Sunday, September 27, 2020
Treatment #2 coming up...
Friday, September 4, 2020
Prayers and Praises...
Quick updates and prayer requests: so many have asked how Andrew is doing... thank you for your prayers and concern!
Prayer request- Grace has a cardiologist appointment TODAY. Long before we experienced scanxiety with Andrew, we knew echoxiety all too intimately. you see, Grace has had 6 open heart surgeries to date (4 out of the 6 were at Boston Childrens Hospital). We have walked into an appointment thinking things were ok and walked out either scheduling surgery or being admitted directly to the hospital which led to an emergency surgery, so we never feel like Cardiology appointments are just “routine” visits. Although, it’s a great opportunity to reflect back on ALL that the Lord has so graciously brought us through.... especially the fact that we were blessed to celebrate Grace’s 8th birthday last week!!! Will you please pray that Grace’s heart looks healthy and there are no surprises at her appointment today?
Grace started virtual school and David gets the award for the best 2nd grade teacher EVER! We continue to watch the covid trends and pray that Grace can go to face to face school in a couple weeks (assuming trends stay reasonable). She’s SO eager to get back to face to face school and I think the best 2nd grade teacher ever could use a break too🤣!
Praise the Lord, Andrew has felt great since day 6 or 7 after treatment and here’s the miraculous part... his hair is still hanging on. Y’all, I’m in absolute disbelief! I can tell his hair is breaking off some, but he hasn’t really noticed and unless you look closely you wouldn’t even be able to tell that it’s “different.” I’m certain this is absolutely an answer to prayer! Now, it could still certainly fall out in the days and weeks to come and on subsequent treatments, but for today... we rejoice! Andrew is loving school and he’s been more motivated than I’ve ever seen him to get his homework done everyday, study, etc. Another huge praise. Will you please pray he can stay up to speed with school since he will miss a week + of school every couple months for scans and treatments? His next scan is on Sept 30th and treatment is scheduled for Oct 1st. Please pray the scans reveal awesome results, that we can better manage his nausea this time around, and that we all weather the separation well.
1st color out day at Poly Ryon Middle School!
Abby is loving Logo’s (the private school she goes to) and we love that she’s still home with us two days a week. She’s a happy camper and so are we that soccer games are back in full swing. It’s a sense of “normal” that our whole family enjoys.
Thanks so much for your prayers!!! Please keep me coming!!! #butGod #fightlikeaRoss #hopeon 💚
Sunday, August 23, 2020
2020-2021 School Year 1.0
It’s hard to believe that school starts tomorrow... I seriously can’t wrap my mind around it and I hardly feel prepared, but we have full confidence that God’s got great things in store for the Rosslings and the rest of your kiddos this year. It’s certainly going to be different, maybe even uncomfortable and probably super frustrating at times, but we are praying we can see God’s hand in the details (a prayer He’s always faithful to answer). Here is an update on the Ross Family shenanigans....
*Andrew Update- He had 5-6 pretty rough days after his first round of treatment. He was SUPER nauseous around the clock, but I couldn’t be more proud of his attitude and character through it all. He’s dreading treatments 2-4 because of the nausea, but we are praying that with some additional nausea meds (one is an antipsychotic and the other is a steroid... who would have thought those would help with extreme nausea🤷♀️?!?!), it will be more to tolerable. Based on what the handful of adults have experienced with this treatment, Andrew should start losing his hair this week... just in time for school. Will you please pray for that situation? Please continue to pray that this new treatment is busy obliterating every single cancer cell in his body and that it stays gone... FOREVER (we continue to hang on to hope that God can and He will... until He says otherwise)!
*School- Many have asked what we are doing with our kiddos for school during the pandemic. It’s easy to judge the decisions others make, but I pray people will consider the fact that God calls each of us to seek His will (which could be, and likely is, different for different families) and be willing to say “yes, Lord” to what ever He calls us to... even if it’s scary, inconvenient, or even unpopular. We have prayed long and hard about what’s best for the Rosslings and consulted Grace’s cardiologist, Andrew’s Oncologist, and many other experts that we highly respect. We have come up with what we feel is a great plan A and plan B and we are beyond grateful that the kids' schools/administrators are beyond supportive in ensuring our kids are safe physically, yes, but mentally and emotionally too.
