Thursday, August 16, 2012

We Meet Again!!!

Hello Family and Friends,

It's been so long since I have posted on here that blogspot has changed all of their dashboard functions so I am hoping this posts correctly. Our baby boy is somehow turning into a kid rather than a baby. Of course that gives me mixed emotions. I am happy that he is growing and happy and healthy, but sad because I want stop time. If he grows up he might...leave me! This poor kid is going to have a mom that wants to follow him to college and live with him after he's married. My husband would never let me, but that may not stop me from trying ;) Here is an updated picture of our family. We had an awesome beach vacation at Justin's Beach House courtesy of the Justin Jenning's Foundation. It was great to have both sets of grandparents there with us! Gavin was convinced that the beach house was our new house and that we lived in Delaware. When we got home he kept crying and telling me that we had to go back to our house in Delaware! I think after 3 weeks he is finally adjusting to our actual, but much less exciting home :)

Grayson is still going to clinic once a month until December when he has hopefully his final surgery and last bone marrow biopsy in the OR. His bloodwork has looked beautiful and he is the most compliant patient.

I am posting today because today was a very, very special day for our family. We were reunited with two of the best nurses JH has to offer, Alex Thompson and Kasey Mikula (who now run charge all by themselves).

I wasn't sure how Grayson would respond because I knew he wouldn't remember them but I was hoping he would warm up to them. Fortunately he likes pretty girls, so he was climbing in their laps in no time at all! 

I can't really explain to you all what it meant for these girls to drive over an hour to come to Westminster to visit with us. We have not seen them for 18 months and to all the sudden get to have them in our home was like having part of our family come home. These girls became part of our family while we were at Hopkins and it makes me teary that we weren't allowed to see them (a sort-of hospital policy) until Grayson was completely healthy and there was no chance he would be admitted again. Praise God he is too healthy for any of that! Anyway, we got to be reunited with part of our family and it was like no time had past. They fell right in step with our rambunctious boys and were playing Nerf basketball in no time.They chased my boys around the playground and had an ice cream picnic. It was just a perfect day. As they were leaving Grayson gave them both nice long snugly hugs and stayed in Kasey's arms for a good while to twirl his fingers in her hair. He used to do that when he was inpatient. It was so incredibly precious! Gavin told me he wanted to go home with them and I told him he couldn't. He watched them get in their car and said, "but mom, I really like those girls." We all just love those girls to pieces!

Wednesday, February 1, 2012

Grayson turns 2 Years Old!

Hey friends and family,

It has been a while, but no news is good news right :)

Grayson is doing so well and I just wanted to share some of his latest and greatest moments.

In October, Grayson broke his leg after falling in the grocery store. It wasn't a bad fall, he just twisted it just enough to break both his tibia and fibula. Here is a video of him with his cast on. You can't really see it and within a week he was running and jumping on it. Looking back at this video I can't believe how much he's grown in just 3 months. He still looks like a little baby here.

So precious~

We had a wonderful Thanksgiving with lots of family. Here is a picture of Grayson and Gavin before turkey. After turkey he was covered in food.

On December 19th Grayson had his 1 year bone marrow aspirate and biopsy which came back 100% donor cells! We are one year out and still cancer free!!!! Praise God for that!

We also had Grayson's first Christmas at home!! This Christmas we spent the night at Grandmom and PopPop Brown's and got to wake up Christmas morning with the whole family plus Tom's Aunt and Uncle and cousins from Japan. It was such a fun morning. Our children were completely spoiled rotten and of course we were all just happy to have our son home and healthy!

Then on January 19, Grayson celebrated his 2nd birthday. This was so much better then the first birthday you all witnessed. Looking back, I realize just how very sick he was and how very blessed we are to have him here. One of Tom's co-workers that was such a huge support to me personally told me last year that for Grayson's second birthday she was making the cakes! She designed and created these awesome cakes for his party. Grayson is all about Mickey Mouse Clubhouse and she made not only a clubhouse cake, but also a Mickey Hat that he could really dig into. In addition she made me a cake as well because my birthday was on the eleventh. She knew I had just finished my first half-marathon so she made an awesome pink sneaker shoe! Thank you so much Sue! The cakes were a huge hit and delicious!


