January 26, 2011

Today I just want God to have all the glory for the great things he has done.

Over the weekend we were told that if Grayson's liver numbers didn't improve/come down by Monday morning we would have to start another round of high dose chemo that targets the memory T cells. The weekend was rough because Saturday his numbers increased and then Sunday they stayed the same. Just to give you an idea a normal total bilirubin is between 0.8 and 1.2 and a normal direct bilirubin is between 0 and 0.4. Saturday Grayson's total bilirubin was 6.1 and his direct was 5.5. Sunday everything stayed the same. So we were nervous Monday morning when labs were drawn. I asked for the results at 2:00am and when she brought them to me a little after 3:00am it showed a slight decrease in both total and direct. I was happy but not sure if it would be enough improvement for the doctors. When they rounded they told us they were happy with the progress and decided to wait and see what a few more days of being on the Tacrolimus would do. Tuesday morning his number took an even bigger drop down to 5.0 and 3.7. This morning his total was 3.4 and direct was 2.2! Very good progress. Although we are not in normal range yet, the numbers are trending down and that means NO CHEMO!!!! YAY!!!

We also met with the eye doctor because Grayson's lower lids were sagging a bit which could be a sign of chronic GVH but the doctor said it wasn't GVH just some puffiness and sagging from the chemo or steroids. He said his lids will look normal again it will just take some time and healing. This was a major relief!

Grayson has been eating pretty well. The steroids increased his appetite and his willingness to put food in his mouth so he has been eating mashed potatoes and little pieces of chicken, cheese sticks, applesauce and any junk food he wants. In the family lounge on the 8th floor there is a piece of paper taped to the door and the title is "You know you're the parent of a kid with cancer when...", It goes on to list 101 items and one of them says "You are thrilled that your child ate cookies for dinner". It is so true because even the doctors encourage us to give him whatever he is willing to put in his mouth and swallow. In Grayson's case the doctors told us they were shocked at what he was eating because they assumed he would have more problems because of his age. Normally kids that go through a BMT, especially children have negative associations with food and eating because of the intense pain they had with mucositis. For older kids they can remember liking food, but the babies tend to have long-term problems with eating. The doctors have decided to start weaning Grayson off of the steroids since the Tacrolimus seemed to be helping the GVH. We will see what happens to his appetite and eating habits once the steroids are out of his system.

I think that weaning off the steroids could be good and bad for Grayson. There is no way of knowing whether the decrease in bilirubin was due to the Tacrolimus by itself or the combination of the Tacro and steroids together. We will see as he weans whether the GVH flares again. One good things about coming off the steroids is that I will hopefully have my happy, mellow baby back again. Steroids cause major mood swings and fits of rage and I found it both disturbing and comical to watch my 1 year old glare at me and start screaming till he was red in the face over nothing at all. Other times he would fall apart in a puddle of tears. I am hoping that this isn't a preview of his teenage years ;) The steroids have some other yucky side effects too that I will be glad not to have to worry about. Anyway I am praying that the Tacrolimus is all that is necessary to treat the GVH and that the lack of steroids won't cause his skin or liver condition to flare. Today he had some good moments. Here is propped up on his elbow watching Sid the Science Kid.

I am going to try to get Mason to sing the song Sid sings to his mom each day: "I love my mom, my mom is cool, but now it's time for having fun at school". Is it too much to ask a 10 year old to sing that before school everyday? ;)

Grayson is also taking his feeds through his NG tube very well. He is up to 20cc per hour of breast milk and sometimes pediasure. As this amount increases the IV nutrition can decrease which means less stress on his liver and a happier digestive system. They are tossing around discharge dates again and the latest we heard was that Monday we will get to move to St. Casmir's. This is the other housing facility we will be in for the next couple months until Grayson is well enough that we can go home to our house. If he can take enough food by mouth and through the NG tube, then we won't have to go home on IV nutrition which means he won't have to be hooked up to a machine all the time when we leave. That would be optimal but we will deal with a machine if we have to as long as he is healthy and safe.

