“Today I look at my hero and see my beautiful daughter and couldn’t be more proud of her. Today she is giving her brother her bone marrow to cure his PNH and save his life. Today I will be forever grateful to GOD for blessing us with this incredible human being so that we have the honor to be called her Mom & Dad.”
So I wrote that on March 25th – Day 0. And when I got home and was going to put it in my blog, suddenly it seemed so unworthy of a post. I mean, how do you verbalize the miracle we witnessed? How do you verbalize the overwhelming thanks you are feeling? The relief? The debt of gratitude to everyone and especially to Sydney and to GOD. Today I realized the same way we do everything else in our lives, we do the best that we can with what we are given. Those words were given to me in a moment of time during that day and now I give them to you. I hope you find something to be thankful for today.
I’m sure you are wondering about the whole transplant process. Well after 10 extremely hard days for JT to prepare his body for Sydney’s bone marrow through some pretty intense drugs, the day was long and not quite as difficult for him as it had been. Sydney came to the hospital at 7:30am for her pre-op assessment and prepare for her surgery. There was a lot of sitting around and waiting to meet different doctors, sign consents, and receive instructions. The actual surgery didn’t begin until 10:30am. We had a private room to sit in during our wait with chairs and a TV. Jim, his Mom, and I were with her and JT remained in the Transplant Unit in his room watched by the nurses. Sydney was given general anesthesia and the operation took approximately an hour and a half. Two of the BMT Doctors performed the surgery by inserting large needles in both of her hips, into the bone and extracting approximately 2 liters of marrow out of it. It was then transported upstairs to JT’s room where it was infused in him over a 6 hour period. They didn’t have to “clean” up the blood as I originally told some of you because Sydney and JT share a matching blood type as well. If the blood type did not match, they would have to remove the red blood cells. One more miracle to add to our list!
After an emotional recovery (anesthesia can do that to you) we wheeled Sydney to JT’s room to rest for awhile and for all of us to be together. The actual infusion was in a drip into his Central Line and is a similar process to a blood transfusion. I thought the marrow would be thick but the nurse told me they add saline and heparin to it to thin it out for the drip.
Jim stayed with JT for the next couple of days and so far JT has shown no signs of rejection or allergic reaction. They began a new chemotherapy called Methotrexate to keep his immune system suppressed for the next two weeks. They anticipate it taking 10 to 14 days for the bone marrow to graft and JT’s body to start making new cells. This is an average, so don’t call me on April 11 – I’ll be in touch.
“Grandma” and I took Sydney home where she slept the rest of Thursday and managed to get up and eat a little supper before sleeping the rest of the night. Friday she rested most of the day on some pretty good pain meds and later had a fun night with a visit from two church friends, Ethan & Jonathan who kept her entertained for a few hours. Saturday she was “sucking it up” once again to fulfill her social calendar obligation and insisted I take her and school friends Katie, Naomi & Eka to East Cobb Park to hang out. It was a beautiful day and I couldn’t resist. The highlight of the afternoon was an encounter from an Atlanta Journal Reporter who snapped shots of the girls and they are hoping to be in next Sunday’s Leisure Edition for an article on Spring! We ended the day with a donor celebration dinner treated by Grandma. Today I am at the hospital with JT hoping she is resting quietly because she is insisting to be at school bright and early tomorrow. You go girl!
JT continues to take it easy, doing his “chores” which mainly consist of laps around the nurses’ station, breathing exercises, school work and mouth care. I brought him some fettuccine alfredo and he ate for the first time in about five days! Who can resist the Stouffers? Our friend Kim sneaked his favorite fruit roll ups into my suitcase and JT has managed to eat and keep down 4 of those since I’ve been here. I can’t even imagine how that is sitting on an empty stomach. Hopefully I won’t have to “see”!
Today I am thankful to you my old & new friends and to my family for their continued prayers for a safe and speedy healing for my two brave children. I am thankful that Jim is home from Wisconsin. And I am thankful to GOD for continuing to show me ways to laugh and smile and to be at peace with this.
xo Sabrina
“Oh, give thanks to the LORD! Call upon His name; Make known His deeds among the peoples!” 1 Chron 16:8.
