But I wanted to write to share how God has been working in our family through this time.
I've been keenly aware of two things during these weeks since we found out that our little boy has cancer.
The first happened the day after we found out. Tali and I were both exhausted and still getting the details of how bad his cancer was on that day. I went down to the cafeteria for lunch and I sat by myself trying to collect my thoughts. It was then that it hit me, "I really do trust God!." This may sound obvious, but for me in that moment, it gave me a profound gratefulness in my heart to the Lord. Because growing up in the church, around doctrine and godly men and women all the time, I had learned about the sovereignty of God and I had been inundated with truth about God, but I had never experienced a trial. My life has been incredibly easy. I've actually had the thought before that God must know that my faith is really weak because he has made my life so easy! And so, in the back of my mind, I've wondered how I would really respond if something really serious happened. Would all the things that I've learned go out the window? Is the truth I know just knowledge, or will it actually sustain me?
And so sitting in that cafeteria I realized that my faith is real. Was I sad? Yeah, definitely. Was there grief and wondering what the future would hold? Yep. But I wasn't tempted to doubt that God was in control. Or that he is good. Or that anything that might happen is part of his perfect, righteous, and gracious plan that is being worked out for my good and his glory.
What a comfort to know! James 1 says, "Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing." I have already seen how this trial is making me and Tali more steadfast in our faith. And as we walk through this, we are encouraged that God is working in us, helping us trust him through our weakness and frailty.
The second thing that I've been affected by is something that my wife has taught me. And it is to see each expression of care from other people as a picture and demonstration of God's extravagant love for us.
We've been overwhelmed by the support and care of so many people during this time. Tali and I both have been reduced to tears many times as people have expressed their concern, prayers, encouragement, heart-felt sorrow, and desire to serve us. All of this has been amazing and incredibly faith building.
But what Tali has reminded me of is to view these things not just as expressions of people's love for us (which they most certainly are), but to see them also as coming from our Sovereign Father who loves us. This has put things in an entirely new light, and made it even easier to trust our God through this. Rather than being aware of all the things we don't know, or the things that might go wrong, we want to spend our time meditating on God's character, and look for the mercies that are being demonstrated every day. Each email that we receive, and prayer that is lifted up for us, each time someone makes us a meal, or we receive encouragement from someone we don't even know, it's as if God is telling us, "you can trust me, look at how good I am!" This has been so encouraging and made us even more amazed at the grace of God and the love of our brothers and sisters in Christ!
Thankfully, even if all we got was bad news and we had no one supporting us, the character of our unchangeable, all-wise God would stay the same. This is ultimately where we're seeking to place our trust and hope. God's ways are not ours. But they are perfectly good.
How kind of God though, and how grateful we are, for the lavish grace he's already showing during this trial. And it's so comforting to know that his mercies are new every single morning!
So that's some of what the Lord is teaching me, and what I'm grateful for.
As I said in the previous post, he has been throwing-up a few times each day, and has not been feeling very well. He also has been having lots of yucky poops (sorry for the excessive details!) and so his little bottom is VERY raw. Poor little man is having a rough few days. Every time I put on protective gloves to clean is IV or change a diaper (the chemo comes out in his urine and is not good for us to touch), or bring his meds to him to take, he starts to cry. I know he will get more used to these things as time passes, but it is hard to hear him cry and even harder to convince him that what I am doing is for his good, especially when it hurts him a little.
Jordan and I both made it to church today(not at the same service), and it was so sweet to be able to sing to the Lord in corporate worship. There is something amazing that happens when you go through a trial, that brings worshiping God into a new focus. The words of the songs, suddenly have a deeper meaning, and ask you to think more thoughtfully about our God. Not that singing these songs pre-trial were lacking depth, or meaning.... but they somehow ring more true to me than before and I am more grateful that we can come together and sing our heart out to a God who hears!
