background screaming out in disbelief. Wondering how could this be happening? And waiting. Waiting to see if Miles can make the turn. Waiting to see God’s will. Trying to understand it. How can we understand any of this. And I type this with tears. Tears for a boy I do not know. For a family I never met. And I wonder...how many of you out there had felt the same for our Charlotte and our family. Somehow, God is weaving hearts and lives together I think. It’s the only way I can make sense out of any of it. Please pray and raise Miles up. Please God, help this little playful and brave boy recover from this. Please let us bare witness to your strength as you work miraculous healing through his medical team. And thank you all for praying for Miles. I’ll update as I learn.
Little Kenna reminds me of Charlotte. Something about the expression and knowing look behind her eyes coupled with this sweet smile. She was going through Immunotherapy, the final phase of frontline treatment. She has peach fuzz growing back on her little head. Suddenly her foot was hurting her. Dr thought maybe growing pains? They wanted an X-ray. Results showed a lesion in her bone. Follow up scans revealed a relapse and also a large mass on her liver. Biopsy revealed it is a large tumor that although did not light up on the MIBG, is in fact aggressive Neuroblastoma. She is barely lucid due to pain management. And yesterday they put her on an ocillator to help her breathe. They hope to get her ready to begin a hard cocktail of chemo to combat this agressive cancer that has quickly taken over. I mean it was just last week she was complaining of some pain but living her life. This disease seems to have the ability to sneak back with vengeance without rhyme or reason. I am completely terrified when I hear these stories and have had to ask myself if maybe I shouldn’t be following this parent support group so closely. I did take a break in December as I recognized I needed to. But, then there is a part of me that can’t bare turning my back away just because Charlotte is doing well. At the moment, we are thankfully not the parents asking these tough questions. We are still learning about what could be next for our girl. About other treatments, and long term complications and survivorship issues. And we are, of course, not out of the woods nor will she be for several more years to come. We know this. But then there is Kenna and Miles and dozens of other children, some of whom we have met up in NY where we go for the clinical trial Charlotte is on. And I begin to follow their stories. And I begin to care about these people. Following them becomes a daily /weekly routine. They can lift me up or bring me to tears. They inspire or bring heart break. Is that was it was, what it is, all of you who follow Charlotte?
Brian and I have asked ourselves this question many times over the last year and a half. What is our role? Where? What is God’s plan for us in this new world we have found ourselves in? Besides doing everything in our power to A)heal Charlotte B)keep our family together...where are we meant to go? Where are you leading us? And we are still asking ourselves these questions today. We are still trying to learn what we should do with the gifts God has and IS giving us. God, we want to give back and make a difference in whatever way we are able. What will you have us do?
But for now, all we know how to do is pray. And learn. We pray for our Charlotte. And we pray for all of those Charlotte’s out there fighting. And we pray for God to continue to lead us to where we are meant to go. And at this very moment in time, as we watch a happy healthy Charlotte play and learn and grow, we in turn have found some very tender spots in our hearts for some other families who need Charlotte’s amazing village of prayer warriors. Thank you for continuing to pray for Charlotte, and for all these other little “friends” who have touched our own hearts as they battle the unimaginable.
P.S. Riley Rose Update: her family was able to take her to her first ever day of Kindergarten. She has an abbreviated day and modified schedule...but she’s doing it. And she feels like she is living out a fairy tale. Simply going to school and being around peers is her dream come true.
P.S. because I want to get the prayer request for Miles and Kenna our ASAP, I will come back to update this post with a picture of these warriors. The app isn’t cooperating right now but I always think it’s helpful to have a face with a name as I pray. Thank you all so much for pausing to pray for them. I have seen the amazing power of prayer. I believe and so do these families who appreciate all of our prayers.
