Welcome

Thank you so much for taking the time to visit our family blog. This may be your first visit here, or you may be a friend from across the globe, or family that we have just seen. Who ever you may be, thanks for taking the time to read about our little family, and all we are learning on this adventure the Lord has called us to live! Here you will find, the random thoughts, funny stories, prayer requests, and the journey our family and Jack is on with his battle with Leukemia.

Our little vacation

A little over due, as usual....

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We had the privilege to travel to the Bahamas with a couple from our church back in January. Jordan and I had been meeting with them, doing their pre-marital counseling, and when they asked if Jordan would marry them, we had no idea we would be going on a destination wedding with them. We were thrilled to be able to go, and the Lord brought some work my way, that helped us be able to afford this trip. He is so kind. We were so excited to have some time away without the kiddos. Even though the travel took forever, we were just so relaxed and happy to be there.

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I took loads of pictures, but if I waited until I got them all just the way I wanted, they would stay in my folders on my computer forever. Here are a few from the island...
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Oh, yes, and the real reason we were there... Joel and Shana got married!! It was so beautiful and so much fun.

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ah, but preparing for the trip was a lot more work than I had planned. Jack was on steroids while we were gone. My heroic mom took care of him for us. So kind. The days leading up to our departure, I spent packing up the kids, who went to two locations and prepared ton of meds for Jack. It is amazing how much we just do... Like how much of his medical care has become so normal, and it is only when I am giving it off to someone else, when I realize it is just a little complicated!! Jack was well taken care of while we were gone, as were Tyler and Dylan, who were with Jordan's parents.

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Jordan and I had so much fun. Just being able to come and go as we pleased, sleep in, talk without interruption...sweet times. We were pretty stoked to be there. It was a lavish kindness from the Lord, and we were so grateful.

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.one year ago.




One year ago, while the east coast was buried under 30"+ of snow, Jordan and I found ourselves at Children's National Medical Center, trying to wrap our minds around the news we have been given a few hours prior. Our son had cancer. We sat in our room, trying to figure out how to tell our families, who to call first, what the next steps where, and how to be strong for our scared little boy. It was a blur of emotions and many many conversations with staff, in information overload, emotional overdrive.

The way all of this unfolded was just a whirlwind. As I said in the previous post, we had just been snowed in with some friends, during the biggest snow storm we had ever had. Our pediatrician is just amazing. And he knew a second storm was heading our way, and as soon as he could get to his office, he called me to see if we could come in before the second storm hit, just to see how the second antibiotics were affecting Jack. When we got there, what the Dr. saw concerned him. He told me we needed to get Jack to the ER to have specialist look at him. He was convinced that if Jack had Lyme disease, then we should have seen some improvement by then.

I drove over to where Jordan was studying, he was in a school of ministry at the time, and walked in the class full of fear. Jordan and his classmates talked to us, and prayed for us. The Lord really met me in those moments. I took Jack home, packed a bag, and got a plan going for what to do with our other kids. My dear friend Sandy, who has 6 kids of her own, joyfully took Tyler on, even without knowing how long we would be gone. Tyler could not have been in better hands.

Jordan and I discussed whether I should come or not, since we had Dylan with us who was only 10 weeks old and still nursing. I almost didn't go to the hospital. We thought that Jack might just get stronger IV antibiotics for the Lyme disease and come home the next day, never thinking he might have something more serious. Jordan had an overnight bag packed for him and Jack, and I grabbed a few things in my diaper bag for the baby. And we left, with the plan for me to head home once the snow started picking up.

Well, after a whole bunch of tests, several hours later, and about 4 inches of snow fall, the Dr's in the local ER sent us to Children's Hospital downtown. Still unclear as to what his diagnosis was, they said he needed to see some specialists. The info they gave us was vague, but the seriousness of what was going on became quiet clear. I googled what the symptoms I had heard were... which is never a good idea. I found Lymphoma, and was shocked. We packed up the car, and we headed to Bethesda, to trade cars with my dad, who had an SUV. Finally, around 11 pm, after driving in pretty rough weather we arrived at the ER in DC.

Unfortunately, upon arrival they said Jack needed another IV put in his other arm (he had one in already and it was covered with a diaper, so he wouldn't touch it). Again, another battery of tests began. My dear friend Lisa drove in the snow (and got quite lost on her way home) to be with us. Jack was amazing through it all. He snacked on the only food I had, a bag of Apple Jacks! He watched the movie Cars at least 4 times.

As the night wore on, i started feeling more and more nauseous. My stomach was churning. We were doing a lot of comforting each other and Jack. Jordan read me Psalm 46 several times. It was finally at 3 am, that the Dr, two nurses, and a social worker came into our room and said they had some news to share with us. We stood around Jack, Lisa holding Dylan, and braced ourselves.

They were kind, they were very sorry, but they had found that Jack had Leukemia. I don't even remember much of what they said after those words were said. My mind filled with questions. They told us we would be getting a room upstairs in the Oncology floor, and they asked us if we were ok. We asked to be left alone. Everyone left us alone with Jack. And then we wept. Hard. I don't think I can say more than that. Our hearts were broken.