Thank you again friends, for every email full of encouragement and prayers, for every comment on the blog and Facebook. I want to get back to each of you and thank you for the specific ways it has helped, but just cannot spend the time on the computer. Please hear me now and know that you are serving us so well by continually pointing us back to the gospel, to the word and to the hope we can find in a faithful God. You all are such blessings to us, and we are so grateful for every one of you.
So some promised pictures... I have not taken any since being home, since Jack has been sick, they would not be very nice ones! Here are a few from our last night at the hospital.
The night before we left, Jack was so hyper. He was jumping up an down on his bed, running around the room with him blankie tied around his neck like a cape, jumping on me and Jordan. It was a fun to watch him be so silly after being sick for so long. We are looking forward to him being like this again soon!
Dressed in regular clothes and ready to go!! Just waiting for the ok from our nurse and Dr!
She was so happy with how he has been responding to chemo, and we are thrilled to hear this report! We are so grateful for the many many prayers lifted up on our sons behalf and we have no doubt that God is hearing and answering those prayers. Thank you dear friends.
Something we were not expecting to happen, the nausea and vomiting has set in. Poor little buddy, last night he threw up 3 times over the course of the night and 1 time today. He sat around on the couch all day, just not feeling well and being pretty miserable. We were not expecting this, as he did not get sick at all with the first round of chemo he received while in the hospital.
We are praying this does not continue for too long, as the risk for him to become dehydrated would send us back to the hospital. He was pretty miserable today, so we are praying he be restored soon, and that the anti-nausea medicine we are giving him will take effect soon. Although, I think Jordan and I are quickly becoming pro's at throw-up clean up. Not something I really wanted to become proficient at!
Sweet boy has wanted nothing but mac n' cheese too. We should keep track of how many boxes he consumes this next month! Oh how we look forward to out boy feeling better soon.
Thank you again for the continued prayers. I will try to post some pictures tomorrow.
Shortly he will be going under general sedative for a bone marrow biopsy and a lumbar chemo treatment. After that, he will be able to eat. He will also be getting some chemo in his Broviac (central IV). We will know tomorrow some of the results of the bone marrow biopsy. Hopefully the results of this will be that there are less than 5% leukemic cells seen. This will mean that he is in remission. If they find more than that, they might have to add to his chemo regimen.
Being home has been wonderful. We have slept so much better, and he has been so happy to be there. We were welcomed home by a sign on the front door, many balloons and an immaculate home. Our dear friends spent much of Tuesday and Wednesday morning cleaning our home, preparing it for Jacks return. This was such an act of heroic service. For many reasons, this was one of the kindest things they could do for us!
The day before all of this happened- last Monday- we had just been snowed in with another family with two kids the same ages as ours. We had so much fun as families and the kids played together so well, we let them just be together in the various rooms of the house. They had spent most of the weekend, playing and making messes everywhere! So last Tuesday morning, I had planned to spend the day getting our home back in order-- but God had another plan. So when these dear friends came into our home to clean a few days ago, it truly was a disaster! I had not cleaned in days, had rushed out the door Tuesday to the Shady Grove Hospital, and had not been back in a week.... so yeah, I am keenly aware of just what a labor of love these servants lavished on us. Thank you friends. There are no words sufficient to express my deep gratefulness for all you did.
Letting Jack sleep through the night the past two nights, without the midnight and 4 am vital checks has been so refreshing for all of us. He slept 11 hours the first night home. We have not brought Tyler home yet, as we wanted Jack to adjust to the change first. We are bringing him home tonight and are so excited to be together again. Jordan spent the day with him yesterday and he is just so excited to be home. He has been staying with our dear friends, the Dufrins, and loving every minute of him time with them. God has been so faithful to protect him while there, as most of the family came down with the flu. All but Tyler and their oldest daughter (whom Tyler loves so so much) got sick!
Something that has been heavy on my heart is the fact that Jack's hair has begun to fall out already. I think I was not expecting this side effect to happen so soon. We noticed little pieces of blond hair on Jordan today while waiting at the hospital, and the tears immediately start to come when I think on this. Jordan thinks he is going to look cute bald... I just don't know. So for this weekend, the boys are gonna get hair cuts together. Not buzzed, just much shorter. I know this will be very emotional for me, but I also know that it is part of the process of getting my little boy healthy again.