Andrew REALLY wants to experience Poly Ryon, the 6th grade campus that is literally famous because it’s the most AMAZING public school ever! Andrew yearns to feel “normal” and going to school in person (especially at Poly Ryon) is a great way to accomplish that. He will miss two weeks of school ever two months anyway for treatment, so in person school will hopefully be a blessing in between his treatments and time of isolation (when he's radioactive).
Grace will start virtual school initially and we will monitor the Covid rates. If the rates are reasonable in 3-4 weeks, we would LOVE for her to transition to in person school because GRACE LOVES, LOVES, LOVES SCHOOL and she thrives there in so many ways!!!! From her typical peers/precious friends to the incredibly kind, creative, and brilliant teachers who know the balance between setting the bar high for this kid because she's so smart and such a hard worker, but yet making sure to modify where necessary to help her learn concepts in a way that makes most sense for her style of learning... Grace really thrives at school, so we pray she can get back on campus sooner than later. Trusting God will make each step clear, just as He always has.
Since Grace will be learning virtually and Andrew will have treatment (Lord willing) every two months until February, David will not be going back to work at The Tenney School at this point (they have been SO supportive over the years... taking what ever time David can commit to based on our family's needs and circumstances).
Abby will be going to Logo’s again this year. It’s a Christian University model school, where she goes in person 3 days a week and works from home 2 days a week. This school has been a perfect fit for her in so many ways. They already had very small class sizes and this year they will be even smaller class sizes, due to covid, so we feel good about the precautions that have been put in place by both Abby's school and our public schools.
Mom and daughter, back to school mani and pedi. Both Abby and I's looked GREAT for a couple hours.... this is why we don't routinely get our toes and nails done, they can't handle soccer and the barn life 😂.
*Activities that are a little glimpse of normal...
Soccer scrimmages have started back up and league play is suppose to start Labor Day weekend for Abby! Man, it is SO nice to have a sense of normalcy... I knew we loved watching our girl on the pitch, but this rona thing has reminded us how precious some of the things are that we may have taken for granted. While Abby never really took a break from soccer, that kid is always at extra trainings, the fields with David, etc... we have missed real games!
Anyway, the second we are uncomfortable with in person school (for and any and all of the kids), our plan B is to have all the kids move to virtual learning.
*Andrew’s arm is healing SO SUPER slow (likely because of all the radiation his little body has seen), so he’s still in a removable cast. Therefore, he hasn’t been able to practice obstacles with Otto in preparation for the Obstacle Course challenge he competed in this past weekend. He really wanted to participate in the competition, even though he hasn’t been able to practice until this past week and he only has one arm to work with. I kept praying that God would help him feel successful (you know how a momma’s heart works... he’s experienced so much hardship and disappointment lately, I just didn’t want him to be let down AGAIN). I was so nervous for him, but by God’s grace... he and Otto went out there and crushed it. We couldn’t be more proud of him for his courage, willingness to take (calculated 😬) risks, and for reading his horse so well to help them be successful.
We celebrated with the cousins last weekend by playing Grace's favorite game EVER... America Ninja Warrior! In fact, if you ask Grace what she wants to be when she grows up, she would say "an American Ninja Warrior girl!"
If you haven't seen this book, please check it out... its precious!
This was her interview on how she prepared for the race!
Being announced... "in the turquoise bathing suit, we have GRAAACE ROSSS!"
We celebrated these Birthday Buddies with my parents today! Just because David was born on August 30th... 3 days away from Grace, he has the title of her "Birthday Buddy" and that trumps all other "Buddies" in the house! She is obsessed with her "Birthday Buddy" 🎂.
