I've been remiss in keeping this blog up to date with all our summer adventures, but we just passed another cancer milestone so I wanted to give an update. Jonathan went in last week for another ultrasound and bloodwork. Everything was great! No sign of cancer. Now that he's essentially 18 months off treatment, he's considered at no risk for the cancer to recur. Praise God!
I can't begin to describe how relieved we are. We have some dear friends whose daughter relapsed with leukemia right at their "all clear" milestone so I always held a little kernel of fear that we might have a last minute relapse. The ultrasound tech was a little rougher with Jonathan than what we usually experience so when his oncologist said that we're probably done with ultrasounds he got really excited that he won't need "pictures" again. We will continue to see our oncologist for good while. Our next check-up is in 3-4 months and the visits will continue to space out. We're shifting more towards monitoring long-term chemo side-effects since the risk for cancer is largely behind us. A couple of the chemos can cause significant heart damage so that's something they're keeping their eye on. He's had heart echos a few times and everything has been perfectly normal. Beyond that, we're just adjusting to life with a kindergartener! He just turned six and we had a family party and then a friend party a couple weeks later. He's really enjoying his new school adventure. I ask him what his favorite part of school is and his answer is recess and computers. ;) He's only doing half day kindergarten (all that Colorado provides by default) and has been asking if he can please go all day instead so he must be enjoying more than just recess. His school provides lots of parent volunteer opportunities and I got to be in his classroom on Monday helping with reading centers. I look forward to more opportunities to observe my kiddo "in the wild". Clara is at pre-school two days a week and loves it. Every day she asks if its a school day for her as we drive brother to school and is disappointed when its not her turn. We have her in gymnastics right now and she really enjoys that. She sure loves her brother. She usually tags along on his doctors appointments and will try to give him hugs when he's upset after a blood draw. He got particularly worked up at this last appointment and as I held him still for the blood draw I glanced over and saw her crying big tears along with her brother to see him upset. She's such a compassionate little thing. Thank you for going along on this journey with us. We could not have endured without God's faithfulness and your prayers. I'll try to do better at updating this with our family adventures so you can continue to see God working in all of our lives and especially in the walking miracle that is Jonathan. God bless you!
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So April 11 is our one year mark off treatment but Jonathan had another doctor's appointment today that showed no evidence of cancer so I'm going to go ahead and claim the 1 year remission title! They did an ultrasound of his belly where all the tumors were in his lymph nodes and they were completely clear. He will have a quick check-up at the end of April and then another ultrasound and battery of tests in August and will be considered "cured" at that point. We'll continue to get scans every 6 months for the next 3 years but it feels amazing to be almost closing the door on this incredibly difficult time in our lives. We give God all the credit and all the glory for sustaining us through this ordeal.
I think everyone touched by cancer wants to find a way to help others through their experiences. I've found myself being able to encourage and help people who have lost parents to cancer (my dad has been gone for 7 years now). We haven't found our outlet yet to help with pediatric cancer patients. Both Jonathan's cancer and my dad's cancer fall into the blood cancer category and the Leukemia & Lymphoma Society is a great organization to raise awareness and funding for research. My older sister has participated in many races and triathalons with Team in Training which is a fundraising branch of the Leukemia & Lymphoma Society. There's a fundraising walk in Denver that we've decided to participate in this fall. It's called Light the Night. Our whole family will walk. Jonathan will carry a white lantern as a survivor and I will carry a gold lantern in honor of my father who lost his battle. Supporters carry red lanterns. If you want to support our "team" and give a donation, here's our donation page: http://pages.lightthenight.org/rm/DenverL17/BeatBurkitts No pressure at all to donate, but if you'd like to support this great cause, here's a way to do it. Thanks again for everyone who has followed our journey. We're incredibly grateful to have a child who has recovered so beautifully. If you didn't know he'd been through it, you'd never guess he'd been sick by watching him play and interact with friends. He talks often about his cancer and most often talks about all the great toys he got in the hospital and how many people were praying for him. I asked him the other day if he remembers the "yucky" parts of it....of feeling sick, of spending time in ICU and not even having the strength to walk. He says he doesn't. One of my prayers during the darkest days was that his little spirit would come out unscathed...that this would not be a traumatizing experience that left him with emotional scars. I'm so pleased that God has answered that prayer. Jonathan is a fairly sensitive child yet has come out the other side a joyful child with no fear of the hospital he spent so much time in. To God be the glory! I've been negligent in posting updates lately. I suppose its because thankfully there isn't much to report. January 9 was our "cancer-iversary". Our diagnose date, one year ago. Looking back at all that he went through (and Facebook "helpfully" reminds me with memories), I continue to be in awe of what God sustained us through. Thank you again for all of you that walked with us in the valley and prayed for us and encouraged us with notes, texts, meals, and other great acts of service.