Grayson is talking in full sentences and knows most of his letters now (thanks to leap frog letter factory). His growth never hit a plateau as the doctors had anticipated and they continue to be amazed by his height and weight. He's in the 97th percentile for his height and 78th for weight. This child eats so well! Broccoli is his favorite food but he'll eat almost anything I put on his plate. After two very picky eaters I am so relieved to have one that eats it all.

We decided along with the doctors that we would remove his port at the very end of December and that went really well. We even had his first clinic appointment with blood draw, which meant a stick, but he handled it  like a champ! We are still waiting on some blood work results to see if we can start re-immunizing him.

Grayson's first year post transplant really went better than expected. No fever or sickness besides the occasional runny nose. This past week he caught a nasty GI bug, and wound up back at Hopkins for severe dehydration. They pumped him full of fluids and then sent us home but it was a scary moment to be back there and have him be sick like that. However, I am so thankful that he got sick now after the port was out because it meant when he got a fever, he did not automatically have to be admitted for 48 hours of antibiotics. He is still trying to fight this off and its been almost a week of throwing up and diarrhea. He has not been eating and we are having a hard time keeping fluid down. During the days he seems like he's doing better. He is active and drinks and then at night, the vomiting starts all over again. If you can keep this in prayer, I would appreciate it. The oncology department is not concerned and said he is pretty much like any other kid with a tummy bug right now. Although it may take him a little longer to get better. We are supposed to leave on Sunday for Deep Creek. Believe in Tomorrow gave us a trip to one of their respite facilities and we are so excited to get away for a little while as a family. As long as Grayson can kick this bug we will go and have some fun in the snow!

Speaking of Believe in Tomorrow, we are participating in our second Port to Fort 6K for their organization. We our hoping our team, Racin' for Grayson, will continue to grow in participation each year in order to raise funds for this fabulous organization that provided our family housing downtown during Grayson's treatment. If you live in Maryland and want to join our team, please follow the link and register! *Remember to put "Racin' for Grayson" when it asks for a team name!

If you can't do the race but would like to donate to Believe in Tomorrow you can do that on our Team page here:

FYI: We are looking for a sponsor for our team t-shirts. If you know any companies interested in having a ton of us racing downtown with their company name & logo plastered on us, send me a message please ;)

I think that's all for now. If Grayson is better and we wind up taking our trip to Deep Creek, I will post pictures!


Friday, September 2, 2011

Riley Davis Update!

Thank you Lord Jesus for your quick response to prayer. Thank you all who began praying for this boy. Riley is still in the PICU but I wanted to share with you his mom Mary's update from today (September 2):

Happy 13th Birthday to you my sweet Riley! Today is a great day. Thank You for all the Birthday wishes that came to Riley today. Ri became far more alert today with much movement. His breathing showed so much improvement that his breathing tube was able to be removed. He is alert, and speaking a bit. I had no doubt, that today would be the day! Dialysisis today also, has been cut back some. Our Rock star is moving in the right direction. Ri has received all your great mail, and gifts..So great, Thank YOU! But today was kept low key. Riley agreed we would have a celebration, tomorrow or the next day, and do it right. Thanks Everyone! I expect bigger and better news come the days ahead. Lots Of Love, Mary WooHoo ; )

I also wanted to give you an update on Trinity (Mason's sister on his mom's side). She finished all her intrathecal chemo a month or two ago and has been doing fabulous. She is still getting chemo treatments by IV every other week which will continue until April. She has had hardly any side effects from the chemo so praise God for that. She is still bouncing around full of energy and has very little nausea. She did lose most of her hair but still looks like an adorable little pixie. Please keep praying that she gets through this with no side effects and no infections. Also pray for strength for her mother (Nevada) because Triniti is a spitfire and when she is put on steroids (every chemo treatment) she can get out of control.
Thank you all again who continue to pray for sick children and for God to be glorified through their illnesses.


