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.

Love,
Pam 

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!

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!!!!

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.

http://www.youtube.com/watch?v=CmyJwF-ceks

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

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.

April 25, 2011

Today marks a full month since Grayson has been home from the hospital. Praise God he has been doing fantastic! Our weekly clinic visits and blood tests all show continued positive progress. We are thrilled and thankful that we are able to be home together as a family and that Grayson is able to resume somewhat of a normal life.

Grayson is still doing physical therapy but only every other week. Since we have been home he has made huge improvements in his gross motor skills. It seems like each week we have been home he has started doing something new. He started crawling, pulling up, going up the stairs, and just this past weekend he started walking. Not just a few steps but full out walking anywhere he wants to go. You can see the satisfaction in his face when he stands himself up and simply walks where he chooses. It cracks me up! It is just so exciting to see him walking and very freeing. Mainly because I don't have to carry him everywhere :) This new found freedom does have its drawbacks. We have three flights of stairs in our house and Grayson is drawn to them. Tom had to put all the gates up this weekend. Grayson is also in the habit of picking up and carrying objects around with him. He likes my bright red colander which he plays with frequently and carries it from room to room. Sometimes this throws off his balance and he's head a few tumbles but his bruises always heal. They do take a longer time to go away but the doctors say that is all part of a recovering immune system.

We are still in clinic once a week for blood work, exam, and medications. He is down to one medication twice daily which is the immune suppressant and then one or two meds that are given in clinic through his port. The port has been wonderful, now that it has healed. The port is all under the skin so Grayson takes at least one bath a day and sometimes two or three just because he LOVES the water! His favorite word is bathtub! He is talking so much. He wakes in the morning, nurses and then points to the bathroom and says, "bathtub?" I got the coolest bath toy that is sort of like a sprinkler with stacking elements and he will play in the tub with this thing until the water gets cold and I have to pull him out kicking and screaming. Yes, my sweet little angel has quite the temper. He still holds his breath when he's mad and his lips go blue, but thankfully no passing out episodes. It's just to the point where you think he's going to fall over and then...a breath.

He is still nursing frequently but he is also eating very well. He seriously eats more than Gavin and he will eat things like asparagus and broccoli which most babies/kids don't care for. I asked his doctor whether he thought the nursing was still beneficial or if/when I could start weaning. He told me "high school"! Hmmm, that might be awkward to pack in his lunches. He said it was still providing important antibodies which his immune system is lacking but that after he weans off his immune suppressant I could start weaning. I don't mind nursing him except that he has to have my hair in his fingers when he nurses. Its somewhat extreme because if I have my hair pulled back he reaches his tiny fingers up into the roots of my hair and yanks down until he can get a few strands loose. I am surprised I don't have bald spots with all the hair he's pulled out of my head. But I am not complaining because I know I will miss that part of our bond after he stops.

Speaking of hair, Grayson's has not grown back yet. Normally around day 100 post transplant doctors say kids have what looks like a buzz cut, but Grayson just looks bald. His hair is starting to come in but in patches and it is so blond that you can barely see it unless you are up close. Oh well, hopefully he will have hair before he goes to kindergarten. If not, we'll just say we cut his hair to look like his Daddy ;)

As a family we are still trying to adjust and catch up on home life. One thing Tom and I really have tried to focus on was not letting the outside world interfere with our family time. We have been trying to restructure to put God first and Family second. Everything and everyone else can wait. This is a lot harder than we thought because little things sneak into your life and try to pull you away from those goals. There is also guilt associated with trimming activities and in some cases time with people you like out of your life. There is a battle going on inside me right now. I want life to return to normal because I believe it will offer me some sort of comfort after what we have been through. On the other hand I fear that if things go back to "normal" we won't appreciate what we went through. We have been given a rare gift. We were given an opportunity to cut out everything in our lives that was not important and simply focus on what was and we were okay with that and other people supported us doing so. There was no guilt associated with it, no pressure from the outside. Now that we are home, I find I get overwhelmed much more easily because so much of what was in my normal life was unnecessary. I know we can live more simply because we did it for several months. Of course that wasn't by choice and it involved a lot of stress and discomfort but it showed me that there are definite areas in our lives where we could take a step back and ask if this is time/energy/resources well spent. We are spending a lot time in prayer over this as we get our lives back in order.

The other two boys are doing wonderful. Through the whole illness Mason never missed a day of school and he got two A's and two B's on his report card which we are so proud of. He is finishing up AWANA's at church and is very sad that it is over. Mainly because our friends Mike and Annette and their three boys have been taking Mason in on those nights and he loves playing with the Meyers' boys! Annette has promised he can still come play even after AWANA's, which Mason was pleased to hear. The Meyers have just been one of the many families that have made this time in our life less stressful and brought joy to us because of their servants hearts. Thank you Meyers' for loving on Mason and our family!

While I am thanking people I will have you all know that I am working on thank you cards and I have reached a dilemma which is I don't have addresses for everyone I want to thank. If any of you have any ideas about how to thank people without addresses or e-mails, please let me know. Two people I do have addresses for but will thank on here anyway are my mother and mother-in-law who continue to bless us each and every day. My mother still comes up a few days during the week to help out just because she wants to and it is a huge help! My mother-in-law who had my boys every Thursday through Sunday during Grayson's illness also worked a full time job! She took off every Friday which was a huge sacrifice and she continues to provide anything and everything we need. She just recently cooked and entire Easter meal and brought it to our house because Grayson was unable to join in on the regular large family gathering. I am just blessed with two very special woman that love their children and grandchildren so sacrificially. I love you both so much and Tom and I just could never have done this without you both.

A have some pictures to share with you. These are from the Port to Fort Race for Believe in Tomorrow. Thank you to all the people that donated to this organization. It is truly a great non-profit and the service and housing they provided to us was awesome. This was our family's first outing after our homecoming and it was so much fun. We had an awesome team "Racin' for Grayson" and we had t-shirts which were donated by our local dentist (Moore's Family Dentistry) Thank You! It was a great race and we even got to see one of our nurses there. Kacey was there and followed our shirts to find Grayson. It was so good to see her and it brought back bitter sweet memories of those months spent inpatient with her. We love you Kacey!