Jonathan continues to do well. He had another series of ultrasounds the last week of December on his belly (where all the tumors were) and it continues to be clear. He has some scar tissue on his liver but thankfully no evidence of any new cancer. They ran a full blood panel last week. His basic blood counts were completely normal. They did a ton of tests looking at his antibodies and other details of how his immune system is doing. I haven't received a call yet with official results but I've seen some of the results being posted to our patient portal. His immune system isn't back to full strength yet. They're looking at his antibodies to all the childhood vaccines he's had and he may need to be re-immunized to some of them. The chemo did such a great job knocking down his immune system that he may have lost the antibodies gained through vaccines. Other than that, Jonathan is continuing to grow and thrive. The doctor showed me his growth chart. Before he got sick, he was always around 90% height. During his treatment and afterwards, he fell off his curve down to almost the 50% height. Every month he's grown and he's close to being back on the 90% line. His weight remains a little low but its normal for him...both my kids have always been in the tall/skinny camp. We're getting out and fully enjoying our "first" Colorado winter. We've been through one but just watched it out the window of the hospital. The kids love playing in the snow. We think we'll wait another year before introducing them to skiing. They will re-run basic blood tests next month. March will be another series of ultrasounds. April will be our 1 year of remission mark! Then our monthly check ups start spacing out. Every month we get further into remission, the odds of the cancer coming back are dropping. The magic mark at which the cancer can't come back is between 15-18 months so we're getting closer to that. Our trust, though, is not in doctors and statistics but in God. If the cancer returns, we know that God will be faithful to walk with us and sustain us again. The last few months have brought loss and new life to those we love. We lost an amazing woman who stood in the gap for our family throughout the treatment. She was on a plane and in our home watching our daughter within a day of Jonathan's diagnosis. I shed a lot of tears at her celebration of life service but with grief, I also find myself focusing on gratitude that she was in our lives. "The Lord gave and the Lord takes away, blessed be the name of the Lord." Job 1:21 Another dear friend is unexpectedly pregnant and we rejoice with her in the new life she's carrying. Its easy to get caught up in the turmoil and hand wringing going on in our country over the new president. Yet God continues to remind us that He is in control. Bad things will happen. Joyful things will happen. Throughout it all, we place our trust in our Savior, Jesus Christ. So I leave you with this verse of encouragement, Hebrews 4:15-16 15 For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. 16 Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. God bless you! Its the "grateful" time of year where most people take a little time out to consider their blessings and what they're thankful for. For the last month I've been overwhelmed with feelings of gratitude. As we hit the 6 month mark of Jonathan's cancer being in remission, the enormity of what we went through and what we were able to endure with God's help continues to sink in. I hold Jonathan and Clara tight at every opportunity and just praise God that our family is restored. It could have so easily been a different outcome. If I'd waited just another day or two to take him to the doctor, his cancer could have spread to his bone marrow or spinal column. We tell people that he's our miracle child and that is no exaggeration.
