Sandwiches and Onions
I've discovered I am better in motion then being still these days. The down time is needed for us all, but in the quiet calm, I have time to think way too much. Mostly, the slow motion build up to this Stem Cell Transplant phase feels like watching someone in front of you prepare for a painful procedure and then slowly walk towards you while you sit there waiting, knowing that it's coming. Its hard to truly relax during this down time because there is this dark cloud of worry dangling out there in front of us. I dig deep trying to enjoy this time home but it's mixed with knots of anxiety in my stomach. It's strange. As much as Brian and I want time to stand still for a bit so we can soak up this time together as a family while Charlotte feels so good, we also want to hit fast forward and be done with the next 3 months during this transplant. But who would ever want to miss these sweet days together while we have them. It's such a strange feeling.
Yesterday, we got a kick in the gut. First of all, it's not something 'unexpected' as much as it was incomplete info provided to us and so our expectations were not aligned with reality. This week Charlotte has outpatient appointments every day so that the team can gather all the necessary medical info they need for Charlotte's Stem Cell Transplant. There is blood work, many medical and diagnostic tests, several big Scans, an X-ray, bone marrow biopsy, a neuropsych evaluation, and meetings with social workers and child life specialists, among several other team meetings for Brian and I. Then, she will get another break. In our meeting yesterday, I noticed the team is very good at what can be called the "Sandwich" technique. I did this as a teacher. When you need to present unfavorable information, you begin by stating something positive, then you deliver the bad/unfavorable info or news, then you close with something positive. I have started to sense it when it's coming. And they are very good at this but no matter how they buttered up each bread slice....the middle of this sandwich leaves a taste in our mouths that can not be covered up with any sugar.
So here is our sandwich:
Good news(bottom of sandwich): The team will not be putting her Broviac/central line back in until she is admitted on Sept 15. Then they will put her central line in and we will begin chemo in the isolation unit. So...she will be line/tubie free and under no restrictions until then. Yippee!
I then held my breath a little waiting for the middle of this sandwich.
Unfavorable News: (really it's a kick-in-the-gut-knock-our-wind-out-why-didn't-we-know-this-crappy-info news) When the first stem cell transplant is over, she will be discharged around Oct 9 of everything goes text book (this we knew and we also know it usually doesn't go according to textbook). However, after discharge, Charlotte can't be more then 10 minutes from Duke Childrens for 2-3 weeks after the transplant. We thought she would be coming home to recover since we live so close, but this isn't so. We will need to stay in temporary housing instead (such as The Ronald McDonald House or if we are lucky Duke will have an apartment open for us to rent). Charlotte will not be home for her 3rd birthday on October 18th. We will be apart longer as a family then we realized. If we are lucky, she could come home for a few days before her second stem cell transplant beginning Nov 15. But when that round is finished around Dec 9, we still need to stay in housing near Duke for several weeks. It is possible (we can pray!) that we can all be home together for Christmas. But it'll be cutting it close. And for certain we won't be here for Thanksgiving or our other daughter Taylor's 8th birthday. Sigh
Good News(top of sandwich): Charlotte looks awesome! Team is thrilled at how well she is doing. I asked and was able to have one procedure cancelled because it was a repeat and another appointment moved up into its slot which brought us home earlier after a long day yesterday. Charlotte appreciated that one;) We played tag outside when we got home as she screamed with pure joy running in the sunshine.
We can't focus on our false expectations. I know this. There are families there from all over the country and they've been away from their home and loved ones for months! Who are we to complain? We are so blessed to have been able to do all of this from a 30 minute drive away. Surely we can do 3 months apart. And the children will get to come see Charlotte. We can spend time together when she is able. Brian and I can still take turns caring for her. And maybe if Taylor and Parker are healthy, they could even sleep over at the apartment or Ronald McDonald house when we are there. We'll learn more about that time in recovery soon. But reality check: this can save our daughter's life! This isn't an option and its fully doable. It just requires another expectation adjustment and maybe some gratitude awareness to help spin this into a more positive light. We will have to have our game faces on for Taylor and Parker. They will have such a hard time with this.
We need to keep our eyes on the ball! I need to stop looking down field! I love football and all but sometimes my head isn't in the game we are currently playing. We need Charlotte's scans to go well this week and to reflect all that we hope they will! We need her to have minimal disease present in order to even be accepted into this next phase to begin consolidation. There are children that get to this point, and yet their cancer has not responded enough for this next phase to be possible. We believe Charlotte's has! We need these scans to confirm this AND we need all the tests to indicate she is healthy enough for what they are about to throw at her. And then, we need to focus on the stem cell transplant being a success. She needs to tolerate unimaginable chemotherapy for a toddler and then pray her body can recover via a stem cell transplant. TWICE.