“A hero is no braver than an ordinary man, but he is brave five minutes longer” (Ralph Waldo Emerson)
Sunday, March 28
Wednesday, March 24
The Tube
Chemotherapy. Not much to say, it sucks. But it’s over and today is a day of rest. Except for one more tiny procedure. JT has not eaten in the last few days, so that in order for him to get the nutrition he needs and keep his digestive system in working order, they installed an NG Tube. I like to call it the nose-to-gut tube. He was not happy, but pretty Brittany came to walk him through it and be here for him & hold his hand, so he agreed. It’s another one of those “standard procedures” in the BMT world that somehow slipped the initial consult meetings and handbook. So now we rest and wait for Day 0, Thursday, March 25, 2010.
Saturday, March 20
Home Away From Home
Where do the days go? The first week in the Bone Marrow Transplant (BMT) Unit has been a whirlwind of people and medicines! There have been a lot of both. JT entered the Unit on Tuesday morning and promptly asked if he could go downstairs to the cafeteria. The kind nurse informed him this was his home away from home for awhile and the only time he could leave his room is to do laps around the nurses’ station. That, among some other rules & procedures that they failed to mention in our consults, really hit hard for all of us with the realization that we are moving forward to a cure and just how serious a transplant can be.
The first round of medicines that JT started on is something called Antithymocyte Globulin or ATG. There are two types…rabbit and horse…they have him on rabbit. ATG is immunosuppressive “drug” that works to prevent rejection of Sydney’s bone marrow. I haven’t been able to find a good explanation on line to link for you, but from what I gather, the addition of ATG greatly increases the odds for a successful outcome of the transplant (and I could go into a little conversation about T-Cells, but I won’t bore you). So my little bunny received four days of it along with copious amounts of steroids, Benadryl, Tylenol, and other happy medicines to deal with all the side effects.
Today, JT received his first round of Chemotherapy. He is getting two drugs in his cocktail. One is called Cyclophosphamide (Cytoxin) and the other is called Fludarabine. Both these drugs work to suppress the bone marrow. He will receive these on & off for the next four days. On Tuesday he will begin another anti rejection immunosuppressive drug called Cyclosporine, and then on Thursday he will wake up to Transplant Day!
He’s had many different reactions ranging from fever, to headache, to nausea, to agitation and the nurses have been really good about treating all of them. The biggest problem we’ve had this week has been his blood sugars. The steroids, in addition to making him meaner than a junk yard dog, wreak havoc with his diabetes. This has been our only issue that we’ve really had to go to bat for JT’s well being and after 4 days of arguing with Endocrinology, I think they are finally on the same page with Jim, I and the BMT Team.
So for those of you who have stuck with the boring medical part of this entry, now to answer your burning questions…No, JT has not thrown up yet. No, JT has not lost his hair. No, the sharpie autographs wore off. Yes, JT has attended school (and according to him liked it – go figure).
As far as the rest of us, we are doing great. Jim and I have tagged team every other day all this week to keep ourselves “fresh” to care for JT and Sydney. What we discovered quickly though is we really didn’t have time to accomplish anything at home that needed to be addressed because we were always on the move between home & hospital. Beginning last night we extended our stay to two nights in the hospital with the hope of resting, relaxing and taking care of business while we are home. In addition to that, we’ve been able to continue to attend Sydney’s tennis matches, get her to school, practice and to hang out at the mall or friends houses and keep life as normal as possible for her. She came to the hospital on Friday to visit, but after a long day, JT was sound to sleep by the time she arrived. She came back down today for the first dose of Chemo and to have lunch & watch a movie with him.
I will try to track down an address if you are interested in writing him a letter and post it in the next day or two. JT has also been keeping up with friends on Facebook, texting, and playing COD with his friends from school on the PS3. He also enjoys reading your posts on the Pray for JT Facebook group and watching the number of members grow, so from the bottom of my heart I really appreciate your support. We do not need anything at this time. We have so many games, books, art supplies thanks to our wonderful teachers and friends. We are trying to rotate them out because there are too many to keep in our cute little room. We got a digital frame as a gift from a friend which I thought was a great idea and we are in the process of loading it up with pictures for him to have in the room. So if you feel the need to do anything, then email or post a picture of you to the Facebook group and we can add them to JT’s collage. Thanks everyone for the prayers and well wishes. It has been a great source of comfort.