We had our first light therapy appointment today which went well. It is essentially a stand up tanning booth with UVB lights all around you. Grayson got a special pair of goggles and so did I which made for a fabulous photo opportunity which my lovely nurse Sam was too eager to capture with my phone! Fortunately the amount of preparation took much more time and effort than the actual time in the lights. We were in the lights for exactly 33 seconds. I had to turn him around at about 15 seconds to get both sides. I was glad because the booth was very cramped and if we had been in there any longer I am sure he would have peed on me.

You know my goggles are going to be the next BIG fashion trend!

The light therapy was in the outpatient center so we actually got to take Grayson off the 8th floor and out through the main hospital. It was kind of neat because it was the first time he had left the unit since we arrived on December 12. His eyes were huge and he was pointing and babbling under his mask. It was a pretty exciting day for us. We won't see the effects of the lights for a couple weeks and this will be something he will have to keep up for several months 3x a week. In the meantime I have been giving him soothing oatmeal baths and slathering him in aquaphor every couple hours.

I have to laugh because even though we may leave Monday, we will still be spending the majority of our time back in the hospital. At least we will have a place where my other two boys and Tom can come and stay on the weekends and we can spend time altogether again. That will be so wonderful!

I continue learning my lesson that worrying is superfluous because prayer is so much more effective. Time and time again God has met our needs and answered our prayers. He continues to prove that despite the odds the doctors give us, He is in control. I have peace knowing that I can hand my worries over to Him because He loves Grayson even more than I do and is taking such good care of him. I feel him continually saying "Don't worry, I got this!" All I really need to do is just continue to spend time with and love on my baby which is such an awesome gift. Thank you all so much for your prayers. God is so faithful to hear and answer them.

Here are some other pictures and videos I thought you all would enjoy. The grandparents visit regularly which I am thankful for because they bring me good food!

Pop Pop Brown

  

Grandmom Brown

Pop David

MeeMom David

Grayson's Team of Nurses:

Alex

Kasey

Sam 

Suzanne

Grayson LOVES his nurses!

January 22, 2011

My husband must have read my blog post or just picked up on my gloominess because he volunteered to stay at the hospital with the baby so that I could go home (to my actual house) and sleep in my own bed and spend time with my boys. I was worried at first because Grayson is not doing well, but I knew I needed a break so I left Grayson with Tom and Kasey (our nurse) and trusted he would be well cared for in my absence. It took me a while to actually leave the room because I was having second thoughts, but once I got on the elevator I was really excited. I was speed walking through the hospital and then when I hit the doors, I actually ran to my car. Not just because I was alone in Baltimore City but because once I actually made the decision to leave I couldn't get home fast enough. I listened to the radio and sang along and just felt happy to be driving and to see the snow. When I got home my boys met me with bog hugs and kisses and it just felt so good to see them outside of the hospital. We stayed up late playing Wii Just Dance 2 (quite the work-out) and MarioKart. I was in stitches because my 3 year old was actually doing the moves. We all had such a fun time and I got to sleep in my own bed and slept in. I had breakfast with them and took time to take care of myself before I went back to the hospital.

Of course when I got there, reality hits and I look at my baby and I am immediately reminded of how sick he really is. He is bright red from the GVH skin rash. It is sort of like a really bad sunburn complete with peeling, dryness and itching. I have socks on his hands because he is constantly scratching despite the medications they are giving him for itching. He is on benadryl, atarax and methylprednisolone (steroid to treat GVH). The only relief is that I continually rub aquaphor all over him. I keep the open container by our bed and rub it on him all through the night and all day long. It doesn't stop the itching but I think me just rubbing on his skin helps relieve some of the itch.  His skin is also very sensitive. So sensitive that when he had the liver biopsy, they put tape over his eyes to keep them closed and when they took of the tape, it ripped the skin away from the bridge of his nose. His skin is so prone to break down that anytime he scratches his skin open and he bleeds. Poor little man has scabs all over his face, head and tummy. He is still beautiful and despite the discomfort he still smiles for us.