So, how do you move on from that? We were moved upstairs, into a room with a crib (which is more akin to a cage) and knew that Jack would never sleep in that, he was already so scared and exhausted. So Jordan and Jack snuggled on the "couch" and I tried to sleep in the arm chair. Sleep was hard to come by, even though I was exhausted. The Dr.'s came to explain things to me at 6:30 am in a separate conference room while Jordan and Jack kept sleeping, and in a haze, I was given a plan for the next few days of what Jack would undergo.

It was a lot to process. I just remember going back to the room after that conversation with the Dr.'s, getting Jack's shirt he had been wearing the previous day, smelling his sweet smell, and crying out to God. How could this be? My heart's cry was one of true desperation. It was in those moments, alone in the bathroom with Jack's shirt, that I emptied my soul out to God. I cried harder than I thought I could, curled into a ball grieving for my baby. This time, alone and weeping, when one would think you would feel utterly alone and abandoned, I felt a glimmer of hope. And I found, in those moments, my God to be there, in my grief with me. His presence was tangible, his comfort real. In my despair, I knew that I was not abandoned, that Jack had not been forgotten by God. I knew in my heart, that if God would send his own son to die in my place, then he would surely be with Jack and our whole family. I walked out if the bathroom, grieving and uncertain of what was coming, but eager to be with Jordan and Jack and face what came with faith that God was there.

Jordan and I both say, that in those first days, it was amazing to see, that all the things we have read and studied in the Bible and believed about the Lord, were proven true. He IS faithful, he DOES sustain. Our lives were forever changed that day. But, I now see that it was this path the Lord has called us to. And he has been near to us every step of the way. Each day has had various challenges, but there has been grace for each of them, one day at a time. We have walked through things I never thought I could handle, yet here I am. By grace alone. Our God is bigger to me than ever before.

Thank you to so many hundreds of people who have prayed for us so many times. Thank you for your support, your care, your kindness, gifts, love... we have been carried by it and are undone, that a year has passed and you have been with us in it. Thank you.

I didn't have my camera, so all of these images are from Jordan's iphone... this is all I have of the first days of this journey.


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.requesting prayer for today.

Today is yet another treatment day at the clinic! We go in once a month for IV Chemo and blood counts. Today is also the start of Jack's monthly 5 days of steroids. The past 3 months, these visits have been harder for Jack than before, because of his new port. He has grown in fear of these visits, each time I tell him we are going to the Dr. he cries.

We love the port, as daily life is so much better than when he had his tubie, but the times when it has to be accessed is really scary for him. We put numbing cream on it, so I do not think he is feeling much pain when they put the needle in it. I just think he is scared. Who wouldn't be, when your mommy has to restrain your arms legs, and head and a nurse is coming at you with a giant needle?

As soon as the process begins, he starts crying, begging me to stop holding his hands and let go of him. So, as you can imagine, I really do not like these times. So please pray for my little buddy today. We go in at 11 am and hopefully he will have his port accessed soon after that. And pray for grace for the next week of steroids and its awful havoc it wreaks on his body.

Another month down, only 36 more to go! Thanks for praying!

coming up on 1 year ago...

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I have recently been looking back through all my old emails (hundreds), journal entries (which are few) and blog posts (even fewer) of what was happening in our lives 1 year ago. If you didn't know, the one year mark of Jack getting diagnosed with Leukemia is coming in just 7 days. I simply cannot believe it. I think to my self, "How can it possibly be a year...Already." Yet at the same moment, the conflicting thought is "That's all it has been, is only one year??"

I have been trying to remember the order of when Jack became sick, and what we were thinking during that time... I found several gchat conversations between Jordan and I, after yet another sleepless night, and crying sick children. It seems at times, as I read those, that I was barely holding on to faith. But now, I can clearly see, that it was the Lord who had a firm grip on me, and my roots were being forced deeper into the soil as trials kept coming to us.

The timeline is just crazy to me to look back on. And more for me, so that I remember, and less for you (my dear friends and readers) will I recount the days and nights before he was officially diagnosed with cancer. This will be kinda long I think... sorry!


I have been trying to trace back to the beginning of all the sickness, when it actually started. You see, pretty much the whole month of December 2009, all three kids were getting colds, ear infections, croup, bronchitis, ect. It seemed like when one got better, another one would get sick. The first email trail I found was of Jack having a cough and runny nose, and ear infections in December, around the 14th of that month.

Since we had a newborn at the time, I was not sleeping much to begin with, then enter a toddler who was not talking much at the time, with only a few words in his vocabulary, up at night crying and sometime screaming for hours. These next few weeks seem like a mushed up blurr of dr.'s visits, and sleeping when I could.

By January 8, Jack had already had several colds, and had a double ear infection and was clearly in pain. He was on antibiotics for his ears.

By January 15, Jack had pain in his arm, and elbow joint and was still having head pain (which we thought was due to the ear infections). He had been on various antibiotics already trying to clear these up. On the 15th, I took him to get an ex-ray of his arm, as he could not straighten it without crying even putting his shirt on was painful. We thought maybe, this was to due to rough play with Tyler. The same day, I had to take Dylan to the ER for RSV, where he was admitted for a 24 hour stay. Tyler also had croup at this Dr. visit. Hey, when it rains, it pours, right?

