A few weeks ago, we were given tickets to a Washington Nationals Baseball Game from an organization called Casey Cares. It was our first time going to the new park, and seeing the team play. It was perfect weather, and great seats, and ended up being a perfect day together. The boys actually watched some of the game and really enjoyed themselves. It was just so much fun and a sweet memory. Finally, I am posting pictures! I had Dylan in the baby carrier, so it was tricky taking pictures, so there are only a few, but happy times none the less.
Oh man, am I way long overdue in writing out a Jack update. Please please forgive the laps. I have been wanting to write, and each time I try to carve out time, things just get in the way. Has it really been over a month since I have updated in how Jack is doing!? So sorry
Well, the good news is that this has been the best and most normal past month we have had with Jack since December. He has been loosing more and more weight from the steroids, he really looks great. He has been going in every 10 days for IV chemo, and his counts have stayed really good. He got a little low a week ago, but bounced right back.
We have had a few colds here, and everyone has had it, but answer to many prayers, Jack never had a fever and has been able to recover from all of it! Each visit they take his vitals, and it has been amazing to me to see that since November, he has grown 2 inches! He has been a joy to us and it has been so sweet to see and hear Tyler and he love on each other so much.
This past Monday was Jack's last day of the 3rd phase of his treatment. He started and ended this phase (which was 56 days long) with a spinal tap. So he had to be put under anesthesia for those. The rest of the visits were just chemo put in through his IV. He has been such a champ all these visits. Even the longer ones, when we are waiting around. This past spinal tap was by far the hardest visit for us.
We had a new anesthesiologist for this visit, and he gave Jack such a light dose of anesthesia, that almost immediately after they took the gas mask off, he woke up. He usually sleeps for 20 minutes after the procedure, and wakes up cheerful and ready to play (which is AMAZING). This time, by the time I got back to be with him, he was loopy, angry and crying uncontrollably. I honestly did not know what to do, as he has only one other time responded that way (and that was when he was on steroids).
Needless to say, I was glad when, an hour later, he returned to his normal self. So that ended the phase called Interim Maintenance #1. We repeat this phase in 2 months. We actually have a little break until the next phase comes, for which I am so so grateful. He starts the 4th phase, Delayed Intensification, on June 14th. This is going to be when things will take a sharp turn from bliss to difficult. He will be on steroids again for 7 days on, 7 days off, and then 7 days on again. He will also be getting a bunch of new chemo drugs that are higher doses and have combined side effects of dropping his counts to the bottom. We are trying to prepare for the worst, so to be pleasantly surprised at good responses to the chemo.
Right now, I am not tempted to be fearful of this phase coming. But we are 3 weeks from that time and in a very busy season, so there is much distraction. As it gets closer, I know my heart will be tempted to fear and to worry. But I am confident that the same God who has been near and holding us close, will be there then.
I am grateful this time is coming during the summer, and not during cold and flu season. I am grateful we get to go on a little family vacation before this new phase begins. I am so grateful to have had these past two months to get "our Jackers back." There is much to be grateful for.
This quote was recently shared with me, and oh how wonderfully refreshing and helpful, when even things are going well, life is still life interrupted! I want to view every spill on the carpet, every delay at the hospital, sleepless night, hungry crying baby, fussy boy, skinned knee, laundry to fold, dose of chemo, meds to be taken, kisses to be administered, and hugs to be had, and tears wiped away as the rich rich life God has given me.
These little creatures have invaded our backyard, and the boy could not be happier. Tyler had a jar full of them at one point, and both boys love letting them crawl all over them. One of the many ways boys are different from girls, which I am trying to teach them that mommy, is indeed a girl. I love seeing them play with them, in sweet innocence. They do not yet know how strong their little fingers can be, that shaking the jar can hurt the little bugs, the newness of little crawly things. It has been a wonder for them to discover, and I love to watch it all unfold.
There is something about your little boy playing on a little sports team that makes him feel all grown up! Although I know he is far from ALL grown up, he certainly is growing up fast right before my eyes. Tyler eats like there is no tomorrow recently, and seems to be hitting a little growth spurt. So, with all that energy he has, we decided that we wanted him to get to do something very special. All the attention and gifts that Jack gets can be tempting for him sometimes, and so when the opportunity to sign him up for this little soccer program came, we were so excited.
