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.

coming up on 1 year ago...

Frost


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.

3 comments:

Anonymous said...

Tali, I have read your blog from day one walking this diagnosis out with you in my heart and my head. Jackson has been on my mind for the last year and my heart aches for you his mother. I prayers continue to be with you and your family and I am here for you if you ever need me. With Love, your Aunt Kitty

Anonymous said...

Tali, Your blog is wonderful and I read every one you post. Reading that you are coming up to your one year mark is Awesome for you and Jack the Drs. Appts will be less and if your like me you will miss seeing Beth and getting those counts all the time I remember feeling at a loss when they said see you in a month and thought wait dont you want to continue getting Marlis counts how will we know if they are down. Of corse when the chemo is less the counts stay up But it still made me freak out!!! Our family will continue to pray for yours as your journey moves forward with less and less chemo and healthy happy kids. Love Kathy G

lory said...

Tali, your faith and trust truly inspire me. Praying for you and your sweet boy. Hugs! Lory P.