Have a great weekend!
XO Sabrina
The first round of medicines that JT started on is something called Antithymocyte Globulin or ATG. There are two types…rabbit and horse…they have him on rabbit. ATG is immunosuppressive “drug” that works to prevent rejection of Sydney’s bone marrow. I haven’t been able to find a good explanation on line to link for you, but from what I gather, the addition of ATG greatly increases the odds for a successful outcome of the transplant (and I could go into a little conversation about T-Cells, but I won’t bore you). So my little bunny received four days of it along with copious amounts of steroids, Benadryl, Tylenol, and other happy medicines to deal with all the side effects.
Today, JT received his first round of Chemotherapy. He is getting two drugs in his cocktail. One is called Cyclophosphamide (Cytoxin) and the other is called Fludarabine. Both these drugs work to suppress the bone marrow. He will receive these on & off for the next four days. On Tuesday he will begin another anti rejection immunosuppressive drug called Cyclosporine, and then on Thursday he will wake up to Transplant Day!
He’s had many different reactions ranging from fever, to headache, to nausea, to agitation and the nurses have been really good about treating all of them. The biggest problem we’ve had this week has been his blood sugars. The steroids, in addition to making him meaner than a junk yard dog, wreak havoc with his diabetes. This has been our only issue that we’ve really had to go to bat for JT’s well being and after 4 days of arguing with Endocrinology, I think they are finally on the same page with Jim, I and the BMT Team.
So for those of you who have stuck with the boring medical part of this entry, now to answer your burning questions…No, JT has not thrown up yet. No, JT has not lost his hair. No, the sharpie autographs wore off. Yes, JT has attended school (and according to him liked it – go figure).
As far as the rest of us, we are doing great. Jim and I have tagged team every other day all this week to keep ourselves “fresh” to care for JT and Sydney. What we discovered quickly though is we really didn’t have time to accomplish anything at home that needed to be addressed because we were always on the move between home & hospital. Beginning last night we extended our stay to two nights in the hospital with the hope of resting, relaxing and taking care of business while we are home. In addition to that, we’ve been able to continue to attend Sydney’s tennis matches, get her to school, practice and to hang out at the mall or friends houses and keep life as normal as possible for her. She came to the hospital on Friday to visit, but after a long day, JT was sound to sleep by the time she arrived. She came back down today for the first dose of Chemo and to have lunch & watch a movie with him.
I will try to track down an address if you are interested in writing him a letter and post it in the next day or two. JT has also been keeping up with friends on Facebook, texting, and playing COD with his friends from school on the PS3. He also enjoys reading your posts on the Pray for JT Facebook group and watching the number of members grow, so from the bottom of my heart I really appreciate your support. We do not need anything at this time. We have so many games, books, art supplies thanks to our wonderful teachers and friends. We are trying to rotate them out because there are too many to keep in our cute little room. We got a digital frame as a gift from a friend which I thought was a great idea and we are in the process of loading it up with pictures for him to have in the room. So if you feel the need to do anything, then email or post a picture of you to the Facebook group and we can add them to JT’s collage. Thanks everyone for the prayers and well wishes. It has been a great source of comfort.
Have a great weekend!
XO Sabrina
Monday, March 15
Hair Today Gone Tomorrow
Time fly’s when you’re having fun right? We packed a lot into the week to see as many family and friends as possible before JT will be admitted to the hospital. We have the greatest group of friends and appreciate all they have done.
The beginning of the week was the final doctor meetings and consents. Wednesday, we enjoyed cupcakes with neighbors at our friend Lina’s house. On Thursday, our favorite hair dresser Gina @ Variations shaved his head. JT had always talked about having his friends at school sign it and although the Doctors thought the request was a little strange, the end result proved to be quite fun for him. I’ll upload some pictures if you missed them on Facebook. Friday night was dinner with our dear friends and second family to JT, The Allen’s. On Saturday, friends Mark & Kim Hawks treated us to a night at Big Canoe in the N. Georgia Mountains to chill and relax and forget! A special thank you to all of you who joined us this past week and especially to Simpson Middle School for making JT’s last day special, putting up with the autographing, the goody bags & gifts and throwing him an ice cream party. And to the Addison Elementary Teachers who put together the most awesome gift/activity box to take to the hospital!