Tuesday, August 30, 2011

August 30, 2011

Hello Everyone! Let me start off by saying Grayson is doing fabulous!! I am able to praise God with such renewed vigor because of His awesome healing and that makes me thankful right now for my son's illness. Grayson is still being seen in the outpatient clinic regularly for blood work and a two hour infusion of an antibiotic that prevents a specific chest/lung infection. He looks beautiful and his hair is coming in thin but growing fast. He still has a port which makes clinic visits a little easier because they don't have to find a vein to poke. He has been seen once a week for over two months now and has been off his immune suppression medication since June 16. They were watching him closely for chronic GVH which tends to flare in the first two months. Praise God he didn't have any. His doctor said he has been doing so well off his medication that she doesn't need to see us for a whole month!! Can you believe that! We couldn't! It actually made us nervous to be away that long but we are one week into it and it feels good not to have to drive down there. We are still watching him closely for signs of chronic GVHD at home but for the most part we are just enjoying normallcy.

Chronic GVH can be really hard to treat and while Grayson is still at risk for developing chronic GVH he at least made it off his medication without a flare. This is something I am so thankful for today especially. I have other news about Grayson that I will post below with some pictures of his first vacation since transplant, but for now I have to ask something of all of you. When Grayson was inpatient and when we moved to transplant housing there was a boy that was 11 named Riley that was going through a second bone marrow transplant after his first was unsuccessful. Bone marrow transplant is very hard on a child's body so to have to go through two awful. Riley and Grayson went through all the same stages together and we were neighbors on the 8th floor and then again at the St. Casmir house. His mom and I kept in touch for a while once we both went home but these last few weeks I hadn't seen them in clinic and me being busy with my "normal life" didn't call or text her to see how Ri was doing. Anyway, she posted an update on Riley's page last night and he is back in the hospital with a very serious case of chronic GVHD in his gut. So serious that he has been moved to the PICU and has a breathing tube, feeding tube, and dialysis. This GVH is serious stuff and while I am so thankful to have a healthy baby my heart is just aching for this mom and her baby. He went home almost as healthy as Grayson did and now they are right back in the hospital and it's just heartbreaking. Can you please pray for this boy and his mother (Mary). She said he's still fighting and the kid always has a smile on his face but his body has been through so much and he needs strength and healing that comes from Jesus Christ. They are not believers in Jesus right now but my hope is that we can bombard their family with prayer and somehow they will come to know Jesus through their son's healing. Thank you in advance.

We took our first family vacation since Grayson was diagnosed and it was great. We were asked to stay local by our doctors so we went to Bethany Beach , DE. It rained for most of the week but it was just nice being away from the norm and the kids got to enjoy brief periods at the beach and pool which was better for Grayson anyway. He doesn't seem to be sweating which means his body doesn't cool itself when he's in the heat so we have to be really careful to keep him cool. His face gets super red and hot to the touch like he's overheated. The doctors aren't sure why he isn't sweating because they normally only see that with serious skin GVHD which he does not have. Last Thursday when I took him in she said she had heard the same complaint from two other recent bone marrow transplant patients so she said it might be a new side effect that they aren't yet aware of. We will see what happens with that but for now we just do our best to keep him hydrated and cool.

Grayson has started gaining weight and he is getting so tall. He has gained two pounds in two months and several inches. He doesn't look like a baby anymore he is a big boy. We took him back to the inpatient side of the 8th floor and none of his old nurses recognized him. They said they couldn't believe how different he looked and how much he looked like Gavin. They all called him a "little man". My kids must just have a mature look because I used to hear that all the time with Gavin too. Here are some pictures from vacation.

Oh and Grayson is talking in full sentences at 19 months old. I can't believe how much he talks. I told Tom he's bound to be a genius because he's done nothing but hang out with doctors for the last 9 months ;)   He really is a little smarty pants. He likes to climb on my stomach in the mornings and lean down real close to my face and whisper "Wake-up mommy!" If I don't open my eyes he pats my face and whispers it again. He cracks me up! He sings ring-around-the-rosey and baby beluga and twinkle, twinkle, he is just really grown up for only being 19 months old. I have some videos of him sword fighting his brothers that I will try to upload later today but for now I just wanted to update all of you on his progress and thank you again for all the prayer and encouragement that is still coming our way. Love you all!