Then my friend Rebecca came over and we did a little photo shoot of Grayson in all the cute hats that our friends sent in. We actually got so many hats that we just had to pick some favorites because Grayson simply would not hold still long enough to get all the hats on him. We had to bribe him with pretzels for half the pics :) Thank again Beck for these pictures. They are so funny!

https://picasaweb.google.com/beckmerson/GraysonSHats?authkey=Gv1sRgCKrO0bbtwt_zoAE&feat=directlink

I will post Easter pictures in the next one because this post is getting way too long! Thank you friends and family for your continued support. God is Great and our boy is a champ!

March 29, 2011

So much to update you on and so little time. First I just want to give glory to God for allowing Tom and I to bring our baby home last Friday the 25th! When we were initially diagnosed and signing the consent forms for treatment, my worst fear was that once we left home I might not ever bring my baby back home. Praise God for his healing hands that were resting on my child, His child, through the pain and suffering. Tom and I and all three boys are overjoyed to be home as a family once again.

I will back up and give you a brief update from last week. Grayson had surgery on the 22nd which was planned to take out his Hickman and place a port in his chest. Tom and I did a lot of research and praying about this because it meant additional cuts on his chest and neck and we weren't sure it was necessary. We were told by everyone that the port was the way to go and since it is under the skin he can bath normally, go swimming, etc. Anyway, the morning of the surgery I just didn't feel right about it. I was having major anxiety and no matter how much I prayed I did not feel peace about it. It wasn't that I felt the port was a bad choice but I felt that we should wait just a little longer to put him through another surgery. We were in the Pre-Op area at 5:30am and I was pacing and praying and just felt like something was off. Not a good feeling when baby is about to go into surgery. Tom said he had peace knowing it was going to be better for Grayson and that God was in control. I did not however, communicate everything I was feeling because I thought that maybe I as just overreacting and so I didn't tell my husband that I thought we weren't supposed to be doing this. Anyway, we went ahead with the surgery. I was praying like crazy and felt sick the whole 2 hours he was back there and I was in tears when they told me they were all done and he was okay. We went back to the PACU and he was a mess. He wasn't awake but wasn't asleep and we were told he did not wake up well from anesthesia. It was like he couldn't wake himself up and he was disoriented and even nursing couldn't comfort him. Anyway we wound up staying some extra time in the PACU and gave him some pain meds to help him fall back to sleep. The second time he woke up he was better and I felt much better when we signed the discharge papers. We went back to the apartment and took a nap and when Grayson woke up he was hot and his face was flushed. I took his temp and it was 101.7! This child has not had a fever in the entire time we had been out of the hospital even after the first two bone marrow procedures. Of course he would spike a fever after the port placement that I didn't feel right about. Whenever a post BMT patient spikes a fever it means an automatic 48 stay in the hospital and antibiotics. So we took him back to the ER on the 22nd and were admitted to the 8th floor. It was bitter sweet to be back there. I was hoping to only go back for visits to see our nurses, not because we had to be admitted. The good news was that the doctors think it was just a post-op fever and it went away and didn't come back. All his viral and bacterial testing came back negative so we got to leave Thursday. My nice plan to pack up the apartment never happened because we weren't discharged until Thursday evening. Tom and I were able to get most of the apartment packed up late Thursday night.

Friday morning we went to clinic hoping to hear good news. Our attending told us: 100% donor marrow so you can go home! We were jumping up and down. I was crying and Grayson was like "what the heck is going on?" It was a short visit because we couldn't wait to get out of there. My mom came down and helped pack up the last bit of stuff and Tom loaded all three of our vehicles with the massive amount of "stuff" we had accumulated during our hospital and apartment stay. I couldn't believe how much we had to pack and load. My super strong husband carried three large bins at a time down three flights pf stairs and out to the cars. He loaded the majority of our belongings by himself. (Big mistake!)

We got home Friday afternoon and my mother-in-law had decorated the house with balloons and banners. I was so excited to be home I of course assumed the baby would light up with excitement too. I was wrong. He was overwhelmed and he did not remember our home. He was barely 10 months when we left. He had to adjust to living in the hospital and then living in the apartment so I think to him it was just one more new place. To me it was shear joy to bring home back through our front door.

Gavin and Grandmom decorated the door!

Our family back together. The kids were all clapping!

Our rowdy boys!

The first weekend home Tom and I planned not to have any company and that we would just unplug from the world and focus on our family and reconnect. Hmmm, when will I learn to stop planning. Friday night was hard for the baby because I couldn't leave his sight without him sobbing. We have been so close these last few months and being in a new place made him extra clingy. I didn't get to relax with my boys that night and Grayson didn't want to sleep in his crib. He wanted to sleep on top of me and Gavin had gotten used to sleeping with Tom in our bed while I was gone, so all four of us were crammed in our Queen sized bed and it was not a restful night sleep at all. Saturday morning we woke up and Tom couldn't turn his head left or right and was sore in his upper back (see above for reason why). All day Saturday he was on the couch. Couldn't lift anything, including our kids or really move without pain. We weren't able to unload our cars or start putting things away Friday night so I brought a few things in as I could with a clingy baby and a 3 year old climbing on me. I LOVED EVERY MINUTE OF BEING WITH THE KIDS AND MY HUSBAND! I did not love the chaos of bins and boxes and no partner to help put it all away. Saturday night was even more restless with all 4 of us again in our bed and Sunday Tom woke up and he couldn't move his neck or torso. I had set my alarm to go to the early service at our church and when I got up he couldn't even get out of bed let alone watch two kids while I went to church. My in-laws came to our rescue again and my mom-in-law took Tom to the ER so I could stay with the baby. He couldn't move without pain and they wound up prescribing Valium, Vicodyn, 800mg Ibprofen, and steroids! He came home in a neck brace and was dazed and confused for the rest of the day. So much for a nice relaxing weekend (Tom was relaxed at least after those drugs). I told him I might as well get a job at a hospital because I can't seem to keep my family out of them. He is still not better and needs to see a specialist but he is at least moving around again.