Today has been a slow start to the surgical portion of the week. We woke at 5am to make it to the hospital by our appointed time of 7:45 to have the central line installed. Unfortunately there seems to be a lack of surgeons and more emergent cases than JT’s. Doesn’t make it any easier for a 13 year old hungry boy that can’t eat or drink before his procedure. We’re just happy his blood sugars (he’s Type 1 Diabetic) have remained stable. The anticipated surgery time has been moved to 2:00 and we have high hopes to be finished before rush hour when we drive home. He'll be released tonight only to turn around and be admitted to the hospital tomorrow morning to begin treatment.
Until then, thank you all for your continued prayers, comments, cards, and signing the Facebook wall on the group “Pray for JT”!
xo Sabrina
The beginning of the week was the final doctor meetings and consents. Wednesday, we enjoyed cupcakes with neighbors at our friend Lina’s house. On Thursday, our favorite hair dresser Gina @ Variations shaved his head. JT had always talked about having his friends at school sign it and although the Doctors thought the request was a little strange, the end result proved to be quite fun for him. I’ll upload some pictures if you missed them on Facebook. Friday night was dinner with our dear friends and second family to JT, The Allen’s. On Saturday, friends Mark & Kim Hawks treated us to a night at Big Canoe in the N. Georgia Mountains to chill and relax and forget! A special thank you to all of you who joined us this past week and especially to Simpson Middle School for making JT’s last day special, putting up with the autographing, the goody bags & gifts and throwing him an ice cream party. And to the Addison Elementary Teachers who put together the most awesome gift/activity box to take to the hospital!
Today has been a slow start to the surgical portion of the week. We woke at 5am to make it to the hospital by our appointed time of 7:45 to have the central line installed. Unfortunately there seems to be a lack of surgeons and more emergent cases than JT’s. Doesn’t make it any easier for a 13 year old hungry boy that can’t eat or drink before his procedure. We’re just happy his blood sugars (he’s Type 1 Diabetic) have remained stable. The anticipated surgery time has been moved to 2:00 and we have high hopes to be finished before rush hour when we drive home. He'll be released tonight only to turn around and be admitted to the hospital tomorrow morning to begin treatment.
Until then, thank you all for your continued prayers, comments, cards, and signing the Facebook wall on the group “Pray for JT”!
xo Sabrina
Monday, March 8
Last Week of Whatever You Call Normal
It seemed so far away last week. Only seven more days now of school, homework, cleaning your room, feeding the dogs, getting yelled at for playing on the PS3 too long. He has been extremely tired and achey this weekend and it was hard to rouse him for school this morning. I hope that is GOD reminding me of the better days that are coming.
I also wanted to say a quick "thank you" to everyone who has joined the "Pray for JT" Facebook page and are praying for a speedy & succesful recovery. It is very heartwarming to see the response the page has generated in such a short amount of time and not a day goes by that JT is checking it, reading your words of encouragement and commenting as the number of members increase.
Some key dates coming up:
March 15 he will be getting a central line put in. This is called a CVL or Hickman among other things. It will give the doctors a semi-permanent access to administer all the medicines he will be recieving. After all of the IV's he's had these last few months I think he may actually be looking forward to this. He will be sent home that evening with a large dose of steroids...look out diabetes!
March 16 he will be admitted to Childrens Healthcare of Atlanta at Egleston. He will be begin his chemotherapy to prepare him for transplant.
March 25 Sydney will be admitted for her procedure to extract the bone marrow. She will be sedated for about two hours while they enter through the back of her hip in a series of multiple "pokes" into the bone. If I remember correctly, they are looking to extract about 2 liters.
March 26 is what they commonly refer to as Day 0 in the BMT world. This is the day that JT will receive the bone marrow from Sydney. It will be in a drip bag into the CVL similar to a blood transfustion.
xo Sabrina
I also wanted to say a quick "thank you" to everyone who has joined the "Pray for JT" Facebook page and are praying for a speedy & succesful recovery. It is very heartwarming to see the response the page has generated in such a short amount of time and not a day goes by that JT is checking it, reading your words of encouragement and commenting as the number of members increase.