Saturday, July 16, 2011

July 16, 2011

I am soo sorry! Grayson's last test results were not supposed to be a cliffhanger. He was 100% donor marrow at his 6 month bone marrow test! Praise God for continuing to keep the leukemia from my babies body. I had put his results on Facebook and thought I had done the same here and someone informed me yesterday I hadn't. I am so sorry for keeping all of you who were praying waiting. Grayson is still going weekly to clinic for now but we were told he will move to every other week soon which will be a huge a relief from the time consuming trips, coordination of babysitters for Gavin, and gas/parking money each week. Eventually we will move to monthly visits and stay that way until he is two years out from transplant (December 22, 2012). Really excited for that day when they will do his final bone marrow and say he is STILL LEUKEMIA FREE!!!!

Thursday, June 23, 2011

June 22, 2011

Wow, the past month has just flown by. These boys keep me so busy! I am very happy to report that Grayson is still doing wonderfully. His hair is really starting to come in and I am a little sad because his bright blond has been replaced with dark brown which makes him look more like Tom than me. I will remain content with the fact that he has my blue eyes! Grayson does have a very big day coming up this Friday, June 24th at 9:00am. He will have his fourth post transplant bone marrow aspirate which they will test to see if the Leukemia is still gone and what percentage of the cells in his marrow are Gavin's (Graft) and what percentage are Grayson's (Host). I still can't believe he is six months post transplant. It make me so full of joy to think about how far he's come in such a short time. We were given permission last week to start coming out of quarantine or isolation as I called it. Grayson was allowed to go outside without a mask and we were able to attend church for the first time as a family on Father's Day. What a great present for Tom!

Grayson's immune system is still not completely functioning, but he is off of his immune suppressant and far enough out from transplant that they feel comfortable letting him out of the house. I really don't know who is more pleased about this, the baby, Gavin, or me! I am just so thankful that since we have been released to come home, Grayson has not had one single fever or hospitalization. That is just a testament to God's grace and the power of prayer. Thank you again to all of our friends and family that continue to lift my son and our family in prayer. We of course are still very cautious in all of our outings and we are trying to introduce the outside world very slowly. Grayson went to the grocery store with Tom, Gavin and I for our first outing. There are actually more exciting places in Carroll County that we could have taken him for his first outing but we needed food and I was happy just to be out with my family. We have to keep Grayson in our stroller the whole time because he can't touch anything and the carts are far too germy.  He was content with that for a while and then my very active baby had enough of being still in the stroller and started screaming to get out. I ignored him at first to see of he would stop but he only got louder so I picked him up out of the stroller to my husbands dismay. I thought I could just hold him through the rest of the store. Grayson had other ideas and tried his best to squirm to get down and run but after he realized I wasn't letting go, he resorted to pulling my hair, smacking my face and more screaming which of course caused a lot of staring. At that point I promptly left the store to console my out of control baby. I was really thankful that Tom was there because he was able to finish the grocery shopping :) We thought through the second outing a little better and opted for the local trail where he could run (yes he runs now) in the fresh air. Needless to say this trip ended on a much happier note.

My big boy has grown several centimeters in the last few month and thinned out quite a bit. These pictures were taken Father's Day weekend and I may be biased but I think he is simply charming.

Actually I think he is perfectly beautiful.  This child, this precious child is running around, doing his best to keep up with his big brothers, smiling and laughing and I find myself in a mess of tears just thanking God for his mercy and healing. My prefect little boy produces such a deep gratitude and joy in my spirit and I simply can't get enough of him. I must kiss and squeeze him a thousand times a day and he lets me...for now. He is a very affectionate child and while he is still very clingy to me he has blessed a few others with his special hugs and kisses. When he hugs you he wraps both his tiny arms around your neck and presses his cheek against yours and squeezes as tight as he can and his kisses are the drool all over you kind of kisses that are only sweet when you are a baby. 

Grayson still has weekly clinic visit at Hopkins. Here he is during one of his visits. He plays with the calculator during vitals so that he can push button like his nurse does on the machines. 

This is Grayson with his P.A. Nancy, checking out his lab results.