Miles is about Charlotte’s age. I had messaged with his mom a handful of times over past couple months as they are in transplant and naturally have questions that some of us who have been there might be able to help answer. Sometimes, in this online group of parents who band together and help each other, we are merely an empathetic ear for each other. How strange to bond with other families from all over the world without ever meeting. And to truly grieve at heart breaks. It astounds me. Miles is recovering from his second transplant, just like Charlotte did about this time last year. I remembering answering some of her questions about our own experiences during this part of treatment. As I followed Miles, things started to look familiar. He started desaturating and requiring oxygen just like Charlotte did. But his CT image made the doctors worried he could have a fungal infection in his lungs. They wanted to do a brochioscopy. We remember that conversation with our own doctors and Brian and I agreed only as a last resort. Thankfully, Charlotte took a turn for the better and we never needed to go that route. Miles has not. He had the bronchoscopy which revealed RSV infection. Basically a really bad cold. But he is not recovering. His oxygen levels in his blood continued to decline and he went on an oscillator. When that didn’t help, yesterday, the team put him on ECMO, life support, in an effort to have his lungs completely rest and help them recover. I cannot even go there in my head. This hit home. Brian and I remember our fears when Charlotte’s lungs showed damaged after her second transplant. All the chemo she had received and her bone marrow trying to engraft. She already had a rhino virus (cold) and we worried it could develop into a serious lung infection. Those of you who have followed her all this time probably remember those days. Our pleading and praying. It’s hard for me to go back into those days in my mind because it was so scary. And yet we didn’t live those serious fears out into reality. However, very suddenly, Mile’s parents are. They are watching their baby boy, who has almost beaten cancer, lie there on life support from treatment complications. Treatment that was required for him TO live. And there they are, standing there, feeling like they are in the background screaming out in disbelief. Wondering how could this be happening? And waiting. Waiting to see if Miles can make the turn. Waiting to see God’s will. Trying to understand it. How can we understand any of this. And I type this with tears. Tears for a boy I do not know. For a family I never met. And I wonder...how many of you out there had felt the same for our Charlotte and our family. Somehow, God is weaving hearts and lives together I think. It’s the only way I can make sense out of any of it. Please pray and raise Miles up. Please God, help this little playful and brave boy recover from this. Please let us bare witness to your strength as you work miraculous healing through his medical team. And thank you all for praying for Miles. I’ll update as I learn.
Little Kenna reminds me of Charlotte. Something about the expression and knowing look behind her eyes coupled with this sweet smile. She was going through Immunotherapy, the final phase of frontline treatment. She has peach fuzz growing back on her little head. Suddenly her foot was hurting her. Dr thought maybe growing pains? They wanted an X-ray. Results showed a lesion in her bone. Follow up scans revealed a relapse and also a large mass on her liver. Biopsy revealed it is a large tumor that although did not light up on the MIBG, is in fact aggressive Neuroblastoma. She is barely lucid due to pain management. And yesterday they put her on an ocillator to help her breathe. They hope to get her ready to begin a hard cocktail of chemo to combat this agressive cancer that has quickly taken over. I mean it was just last week she was complaining of some pain but living her life. This disease seems to have the ability to sneak back with vengeance without rhyme or reason. I am completely terrified when I hear these stories and have had to ask myself if maybe I shouldn’t be following this parent support group so closely. I did take a break in December as I recognized I needed to. But, then there is a part of me that can’t bare turning my back away just because Charlotte is doing well. At the moment, we are thankfully not the parents asking these tough questions. We are still learning about what could be next for our girl. About other treatments, and long term complications and survivorship issues. And we are, of course, not out of the woods nor will she be for several more years to come. We know this. But then there is Kenna and Miles and dozens of other children, some of whom we have met up in NY where we go for the clinical trial Charlotte is on. And I begin to follow their stories. And I begin to care about these people. Following them becomes a daily /weekly routine. They can lift me up or bring me to tears. They inspire or bring heart break. Is that was it was, what it is, all of you who follow Charlotte?
Brian and I have asked ourselves this question many times over the last year and a half. What is our role? Where? What is God’s plan for us in this new world we have found ourselves in? Besides doing everything in our power to A)heal Charlotte B)keep our family together...where are we meant to go? Where are you leading us? And we are still asking ourselves these questions today. We are still trying to learn what we should do with the gifts God has and IS giving us. God, we want to give back and make a difference in whatever way we are able. What will you have us do?
But for now, all we know how to do is pray. And learn. We pray for our Charlotte. And we pray for all of those Charlotte’s out there fighting. And we pray for God to continue to lead us to where we are meant to go. And at this very moment in time, as we watch a happy healthy Charlotte play and learn and grow, we in turn have found some very tender spots in our hearts for some other families who need Charlotte’s amazing village of prayer warriors. Thank you for continuing to pray for Charlotte, and for all these other little “friends” who have touched our own hearts as they battle the unimaginable.
P.S. Riley Rose Update: her family was able to take her to her first ever day of Kindergarten. She has an abbreviated day and modified schedule...but she’s doing it. And she feels like she is living out a fairy tale. Simply going to school and being around peers is her dream come true.
P.S. because I want to get the prayer request for Miles and Kenna our ASAP, I will come back to update this post with a picture of these warriors. The app isn’t cooperating right now but I always think it’s helpful to have a face with a name as I pray. Thank you all so much for pausing to pray for them. I have seen the amazing power of prayer. I believe and so do these families who appreciate all of our prayers.
We met so many families during our days at CHOP...so many children fighting unbelievable battles... :-( OF course we will RAISE and pray for Miles and Kenna. Hang in there! XOXO
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