Some key dates coming up:
March 15 he will be getting a central line put in. This is called a CVL or Hickman among other things. It will give the doctors a semi-permanent access to administer all the medicines he will be recieving. After all of the IV's he's had these last few months I think he may actually be looking forward to this. He will be sent home that evening with a large dose of steroids...look out diabetes!
March 16 he will be admitted to Childrens Healthcare of Atlanta at Egleston. He will be begin his chemotherapy to prepare him for transplant.
March 25 Sydney will be admitted for her procedure to extract the bone marrow. She will be sedated for about two hours while they enter through the back of her hip in a series of multiple "pokes" into the bone. If I remember correctly, they are looking to extract about 2 liters.
March 26 is what they commonly refer to as Day 0 in the BMT world. This is the day that JT will receive the bone marrow from Sydney. It will be in a drip bag into the CVL similar to a blood transfustion.
xo Sabrina
Wednesday, March 3
So many doctors!
JT has had to go through a series of tests before the actual transplant can begin. A week ago Monday he had a PFT - pulmonary function test - for his lungs at Scottish Rite. It mostly involved heavy breathing into tubes that made him dizzy and act goofy. I know, not like him huh?
Then on Tuesday we were at Egleston most of the day testing his kidney function via a test called a GFR. This was done by injecting nuclear medicine into his blood and doing a series of blood draws via an IV over a 5 hour period. The levels of the radioactive material were measured to make sure the kidneys were filtering properly. He was not glowing that evening when he went to bed, so I am assuming all went well.
He also had an echocardiogram to check his heart. This was done by sonogram so it was a little more fun for him. The doctor gave him two thumbs up on his results...the kid has a good heart.
We met with his Child Life Specialist who will work with JT to make sure he is happy and has everything he needs during his hospital stay. He says he and "Brittany" are tight. She was pretty cute.
A meeting with the Financial Counselor was eye opening and jaw dropping so I'll spare you with the details for now. Suffice it to say, the Webster Family may be selling some lemonade on a street corner near you this spring for a little fund raising. More later...
The day ended on a high note for JT in a meeting with his new school teacher. YES...we will be attempting to complete 7th grade with the help of a hospital teacher and the Cobb County hospital homebound program so he can join back up with his friends at Simpson MS in 8th grade later this year.
On Friday that week, he ended it with a last visit to the dentist. He will have to pay special attention to his mouth care through out this process because a lot of infections can occur as well as he will have sores to contend with. He also will not be able to wear his retainer (not that he did to begin with) and we're already looking at another round of braces when this is all over because we can see the shifting!
This week we were back down to Scottish Rite on Monday for a bone marrow biopsy. They needed to test the marrow to make sure there were no signs of developing Aplastic Anemia or MDS - two complications from PNH.
On Tuesday, it was another trip to Egleston through the pretty snow for another series of meetings. Sydney came with us this time to have a physical and her lab work (blood draw) completed. She had an opportunity to meet with Brittany as well. JT had another blood draw - not sure why, but didn't ask since every time we go somewhere with him, someone is poking him with a needle. Our Transplant Doctor, Dr. John Horan, came to speak with us about the transplant process and ease many worries Jim and I have. JT is in good hands and we left feeling very comfortable with all of Dr. Horan's decisions. Before we left, we had a family psychology pre-evaluation. They wanted to gauge our stress levels going into transplant. I would love to interject with something funny here - but at the risk of sounding sarcastic, I will only ask you to consider if you would be stressed in this situation? Seriously though, I think the whole team approach will be great for our family and its nice to know that our entire family is being looked after and cared for mentally as well as physically during the transplant!
Today, JT had an eye exam. And tomorrow he is heading back to Scottish Rite for an infusion of Soliris. Without getting into too much detail since I'm "bloggin' like no tomorrow" here, JT has been participating in a pediatric clinical study at St. Jude since November for this drug. It is the only drug on the market approved for adults to help the symptoms of PNH and particularly important for those who do not have the option of a bone marrow transplant. He finished the trial two weeks ago and will continue on the Soliris until transplant. Next week we have one final meeting with Dr. Horan on Thursday along with expected labwork and meeting with the BMT nurse.