The rest of this week has been a lot of adjusting for all members of our family. I got up yesterday and fixed myself and the baby breakfast and sat down to start eating and realized I had fixed nothing for Tom or Gavin. It was like I was on auto pilot or something. Very strange but I have enjoyed starting some new routines with the kids and I'm really enjoying just the everyday tasks that I missed out on like bathing, brushing teeth, getting dressed, etc. (I am talking about the kids here. I actually did all those things myself while I was gone ;)

Grayson and Gavin a few days after he had come home. He loves his brothers so much.

It is truly a blessing to be home and while I am sure it is going to take us a while to get back into the swing of family life, I am looking forward to every minute of it. I cannot tell you how much more appreciative I am of the time I have with my family. Nothing else matter right now. Thank you all so much for your steadfast support. We are celebrating our son's return with all of you!

Here are some videos you might enjoy (not all of the video links are posted but should be by tomorrow):

Grayson at the apartment a few weekends ago playing with his toy ambulance. He is making crashing noises because that is what his older brothers were doing. Gavin is showing how much he misses mommy's attention. After I watched this back I made sure to give him some extra one-on-one time.

http://www.youtube.com/watch?v=C61BmOxU3OM

Grayson in the apartment eating his favorite food, broccoli.

http://www.youtube.com/watch?v=t-7iWsLqiNQ

Grayson's homecoming which was filmed by our 10 year old Mason (take some Dramamine before viewing)! *I decided not to post this because it was really hard to see what was going on.

Yesterday Gavin was reading Grayson a story.

http://www.youtube.com/watch?v=s-TkXlUnNa8

Tonight Gavin and Grayson playing in Grayson's crib. Grayson is getting much more comfortable with his surroundings.

http://www.youtube.com/watch?v=Iej0y4u-m4A

March 20, 2011

There are not words so all I can say is that I am just overwhelmed with the good willed people that came out to Grayson's Fundraiser today. A wonderful group of women including my mother, Aunt Jenny, Aunt Donna, Aunt Charlotte, and Eileen & Meg Neville sacrificed several months of Friday evenings to plan a  local fundraiser for Grayson. Today all of their hard work produced a wonderful sold-out event that surpassed any expectation I could have had for a fundraiser. It was truly amazing to see all of the people who were so willing to donate and give for this cause. There aren't words to describe the loving kindness I felt as I walked around the room. So many people have been effected in some way or another by Grayson's sickness. It is like a pebble that is tossed into the pond. The pebble doesn't realize the far reaching ripple effect it has had on its surroundings. God is so great and he is using this seemingly sad situation to reach so many with His love. I am grateful for cancer in that it provided an opportunity for God to reveal His love and mercy to me. I am grateful to Him for the opportunity to be a testimony for Him. There have been so many times when I have wanted to yell "Why God? Why is this happening?" but every time I felt that despair He would whisper "Trust me, I know what's best." After today, I understand some of the why? I cannot tell you how humbled I am when I see God's work in other people's lives because they have heard me proclaim His name through this trial. I just have all the more reason to proclaim His name because I know it is not about me, but about Him reaching those he loves and cares for. Those who have lost hope or feel abandoned or let down have a reason to hope.

My cousin Meghan gave me a book at the beginning of this journey and I have read and re-read it countless times during Grayson's illness and I just want to share it with you all. She probably didn't realize the ripple effect her son's illness would have on me and in affect on all of you. It is called "Why?" by Anne Graham Lotz. For any of you that are feeling any kind of despair or sadness or anxiety about anything it is just a comforting book of truths. Thank you all again for your continued prayers and support for my baby and family.

March 19, 2011

For the most part Grayson and I live in a bubble. We do not leave the apartment except for clinic visits  and the only television we watch is Sprout (very educational). Needless to say I am feeling very detached from the world. I do have the interent although this apartment has a very SLOW connection. I have been reading some of the news updates about Libya and Japan and I feel such a burden of sadness. So many people hurting and so much destruction and so many people to pray for. I stare at my little boy and I am just overwhelmed with joy for his existence and the precious time I have on this earth to do nothing but LOVE him.

Grayson has made so much progress these last few weeks. Besides the lack of hair he looks and acts completely normal. We have so much to praise and thank God for. He has just been our rock through this entire ordeal and why should it be any different going forward. This has just reminded us how little control we have over our lives and how dependent we are on Him.

I have been purposing to just spend time enjoying my alone time with Grayson these last few days before we go home. He is just so much fun to play with. He has such personality already. I wish I could post all the videos I have taken of him on youtube but the internet here is just too slow. It takes 2 hours to upload 5 minutes worth of video. I will load them when we get home so that you can all see how cute this little bald-headed baby is. His new thing is that he puts his index finger over his lips and up his nose and says "SHHHHHH"! He learned this from his brothers no doubt. His big brothers are the best "teachers". He copies EVERYTHING his older brothers do. Even the sound effects when they play with cars or action figures. Grayson has to imitate every "vroom" and "bang". We are also going to have to get a trampoline or bounce house because the child loves to jump. When we aren't in the elevator we are jumping on the bed. I must say that I love having boys! A girl really would have been fun to dress but I am just in love with these fearless, running, jumping, climbing, karate chopping, rotten boys of mine. This experience with Grayson has just made me appreciate my time with them so much more. You hear as a young mother that the time will just fly by. Well I am not going to let it fly by. I am purposing not to waste these moments with them.

I was actually able to get out this past week and go to a women's meeting at my church. I love the gals at my church and was so happy to get out of the apartment and see some of them face to face. What a supportive and loving group of people my husband and I are blessed to know. Tom stayed at the apartment with the baby for those few hours. For some reason watching Grayson turned into a 3 person job when I left the apartment. He had one child for a few hours and he had to call in reinforcements! Thankfully my in-laws came to his aid ;) My husband reads this blog on occasion and I just have to say to him "Thank you". Thank you for giving me the choice to stay home and love on our babies. It's a choice that you don't have, but you so willingly give to me. I love you.

Back to Grayson. He is really starting to walk now which means lots of falls and bumps and bruises. I know his platelet count is great and has been great so I am not really worried about the falls. Oh but you should pray for my husband because he worries about every scratch. I think this child of ours is probably going to be a very spoiled rotten toddler because after what he's been through his family won't allow him to cry for even a second.