His skin GVH is not the only concern now. The liver biopsy showed GVH in the liver which can be harder to cure than the skin. Unfortunately the usual treatment of steroids has not been effective for him so they added another immune-suppressing drug called Tacrolimus. They also still have the option for light therapy for the skin but that is only going to be an option if the liver GVH is under control. They started this new drug on Thursday night and it is now at a therapeutic level in his system. We have until Monday morning to see if the bilirubin has decreased. If it has then we will start the light therapy for the skin which is supposed to be very effective. If this Tacrolimus does not make a change and start decreasing his bilirubin and healing his liver, then we will have to treat his GVH with more chemotherapy. It will mean another round of high dose chemo aimed at the T cells in his peripheral blood opposed to the stem cells like the chemo from his bone marrow transplant regime. To hear the words chemotherapy again makes my heart ache and my eye sting but God is in control and he knows what he is doing so I cannot worry I can only pray for peace and understanding. In addition I am praying that the Tacrolimus is the drug that just works for Grayson's liver and that we can start light therapy Monday to start treating his skin.

Grayson is making progress in some other areas. He has been eating small bits here and there. He ate almost a whole container of baby food (applesauce). Occupational Therapy has been coming to see him and says there is nothing physically preventing him from eating but rather a mental block. His mucositis was pretty bad and he associates anything being put in his mouth with pain. He is getting better though and I hope that he will be able to start taking more by mouth and less by IV. He also had his NG tube replaced. He sneezed out his first one (powerful sneeze). The second one he was awake when they placed it and it was very unpleasant. He is taking breast milk through NG at a constant rate 24 hours a day to keep his liver happy and to try to increase his appetite. He does scratch at the NG tube because it is taped to his face but overall I think he is doing pretty well with it.

Please pray for his bilirubin to come down by Monday and continue to fall and stabalize with the Tacrolimus. Pray for no chemo!!! Pray for relief and healing from the itchy, red, raw skin.  Pray for continued strength for my little guy. He has been through so much and he really is so strong. One last thing. Grayson's lower eyelids are also having problems. They seem to be separating from his actual eyeball. Not severe yet but the doctor says there is a condition like this associated with chronic GVH. WE DO NOT WANT CHRONIC GVH (Grayson has actue GVH right now). Please pray that this is something else maybe just irritation/inflammation from the skin GVH. 

Thanks and love to all of the individuals, families and churches praying for our family. You are what is helping us get through each day.

January 19, 2011

I feel it necessary to add a disclaimer because it is now 2:00am and I am very tired so my writing may have typos or grammar mistakes. Sorry about that ;) Hopefully it all makes sense!

Today was Grayson's first birthday. We weren't able to celebrate the way I would have like to, but I am thankful that we were able to celebrate this day at all. Back in November when we were first diagnosed I feared that Grayson wouldn't make it to his first birthday. God was and still is stronger than my fears and Grayson is still here and doing fairly well considering what he's been through. We have had some setbacks this past week and that is why I haven't written too much recently.

Grayson has developed a more sever skin rash due to Graft versus Host disease (GVHD) and he now has GVHD of the liver which is not good at all. He started steroids which are what they use to treat GVHD of the skin and it can sometimes work for the liver. They also want him to do light therapy for his skin rash which is like going to a tanning bed. I will cover up and hold him inside a box of UVB lights. I am not sure how he is going to handle this but we will deal with that in a few weeks when it starts. His skin breaks down very easily because of the GVHD and it itches like crazy. Please pray that the steroids cure his GVHD of the skin quickly because he is on so many medications both IV and topical to help with the itching but they aren’t working. I have to put socks on his hands because his entire body looks like he got into a fight with a cat.

The doctors aren’t sure right now what we will need to do in the case of his liver GVHD. He is on steroids which in rare cases have cured the liver GVHD but in most cases they require a long term medication and steroids are only short term medications due to their side effects. Please pray that the steroids will normalize his bilirubin and keep it normalized so that no other medication will be necessary. He also had a lot of abdominal pain after his biopsy yesterday but they put him back on the narcotics which helped by making him sleep all day. He also got an NG tube yesterday (a small tube that goes in through the nose all the way down into the stomach). This allows Grayson to get some food into his stomach without having to swallow it. He is taking the feeds fairly well although he threw-up 3 times today. It is very important that he start eating and even though he has taken a few bites here and there he is just not interested to warrant taking him off the IV nutrition. The poor child hasn’t eaten in a month but you would never know it to look at him. He is still just as fluffy as ever.

