Diagnosis and Grace

Friends-

"God is our refuge and strength, a very present help in trouble" Psalm46:1

Much has happened since I last wrote only 2 short days ago. We found out much later that night a new diagnosis, that our sweet boy has leukemia. We were not completely shocked but we were certainly shaken. After I posted about what was going on at Shady Grove, and we waited a bit more for some results, and we were informed that we needed to take Jack to Children's Hospital in DC for further testing with specialists. This raised our concern level quite high as you can imagine, that even with a snow storm coming, we were needing to make this trip.

I began to google the combination of things they had found in the tests done on our little boy (swollen spleen, low platelet count, swollen lymph nodes) and came up options that were NOT Lyme disease, although a few of these symptoms did also look like Lyme. As a result of the google quest, I came across some concerning outcomes, one of the most concerning of these was a type of cancer called Lymphoma.

With this knowledge in hand, we began the drive down to Bethesda, where my dad graciously offered for us to take his 4-wheel drive into the city. This served us so well! The roads were awful, and it might have taken quite a bit longer to make the drive without it. As we drove, I was able to speak with Betsy Ricucci and Jordan and I spoke about how we can fight fear that was looming about and cry out to the Lord during this time. We entered the ER of Children's at 11:20pm and sought to just wait for things to be revealed and not fear the unknown.

Our poor little guy was subject to another battery of blood tests and a urine test. The waiting for the results was long and Jack did not sleep at all, but asked to watch Cars over and over and over. They put another IV in his other hand (he had one in his left hand from Shady Grove) to have a new sterile line. Poor buddy, it just broke our hearts to see him in pain. Around 2:30 am, two doctors, one nurse, and a social worker came in to share with us the news, that they had found cancer blasts in his blood that looked like Leukemia. After asking a few questions, and letting the news sink in, the staff left us, and we wept. Our swwet friend Lisa had come and kept Dylan for us while we cried our hearts out to God and hugged our tired and sick boy.

Many tears have been shed since this initial news was shared, yet in the midst of this deep sadness, we are not without hope and we are not despairing. God has been near, and by His grace, we have not been tempted to be angry or doubt His good plan for all of us in this. My husband has lead me heroically. Through many tears and kind words, he has consistently pointed me back to our unchanging God to whom we can trust, rest in, and find peace in.

So Wednesday and today, little buddy has had two surgeries. One to take a sample from his bone marrow to determine the exact type of cancer he has, and the second to take a sample from his spinal fluid to see if it had progressed to his Central Nervous System and to put an internal IV in his chest called a Broviac (this will lessen the amount of needle pricks he will have to endure to a minimum). We found out the results of these tests today and as it turns out Jack has acute lymphocytic leukemia (ALL), and it has NOT gotten into his CNS. He is a very low risk patient at this point.

This is good news after all. They have told us time and time again that if he was to have a cancer, this is the best option, as it is the easiest to treat with very high cure rates (up in the 90%). We spoke with the Oncologists today about his treatment, which will begin tomorrow. Most likely we will be here in the hospital for 2 weeks, maybe 3. The staff we have had have been amazing. The Lord has been so kind to us in allowing us to be so well cared for during this extreme trial. After this initial round of treatment, we will go home, and care for him as his body responds to the chemo and help him heal. We will likely be back at the hosptial 1-2 times a week for several months for additional treatments as well, but these will all be outpatient and we will be able to go home that same day.

There have been so many sweet instances where we have seen the intimate love of the Father, by placing people around us to care for us so well, during each step of this time. An example of this was the first day here, after no sleep at all, I turned the corner and saw a friend who not only works at the hospital, but in the wing we are in. When I saw here, I broke into tears, and felt the love of the Father on me by placing her here. She has been a great comfort to me and has helped us in so many ways. We have also had amazing nurses, who have been more than accommodating to us, given that we have a baby in the room and it really is not allowed. They have allowed Jack to sleep in a full sized bed, instead of the standard crib (that truly looks like a cage), and when we thought his blankie had been lost in the laundry in an accidental grab, they went down to the laundry shoots and found it for us. Amazing kindness from so many.

We are also just undone at the outpouring of care from so many. Never in my life have I experienced such love and care and support from so many. Each email we have gotten has not only lifted our eyes to the Father and encouraged our souls, but have filled us with gratefulness and awe at the all God has done and is going to do. Friends, we cannot say thank you enough for all you have said and are doing by praying for us.

Needless to say, this has been an emotional roller coaster for us. There have been times of much crying and times of quiet peace. We are experiencing the "peace that passes understanding" in a keen way. The outpouring of care has truly left us speechless and has really been such an example to us of what it is to "weep when others weep."

Thank you again and again for your care as we walk through this trial. Our sweet boy has already won the hearts of all his nurses, as even while he is in pain and after they stick him with needles, he says "thank you" in his soft sweet voice. He has been such a trooper and we are so aware of God sustaining his little body.

I am not sure how often I will be updating, but will try to keep you informed as things progress. Chemo starts tomorrow, so any prayers would be grateful for the little guy. We love you and cannot thank God enough for your care for us during this time.