I was struck too about the gift of faith that God has given my family. We talked with a friend recently who said that our faith and transparency during Jonathan's illness was a real inspiration to her. I can't take credit for any of that. We cried out and shared our pain and our hurt via our website because we needed that lifeline of prayer and encouragement. We had dark moments of doubt and fear but we had moments of clarity and the peace which surpasses all understanding as well. That was a gift from God. We didn't pull ourselves up by our own bootstraps. We cried out to God and He answered. If our outcome had been different, I pray that we could still stand today and say that He is good. I lost my dad to cancer almost 7 years ago. God is good. We lost Jeff's mom to cancer when I was pregnant with Jonathan. God is good. I leave you with a picture of Jonathan we never shared. This was right after he was admitted to the hospital. He was in ICU and they decided to keep him sedated after a biopsy until the results came back in case they needed to take another biopsy. He wasn't handling anesthesia well because the tumors in his belly were so big, they were pushing against his diaphragm and making it hard to breathe. So they thought it was safer to just keep him under until they knew they had everything they needed to diagnose his cancer to be able to start treatment. Jeff stayed with him in the ICU that night and I remember walking out to the parking garage and just sobbing and begging God to preserve His life, to not let my precious child die. God was present in that moment of panic and fear. Not only is Jonathan physically restored but his personality and spirit show no signs of trauma. He talks matter of factly about if the cancer comes back that he'll get lots of toys and legos when he has to stay in the hospital again. He tells people thank you for praying for him, because God made him better. He isn't traumatized by what he went through. He's come out the other side as an optimist. I encourage you to take all your pain, all your sorrow, and all your hurt to God and allow Him to make changes in your heart that only He can make. God walked with me through the darkest moments in my life and I can still stand and still call Him good and thank Him for the gift of faith and of family and friends to walk this path with us. God may not change your circumstance but He can change your heart. We could look back and be angry and bitter at what happened to us. Instead we say, to God be the glory! There are certain milestone dates that you simply never forget. Birthdays, anniversaries, and dates that loved ones died. We added two new dates to that list this year. January 9, we took Jonathan to the pediatrician for an oddly swollen belly. They sent us directly to the emergency room, they ran the preliminary tests and put us on an ambulance to the main children's hospital. I woke up worrying my son was constipated and went to bed that night with a cancer diagnosis. After 3 months in hospital with short breaks home, Jonathan finished chemo on April 11. Scans before that last round of chemo showed no sign of cancer, so the last round of chemo was insurance in a way.
He's now considered to be in remission for 6 months! At his last check-up, his blood work was completely normal for the first time and an ultrasound showed no signs of the abdominal tumors returning. Praise God! As we've neared this milestone, I've been overwhelmed with feelings of gratitude that our son was restored to us. We clung to God during the darkest moments and rejoice with Him now that the shadow of those dark times is starting to recede behind us. Jonathan will be considered "cured" at the 18 month mark. Burkitt's Lymphoma has never recurred past the 18 month mark. The doctor said we'll keep on monthly check-ups for now but next month Jonathan won't require any blood draws for which I think I'm more grateful than he. Finger pokes are never fun and he always cries. Thank you again to all of you who walked this road with us, who bathed us in prayer and helped sustain us with notes, calls, gifts, and your love. To God be the glory!
Jeff reminded me this morning that it was one year ago today that he found out that his employer was laying him off. He had one month's notice (his European employer didn't look at the calendar and find September 11 to be culturally important so that was decided on as his last day). When he called me with the news, I felt more a sense of adventure than anything else. It didn't really occur to me that it was something we should worry about. He started looking for a new job and as it became clear there wasn't a whole lot available in the DFW area, we broadened our search. He asked me if I could live anywhere in the country, where would I live. Hmmmmmm. As a child I'd lived in California, Indiana, New Jersey, Connecticut and Texas. Telecom, not military (the first question everyone asks). I told him I was game for just about anything but would love to live somewhere that had actual seasons instead of Texas' hot and not quite so hot. I told him I refused to live in Houston. Thankfully God didn't call my bluff on that one.
Jeff found the job lead in Denver fairly early in his search through a longtime friend that lived in the area. Other leads dried up but the Denver job kept progressing. After Jeff was out of work, we started doing "date days" on Wednesdays. Jonathan was in pre-K, Clara was in mother's day out on Wednesday so we realized we could skip the sitter and have some precious time together. We were sitting on the patio at Brio at Southlake Town Center having just watched the movie "War Room" when he got the official job offer that moved us to Colorado. The rest as they say is history. The last year has involved lots of stress but we can look back and see God's hand guiding each decision. Our neighborhood/home search criteria was full of the normal "stuff" people want: big kitchen, large pantry, spacious bedrooms, decent backyard, etc. We found all of that in our house but even more, we found friendly neighbors who went out of their way to greet us. They even cleared our driveway for us the first few blizzards, knowing we had a child in the hospital. We have built in playmates for our kids surrounding us. God led us to the right house, on the right street to find people we could meet and start to do life with in a way we never had in our Texas neighborhood. I picked a preschool using the same check-list type approach but picked the preschool that gave me more peace as I walked through it. They were beyond amazing in supporting us even though Jonathan and Clara were students for a mere week before his cancer diagnosis. Jonthan's teacher visited us many times in the hospital. Her daughter's best friend had been fighting cancer himself at the same hospital for over a year. So they knew how to support us, what to say and not say, how to pray, and were comfortable with all the procedures needed to gown up and come in the room when Jonathan was at his sickest. We feel grateful for the journey the last year has taken us on. To God be the glory! I plan to publish a day by day account with pictures but we're in the last week of summer before pre-school starts so it might be a week or two before I catch my breath and sort through pictures. In short, we had a beyond amazing time. The logistics all worked out perfectly and we made so many great memories together.
