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.