During the biopsy they went ahead and did his first bone marrow aspirate. This was the first time they looked at Grayson’s marrow to see whether Gavin’s cells have engrafted. We got very good news for his birthday that Gavin’s cells have in fact engrafted but we do not know yet what percentage of the cells are Gavin’s versus Grayson’s. The best news is that all of the cells in the sample looked normal and healthy! Praise Him, Praise Him, Praise Him! This is very promising news and we should have a breakdown of the percentages by the end of the week. We will have one of these done at day +60, +90, +180, +3??, and +7?? post transplant. If they are all clear after the 2 year make, the chance of relapse drops significantly. Again this was the first of many, but at least we are starting off with some excellent news.

Grayson was awake enough this afternoon for the hospital staff to celebrate him. The doctors and nurses came in and sang Happy Birthday to him and they brought him presents and two cakes. One cake was for Grayson to dig into and the other for his family to eat. Of course I would up with the entire sheet cake sitting in my room with no one but me to eat it, so I gave it back to the nurses who were more than happy to eat it for me.

I will post some pictures and video of the staff bringing in his birthday surprises. The staff on this floor really is a God send because they really love my baby and take such good care of us. Ms. Lizz, the child life specialist decorated his door, bought all the party stuff right down to the “My 1^st Birthday” napkins and plates. She thought to get two cakes and just did so many other little things to try to make his first birthday special even though we were here in the hospital. Thank you God for Ms. Lizz and her kindness.

Please continue for wisdom and clarity in the diagnosis of each complication or condition, for effective treatments and for a quick recovery.

There were other reasons that I did not write last week. I was struggling more last week with hospital living than I have any other week before. My cousin who had a baby in the NICU for 70+ days had told me that dealing with this sickness would be like running a marathon rather than a sprint and we need to pace ourselves. Last week I felt like my legs were kind of giving out on me because I was tired of running this marathon. I know that I am here for a reason and I know that God is working in me and through me during this time, but I miss my regular life. It has been 6 weeks since I left my house, my husband, my kids, my church, my friends, and everything else that screams home and comfort. I don’t like that the hospital life has become my new “normal”.

I miss my husband and my kids desperately. I miss my bed and curling up with my husband at night. I even miss the middle of the night when our bed would go from having two people to four people. Which meant no sleep for Tom but at least my babies were snuggled up close. I miss the sound of Tom’s keys in the door when he got home from work. The kids and I would race to the door to welcome him home with hugs and kisses. I miss hearing their voices, their silliness and their giggles. I want to take Grayson home and be a family again. I know that living apart doesn't change the fact that we are a family but it does make me long for the days when we can all be together again. I keep telling myself “just a few more months”. I know we are strong enough in our faith and in our relationships to get through this but I can honestly say that I took my life and some of the people in it for granted and I didn’t realize that until I no longer had them.

Please pray that I can continue to do whatever it is that God has me here to do and that my attitude will reflect nothing but praise and appreciation for the many ways in which I have been blessed through this.

“I will praise you in this storm, and I will lift my hands.
For you are who you are, no matter where I am
And every tear I cry, you hold in your hands
You never left my side, even though my heart is torn
I will praise you in this storm.”

January 17, 2011

Okay, this really stinks. I am not sure why but blogspot didn't save my post when I hit "publish post" and I am not going to rewrite the whole thing tonight. Should've saved it in word first! Here are the important things:

Grayson has GVHD of the skin and now of the liver as well. He is having a liver biopsy tomorrow which they decided to combine with his first bone marrow aspirate. They will also be inserting an NG tube for food. Please pray for wisdom for the doctors and no complications or adverse reactions to anesthesia. I am also praying for more than 95% of the cells they see in the bone marrow aspirate are Gavin's cells. Sorry for the short post but the last one was way too long to retype :(

Thank you for your prayers!

January 9, 2011

Today the Raven's beat up on the Chief's which was exciting to watch! Even more exciting than that was that Grayson took his first walk in his walker since before Transplant Day! I unfortunately did not catch it on video (groans from the crowd).

