Today is our 8 month wedding anniversary! I thought we would start to plan our 1 year anniversary trip around now....but not so much. We are planning for a kidney transplant! Of course we will take that over any vacation it is just crazy how things change so fast.
What do I have to say about my husband? My husband is an amazing man. I can't imagine life without him. We just work well together. Every marriage has hard times, our's just came on a little quicker then we could expect. Chris has made this transition in our life smooth. I have not had to worry about a thing. My main focus is Mark. At times I feel lost in space, I also carry a lot of guilt. I want to be working to better our future. I know this is just a bump and things will be "normal" again. I want to be superwomen and I'm not! So I thank him...he is superman! I just wonder where will we be next year at this time?
Thursday, March 31, 2011
Wednesday, March 30, 2011
We Have Been Busy
I feel as if I have been neglecting my blog...I have so much to write. Last weekends Celebration for Mark was a big hit! We had a huge turnout..more then we could ever imagine. Of course Chris and I are very grateful for all that came out to celebrate. Mark was so excited for his party all day. He was up at 6am asking when it would be time. Finally the night came and he was ready to party. It was so busy I was panicked when I couldn't see him. I believe it was my Dad's idea to tie balloons to the back of him, I could spot him all night long! Mark was busy playing and dancing..I was was trying to talk to as many people as possible, but I think I may have talked to half of who was there. I am awaiting pictures to post but I do have a few and a video of Mark dancing....
More pictures to come as soon as I get my hands on them. If you were there and would like to email me them, I would greatly appreciate it! You can sent them to marksourboy@yahoo.com ~Thank You |
Monday was a long day for us at CHB. Mark treatment was not so successful. After 40 minutes of the non stop interruptions the nurses decided to pull him off of treatment and lock his cath with TPA. That is to help break down and clots in his line. TPA has to sit in his line for an hour...so off to xray we went to check line placement. We arrived home Monday night around 8pm with little to no answer about Mark's catheter. One of the nurses had mentioned the xray looked good, there is no placement change. Yay...that is good news...but what is the issue?
It's now Wednesday and we have had a busy day! First Mark was able to join his classmates for music this morning via skype! He was in his glory, we hope that this will be a weekly event from now on!
After Mark was done with music we headed out the door. We had to make a few stops before headed to Boston. When we arrived to CHB on of the nurses had let me know what the doctor had decided about the catheter. He has ordered a study to be done on Friday afternoon. This study will entail dye going into Mark's catheter to try to find out where the possible problem area is. He will then go to dialysis after the study. I am hoping by the time we leave on Friday we will have answers to all of this. Let me tell you it has been a long day today...Mark needs to stay so still in order for his catheter to work...This is almost impossible!! The question is will there be a catheter #3??
Friday, March 25, 2011
Lowell Sun
Family of Westford boy hopes to find donor soon
By Rita Savard, rsavard@lowellsun.com
Updated: 03/25/2011 06:35:51 AM EDT
WESTFORD -- Mark Nugent loves life, even though the 11-year-old has spent much of his in hospitals.
Born with only one functioning kidney from a rare genetic disorder known as Wolf-Hirschhorn Syndrome, Mark's future now depends on finding a donor.
Tomorrow, his parents Chris and Emily Kane, will hold a fundraiser to support Mark on his journey for a transplant.
"There's no limitations to what he can do when he's feeling good," said mom, Emily. "But for the past few months, things have been much harder for him."
Despite his illness, Mark has lived a happy and active life, just like any other kid. He plays soccer and baseball on the Boxboro Miracle League, and looks forward to seeing his friends at school.
But in December, his kidney shut down and for the past three months he's been on a dialysis regimen -- three- to four-hour sessions each week.
Emily gives daily updates on her blog, "Mark's Our Boy."
Yesterday she wrote, "I just want him to feel better...When we arrived at treatment he was ready to go. He had a dance party with everyone in the unit. Music blasting and Mark wiggling in his bed busting a move. Things changed real quick. He spiked a fever during treatment and went down hill."
The family takes each day as it comes, and hope they'll find a donor match soon. The Internet has helped. Once Mark's story spread on Facebook, Emily received hundreds of messages wishing her son well.
Some people stepped forward and
Emily has already signed him up for another season of his beloved baseball. Last year, the team received a special trip to Fenway, where they watched the Red Sox practice on the field before the game.