Well if all goes as planned this should be our last week at the apartment. I can't believe we are almost home. This should be our last Saturday at the apartment and tomorrow our last sad goodbye to our family!
Prayer requests:

Monday- Grayson's blood test of his cortisone levels show they are back to normal and we can stop steroids altogether.
Tuesday- SURGERY! Removal of Hickman and placement of port plus 90 day bone marrow aspirate. Please pray everything goes very well. No adverse effects of anethesia, no bleeding, no infection, quick recovery.
Wednesday- No pain during light therapy after having surgery the day before. This is also our last light theraoy session. YAY!
Thursday- No problems packing the enormous amount of stuff we have accumulated over the past several months.
Friday- A perfect ECHO (heart sonogram) and no changes or damage to his heart function due to all the chemo. 100% donor marrow and the go ahead to GO HOME!!!

Thank you all for your continued prayers and support for our family.

Ignore my last post!

Sorry I was setting a blog up for a friends daughter and was testing out a message and wound up posting it to Grayson's blog. Sorry to confuse everybody!

I will post a Grayson update soon!

Team Racin' for Grayson

DONATIONS MADE THROUGH THIS LINK, BENEFIT THE BELIEVE IN TOMORROW ORGANIZATION NOT GRAYSON BROWN OR BROWN FAMILY!!!!!

Hey Everybody!

Believe in Tomorrow is the organization that is providing our family with the apartment post transplant so that we can stay close to Hopkins. They are a great organization and help lots of critically ill children and their families stay together when they have to be away from home. They operate on private donations from the families staying at their facilities and other charitable contributions. I am running (hopefully pushing Grayson in the stroller as long as doctors say its okay) in their 2011 Port to Fort Race. My friends (Caryn Mitchell, Holley Hovermale and Tiffany Collins) have started the team called Racin' for Grayson. Here is the link to my fundraising page. If you are interested in donating to this organization (Believe in Tomorrow) you can do so online right on my page. If you are in the MD area and want to participate you can sign up to run/walk with Team Racin for Grayson!

Please pray for great weather in Baltimore on April 10, 2010!

DONATIONS MADE THROUGH THIS LINK, BENEFIT THE BELIEVE IN TOMORROW ORGANIZATION NOT GRAYSON BROWN OR BROWN FAMILY!!!!!

http://www.firstgiving.com/fundraiser/grayson-brown/racin-for-grayson

March 8, 2011

Felt so much better on Monday. The sun was up and we had a great clinic appointment. We decided to switch Grayson's Hickman out for a port. Thank you to everyone who sent information and experiences with ports v. Hickman’s. They can do it at the same time as the bone marrow but they had to switch the day so now his surgery and bone marrow aspirate will actually be on March 22. They said we should still go home that weekend.

Grayson also gets to stop his Ambizone infusions. This was his last IV med so we no longer have to infuse anything at home except for our daily flushes. He does however need to have an IVIG infusion which will be four hours long on Friday. Not looking forward to that clinic visit. He is much more mobile now and the space is so tiny so I will have to get creative on ways to keep him busy during those four hours. If you have any ideas on how to keep a one year old stationary for 4 hours please send them my way.

Grayson had a tough physical therapy appointment today. He was tired and fussy and cried through every exercise. Our PT said it is partly the age because now that he's a big 1 year old he wants to control everything. Is that all it takes is a year to become completely like his mother ;)

I have met so many families lately and talked to so many people that have similar stories of life threatening illnesses. Of course most of these new friends I met at Hopkins so I guess that isn't that astonishing. However, most of the kids that are in clinic with us are in much worse shape than Grayson. My heart just aches for these babes that are undergoing chemo for years and years and having constant surgeries and all sorts of complications. We met Faith a few weeks back. A 4 year old little girl who was diagnosed in September with B-Cell ALL and has already had brain surgery, several rounds of chemo and is now going to undergo a bone marrow transplant. He baby sister is a 100% donor match. Her mom is military and from what I can tell the Dad is not in the picture. Faith is just so sweet. She is very shy but lets me hold her look-a-like baby dolls that have shaved heads like her. Please pray for Faith and her mom and sister who are in for such a bumpy road. I can just look around that clinic and know how lucky and blessed we are to have Grayson doing as well as he today. Seeing your kid get sick like this is without a doubt life changing but without faith it can be life shattering.

One last prayer request: A friend of my sister's had a baby at Hopkins a few days after Grayson was admitted for his BMT. Her baby is still there in the PICU and has undergone 2 or 3 open heart surgeries before 12 weeks of age. They live on the eastern shore and have 3 others kids back home and are traveling back and forth to be with their son who is appropriately named Theodore Rambo! PICU life is nowhere near as cozy as we were on the Oncology floor so please pray for Baby Rambo, his mom and dad and siblings. If you would like to read his story his mom, Amanda has a blog for him. http://rambosrampages.blogspot.com/

We are all too familiar with Hopkins PICU. I am so thankful Grayson was never sick enough to go there. I am not sure if I mentioned this before but when our son Gavin was 4 weeks old we discovered a serious heart condition called SVT and we were in the Hopkins PICU for a week unsure if our new baby was going to live. Of course we know now that the doctors and nurses that saved his life actually saved two!

March 6, 2011

Today is Sunday. It was raining and gloomy today. I feel that way right now. We have so much to be thankful for and my head knows this but my heart only knows that my family has left yet again and gone home while Grayson and I stay behind. Grayson knows this sadness all too well and responds with even more passion than I. When Tom, Mason and Gavin get their coats on he reaches out desperately to get into Tom's arms. Every Sunday he assumes falsely that if Daddy is holding him he will get to go too. I typically hold Gavin as we descend in the elevator from the apartment to the downstairs lobby. When we reach the lobby there is a shuffle of children and Tom and I switch armloads. This is the only time that Grayson is ever unwilling to be held by mommy. He cries and reaches for the trio that is heading out the door as I wave goodbye and blow kisses. Once the door closes he looks straight into my eyes and cries. "Why can't we go too mommy"? At least I think that's what his eyes are asking. I just cuddle and hold him and do my best to distract him by letting him press all the elevator buttons (except the emergency one). What do I care? There are only 4 floors and we aren't rushing back to anyone. He is always delighted and comforted by the noise and lights of the elevator buttons. Coincidentally, my 3-year old is also fascinated with the private elevator and I can say that we spend an unnatural amount of time in the elevator during the weekend. Tom was telling me tonight that Grayson is going to be beside himself when he finally does get to go home too!