Before Jonathan got sick, I'd heard of Make a Wish granting wishes for sick children. I never in a million years thought we'd be applying to get a wish granted for one of our children. I'd always thought Make a Wish was only for terminal children...kids who wanted one last trip or gift for their bucket list. As we entered the pediatric cancer world, we realized how many amazing charities are out there that are geared towards helping families through this hard time.
I decided to apply to Make a Wish once we got the "all clear" scan for Jonathan that his Burkitt's Lymphoma was gone. Their website helpfully explains that a child needs to have faced a life threatening illness to qualify, and not necessarily be facing a terminal diagnosis. Mid-way through his chemo cycles we started promising Jonathan a trip to Legoland when he was "all better". He became a lego wiz in the hospital. Every time a volunteer or child life specialist would pop their head into the room and ask if he needed anything, he'd put on this charming little smile and ask if he could have some legos. I can't even tell you how many sets we came home with. An amazing volunteer from Make a Wish came to our home yesterday carrying balloons, lego decorations and goodies and gave us our full itinerary. As the normal researcher/planner in our family, I can't tell you what an amazing gift it is for someone to just hand me a completely planned trip. We don't even have to worry about how to get to the airport, they're sending a car to take us and pick us up. They've planned airfare, rental car, hotel, attraction tickets, the whole nine yards down to even giving us spending money for food and souvenirs for the kids. If you ever have spare change laying around, give some to Make a Wish. Our family was incredibly isolated during cancer treatment. Jonathan had two stretches that involved 4 weeks straight in the hospital. 4 weeks without him getting to see his little sister except over video chat. 4 weeks of Clara only having one parent home in the evenings and an extra person watching her during the days so Jeff could keep working. While our family is no longer separated, life has gotten back to its fast pace. It's great to have a dedicated period of time that all four of us can be together and make some good memories together. God has blessed our family even during the hard times of facing cancer with Jonathan. He is good. He was good when we lost my dad to cancer. He was good when we lost Jeff's mom to cancer. He is good while we watch another dear friend struggle with a new cancer diagnosis. "God works all things together to good, for those who love God, for those called according to His purpose." Romans 8:28. To God be the glory! Fun with cousins! We made the 6 hour drive north and met up with Jeff's brother Gary to explore Mount Rushmore together. Right now these are the "even cousins". Their ages are 2, 4, 6, 8, and 10! Jonathan did great on the trip. We enjoyed exploring Mount Rushmore and made it to the "Black Hills Caverns" the next day. When we got home, Jonathan excitedly ran to find his "Legoland count down chain". Make a Wish mailed us the supplies to make an advent type count down chain for him. We leave this Thursday! We couldn't be more excited about the trip. We started promising Jonathan Legoland about half-way through his chemo cycles. We'd pull up the webpage at the hospital and he'd want to look at pictures of every ride and ask if he was tall enough to ride them. We are so very thankful that he's finally "all better" and can go.
I would ask for prayers for protection against illness for him. At his checkup a couple weeks ago, his white count had dropped significantly and was at about half the normal level. The doctors chalked it up to just a normal fluctuation as his body continues to heal and recover but that means he's more susceptible to illness right now. |
AuthorOur family has been through non-Hodgkin's lymphoma with our 4 year old and throughout it all we felt God's presence. My life verse is Romans 8:28. "God works all things together for good..." Archives
February 2017
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