"He loved every minute of it," she said. "He has so much enthusiasm for life. He's the type of kid that leaves an impression on everyone he meets."
Since Mark's treatments began in December, Emily has had to stay home full-time to care for him. Tomorrow's benefit will help the family with expenses, but also help their donor when they're lucky enough to find one, she said.
"The person stepping forward to do this for our family will end up missing two to three weeks of work," she said. "We're hoping to cover some of their loss."
If the family doesn't find a match this time, Emily said they'll keep trying until they do.
"All he talks about is going back to school," she said. "We want to see Mark be Mark again, full of energy, laughing and smiling."
Tomorrow's benefit for Mark Nugent is from 7 p.m. to midnight at the Franco American Club in Westford. Tickets are $10 in advance and $15 at the door. Admission includes appetizers, DJ, cash bar and the opportunity to enter a variety of raffles.
For more information or to make a donation, emailMarksOurBoy@yahoo.com.
***Just as a little side note....I wanted to let everyone know Chris and I are not hosting the event for Mark. The Host's of the event is an amazing group of friends that we have!
Thursday, March 24, 2011
I Just Want Him To Feel Better
As you can see yesterday was a hard day. Mark woke up with a cold, but seem to be okay. When we arrived at treatment he was ready to go. He had a dance party with everyone in the unit. Music blasting and Mark wiggling in his bed busting a move. Things changed real quick. He spiked a fever during treatment and went down hill. Once you spike a fever that causes a major set back for the day. He had to have a culture done and have an IV treatment of antibiotics. They have to culture to make sure there is no infection in the line. The nurses were sure that it was caused from the cold...but better to be safe and run a culture. It is obviously very dangerous if there is an infection in a central line. The original plan for yesterday was to arrive early to treatment so we could see the eye doctor after dialysis. He needs to see the eye doctor as part of the many appointments to be cleared for transplant. We unfortunately had to cancel this appointment. He had to receive the IV medication after he was done with his dialysis treatment. The antibiotics take over an hour to be infused into him. We arrived in Boston at about noon time yesterday..and got home around 8. What a day! Mark was very disappointed to not make it to school today, but he needs to get better. He rarely goes to school as it is...so it's tough when he has to miss a day.
Wednesday, March 23, 2011
Three Months
Three Months have gone by so quick...This is also an amazing week for us! We had the lab draw for all the potential donors and we will be having the celebration for Mark on Saturday!!
Here is a little info on that for those who don't know about it :
Here is a little info on that for those who don't know about it :
Here are some averages:
- We have had about 4o trips to Children's
- Over 150+ hours in the Dialysis unit
- Driven approximately 3000 miles
- Time wise about a little over 4 days straight in the car
- Mark's daily med's contains about 12 different doses a day = over 1000 doses in the last 3 months
- 1 ambulance ride
- 1 surgery/hospital stay
- Well over $1000.00 in gas
- Amazing help for so many people we know!
- Finally...51 tubes of blood taken to find a potential donor for Mark. (8 possible donors)
Saturday, March 19, 2011
Friday, March 18, 2011
Feeling Ragged
Mark is running me ragged. Last week he was demoted back to his car seat from a booster seat. He has not been in his car seat for about 8 months or so. He decided it was cool to unbuckle his booster seat while we were driving to Boston. The first time I pulled over and buckled him back up...did the lecture on how important it is to be safe in the car...blah blah blah. While over that week after the 4th time it was getting old! Before he knew it the car seat was back! I thought for sure he would not be able to unbuckle the car seat. Well guess what...I was wrong! Today he managed to weasel his way out of the buckle. I pulled over...buckled him back up...tighten the straps and had the safety talk again!!! God help me if he doesn't stop this.
Mark is having a great day. He is full of energy and did not want to come to Boston today. I can't blame him...Have you been outside? It is AMAZING out there. His treatment has gone well today. He is such a wiggle worm, so his alarm is constantly going off. The machine will sound for a number of reasons..typically it is Mark's positioning causing a kink in the line, or there is some clotting somewhere in the line. We have been busy entertaining him with toys, movies and singing. Each treatment just feels like it is taking longer and longer!
Yesterday Evy got something pretty cool in the mail. She brought them over to show Mark and I. Mark has his own bracelets now! He had picked the colors out a couple weeks ago. He was excited to see them. They were ordered for the Celebration for Mark next weekend.