I have for the most part lately only given great news about Grayson's recovery. There is nothing terrible to report which I am thankful for but this Sunday I was reminded that my kid has been through a lot and is definitely still not normal. Grayson threw up on me twice today. The first time I was covered in breast milk and hot dog pieces from my nose to my waist. I got my mouth closed in time ;) I have become so used to wearing Grayson's puke that I've forgotten how I smell without it. I realized after my second outfit change, that it had been a few days since he puked last. He throws up almost every morning before appointments and at various times throughout the day he will gag and spit up, but it has been calm the last few mornings. I guess he decided to make up for that lull today. I am starting to get concerned about this because Grayson is on antacids that are supposed to reduce the reflux but every time I give them to him he throws them up. He was on a Prevacid and now Zantac and he doesn't like either. I am at a loss because the medicines that reduce the vomiting make him vomit. He also has anti-nausea drugs that can be given as needed but I hate giving them round the clock because its one more drug for his body to process and the bouts of nausea are so infrequent throughout the day that it seems unnecessary.

The doctors aren't very concerned about the vomiting because he is holding most of the meds and breast milk down. His eating has really taken a dive but he still nibbles here and there and he isn't losing weight. Of course he isn't gaining any weight either. It just started bothering me today because I'm sure he can't feel good during those times when he's heaving. I am sure he is having nausea and reflux and that burning acidic after taste. This just shouldn't be. He shouldn't have to be dealing with this at just one year old. I know he's a tough kid and he's been through a lot but I don't want this to be his "normal". I would like this part to stop now and his eating habits to improve. If you think about it, please pray that his little tummy would be healed and that the vomiting/reflux would cease.

He has also been fussing more lately. I am not sure if it’s just teething or something else. No fevers thankfully. If it is teething we can't give him Tylenol because it could mask a fever but we are allowed to give him oxycodone which is a lovely narcotic that knocks him out. I don't mind giving it at bedtime but the rest of the day he just fusses. I will be talking to the NP about the throwing up and fussiness tomorrow so we will see what she says.

We will also be discussing the idea of switching Grayson's Double Lumen Hickman (Central Line) out for a port. It is still like a central line but it goes under the skin somehow and they access it with needles opposed to the tubes hanging out of his chest all the time. I am leaning toward this extra procedure because the central lines have greater risk of infection and right now he can't get his chest wet at all. Normally I just sponge bath him, but everyone once in a while I will put him in the bath tub. You can imagine that bath time for us looks like a Mars mission with Cling wrap, safety pins, and a lot of tape. The port would allow us to take baths and go in the swimming pool this summer. If we choose to go this route, I am hoping they will be able to do this surgery while he is under for his 90 day bone marrow test. Please pray for wisdom and clarity regarding this decision.

All in all these are very minor things but they are still relevant to his recovery and well being. Thank you again to all those who are praying and supporting us through this time. Each prayer sent in Jesus' name, each message filled with love and encouragement, each phone call, visit or text are a gift to me and my family. God continues to give us grace each day to get through what we need to get through and find things to be thankful for. Today I am just so thankful for my husband and my other two sons, Mason and Gavin. Having all boys can be crazy and loud and gross and smelly at times, but I am so thankful for all them.

March 2, 2011

I can't believe I am writing that date. Is it really March already? Time flies when you're having fun I guess (yes that's a joke). Grayson's doctor told us that Grayson is doing well enough to only come to clinic twice a week now. I think I actually wrote that once before because they told me this once before and then changed their minds. A week or so ago they had said we could cut back to twice a week but then Grayson had a GVH flare and his skin turned red and itchy. That won us a trip back to clinic and we returned to 3x a week visits before we could even experience the 2x a week visits. Today they gave us the go ahead to skip our normal Friday clinic appointment and just come Monday. I am happy about this but bummed that we still have to go to the hospital for light therapy at 8:30am on Friday. Next week I can try to schedule light therapy for the same two days as clinic but it just didn't work that way this week.

My doctor also let me know that she scheduled our 90 day marrow test for March 21 and that we would also have a routine Echo and EKG to make sure that the high dose chemo didn't cause any problems with his heart. She told me that the marrow test is on a Monday and that we should have the results back that Friday during our clinic appointment. She also said...oh my gosh I can hardly type this...I am just so excited because of what she said...literally giddy and smiling as I am typing this write now...she said...if it shows that he is still 100% donor cells WE CAN GO HOME THAT WEEKEND! AAAAAHHHHHH! I literally shrieked with excitement into the phone!!!! That was the first time anyone in that office has mentioned going home and it felt so good to hear those words. It was like the the part of the roller coaster when you just reach the peak and start your decent where your stomach gets caught in your throat and then you let out the shriek of laughter and delight. Well maybe that's just my reaction to roller coasters. Anyway we have a finish line in sight and I am even more excited to write the date March 2 today because I can say that Grayson and I might get to go home THIS MONTH! WHOHOOO! I can hardly contain myself.

Please please keep praying for us this month that the bone marrow test on March 21 shows 100% donor cells and that we can be reunited as a family in our home.

I also wanted to thank all the wonderful people who have been bringing my family dinners while I am away. This is sort of a generic "Thank You". I have major guilt over not being able to write individual thank you cards to each of you. You all deserve personalized Thank You cards but I just do not have the ability to do that right how. So please know how much you are appreciated even if I can't mail a card to let you know.

February 26, 2011

We got the results back from Grayson's 60 day bone marrow test and it showed 100% donor (Gavin) marrow! So much praise and joy!!!! We have 4 more of these tests to go but we are thrilled with the fact that Grayson is still in remission and that Gavin's cells seem to be doing there job!

