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!