Like peeling back layers of an onion, each day we seem to learn more about what is ahead: what things will look like in this next phase, how she will feel, the risks, the methods, the services that will be provided, what her needs will be, financial pieces, family life details, etc. We are currently going through orientation this week and right before admission so that we can understand everything that will happen in this next phase. This is what keeps Brian up at night, and what I cannot even picture. Yet for some reason, right here right now, all I want to do is scream and cry and hit something because after everything our little girl is about to go through, she still won't be able to come home when we thought she would. This is not the big picture Jennifer! I will get over this. We can and will do this. We can and will do anything while Charlotte is getting better. She is doing everything in her power to beat this. Surely we can turn the next 3 months into an adventure? Find ways to have fun and feel joyful while away from home for so long. Set an example for Taylor and Parker who truly, out of all of us, will have the hardest time during this phase. We are one of the lucky ones even now as I have this awful taste in my mouth from this sandwich. We are grateful for this fight. And appreciative to our team for helping us set reasonable expectations going forward. I understand how, at times, doctors give you information in stages so that you can process. Maybe for some this helps not overwhelm, but I like the full picture. And going forward, I will express this with our doctors in more detail. They don't sugar coat and I appreciate that, but I'm completely full on sandwiches. I prefer to digest everything straight up, no details are too small or unimportant.
As always, please know that your love, prayers, and kind and inspiring words continue to lift us up as we walk down this road with Charlotte. I have been low recently and many of you have helped me find my positive attitude when it slips. Thank you for that. She is and WILL KEEP doing remarkable things. I pray our next update can be to share good news regarding all her pre admissions testing and scans. This is the immediate need to focus on. We ask for prayers and positive vibes be sent for these results.
Below are some pictures of this past week: Here is this sweet smiling face having JOY just being a two year old before her world becomes 4 walls, doctors, medicine, and what we can't even imagine really for the next 3 months. But even in the bleak times, we are grateful for this fight and we can see the light if we squint into the distance. She can do this! And if she can, we can.
Yesterday, we got a kick in the gut. First of all, it's not something 'unexpected' as much as it was incomplete info provided to us and so our expectations were not aligned with reality. This week Charlotte has outpatient appointments every day so that the team can gather all the necessary medical info they need for Charlotte's Stem Cell Transplant. There is blood work, many medical and diagnostic tests, several big Scans, an X-ray, bone marrow biopsy, a neuropsych evaluation, and meetings with social workers and child life specialists, among several other team meetings for Brian and I. Then, she will get another break. In our meeting yesterday, I noticed the team is very good at what can be called the "Sandwich" technique. I did this as a teacher. When you need to present unfavorable information, you begin by stating something positive, then you deliver the bad/unfavorable info or news, then you close with something positive. I have started to sense it when it's coming. And they are very good at this but no matter how they buttered up each bread slice....the middle of this sandwich leaves a taste in our mouths that can not be covered up with any sugar.
So here is our sandwich:
Good news(bottom of sandwich): The team will not be putting her Broviac/central line back in until she is admitted on Sept 15. Then they will put her central line in and we will begin chemo in the isolation unit. So...she will be line/tubie free and under no restrictions until then. Yippee!
I then held my breath a little waiting for the middle of this sandwich.
Unfavorable News: (really it's a kick-in-the-gut-knock-our-wind-out-why-didn't-we-know-this-crappy-info news) When the first stem cell transplant is over, she will be discharged around Oct 9 of everything goes text book (this we knew and we also know it usually doesn't go according to textbook). However, after discharge, Charlotte can't be more then 10 minutes from Duke Childrens for 2-3 weeks after the transplant. We thought she would be coming home to recover since we live so close, but this isn't so. We will need to stay in temporary housing instead (such as The Ronald McDonald House or if we are lucky Duke will have an apartment open for us to rent). Charlotte will not be home for her 3rd birthday on October 18th. We will be apart longer as a family then we realized. If we are lucky, she could come home for a few days before her second stem cell transplant beginning Nov 15. But when that round is finished around Dec 9, we still need to stay in housing near Duke for several weeks. It is possible (we can pray!) that we can all be home together for Christmas. But it'll be cutting it close. And for certain we won't be here for Thanksgiving or our other daughter Taylor's 8th birthday. Sigh
Good News(top of sandwich): Charlotte looks awesome! Team is thrilled at how well she is doing. I asked and was able to have one procedure cancelled because it was a repeat and another appointment moved up into its slot which brought us home earlier after a long day yesterday. Charlotte appreciated that one;) We played tag outside when we got home as she screamed with pure joy running in the sunshine.