Thanks again for the continued thoughts and prayers. We are hoping to hear happy news about the bone marrow biopsy today or tomorrow!
Well, the past 24 hours have changed things again for us! The biggest update, is that we are being discharged tomorrow afternoon some time! The reason this is so crazy is that the Dr. who was on the floor yesterday, was telling us she wanted to keep us here for the entire first month of Jack's treatment. We had begun to think through how we could do this as a family and all the changes that would entail.... and then our nurse came in this morning and told us she was pretty certain we were going home, as early as today if we wanted!!
Let me tell you about the past three days that lead up to this decision of our doctor. Firstly, you should know that when Jack was diagnosed with Leukemia, he had a blast count in his blood of 37. That count is now at ZERO!!!! After the central line was put in on Thursday, they began his chemo treatments Friday. He had been having a fever up until that time. He has responded so well to the chemo, and other medications, that he has been fever free since. He is also no longer attached to his IV all of the time as well, but only when he has to get some meds!
When they took him off of the IV yesterday, it was like our little boy was back! He was bounding around the room, laughing, jumping (on the bed a little), and just overall so joyful. We walked the halls and just had a great day. We played with playdoh, cars, coloring, watch cars and few times... it was a sweet day.
He has also gotten quite used to being touched and looked at, although he still does not like it too much, he does not scream when they come in to take his blood pressure. He has even been able to sleep through a few of his middle of the night vital checks they have done, when his nurse has been particularly gentle.
Jack also received another dose of a different Chemo yesterday in his thigh. It is a shot called a Peg, which kids can have allergic reactions to, but sweetie pie boy did perfectly. Praise God! He was pretty upset about getting poked again, but after a few hugs and a new toy, he was back to his happy self again.
So the Dr. yesterday told us that she felt that she wanted to keep him here for an extended time and on antibiotics, even though she knew that his fever was due to the Leukemia and not an infection, it was a more conservative approach. She said that another Dr. might not agree with her, but that was her decision.
So we prepared ourselves to stay put for the next 3 weeks. Then this morning, our nurse told us they were taking him off of the antibiotic and we would be able to leave whenever we were ready! My mind started racing at this point! Not with fear, but with the millions of things we had wanted to get done before we come home to prep our home for him!
Thankfully, we are not getting kicked out today! They are spending much of today teaching us how to care for his Broviac (the tube inserted into his chest) and how to keep it clean each day and the meds I will need to use for this. They are also helping us to get a clearer picture of what the new "normal" is going to be. And there is an army of servants helping us ready our home for his return, so my mind is now at ease.
I think the biggest things that fill my mind during the day, are wondering when we can expect sickness, hair loss, and big side effects from the chemo. I think we are planning on cutting his thick hair short by the weekend, so that if it starts to come out sooner, we are more used to this look on him. My heart gets heavy at the thought of my bald baby, but I know that there will be grace for that time, as well as grace for any sickness we will face. Once we get home, we will be keeping a vigilant eye on any fevers or illness that might creep up, as a fever will send us back to the ER for antibiotics.
It amazes me that so much has happened in just 1 week. One week ago, we were on our way to the ER at Shady Grove and now we are in a much different place. I know that the Lord has been near to us each step of this past week, and I know I will need to be reminded that he is very near to us, as we walk through the next 3 years to full recovery for our boy. He has always been faithful and I know he will continue to prove his goodness to us in the night watches, in the sickness, in health and when we are weary.
Thank you again friends, for the prayers and care and practical needs being met. We are so grateful for all you have done and are doing.
This has been the cry of my heart these past few days. When thoughts of the future loom ahead and what this is going to look like in a week, month, year are ever present, we are seeking to take things one day at a time. And even as we take it one day at a time, each morning, we are faced with more of the unknown- what the day will bring, how Jack will be feeling, how he will respond to his meds, how he will respond to the staff here, when the nasty side-effects of chemo will begin... the list of unknowns are seemingly endless.