He was so thrilled when Jordan took him out to buy his very own soccer ball and shin guards. The first day of soccer, he woke up, and immediately put on the shin guards, and they stayed on until bedtime. He loves his coach (who is from England), and a bunch of his buddies are also doing the same program, which makes it even more fun. Here are some pictures of my big boy playing soccer!
Well, we did it... we started solid food with Dylan! After weeks of him eying every bite that went into my mouth, I finally gave in that he seemed ready. The first go was a very messy thing, as you will see by my pictures. The past few times have gone a lot better! I love watching babies learn how to eat. Amazing how everything is so new to them. I just love all the faces he made during the first meal. Enjoy a little snap shot into the sweetness I get to see everyday!
Look what arrived on our doorstep Wednesday morning.... there really are no words for what I am thinking and feeling right now, but I am going to do my best to communicate how grateful we are. When we put up the initial blog post about hats for Jack, I do not think we expected all the lavish love and gifts we have received. We thought a few friends from different states would send hats for our little guy, and we would be able to point him back to their gifts as a reminder of the love of God for him.
Never could we have imaged just how many people would not only take the time to listen and read our blog, pray for us, and buy and ship hats. Never would I have thought... All of you out there, who have done these things, well, frankly, you have schooled me on what it is to love one another and to give so freely, and to carry the burden of another. Truly. Each hat we get, each note of prayer and encouragement, they point me to the Lord, and for that I am eternally grateful.
I have not taken nearly enough photos of all the hats, and I plan to take a picture of him in each of them, so if you do not see your hat yet, if will make it on here I promise! He has really loved all of the hats, and the gifts! We just bought a rack to hang them on in his room so he can see them and pick one each day to wear! We have been getting a steady stream of hats for the past month, and the pile has gotten quite large. After getting this package, that contained 30 hats, signed by many professional sports coaches and athletes, well, we have just been overwhelmed by kindness.
Sitting here next to me, I have hats from the Carolina Panthers Coach, John Fox; The Charlotte Checkers Basketball Team #'s 12, 11, 21, 20, 10, 9, 22, 26, 7, 24, 6, 47, 27, 00, 6, and I cannot read the other numbers!! The entire Toronto Blue Jays Baseball Team, Tampa Bay Sting Rays Elliot Johnson, Clemson Baseball Head Coach Jack Leggett, and that is just a few of the sports autographed hats. Then you add all the hats from friends home states and the signatures of those dear heroes.... well, you can get a clear picture of just how much we are feeling the generous love of so many!
Here are some pictures of Jack and Tyler opening the latest big box from a friend in North Carolina who headed up getting as many hats for Jack as she could! More updates on the way!
Maybe not bliss. Certainly not without our flaws. Yet here we stand, by the grace of God. More in love, better friends. No better match for me. It seems so long ago that we said our "i do" like we were just kids, without a clue as to all God had in store for us, yet ready and eager to begin our life together. Pastor CJ Mahaney gave a short message on our wedding day, reminding us of the truth about how faithful God is found in Psalm 121.
He reminded us that day, as it says in that whole passage, that we will always be able to look to the maker of heaven and earth for help in times of trouble. He will not let our foot be moved. He will keep our going out and our coming in.... you should read it. And he reminded us that the reason we can do this, is because our God will not move from his throne. We can always look to a faithful God.
And faithful he has been to us. I can honestly say, that as we become more like Him, the result is being more in love with each other. He has proven faithful to us time and time again. He has carried us through difficult trials we could not have withstood on our own. He has helped us overcome sin towards one another. He has taught us how to sacrificially love each other. And he has given us the sweet gift of joy and faith and trust towards one another. What a rich love and marriage we share, because of the wonderful unchanging love of the Father.
So, today, we mark 6 years of this wonderful adventure. I would not want to share it with another! As dorky as this is, I keep thinking of the chorus to the Shania Twain song, Your Still The One. The whole song is not all applicable, but the chorus rings true in my heart!