February 23, 2011

I am really counting down the days until we can come home. We are at day 63 post transplant today with no GVHD flares, no infections, no re-hospitalizations, no major problems to speak of which is AWESOME! Actually it's really quite amazing that Grayson is doing so well. The doctors stopped his blood pressure medication today which is one less medication to give. We are down to just 5 meds per day! So cool! They also told us he is doing well enough to stop coming to clinic 3x a week. Now we only have to go on Monday's and Friday's. This means light therapy will only be twice a week as well. This is great news because our clinic/light therapy days are very draining because we are up and down in parking garages and on two different floors for light therapy and oncology and I choose to carry my very large baby instead of using a stroller because I hate waiting for the elevator in the parking garage in the freezing cold weather. The stairs are always faster. Anyway its just great that he is healthy enough to start cutting back on his visits and it just makes me feel one step closer to home.

I miss home. I wonder if Grayson will even recognize our home when we get back. He certainly recognized his brothers but I wonder if the actual house will be familiar. Looking back at videos of him before we left made me realize how little he was when this all started and how much he's grown during this time. He is so big compared to what he was. He is just a much more mature baby now and I wonder when he goes home if it will just be one more new place we are moving to. Not a big deal, he will get used to it and will be thrilled to see all of his family in one place regardless of the physical location. Tom used to tell me when he got home from business trips that "home" wasn't about the place, it was about the people. The kids and I were "home" to him not the house. That is so true. My home comes to visit on weekends now and when they do I no longer care about going to my house, I just want the people, no matter where we are.

Grayson's bone marrow test results should be back by Friday night. At least that's what I was told today. I am not sure if this will really happen, but I am hopeful we will know something by the end of the week. I am hoping to at least know whether any of his white cells look abnormal even if we don't have the breakdown of Gavin v. Grayson percentages. We continue to pray for 100% engraftment and continue to give thanks to all the amazing people in our lives and the wonderful blessings God give us each day.

Second Bone Marrow Aspirate

Grayson has his second bone marrow aspirate tomorrow (Monday) morning at 9am. Please pray for a smooth procedure and 100% Donor Marrow again!

We had a wonderful weekend together as a family. The boys and I took a visit to Ft. McHenry which was so much fun. We got a little history lesson, ran around outside on a beautiful day and flew kites. It was so windy that Mason was afraid to hold his because he thought he might blow away. Grayson wore his mask diligently but he desperately wanted to get out of his stroller and run with the other two.

 Friday was a bright but windy day at Fort McHenry!

 Gavin's face is so priceless

 He was smiling for the picture under the mask ;)

Gavin's Fishy Kite!

Grayson has been fighting me to do his physical therapy exercises so Holley was kind enough to come back down and work with him again. Of course he was well behave for her at first...then he cried, nursed and fell asleep! Oh well, we will keep at it. He is already making progress but he is very strong willed (serves him well fighting cancer) and when he's not interested in exercising he certainly lets me know.

Thank you to IES for your donation and for all of the support you are giving my mother-in-law through this. Tom and I are so thankful for all of you!

February 15, 2011

I am losing track of which days are which and what meds Grayson gets on which days because they are changing so fast. It seems like every clinic visit a med gets dropped, added, or changed. It is becoming increasingly difficult to keep organized. Grayson's liver numbers have been worrisome because they just won't normalize. They normalized for a little while (long enough for us to be discharged) but then his enzymes skyrocketed. His bilirubin is staying in normal range but the enzymes and ggt are very high. They believe it is do to one of the medications he is on called fluconozole. It's an antifungal that they give to prevent any fungal infections. Sometimes it can have this effect. However, we stopped that and changed it to an IV med called Ambizone (the one I didn't want him to have when we were hospitalized) over a week ago and there hasn't been much difference. The Ambizone is given 3x a week by IV over a two hour period which is not bad considering he only has to be attached to the pole for 6 hours out of the whole week. The dose is low enough that it shouldn't be too hard on his kidneys. If they notice any problems we will have to restart the IV fluids overnight. We will see. I am hopinh he handles it fine and that the fluconozole was the culprit.

To be on the safe side they also tested him for Hepatitis and a slew of other bacterial and viral infections which can infect the liver without showing other symptoms. We will see what the tests show on Wednesday. He also had his cortisol level drawn on Monday which showed that he was NOT making his own steroids yet. This was dissapointing but not uncommon. We will have to wean slowly and hope his adrenal glands kick into action. He is supposed to start losing the "moon face" now that the steroid dose is low, but I haven't noticed a change yet. I have noticed a change in his appetite. He is much less interested in food but is thankfully still nursing. He actually nurses all day and all night it seems. He sleeps with me all night, well more like on top of me all night because he nurses every hour or so. He is NOT taking much other liquid by mouth so the nursing is important but I am waking up exhausted and sore from the uncomfortable night sleep with a 27 pound kid on my chest. I know I am whining and as I write this I am truly thankful that I can even complain about this because if he hadn't restarted the nursing he would be connected to a pole 24/7 getting tube feeds, IV fluids and IV nutrition.

Hmm, what else. Grayson is not walking yet :( He is 12 months old and my other kiddo was walking by 10 months. He isn't even crawling. He cruises some but I was concerned about the developmental delays they told me chemo causes. The doctors said he looks good and isn't as delayed as they would expect after lying in a hospital for two months. However, because I was pushing the issue they referred me to Kennedy Kreiger who took my information and talked to their MD's. These doctors felt it important for Grayson to be seen and for him to get some PT just to be sure there were no further delays in gross motor skills (all other skills are great). So they put me down for the first available appointment....MAY 3rd! REALLY, YOU THINK I"M GOING TO WAIT THAT LONG!?! First of all I am not waiting that long to find out whether or not there is a problem and then to have to get appointments for PT after that date could take even longer. I started calling everyone I knew to see if there was a way to get him seen sooner or get PT sooner. Enter Holley Hovermale (halo round her head). A gal from my church who happens to be a Pediatric Physical Therapist who was willing to drive down and see my baby boy in 2 days! Man did God lead us to a good church! It is just full of people blessing us! UBC family know that we cannot wait to return the blessings! Grayson took to Holley right away and Holley gave me some exercises to work on with him. I took all the information she gave me back to my doctors and they were very impressed and baffled that I found a Ped. PT to see him in two days. Yup, God's cool like that! Please pray that these exercises go well for Grayson because he is already resisting when I try them and I am a total softy when it comes to his tears. He cries and I give in and pick him up. The child has been through so much I don't want to see him cry...ever! I am sure I am spoiling him and will probably have my hands full when he's three, but I will just be happy at that point that he made it to three.