I'm not seeing my trusty spell check on this blog site yet, so bare (or is it bear) with me when I send these messages. Those of you who know me well, know I will be fretting if I see a typo! This was two weeks of updates and hopefully future postings won't be so lengthy. Thank you all for following us, thinking of us and most importantly praying for us.
xo Sabrina
Then on Tuesday we were at Egleston most of the day testing his kidney function via a test called a GFR. This was done by injecting nuclear medicine into his blood and doing a series of blood draws via an IV over a 5 hour period. The levels of the radioactive material were measured to make sure the kidneys were filtering properly. He was not glowing that evening when he went to bed, so I am assuming all went well.
He also had an echocardiogram to check his heart. This was done by sonogram so it was a little more fun for him. The doctor gave him two thumbs up on his results...the kid has a good heart.
We met with his Child Life Specialist who will work with JT to make sure he is happy and has everything he needs during his hospital stay. He says he and "Brittany" are tight. She was pretty cute.
A meeting with the Financial Counselor was eye opening and jaw dropping so I'll spare you with the details for now. Suffice it to say, the Webster Family may be selling some lemonade on a street corner near you this spring for a little fund raising. More later...
The day ended on a high note for JT in a meeting with his new school teacher. YES...we will be attempting to complete 7th grade with the help of a hospital teacher and the Cobb County hospital homebound program so he can join back up with his friends at Simpson MS in 8th grade later this year.
On Friday that week, he ended it with a last visit to the dentist. He will have to pay special attention to his mouth care through out this process because a lot of infections can occur as well as he will have sores to contend with. He also will not be able to wear his retainer (not that he did to begin with) and we're already looking at another round of braces when this is all over because we can see the shifting!
This week we were back down to Scottish Rite on Monday for a bone marrow biopsy. They needed to test the marrow to make sure there were no signs of developing Aplastic Anemia or MDS - two complications from PNH.
On Tuesday, it was another trip to Egleston through the pretty snow for another series of meetings. Sydney came with us this time to have a physical and her lab work (blood draw) completed. She had an opportunity to meet with Brittany as well. JT had another blood draw - not sure why, but didn't ask since every time we go somewhere with him, someone is poking him with a needle. Our Transplant Doctor, Dr. John Horan, came to speak with us about the transplant process and ease many worries Jim and I have. JT is in good hands and we left feeling very comfortable with all of Dr. Horan's decisions. Before we left, we had a family psychology pre-evaluation. They wanted to gauge our stress levels going into transplant. I would love to interject with something funny here - but at the risk of sounding sarcastic, I will only ask you to consider if you would be stressed in this situation? Seriously though, I think the whole team approach will be great for our family and its nice to know that our entire family is being looked after and cared for mentally as well as physically during the transplant!
Today, JT had an eye exam. And tomorrow he is heading back to Scottish Rite for an infusion of Soliris. Without getting into too much detail since I'm "bloggin' like no tomorrow" here, JT has been participating in a pediatric clinical study at St. Jude since November for this drug. It is the only drug on the market approved for adults to help the symptoms of PNH and particularly important for those who do not have the option of a bone marrow transplant. He finished the trial two weeks ago and will continue on the Soliris until transplant. Next week we have one final meeting with Dr. Horan on Thursday along with expected labwork and meeting with the BMT nurse.
I'm not seeing my trusty spell check on this blog site yet, so bare (or is it bear) with me when I send these messages. Those of you who know me well, know I will be fretting if I see a typo! This was two weeks of updates and hopefully future postings won't be so lengthy. Thank you all for following us, thinking of us and most importantly praying for us.
xo Sabrina
Tuesday, March 2
Here We Go
Is this really happening? In 14 days JT will be admitted to Childrens Healthcare of Atlanta for a bone marrow transplant. I am creating this blog to keep you up to date on his progress. Give me a few days to set this up and learn my way around this program, I'm new at this.
Subscribe to:
Posts (Atom)