Mark is having a great day. He is full of energy and did not want to come to Boston today. I can't blame him...Have you been outside? It is AMAZING out there. His treatment has gone well today. He is such a wiggle worm, so his alarm is constantly going off. The machine will sound for a number of reasons..typically it is Mark's positioning causing a kink in the line, or there is some clotting somewhere in the line. We have been busy entertaining him with toys, movies and singing. Each treatment just feels like it is taking longer and longer!
Yesterday Evy got something pretty cool in the mail. She brought them over to show Mark and I. Mark has his own bracelets now! He had picked the colors out a couple weeks ago. He was excited to see them. They were ordered for the Celebration for Mark next weekend.
Wednesday, March 16, 2011
Baby "Fake"
We arrived in Boston with Mark's baby in hand. She was going in for catheter placement. Mark eagerly awaited for his baby to come out of surgery. Mark says she is holding up well from her surgery.
Meet Baby "Fake"...how fitting! She is named after my friends little girl Faith...but Mark can't say Faith so he says fake..haha! |
Mark on the other hand is beeping up a storm. No matter how he positions himself he sets the alarms off. We have had one great treatment since the catheter replacement. Monday was not so great...today he is not feeling sick but he can not move at all!! How do you get a small child to lay still for 3 hours....Thank god for Johanna the Child Life Specialist and Lauren will be here to do art soon. I have been busy this afternoon working with the transplant secretary. We are busy compiling the rest of the information we need from the potential donors. We will be moving forward soon with the tissue typing in hopes to find a match!
I am sorry to report Baby Fake was rushed back to surgery for a clogged catheter. Mark is busy working an art project while he waits for her!
Tuesday, March 15, 2011
Kidney Trouble
Not sure what's going with Mark today...He had a horrible night last night, with little to no sleep. Of course he wanted to sleep all morning before we went to Boston..I did too! When we headed out to Boston I tried to get Mark to eat and he wouldn't. The Doctor's seem to think he may be on the verge of coming down with something. She had said that there is a flu going around in children right now....Chris had called me this morning and said the same thing :0(
I hope that's not what's coming our way.
Mark's treatment started off well today. He was so tired he pretty much just wanted to lay there. He had little interest in anything today. At one point the alarms were going off on his machine frequently. We would adjust his positing to help the catheter work better...but it wasn't helping. I was getting nervous thinking there may be a new issue with the new catheter already. Turns out there was a problem with the "kidney"....this is the filter that is Mark's kidney. It had clotted out. This happened with approximately 50 minutes left. It made a bit of a mess...they had to stop treatment, replace the filter and all of the tubing and start over. We had to start treatment again for the remaining 50 minutes. Mark was not happy about this. He was hopeful he was being unhooked. After we started up again he seemed to really start to feel poor again. This made the last few minutes go by very slow. He wanted me by his side all afternoon just holding his hand...there was no time to blog. This was fine with me, he always wants to be so independent. It's nice to be wanted!
As you can see Mark was a bit under the weather today....I hope he feels more himself tomorrow.
I hope that's not what's coming our way.
Mark's treatment started off well today. He was so tired he pretty much just wanted to lay there. He had little interest in anything today. At one point the alarms were going off on his machine frequently. We would adjust his positing to help the catheter work better...but it wasn't helping. I was getting nervous thinking there may be a new issue with the new catheter already. Turns out there was a problem with the "kidney"....this is the filter that is Mark's kidney. It had clotted out. This happened with approximately 50 minutes left. It made a bit of a mess...they had to stop treatment, replace the filter and all of the tubing and start over. We had to start treatment again for the remaining 50 minutes. Mark was not happy about this. He was hopeful he was being unhooked. After we started up again he seemed to really start to feel poor again. This made the last few minutes go by very slow. He wanted me by his side all afternoon just holding his hand...there was no time to blog. This was fine with me, he always wants to be so independent. It's nice to be wanted!
"Kidney" |
As you can see Mark was a bit under the weather today....I hope he feels more himself tomorrow.
Friday, March 11, 2011
Turning My Back
Today was the only time I had to turn my back on Mark through all of this....