Speaking of making it to three...

This is now going to take a turn for sad and depressing so stop reading if you don't want a sad and depressing dose of reality.

A friend who had a daughter go through a BMT two years ago for a different condition holds regular fundraising events for a foundation called St. Baldrick's. They raise money for childhood cancer research for some of the doctors that treated Grayson at Hopkins. This organization has team's of people who voluntarily shave their heads (both men and women) to raise money for cancer research. They are holding an event at Martin's East in March and Grayson is one of the children they are honoring at their event. They pick children that have had childhood cancers and share their stories during the event to raise awareness for childhood cancer. I went onto the event site to make Grayson a page and was totally sidetracked with all the other children's stories. Read some if you like. Have tissues nearby: www.stbaldricks.org

I should preface this with the fact that I have done ZERO internet research about JMML and childhood cancer because you can find all sorts of scary stuff on the internet and it seemed counterproductive at the time to read all the worst-case scenarios. There are so many children effected by childhood cancer and 1 in 5 diagnosed don't live. Of course that number varies depending on the kind of cancer you have. Of course once I started reading, I couldn't stop. It was like one story after another grabbed me. It sort of awakened this desire to connect with other parents who have gone through this even if it was only reading their story. I wanted to know about the other children who had JMML. In hindsight I should've waited until we were through our treatment and Grayson was out of the "danger zone" before I read them. There are so many children lost to this disease and for various reasons. We know that a BMT is the only treatment/cure. It does not respond to straight chemo or radiation. We also know that only 50% of those transplants are successful at curing JMML. Those aren't the best odds, but Tom and I really aren't interested in the odds because we are not interested in limiting what God can do. Reading those stories was sad and depressing but also made me so thankful for our current situation. Our son was diagnosed quickly where other children had been sick with this disease for a year before they got to a doctor that could figure out what's going on. It makes me sick to think they might have lived had the doctor diagnosed them sooner. We would like to think that doctors are the end-all-be-all when it comes to medicine but they don't know everything. Many cancers go undiagnosed because the doctors for whatever reason don't run the right series of tests.

Then of course there is the whole process of finding an appropriate donor match. Having a 100% sibling match is not that common and I read stories of children who had no donor matches at all (even internationally). The fact that Gavin was 100% match is nothing less than a miracle. Then you have to go through transplant which is where most children have complications. It is just awful to read but I have to believe that God's hand is on my baby and on my family. Right now I am thankful for all of the things that have gone right and that he is a smily, happy baby right now. Grayson is by no means free and clear; we still have two years before we can say "yes, it worked". There are plenty of kids who relapse 13 months - 2 years out from tranplant, but I just have to continue believing that God is in control. He has given us strength and grace to get through this much and I have to believe that if Grayson's death could do more for Christ than his life, that He would give us the strength and grace to get through that as well.

Grayson will have his second bone marrow aspirate next week. Not sure what day yet, but I will keep you all posted on the exact day and time. He will have to go under anesthesia again. Please pray for a continued 100% engraftment.

People continue to bless us through this and I just want to thank my mother for her continued sacrifice as she stays at my house and fills my shoes as mom to Mason and Gavin. I love you Mom! 

Here is a video of Grayson having a web conference with my in-laws. Very cute. My husband said to only post the short one but I may post a second one that is longer with Gavin and Grayson.
Short Video Clip: http://www.youtube.com/watch?v=IIhaczWjx_A

February 11, 2011

God just continues to heal my son and bless my family through Grayson's illness. I have so much to update you on because I realized my last real update on Grayson's condition was only a day or two after we left the hospital. It has been ten days since we've been discharged. I actually had to sit here just now and add up the days because it feels like we've been here a month already. The last time I gave an update Grayson was receiving NG feeds 6 times a day, had began nursing again, was on IV fluids for 10 hours a day (overnight) and taking 14 different medications at all different times of the day. In just 10 days Grayson has picked up his eating habits (thank you steroids), pulled out his own NG tube but is nursing/eating well enough to leave it out. He was nursing when he pulled it out and it was so fast neither of us realized what happened at first. He was holding the whole tube and tape in his hands and looked up at me with a sort-of puzzled look which I am sure mirrored mine and then I realized what he was holding and I laughed at him which made him smile. It was a triumphant smile like-"I don't need this thing anymore mom!" I called the doctors but they said as long as he was nursing and eating well and his weight didn't drop significantly that we could leave it out. Well my little chunky monkey has kept his weight right around 12kg (26-27lbs). He did that about 4 days after we were home and it started a chain reaction. Every clinic visit we would hear that we could reduce or drop one of his medications.

Today we went and we are down to only 6 meds per day! Plus the steroids are down to a low enough dose that we should be able to stop them on Monday. We were supposed to be able to stop them today but my husband foiled that plan. Tom came to visit Wednesday and moved my car to a better spot right in front of the building (very sweet of him). He stuck my keys in his pocket and took them home to Westminster (not so sweet of him). Of course it was an accident and I didn't realize until I was walking out the door with baby in arms that my keys were not in my purse. We had to draw a cortisol level by 8:30am in order to make sure his body was making steroids naturally before we completely stopped them. Did you know that our bodies naturally make steroids every morning? After 9am the level drawn would not be as accurate so we had to reschedule that lab for Monday morning. No big deal but it means we continue with steroids over the weekend.

We still made our clinic appointment this morning and the doctors are very, very impressed with Grayson's progress. His skin is looking so much better. He only has a little bit of peeling on his hands and feet and the rest of his skin is pretty much back to it's normal milky whiteness.

I am going to write another post because I started writing this one days ago and was interrupted, but I will finish my thoughts in another more current post.