"Scar Buddy" (Andrew- they both have scars from major surgery... Grace from 6 open heart surgeries and Andrew on his belly from surgery to try to remove some tumors), "Sissy Buddy" (Abby- that's an obvious one), and "Earhole Buddy" (me- we both have what looks like a tiny hole in this random part of our ear) are always trying to knock David off the podium and be Grace's favorite "Buddy," but he's virtually impossible to dethrone, but we won't quit trying because "Rosses never give up!"... that's what Grace says anytime she does something scary or hard.😂
We appreciate every single one of you! Praying that you will see God's hand in the details of your week and that you would experience His perfect peace, hope that doesn't disappoint, and that you would know that you are deeply loved. #butGod #hopeon #fightlikeaRoss 💚
Thursday, July 2, 2020
You Can't Make This Stuff Up
These three prayers tend to be my daily plead with the Lord because let's face it, without God's divine intervention it would be all too easy to be overcome with the uncertainty and depravity of this world we live in.
*"Lord, please help me to see myself, others, and my circumstances through your eyes." It's far too easy to view life through our own fleshly eyes that can be full of doubt, fear, envy, selfishness, confusion, disappointment, discontentment, entitlement, and misplaced affections (making people or things little gods in our lives.
*"Lord, will you please align my heart and mind with your will?" I feel like over the past 17 years, but really intensely over the past 8 years, we have had to make decisions that could literally mean life or death for two out of three of our babies (Grace or Andrew). From the lack of peace we had about how our local children's hospital wanted to handle Grace's very broken heart and the way the Lord lead us across the country to Boston for Grace to have what was a very risky set of surgeries with the hope of a better long term prognosis to Andrew being diagnosed with an exceptionally rare form of cancer that doesn't come with any sort of protocol or pathway, especially not in children. I'm passionate about shared decision making between patients and their care team (you should always feel like an integral part of your child's/your care), but if I'm honest, there are times when I feel an overwhelming sense of responsibility, power, or influence that is waaaay above my pay grade. Since there isn't any evidence available in children with stage 4 pancreatic neuroendocrine tumor (because there are less than a handful of kids that have this type of cancer and I don't know any that are Andrew's age and with his burden of disease... meaning as much disease as he has), it's on us to make BIG decisions around Andrew's care (it was a similar situation with Grace... there had only been one child like her to have the same type of surgeries we were considering), so the last thing we want is to make any decision in our own strength, we need to make sure we hear from the Lord SO clearly! Again, He has been so faithful to answer this prayer in big and small decisions, so we will continue to pray for His perfect wisdom and provision, trusting in His faithfulness because that's the only way we know how to do it. He hasn't left or forsaken us yet, so we trust He won't start now.
*"Lord, help me to see your hand in the details..." I feel like Moses when he told God, if you're not going, I won't go. Seeing God's hand all along the way gives us the peace and comfort we need to put one foot of faith in front of the other. Often times the way God shows us His hand is through y'all! We can't stop thanking you for ALL the ways you stand in the gap for us! There is never a comment, text, email (even if I'm not timely in responding), words spoken, or act of kindness that goes unnoticed or unappreciated.
Update on what we've been up, unexpected twists and turns, and what lies ahead (at least from today's vantage point):
-Andrew has had a great attitude about his broken arm, but it's been super hard not being able to ride Otto, go swimming, ride his bike, etc. He has his next orthopedic appointment on Tuesday next week, so we are praying his bone is healing perfectly aligned and he can get a shorter, waterproof cast on. Will you please join us in praying for that?
We weren't able to go to Pine Cove Family Camp this year because of Covid 19 and the risk it poses to Grace and Andrew, so we were planning to go to Oregon with precious friends in a few weeks. We were hoping it would serve as a giant blessing for Andrew (and the rest of the family) before Andrew embarks on his next round of treatments.
WELL, that was the plan until we learned that David and I had been exposed to someone with COVID 19. We both went to get tested out of an abundance of caution and......................................... I tested negative and David tested positive :-(. We then had all 3 kids tested and PRAISE THE LORD, they were negative. The timing of this COVID 19 exposure means that we can no longer go to Oregon. The kids were obviously devastated that we won't be going to Oregon (they were SO looking forward to it), we can't go to the barn for a bit, and Abby certainly had a lot of tears about about having to miss two weeks of soccer training (she's obviously still finding ways to train at home, but I'm sure it's not the same as her 3 hour training sessions at TTi). Will you please pray that the kids and I will stay safe from getting COVID 19 (David is wearing a mask and trying to stay away from everyone as much as possible)? Will you please pray for an extra measure of strength and endurance for me (trying to work and be the primary caregiver is no easy task) and the kids (the big kids have been so helpful with Grace and taking care of each other, and Grace has had such a great attitude about it too)? Will you please pray that we can find another way to take a family adventure before Andrew's treatment (more on that in a minute)?