On January 17th, I began to notice Jack glands swelling a little. He was up most nights crying, and was just miserable most days. He was in pain, and we just did not know what was wrong.

On January 18th, Jordan and I both noticed that Jack was limping. How could not put full weight or pressure on his right leg. He would hobble around the house, often stopping to cry. Yet there were also moments he would run around. It seemed, at first, that this pain would come and go.

January 19th, I went to change his diaper first thing in the morning, and saw that all of the glands in his groin were swollen to the size of very large marbles, and clearly visible under the skin. I freaked out. I did not know that there were even glands there, and immediately thought he had tumors all over his body. I made an appointment with our pediatrician that day, and Jack had blood work done.

January 20, his counts came back normal. Shocking, but a few other tests were not ruled out, as the pediatrician thought it could possibly be a case of Lyme Disease.

January 22, due to the increase of antibodies in his blood, the diagnosis was Lyme Disease. Jack was started on a 28 day cycle of antibiotics, in the hopes to nip it before it got much worse. By this time, however, Jack could not even walk due to the pain in his legs and groin. When we were unable to carry him around, he would crawl or drag his pained body around. It broke my heart to see him like this. He was not sleeping at night, wanting to be held and comforted, and I had a nursing newborn as well, up all night. These nights and days were a blur of exhaustion and survival. I prayed that the antibiotics would work quickly, hoping to see change. There were certainly moments, when he would seem to feel better, and I thought, maybe we had caught it in time. Because of the pain he seemed to constantly be in, we gave him Motrin and Tylenol around the clock, which seemed to take the edge off some of the time.

February 1, he began to have head pain, pulling on his ears, and holding his head. The Motrin and Tylenol were not doing much for him at this point, and I believe he got another ear infection.

February 3, The glands around his face swelled and he looked totally different. His jaw was once angular had become puffy and squared off. They were swollen 3 inches wide and 3 inches down. hard as rocks, his glads were completely full, trying to fight infection in his body. The Dr. changed the antibiotic he was on to the strongest oral antibiotics you can take, hoping to fight this even harder. The antibiotics he had been on for almost 2 months, really had messed up his digestive system, so not only was he miserable because of the mystery illness, he was also having serious bowel problems. Poor little buddy.

February 5-8, we were snowed in! Our dear friends, Kevin and Jami came over with their kids and we stayed warm and ate good food, and took care of all our babies together. This was a reprieve, it seemed, from Jack's pain, and was a really sweet time for our family. We made many memories that weekend, and I will cherish this time for the rest of my life. Jack played with the other kids, and although he did not walk around much, and did not love the snow, he didn't seem as bad as he had in days before.

February 9, our pediatrician called me to see if we could bring Jack in before the second snow storm blew in. He wanted to see if there had been any improvement, before we all were stuck home for who knew how long. That visit, our dr. told us that he was not pleased with what he saw. That Jack should be responding by now. So he told me to go home and get a bag packed and go to the ER. And this brings you to the 1 year mark of true diagnosis. I will recall the events of that night and the days following later.

For now, I just marvel at the sustaining hand of God. Jordan and I both were going on a couple, maybe 2 or 3 hours of sleep for almost 2 months. Actually, if you consider that Dylan was born November 23, I had not been sleeping soundly for much longer than that. We were utterly exhausted, we were weary, we were perplexed, and we were desperately seeking to not think too far down the road of what-ifs. Jordan was in the Pastors College, and was trying to study, write papers, read hundreds of pages, preach a sermon, among other things, and help me stay sane!

We were so aware of our weakness during this time. It was so plain, we were helpless. It seemed nothing we did helped our poor boy, and we certainly were not holding our bodies together. It was the Lord, who sustained us, who continues to uphold us. Jordan and I clung to verse such as this during this time:

Isaiah 40:27-31

Why do you say, O Jacob, and speak, O Israel, "My way is hidden from the LORD, and my right is disregarded by my God"? Have you not known? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

We had dear friends pointing us back to the Lord time and time again, and it was there that we found comfort, and there that we continue to look. Man, I am tired just writing this all out, and thinking on it. A somewhat funny, at least to me, thing that has occurred and wonderful lesson I have learned over the past year, is that I think that I value the sleep I get more than I ever have, it truly is a gift from the Lord, but now, I seldom get angry or even tempted to feel sorry for myself, when I have an interrupted night or even no sleep at all. My heart has finally accepted the fact that 8 blissful hours of sleep each night is not some thing I deserve or HAVE to get, as nice as it is. I will be able to function the next day, I can have a cheerful heart in the midst of a sleepless night, because it is God who upholds me with his righteous hand, and is giving me the grace for each moment, one at a time. This change is HUGE for me.

Ok so this post is long enough. I will cap the ramblings here. If you have read to the end, well, thank you. And I thank you even more deeply, for loving us, caring our burden with us the past year, and being a part of all of this, even many of you from a distance. We feel carried by grace, in tangible ways, every day.