Family Reunion

Grayson finally got to have his whole family all here at the apartment. Together at last! As soon as he saw Mason and Gavin his eyes were locked on them and he was giggling hysterically. Everything they did or said was so funny to him. He could hardly catch his breath he was laughing so hard at them. This of course made the rest of us hysterical because we haven't heard him laugh like that in a long time. He missed his brothers so much and was thrilled to have them back for a little while (so was I). Here is a video of the three of them. Mason is making him giggle and Gavin is doing his own thing (beating up on Grayson's tortoise).

http://www.youtube.com/watch?v=55KwY5sdHvI

February 2, 2011

Tom and I have been crying and laughing tonight. Tears of joy of course. Grayson's first chimerism came back to show the breakdown percentage of Gavin's cells versus Grayson's cells found in the first bone marrow aspirate. Praise God because he loves his children so much and is so faithful to us. The results showed 100% donor cells (Gavin's cells). I have chills as I write this. We could not have received any better results. God just continues to exceed our expectations and amaze us with true miracles. We see these miracles everyday in our son's progress and in the outpour of love from the people who have been touched by our story. My heart is just full of love right now. Love for my God, for my family, for my mother and all her sacrifices as she cares for my other son's right now, for all of you praying and sustaining us with your prayers. I just can't express my appreciation because appreciation and thankfulness doesn't cover what I feel. I am just in awe of all of your reading this and in your response to my son's story. I could just go on and on about the countless ways people have reached out to us and I want to eventually write and tell you all about how God is moving people's hearts but I simply don't have the time right now. I will just tell you that he always provides for his children beyond what we could imagine in every way ~ spiritually, emotionally, physically, financially...

February 2, 2011

Ladies and Gentlemen...Grayson Brown has left the building!!!!
Discharged February 1, 2011 at 5pm after 51 days in the hospital!
Praising, Praising, Praising!

Grayson signing his discharge papers

(we had a nice view of the JH Dome and city during our stay)

Mommy is so happy and so proud!

We are settling in our little one bedroom apartment in Canton. It is a very sweet and cozy space and is specially designed for post transplant patients. It is only two blocks from Canton Square which has some really great places to eat which is a plus. The kids and Tom can come and stay whenever they want for as long as they want. The only restrictions for visitation is that everyone is perfectly healthy and hasn't recently been around someone who had any signs of sickness (cough, runny nose, sneezing, etc.)

We will be back and forth for our outpatient clinic appointments and light therapy on Mondays, Wednesdays and Fridays. Originally Grayson was supposed to be sent home on TPN (IV nutrition) but he surprised everyone (especially me) when he took up breastfeeding again after 5 weeks of not eating. I thought he was done for sure being that he was 12 months and hadn't eaten anything for 5 weeks. I had been praying that he would start again after transplant ~ not because I enjoy nursing a 27 pound toddler with teeth, but because I knew the antibodies in the milk would help protect his body from infections. His immune system is not just fragile from the transplant but they are also giving him two different immune suppressing drugs to treat his GVHD. The doctors all told me in the beginning not to get my hopes up but that it would be a wonderful thing if he did go back to breastfeeding after transplant. Most of the younger doctors had never seen a breastfed baby go through transplant and that is because most kids that go through transplant are older than Grayson or too sick to breastfeed before transplant. Anyway, I decided I would at least try to keep my milk supply in during the time he wasn't eating. I pumped so much in the beginning that I felt part bovine. I am glad I did though because not only is it helping Grayson's immune system but it also meant we no longer had to be on IV nutrition! Yay! We only have to run a bag of fluids through the night and do 6 NG tube feeds throughout the day. Oh and for those that think its gross or weird to breastfeed your baby when they are a year old...it's not! The American Academy of Pediatrics recommends all babies breastfeed for the first year and longer if possible.

My new full time job as nurse is going okay. I haven't messed up yet but the entire day is spent measuring and giving meds, tube feeds, breastfeeding, journaling ins and outs, offering as much table food as possible, and changing lots of diapers due to the diuretic he is on. Oh and we sleep too which is so much more peaceful and comfortable now that we are out of the hospital. Some meds are once a day, some twice and the others every 6 hours, except for Bactrim which is given twice a day on Saturdays and Sundays only. I have a spreadsheet for the med schedule and a journal where I write down everything that goes in and out. I feel confident that I can do this, but I can't imagine leaving him for even an hour to go anywhere until he is off at least half of these meds. Tom could probably do it if he had some practice but one of us has to work so he doesn't have much time for that. Did I mention how wonderful my husband was? He works so hard and spends the rest of his time running back and forth between our house and the baby and me. I wish I could get it on camera when he walks in the door here. The babies face just lights up with a huge smile and he squeals Da-Da! I am sure my face has a similar expression. He is our hero!

For as much as Grayson is going through he is doing so well. He is eating lots of table food which I hope means we can cut back on the tube feeds and lose the NG tube soon. He is tolerating most of his medications. Now that they are all by mouth he is having a harder time with them because some taste bad and the sheer volume of medications is hard on his stomach. I am thankful he hasn't thrown any back up though. The true test will be this weekend when he has to take the Bactrim. Please pray he keeps it down because it is so important to get that down and keep it down.

Grayson's whopping 14 medications!

There have been so many people that God has sent to us in our time of need. Everyone of you reading this and praying for us are included. I wanted to give a special thanks to Kate and Jason Ring and their girls Caroline and Hailey for all of the wonderful things they have done for us during this time. We love you all!

Caroline and Hailey: Grayson loves his new special lamp with the cars on it and he sends hugs and kisses to you both!

I also want to thank the people from Department of Agriculture who used to work with my mother-in-law for their amazing gift. You have now idea how touched Tom and I were to receive your letter and gift. We don't know any of you but we thank God for your generosity towards our family.

So many things to be thankful for:

My wonderful husband
Breastfeeding

No TPN

Grayson eating so well and tolerating NG tube feeds
Taking meds so well by mouth
A cozy clean apartment
Ben and Jerry's Dulce Delish ice cream (I really missed ice cream while I was at the hospital)
Living next to nacho mama's and other great places to eat

Please Pray for:
Safe travel to and from clinic and light therapy appointments on Mondays, Wednesdays, and Fridays
For Grayson to eat enough table food to stop NG tube feeds
Be able to take and keep down the Bactrim on Saturdays and Sundays twice a day.