All that to say, it's been a rough 5 days so far, but we have seen God's hand in the details. We talk a lot in Ross household about having an attitude of gratitude, so here are the blessings we are grateful for in the midst of disappointment and exhaustion-
-Abby to the rescue... I was feeling so weary and broken on Monday night because I feel like our poor kids just take one hit after another in life (I know that's where their grit and resilience comes from, but it's gut wrenching as a parent to have to watch your kids constantly take a beating and know there's nothing you can do to take away their pain). I gave the kids the best game time pep talk I could muster up, trying to help them fix their eyes back on Jesus (see this through His eyes) and we prayed together before I went to my room to have a quick cry. I walked out after having gotten myself together and Abby handed me my phone and said "I think someone texted you." I looked at my phone and here is the text I found... I'm sharing this with you in case it ministers to you too.
more reasons to be grateful...
-The kids have been SO helpful and selfless through it all (so far), especially Abby.
-I've loved getting to lift weights with Abby at home.
-Grace continues to love playing make believe with Andrew, watching/practicing American Ninja Warrior, reading, playing card games, frozen monopoly, and going for a run with me (or Abby) around the block.
-Andrew's pain has been well controlled (praise the Lord) despite the fact that we know his disease is progressing.
-We have always wanted to rent an RV and we are going to try to make that happen instead of Oregon. The kids are beyond excited about this possibility, so please pray that if it's the Lord's will, it will all work out to be able to squeeze a fun filled trip in before Andrew's treatment.
Speaking of treatment (a lot of you have asked about the details, so here goes)... we continue to praise the Lord for making a way for this Alpha Therapy (so many miracles already revealed in the timing, location, and approval of this treatment) and pray that the Lord carries us through all the nuances... it's starting to get real!!! UPDATE- We got a call from Andrew's treatment facility that the radiation manufacturer had to push back when they will have Andrew's dose available, so his new date for treatment is August 6th. He will have 2 days worth of scans and labs and we have a meeting with his Dr's for a consultation, to sign consents, etc that same week. Lord willing, he will get his first dose of radiation treatment on August 6th, then he and David will leave the clinic where he is treated and stay at a hotel that night, return to the clinic the following day for more scans, and then head to David's parents house where they will live upstairs for a couple nights and then go camping for a couple nights before returning home. After Andrew receives a round of treatment, he has to stay away from Abby and Grace for 4-5 days and we (adults) have to stay a meter away from him at all times because he's radioactive. He has to have his own bathroom, flush the toilet 3 times, we have to bag up any clothes or toys he plays with and put them aside for 2 weeks to allow time for the radioactivity to biodegrade off. In terms of the side effects he will likely experience, he will likely have a rebound of pain from the tumors being radiated, nausea/vomiting, fatigue, and his hair will fall out a good bit. It sounds like he won't be bald, but he will have very heavy "shedding" which will likely make him want to shave his head. Will you please pray all of these side effects are minimal or even non existent? Andrew isn't excited about losing his hair, especially upon entering a new school/campus (he will be going into the 6th grade, which is the most AMAZING school ever, so I know he will be in good hands, but it will be much different than the precious elementary school bubble he's use to). Above all, will you PLEASE pray that this treatment literally eradicates every single cancer cell in his body? The results in the 7 adults that have received this therapy are pretty astounding, however, what we don't know is how long these results last, long term consequences of the treatment (especially in a child), etc, but the good news is that God knows and this story is His to author, so we will continue to pray and hope for a miracle. THANK YOU for being such faithful prayer warriors!!! Your prayers mean everything to us!!! #fightlikeaRoss #butGod #hopeon
Friday, March 27, 2020
Quarantine and a New Quest...
***Andrew would love to be able to sell raffle tickets in person, but obviously the quarantine makes that impossible, so that's why we are all virtual. Thank you for your understanding and support!