When we arrived to Boston we had made it just in time! The rain was making it very hard to get out of bed this morning. I actually don't look like I got out of bed yet...I'm in sweatpants and a sweatshirt...God help me not to fall into this slump. I am going out to hang out with my mother in law tonight and her friends. I think when I get home the sweats need to come off and a little make-up needs to go on! If I do that it will be less then one week since the last time I put make-up on. Yay me!!!
Mark's dressing over his catheter was looking a little creepy. Diane had decided to change it before we started. Typically it would be changed on a weekly basis, but with mark having surgery on Monday it needs to be changed sooner. I will let your imagination go with what my version of "creepy" is. When she got the dressing off Mark kept saying it hurt. Once the gauze was removed there was a dime size open wound. This was from his old catheter....and that is when I couldn't look....I had to turn my back. I can handle a lot but this was bad. I asked the nurse why it was like that and should it be stitched? She was on the fence, so a call was put into to the surgeon. He called back right away. He said it was in a place that was hard to stitch. He said it will be fine as long as it is covered and cleaned it should heal just fine. Once that was resolved Mark treatment was off to a start. He was happy to play with the dialysis baby again! Johanna said we can bring in our own doll and they will install a catheter. Looks like we have a trip to the toy store planned tomorrow.
When we arrived to Boston we had made it just in time! The rain was making it very hard to get out of bed this morning. I actually don't look like I got out of bed yet...I'm in sweatpants and a sweatshirt...God help me not to fall into this slump. I am going out to hang out with my mother in law tonight and her friends. I think when I get home the sweats need to come off and a little make-up needs to go on! If I do that it will be less then one week since the last time I put make-up on. Yay me!!!
Mark's dressing over his catheter was looking a little creepy. Diane had decided to change it before we started. Typically it would be changed on a weekly basis, but with mark having surgery on Monday it needs to be changed sooner. I will let your imagination go with what my version of "creepy" is. When she got the dressing off Mark kept saying it hurt. Once the gauze was removed there was a dime size open wound. This was from his old catheter....and that is when I couldn't look....I had to turn my back. I can handle a lot but this was bad. I asked the nurse why it was like that and should it be stitched? She was on the fence, so a call was put into to the surgeon. He called back right away. He said it was in a place that was hard to stitch. He said it will be fine as long as it is covered and cleaned it should heal just fine. Once that was resolved Mark treatment was off to a start. He was happy to play with the dialysis baby again! Johanna said we can bring in our own doll and they will install a catheter. Looks like we have a trip to the toy store planned tomorrow.
Thursday, March 10, 2011
Extra Extra Read All About It...
This morning I was excited to get up and see the paper! The story about Mark hit the stands today. You can find this article in the Littleton Independent and Westford Eagle! We even landed a front page spot in the Independent. I think Mark was just as excited to see it as I was. I have to thank Nathan for coming out to the house to meet us and writing such a great article.
It is just fitting that day the article comes out, we are ready to move forward with our first round of potential donors. A big part of the story is the search for a living donors. Although I can't give much detail on this process ahead for our family and the potential donors. I feel out of respect for both parties I will blog minimally about this process. Of course I will keep everyone informed on the steps...but will keep donors information private. This is just such an amazing gift....I often wonder what made these potential donors step forward. The donors come from all walks of life...some I know others I don't. All I know is that we are very grateful for there willingness to be there for us in this time of need.
It is just fitting that day the article comes out, we are ready to move forward with our first round of potential donors. A big part of the story is the search for a living donors. Although I can't give much detail on this process ahead for our family and the potential donors. I feel out of respect for both parties I will blog minimally about this process. Of course I will keep everyone informed on the steps...but will keep donors information private. This is just such an amazing gift....I often wonder what made these potential donors step forward. The donors come from all walks of life...some I know others I don't. All I know is that we are very grateful for there willingness to be there for us in this time of need.
Wednesday, March 9, 2011
New Look
I needed to change something...so my blog was the victim. I can't justify shopping for new clothes, spending money on things I don't really need. Instead I spent some serious time over the last couple days vamping up "Mark's Our Boy". I hope you like it! It is more fitting to me and my style...The birth of my blog was late one night well I was in total devastation. Now I have a new attitude and a whole new look! With all my changes I have made it possible for anyone to comment..you don't have to be a follower. There is also no harm in being a follower (((Grin)))! I also have the chance to take pictures all the time now! My phone was on it's last leg, with my new phone the camera actually works!!! It is to hard to carry my "big" camera with me all the time. We look like were moving in as it is every time we go to Boston. Mark always has his chair (I try not to refer to it as a stroller anymore because he is almost 12)...We usually have a bag or two with us...filled with crap!! This is what we travel with...