On the 7th we started noticing his white cell count returning. These are the first stem cells to engraft and they were showing the doctors that they were starting to grow and multiply. He also got something called an engraftment rash where he looked flushed all over and had bright redness on his palms and soles. They were all (1 Attending, 2 Fellows, 2 Residents) standing in a circle around Grayson and each took turns examining and pointing and oohing and aahing over that rash. I have to say that Tom and I have never been more excited about a rash in our lives! That day he seemed to stay awake longer and after the doctors left he actually sat up for a while and played with his toys on his play mat. Tom and I were in our glory as we played peek-a-boo, stacked blocks, read books, and tickled our baby. He actually giggled aloud. It wasn't quite his old belly laugh but it was enough to make me well up with tears of joy. It really was so cool.

The next day, the 8th, the rash has subsided which the doctors expected because the engraftment rash only lasts for about a day or sometimes a few hours when the cells are first engrafting. Anyway, his counts were up even higher. His ANC (Absolute Neutrophil Count) went from 264 on the 7th to 857 on the 8th! These are the wonderful white cells that help fight bacterial infections and also help heal the mucositis. His white cells are coming in super fast which is very exciting. We also saw a decrease in his weight, his girth and his liver enzymes which were all positive things because it means his liver is healing itself. I just can't tell you how awesome it is to see God work to heal our son right before our eyes. Three days ago our baby seemed lifeless and now it seems like he has done a 180 and is headed for discharge. It is amazing how one tiny cell can take our baby from being lifeless to sitting up and laughing. We are most definitely "fearfully and wonderfully made"!

Grayson now has his days and nights confused which is normal when you are living in a hospital, but still strange for a baby. He woke up on the 8th around 10:00pm and was ready to play. At 12:00am on the early morning of the 9th he seemed alert enough to stand up and walk around a bit. We decided to let him try the walker. At first when he got in it he just sat there and we were unsure if he remembered what to do in it. Although he was cruising at 10 months and getting ready to walk, we expect him to have some developmental delays due to the chemo. In addition he hasn't used his leg muscles in about 3 weeks so there is some atrophy. Although "atrophy" wouldn't immediately come to mind when you look at those chubby thighs! None the less, he did struggled at first but he eventually started moving and headed for the hallway just like he used to. Tom pushed the IV pole so he wouldn't have to pull that extra weight and I coaxed him along. He got about halfway down the hall and started fussing. I thought maybe he was in pain but the nurse assured me it was good for him to use his muscles again so we let him continue. He was quite clumsy in his steps and ran into a few walls. The walkers should really have a warning labels for babies under the influence of narcotics :)  He got tired after half a lap and his hands and little legs started shaking. So I scooped him up and we smothered him with proud kisses and took him back to bed. A very proud moment indeed!

When we got his lab results back on the 9th it also showed a continued trend in his liver enzymes and bilirubin which showed continued liver recovery as did his stable weight and girth. We are giving thanks for his liver recovering because we were all very nervous for a while. I don't know why we were nervous because God had things under control the whole time and he faithfully came to our aid and healed Grayson's liver.

We are preparing for discharge now and there are several requirements we have to meet before we can go to our other housing facility. We have to stay within 15 minutes of the hospital so the baby and I are moving to an apt. designed for post BMT patients in Canton for at least 2 moths after discharge. We will have outpatient visits here at Hopkins three times a week for several months but will lessen to 2x and then 1x as we get further out from transplant day. He will also have to come back for the bone marrow test procedures which are under anesthesia at the 30 day mark and 60 mark. Those tests will show whether the white cells that are coming back are Gavin's or Grayson's and whether they are normal, healthy looking cells. He will have these tests done at specified intervals over the next two years. After the two year mark, his chance of relapse go down significantly. I am probably getting ahead of myself because first he has to be healthy enough to leave the hospital. So, to leave the hospital he must maintain a ANC of 2000 or greater without the aid of the GCSF (miracle white cell booster drug), he must be able to take and keep down oral medicine of which he will have many, he must completely of the narcotic pump, and he must be taking some food or drink by mouth. Oh and no fevers, rashes or infections of course. This will still take some time but he has really turned a corner here and we just know God is orchestrating his rapid recovery.