Not only is the thought of what the day will bring full of unknowns, but we are also very tired, as we are not sleeping much at night and so we are tempted to view the day through the filter of weariness. So yes, it is a fight each morning, to not only even want to wake up, but serve our boy joyfully and faithfully.
And yet, as God's word promises, there have been new mercies each morning. Physically, it has been hard to rise, but there waiting for us has been an abundance of grace and joy. It really is amazing. I do not think I know how to fully explain it. Even after going to bed at 1 am, being awoken at 4 am for his medicine dosage to fall asleep at 5am, and then up again at 7:30 am, feeding Dylan some point in there (although I cannot remember when that was!!!) ... I am fully awake and happy to be here with my boy! God's grace is so amazing!
He even has blessed us with little things like our friend, Jenne, who works on this floor bringing us Starbucks at 7 and her sister sending in breakfast food in with her for us! Amazing.
An update on Jackers, he got his first round of Chemo treatment yesterday. As I watched them inject this drug into his IV, it hit me that this was really happening. My child was getting chemotherapy. Something I never dreamed would be happening to one of my children. And again, the reality of what is to come hit me, as he was dry heaving for a few moments this morning. Yesterday was a tough day for the little guy, as he began the treatment and received a few meds that he will be continuing to get over the next month. He has been "hurt" so many times by all the needle pricks in the first few days here, so that now, whenever a nurse or doctor comes to take a look at him, he starts to cry.
Today, he seems to be doing a lot better though. Already, his glands are not as swollen as they were just 5 days ago! He is not limping anymore!!! Finally, after a month of him having a limp, he is walking with ease! Oh how I love to see this. He is also much more joyful and seems to be more of the Jackson we know and love. We took a walk down to the play room and he has been eating a little better today than the past few days. Sadly, one of the side effects of one of his meds, is extreme mood swings, which we are already seeing some of.
It is funny to me, how doing simple things makes all this feel a little bit normal... the other night, I had done some laundry here and folding it made our little room here feel more like home. Feeding him, changing diapers, and playing cars with him also add to the normalcy of what is a very different set of circumstances than we had ever thought to experience.
Anyhow, that's the update for now. We cannot thank you all enough for the lavish outpouring of support you are giving us. We truly are being carried by you and are refreshed by each and every offering of prayer, verses and passages of encouragement, and support. Please do not think that by simply adding your name to the list of many who are praying, that this is somehow not a blessing for us to hear! It really just humbles us that God would place our little family on so many hearts. You all are truly being an example to us of what it is to be a church family and to bear each others burdens up to Christ. We are so grateful.
"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.
For the past month, he has been pretty sick, with ear infections, and various other ailments. The issues became pressing, when we noticed his glands in his groin area swollen and he was limping. This quickly escalated to where he could no longer walk at all. We took him for blood work, and they found that he had gotten Lyme Disease. We thought we had caught it in the early stages, and so the Dr. began a cycle of amoxicillin. That was 3 weeks ago. His glands all over his body have continued to swell, and he has been pretty much miserable.
So here we are today, to see if this is all Lyme Disease, or if something else is causing all of this. He has been a trooper and has put up with a lot of poking and prodding.
We are so aware of our weakness in all of this. We are drawing near to the Lord, knowing that he is not only intimately aware of all the details of the situation, but every cell in Jacks body. We are drawing great comfort and faith in the knowledge that the Lord is worthy of trust and faithful.
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.
Updates will come as I can. Dylan is here with us, and he is being an angel baby. I am not sure how long I will be able to stay with the snow storm upon us. The plan for now was for Jordan to stay the night with him. I would like to stay as well, but a lot will be determined by the room he is given, assuming he is going to be admitted. We are really just going to wait and see what happens after these tests. Thank you friends for the prayers for our little man.
In the midst of all that is going on, I took some pictures of my sweet boy today.. enjoy the sweetness of his little face and big eyes!