We can't focus on our false expectations. I know this. There are families there from all over the country and they've been away from their home and loved ones for months! Who are we to complain? We are so blessed to have been able to do all of this from a 30 minute drive away. Surely we can do 3 months apart. And the children will get to come see Charlotte. We can spend time together when she is able. Brian and I can still take turns caring for her. And maybe if Taylor and Parker are healthy, they could even sleep over at the apartment or Ronald McDonald house when we are there. We'll learn more about that time in recovery soon. But reality check: this can save our daughter's life! This isn't an option and its fully doable. It just requires another expectation adjustment and maybe some gratitude awareness to help spin this into a more positive light. We will have to have our game faces on for Taylor and Parker. They will have such a hard time with this.
We need to keep our eyes on the ball! I need to stop looking down field! I love football and all but sometimes my head isn't in the game we are currently playing. We need Charlotte's scans to go well this week and to reflect all that we hope they will! We need her to have minimal disease present in order to even be accepted into this next phase to begin consolidation. There are children that get to this point, and yet their cancer has not responded enough for this next phase to be possible. We believe Charlotte's has! We need these scans to confirm this AND we need all the tests to indicate she is healthy enough for what they are about to throw at her. And then, we need to focus on the stem cell transplant being a success. She needs to tolerate unimaginable chemotherapy for a toddler and then pray her body can recover via a stem cell transplant. TWICE.
Like peeling back layers of an onion, each day we seem to learn more about what is ahead: what things will look like in this next phase, how she will feel, the risks, the methods, the services that will be provided, what her needs will be, financial pieces, family life details, etc. We are currently going through orientation this week and right before admission so that we can understand everything that will happen in this next phase. This is what keeps Brian up at night, and what I cannot even picture. Yet for some reason, right here right now, all I want to do is scream and cry and hit something because after everything our little girl is about to go through, she still won't be able to come home when we thought she would. This is not the big picture Jennifer! I will get over this. We can and will do this. We can and will do anything while Charlotte is getting better. She is doing everything in her power to beat this. Surely we can turn the next 3 months into an adventure? Find ways to have fun and feel joyful while away from home for so long. Set an example for Taylor and Parker who truly, out of all of us, will have the hardest time during this phase. We are one of the lucky ones even now as I have this awful taste in my mouth from this sandwich. We are grateful for this fight. And appreciative to our team for helping us set reasonable expectations going forward. I understand how, at times, doctors give you information in stages so that you can process. Maybe for some this helps not overwhelm, but I like the full picture. And going forward, I will express this with our doctors in more detail. They don't sugar coat and I appreciate that, but I'm completely full on sandwiches. I prefer to digest everything straight up, no details are too small or unimportant.
As always, please know that your love, prayers, and kind and inspiring words continue to lift us up as we walk down this road with Charlotte. I have been low recently and many of you have helped me find my positive attitude when it slips. Thank you for that. She is and WILL KEEP doing remarkable things. I pray our next update can be to share good news regarding all her pre admissions testing and scans. This is the immediate need to focus on. We ask for prayers and positive vibes be sent for these results.
Below are some pictures of this past week: Here is this sweet smiling face having JOY just being a two year old before her world becomes 4 walls, doctors, medicine, and what we can't even imagine really for the next 3 months. But even in the bleak times, we are grateful for this fight and we can see the light if we squint into the distance. She can do this! And if she can, we can.
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| After some sprinkler fun. Look at the confidence in her eyes |
 Playing with her best buddy and brother, Parker |
| Add caption |
Thank you to whoever sent us this new sprinkler!
Sprinkler fun with her best friends
More water play while we can!
Celebrating Poppy's 707th birthday. Ha!
Aloha zoo with Nana Schuey and Poppy
Feeding a rescued Giraffe, stretch
Cuddling for family movie night
Enjoying their own creations: homemade popsicles
After church festival: Charlotte either needed some candy or needed to hit something:) She was the littlest one out there. "Me too?" Yes sweetie, you can have a turn too
First bath since mid March
Sisters
Taking a break from playing tag after half a day of hospital appointments
Praying for Charlotte
ReplyDeletePraying for Taylor and Parket
Praying for You and Brian
F.R.O.G.
LY
Pops
Beautiful pictures! God bless you all as you go through these upcoming months. You will get through it and we are all with you! Love you all xoxo
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