Praying Hearts & Hands

My wonderful MOPS group put together some "Praying Hearts & Hands" for Grayson's room. Each of the mom's personalized a heart with their name and some helpful versus or words or encouragement. Then all of their children traced their hands and pasted them onto bright colored flags with their names. It really brightened up our room and our spirits! Thank you MOPS and MOPPETS and all of the helpers that contributed to this special project. Grayson and I both love to look at them. My friend Rebecca was able to snap some pictures of the day she brought them to us. You can see from the pictures he is starting to have more happy moments. We are so thankful that he is recovering so quickly from the mucositis now that his white cell counts are starting to return!

She also brought me a photo of Grayson that was taken just before he was admitted for chemo that we put in a signature frame for the nurses and doctors to sign. We hung it outside of his door and all the medical staff has been signing it as a keepsake for him. When he saw his picture he was fascinated by it.

Grayson Cole

January 6, 2011

We have had waves of up and downs in Grayson's condition. We saw the first signs of engraftment over the last two days and his white cell counts seem to be recovering which is very exciting. His mucositis seems to be getting better which we can tell because he is starting to be vocal again and put things (toys and/or medical supplies) in his mouth. He is sitting up and though he is not moving much he is starting to interact with us again. Smiles here and there, pointing to things, saying dada and mama. We are thrilled to see this and even though we are not seeing it consistently yet, it is such a joy to see him return to his former self every once in a while. He still sleeps for most of the day and night and is still having a lot of nausea when he is awake but all in all his mucositis is headed in the right direction. I caught one of his better moments on video and wanted to share it with you all. Tom's friend sent Grayson a care package with some books and duck feet. So adorable!

http://www.youtube.com/watch?v=D6iSQi3Envk

His liver on the other hand is also showing signs of engraftment. However, these signs need to be watched closely because they can also be signs of VOD and/or Graft Versus Host Disease (GVHD). The doctors are funny because they say a little GVHD is good but not a lot. They would like to see a skin rash but no problems with the liver or digestive tract.

He still has a lot of nausea and they aren't sure why and he is still not interested in breastfeeding or any other food at this point. He is also having nose bleeds despite the numerous platelet transfusions. Because he won't eat he is still on IV nutrition and that adds additional stress to the liver. There are two specific prayer requests and that is for Grayson to start eating again (breastfeeding) and for a very healthy liver.

I also wanted to share that God is continuing to work in my life during this time. I had begun a Bible study not long before Grayson was diagnosed and one of the things we had to do during the study was to write some spiritual goals for this upcoming year. My main goal was to be bolder in sharing my faith. It is not something that comes easily to me. I get in situations where I feel like there may be an opportunity to witness and I cower because of self-doubt and fear of embarrassment. It is amazing how routinely I am able to share it now with the people on this floor. God is bringing me the opportunities and I am no longer stifling the Holy Spirit's desire to shine but embracing and praying that God will give me the words to plant a seed. It is amazing how the God will create moments and a prompting in me to talk about my faith or just simply share the gospel message. I feel like I am playing volleyball and He is just setting the ball up in the air and waiting for me to spike it! (My brothers are probably laughing at that analogy because I never was able to do that when we played beach volleyball on vacation). I am just really thankful for these opportunities. Please pray for my nurses on this floor Amanda, Alex, Kasey, Sam K. and Sam S. I have really enjoyed getting to know these girls and each are such a gift to me and Grayson.

My family is so blessed with a wonderful church family and I wanted to take time to acknowledge Uniontown Bible Church for their loving kindness towards my family. Thank you for your cards and letters, your gifts, your meals, and most importantly your prayers. We love you and are so thankful to be involved in a church family such as this.

January 4, 2011

I have so many stories and random information that I would love to share with you all, but so much transpires during the day that make it hard for me to write a blog post every day. Not to mention if I wrote everything down it would be more like a short story or book instead of a blog post. I do want to share a few updates and hopefully before this is over I will be able to share some of the others items with you as well.