So far we have not seen any Graft vs. Host flare-ups. His skin is still looking good. The doctors say that if he doesn't have any symptoms of GVH by two years out he probably won't get it. I know that is still a long time away but there are others we know that are already experiencing it. He hasn't gained any weight but he is holding at 25 pounds so they are happy with that. He is still nursing all the time which the doctors are still encouraging. I am getting impatient with the nursing because I am not seeing an end to it any time soon. I feel at time that he is literally attached to me all the time. He doesn't eat very much table food because he just prefers that closeness with mommy. Besides the smacking, hair pulling and running he has learned some other "tricks" and lots of new vocabulary. One of his favorite new words is "nurse?" I wish I could say he was referring to a person instead of a meal but I can't. He is putting words together and making short sentences and his favorite activity besides nursing is reading. As soon as he wakes up he runs into Gavin's room and grabs a book off the shelf and brings it to me and asks "book please?" He is just so darn cute!

I posted a video of Gavin and Grayson playing with pop-its at Grandmom Brown's house. These are like little firecrackers that you throw at the ground or stomp on and they spark and make a popping sound. He gets such a kick out of himself when he pops one.

Thank you all again for your continued love and support for our family.

Wednesday, May 25, 2011

May 24, 2011

I was thinking the other day that it has been five months since Grayson's transplant. I started thinking for a moment about that day and the events that took place and was immediately overwhelmed. I think that I am someone who has a fairly good memory but sometimes I am thankful that God does not allow me to remember everything or every detail. I am so thankful that God gave me the grace and the focus to get through that situation and that he continues to give me the grace each day to deal with the aftermath of having a very sick child.

I haven't written on this blog in a while because my baby and three year old keep me very occupied all day long and to be honest it forces me to think about the days when this blog was an outlet for my fears and prayer requests that I don't want to have to think about right now. I tell myself that we are through that part now and I don't want to look back because it is terribly depressing, but at the same time looking back refreshes my appreciation for the many blessings in my life. I was reminded of that tonight. I went to a MOPS night out with some wonderful women. MOPS stands for Mothers of Pre-Schoolers and this was a group of woman that was just an awesome support for me during the long hospital days. Anyway, tonight when we got together there were two new women there that I had never met and we were talking and I shared with them briefly about Grayson and one of the woman spoke up and shared that she had had a hard three years where she lost both parents and her husband within a 3 year period. She said that after her mom died she had found a Gratitude Journal and she decided to start one herself. She shared that she writes 5 things she grateful for at the end of every day. Sometimes when you go through something dark it is so easy to ask "Why Me?" or focus on what you no longer have, but God calls us to do the opposite. To sing praises no matter what the situation, no matter what the loss or the trial. I really liked her idea of a gratitude journal so I am going to start tonight on this blog writing 5 things I am grateful for.

1. My baby Grayson is alive and here and I am thankful that we started the month long weaning process off of his immune suppressants.
2. My husband's sense of humor. He lovingly teases me and can make me laugh at myself.
3. Gavin wanted to cuddle with me today and that is rare anymore. I am so thankful that he wanted me to hold him tight and it felt so good.
4. Mason had a travel soccer team tryout tonight and the coaches told him he had power and accuracy behind his shots. He was beaming with pride and I was grateful to share in that moment with him.
5. I am thankful for my MOPS girlfriends and MOPS night out. Thankful that they put up with my non-stop talking because once I start I can't seem to stop.

I have a pretty journal that I was given that I will use for my gratitude journal but thought the idea should be passed on. Life is hard. We live in a fallen world where there is sin and sadness and it is easy to get sucked into that darkness and forget the blessings that are right in front of us. Lately when I get upset or angry I look at the object or person and say to myself if that person or thing weren't here right now would I miss what I am upset? I hope that is encouraging to you who are still reading.

Please continue to pray for my little peanut that the long-term effects of the chemo will be non-existent and that he will stay leukemia free!!! His next bone marrow test will be on around June 22. He has started to wean off his Tacro (immune-suppressant) which is preventing him from having Graft versus Host. The doctors are hoping that Gavin's cells have had enough time to engraft and will no longer see Grayson's body or organs as foreign. Please pray this month that while we wean off the Tacro there will be no Graft v. Host flare ups. Thank you all again for your continued love for my family through prayers.