For those of you that don’t know, Johns Hopkins is a teaching hospital. On the pediatric oncology floor, there are nurses who are the front line of care for Grayson. All of these nurses are required to have at least a B.S.N. Bachelor’s of Science in Nursing and then they go through an orientation/training program where they are given the most complicated cases on the floor and tend to those children under the directions of their preceptor (trainer). This is just background to let you know that they are educated and qualified to care for my son. Then we have Residents on our floor. Residents are doctors who have completed medical school and are now in their training period for practicing medicine during which they rotate through the different specialties trying to learn the basics of each and then decide which specialty they would like to pursue. They are technically doctors but have only been practicing medicine for a year. Our floor only takes 2^nd year residents and while they have had 4 years of medical school and 1 year of practicing medicine, none of them have practiced oncology until they get to this floor. So essentially we have 1^st year oncology doctors who are on the floor 24/7. Then there are Fellows. These doctors have completed their residency and chosen oncology as their specialty and are now in training to become oncologists. They are on the floor during the day and then on-call at night. The highest qualified doctor in oncology or any specialty is the Attending. They have already been through med school, their residencies, and their fellowships and are now practicing oncologists. These guys we typically see in the morning for rounds (about 15 minutes) and then we never see them unless there is a big problem. I go through all this background to let you know that while we are at a world-renowned hospital with awesome doctors, we unfortunately don’t see the awesome ones unless there is a problem. What does this mean? Well, it means if I have questions about a lab result or symptoms that I may see in Grayson, I have a nurse or a resident answering my question. This would be okay if it was a general question, but due to the complexity of his disease my questions are anything but general.  

The important part to all this (MEN START READING HERE): When our nurse came in and told us Grayson’s blood typing had some B+ red cells in them she told us this didn’t mean that he was necessarily engrafting yet (Gavin’s stem cells creating new healthy cells in Grayson’s marrow), but that it was a good (actually she said “great”) early sign.  I asked a resident to explain what that meant and he said it could be the start of engraftment and that it was a good early sign. I spoke to a fellow and she said that she was confused by the appearance of red blood cells because Grayson is still neutropenic (no white blood cells) and the first stem cells to engraft would be white blood cells. Red cells are the last and since he has no white cells it didn't make sense that there were red cells. She told me to ask an Attending. When I finally asked the attending today, he explained that he would not take it as a good or great sign at all. He said that red blood cells have the longest half life (they last the longest in our bodies) and that even though they tried to eliminate the majority of Gavin’s mature red blood cells out of the marrow before giving it to Grayson most likely the mature red cells that were found in the blood typing test were just left over from the transplant and this is not something we should get excited about. Also he mentioned that the blood typing tests are incredibly sensitive, so even if there was one left over red cell of Gavin’s in the sample it would have caused a “non result”. The tests came back today that Grayson’s blood type was still O+. All of this is to say that ATTENDINGS ARE TOTAL BUBBLE BUSTERS!

I have been told by many of the attendings now that I really need to e-mail them the majority of my questions unless it is basic because Grayson has a disease that most people on this floor haven’t seen and while the residents and nurses may attempt to answer my complex questions, the answers aren’t necessarily accurate. SO REASSURING ;) 

This is why I have to have faith in God and not in man because even at Hopkins not everyone knows what they’re doing and to be honest they are all human and capable of making mistakes. This is why as a mother I watch like a hawk but pray even more than that! This is also why the prayers of all of you are so important and critical for his care. Please continue to pray for wisdom and discernment for all of our doctors and nurses.

Next, Grayson was taken for a CT scan and ultrasound yesterday because despite the powerful antibiotics he is on, he spiked another fever. They were suspicious of a fungal infection and wanted to see if they could see an actual fungal infection in the lungs, liver or kidneys. His test results came back with no evidence of a fungal infection however, they cannot rule it out. Fungal infections are very dangerous because they can be extremely hard to get rid of and can be deadly in a baby with no immune system. They are most likely going to put him on Ambizone which is the most powerful antifungal available but it is very hard on the body. They will need to watch his kidney’s very closely because he is on so many medications already, plus IV nutrition that make his kidney’s have to work very hard. Adding this new drug that is notoriously hard on the kidney’s makes his risk for problems that much higher.

In addition to this, Grayson’s ultrasound showed that his liver was even more enlarged than when he had started chemo. Tom and I were under the assumption that his liver and spleen which were engorged prior to chemo had gone back to normal size. We thought this because a resident and a fellow felt them and said they felt normal. The enlarged liver and slightly enlarged spleen could mean a host of things and might be nothing to worry about, but the liver might be showing early signs of VOD. If you look at my prayer request list this is a pretty big risk of bone marrow transplant. It is also the scariest in my opinion because of the lack of treatments for it. Grayson is retaining fluids right now, gaining weight and his girth (around is tummy) is climbing.  The breakdown of his liver enzymes is also climbing. All of these things I watch closely (I get copies of all of his lab work and know how to read them now). The residents and fellow said they are watching him but would be more concerned with large jumps in these things. I expressed my concerns with the rising levels of all of these things to the attending today and he said he agreed that they were cause for concern and they went ahead and recalculated how much fluid he needed at this point and how much he was actually getting and he was getting more fluids between medicine, blood transfusions, etc. than anyone originally thought. So, they are cutting his fluids back starting today and giving him a diuretic to get rid of some of the additional fluid he is storing.

Cutting back on fluids is one way they can prevent VOD and make sure no additional fluid is leaking into his lungs, but they also need to make sure they are giving him enough fluid to flush his kidneys of all the medicine’s (especially if they start Ambizone) that it doesn’t cause problems with his kidneys.  I am informing you of all this because I believe prayer for his organs (LIVER, SPLEEN, LUNGS, and KIDNEYS) are so important right now.

Because I believe so strongly in the power of prayer I am pleading to you all to send this blog site to one person and ask them to please pray for my baby boy. He had a good moment this morning where he actually sat up and smiled and even tried to talk a bit which sounded hoarse but was wonderful to hear. He is so sick the majority of the time and I want to be able to see my son smiling and talking again. So PLEASE pass this on and ask someone else to pray for him. You all are going to see how God is faithful through this and how he answers prayer.

I am so thankful for all of you reading this and for your caring hearts. Thank you for sharing the pains and joys of this situation.

January 1, 2011

We have so much to be thankful for already in 2011!

This is not going to be a long post because I have to take care of my baby but I wanted to share some good news with everyone because you all deserve to share in this with us. Okay so Grayson's blood type is O+ and Gavin's is B+. Because Grayson gets frequent blood products (red cells and platelets) his typing is done every 3 days to ensure that no mistake is made in the type of blood he receives. Anyway, they routinely drew it last night with his normal labs and this morning it came back as "no result" because they found B+ red cells in Grayson's blood sample! I have goose bumps as I am writing this because our God is an Awesome God and he never for a moment has left us hanging. He has always had his hand on this situation and already had a plan for healing long before Grayson was even born. I am just always amazed when I can see Christ's promises become reality in my own life. I just wanted everyone to know that our prayers are never in vain and that though this new development does not mean my son will be cured it is just a sign that something is changing in Grayson's marrow. They still need to do more testing to see whether his blood type has actually changed or if the sample just happened to have some of Gavin's random red cells. I don't believe it was random. I believe God is healing my baby boy at a miraculous pace. All the nurses and doctors were SHOCKED to see evidence of any change in marrow this early after transplant. All we could say to them is that miraculous things happen when you have so many people praying for them.

SHOUT NOW, FOR THE BATTLE IS ALREADY WON!

That is how I feel right now. I want to shout with joy! My baby is so disgustingly sick with severe mucositis but all I feel is JOY! Not because he's in pain, but because this battle is already won. God is sovereign. We needn't worry about any further blood tests or bone marrow tests because regardless of the result, our God is victorious and he has given us so much grace and shown us so much mercy! We love you Lord!

I just want to take a moment to give thanks for all of the cards, letters, and uplifting messages people have sent to us during this time. Even though I cannot always respond to them individually, they have all reached Tom and I and been comforting and encouraging during this trial. Thank you to all those who have posted responses to this blog and my facebook updates as well, not only is it a constant encouragement to read and re-read your messages but it is affirmation that God is reaching people through this medium.

So much LOVE from the BROWN's to all those praying for us and lifting us up through this trial.