All of these items are a must...Computer, ipad, movies, extra clothing, medication, medication list, wallet, snacks, hand sanitizer, chargers and more! Usually a DVD player and lunch box as well!
When we got to Boston today Mark was ready to go....I think his dialysis buddies missed him on Monday. They said it was really quiet in here on Monday...I am sure they all actually enjoyed the silence.
Mark has been very busy since he arrived today...He had a visit from the clowns, and could not wait to play with the new medical kit Johanna got for the unit. He is currently preforming dialysis on the doll. She is equipped with her own dialysis catheter.
He seems to be having a great treatment so far...his machine has not beeped once!!! I feel like it would have normally gone off a 100 times by now! They are able to increase his flow rate today, but he will receive treatment for the same amount of time...3 hours. They are challenging him a little bit today trying to get some weight off of him. If he is able to have so successful treatments and his numbers are good then his treatment time may decrease.
Tuesday, March 8, 2011
Catheter # 2
Early start into Boston for us yesterday. Mark had his dialysis first thing this morning and then it was off to the operating room for a new catheter. The replacement all went well. It was about a 2 hour procedure. They were not sure what they were going to do. There was the possibility that he would just try to adjust his catheter, replace it, or have to move completely to the other side of his chest. He ended up replacing the catheter on the same side it was originally on, it was just moved to come out a different way. They also used a different style catheter. He has a few new stitches on his neck and chest again. The pain factor is way less this time. Mark had one dose of Tylenol last night. This morning he mentioned he was in a little pain when I was adjusting him in bed. All the doctor's came in said everything looks well. We will be heading home soon.
The BEST part of last night was when we finally made it upstairs! We were on 10S the room was right next door to our last stay.....but even better was that Mark's best friend from school was on the same floor!!! He has surgery today...so we are thinking about him lots! Once we got settled last night we headed down to Brett's room. Mark wasn't being monitored because he was doing so great, so that made it okay for us to travel down the hall. Mark and Brett hung out and watched a movie...they were so happy to be together, you could see it on their faces.
We are waiting on dis-charge papers so we can head out....and head back in tomorrow! Time to pack up...yes pack..I am amazed at how much crap we have for 1 night!
Mark and Auntie Camille playing before surgery...with their shoulder tattoo's. |
Waiting.... |
Post-Op....not very happy...trying to pretend like he doesn't like Curious George |
Best Buds...First Sleepover at CHB! |
We are waiting on dis-charge papers so we can head out....and head back in tomorrow! Time to pack up...yes pack..I am amazed at how much crap we have for 1 night!
Friday, March 4, 2011
Things Change Quick
Yesterday I was busy cleaning and catching up with things around the house. I was also listening to the mix 104.1 cares for kids radiothon.
Here is the link if you want to check it out:
http://mix1041.radio.com/radiothon/
I think I have listened to this for the last 8 years they have been doing it. I have also donated in years pass. The radiothon benefits Boston Children's Hospital. You will laugh and cry when you listen to this.
A couple weeks ago Mark was asked while he was at dialysis what he dreams of. They were going to be creating a dream wall for radiothon. Mark said that he dreams of grill cheese. So his grill cheese dream was made for the dream wall. Yesterday when I was listening to the radio they started to talk about the dream wall. They mentioned Mark's grill cheese dream on the radio!!
Here is the link if you want to check it out:
http://mix1041.radio.com/radiothon/
I think I have listened to this for the last 8 years they have been doing it. I have also donated in years pass. The radiothon benefits Boston Children's Hospital. You will laugh and cry when you listen to this.
A couple weeks ago Mark was asked while he was at dialysis what he dreams of. They were going to be creating a dream wall for radiothon. Mark said that he dreams of grill cheese. So his grill cheese dream was made for the dream wall. Yesterday when I was listening to the radio they started to talk about the dream wall. They mentioned Mark's grill cheese dream on the radio!!
Wednesday, March 2, 2011
Infectious Diseases
Today we had a chance to meet with Infectious diseases. We are 3 appointments down with 6 to go for the transplant checklist. Infectious diseases looked over his immunizations records to make sure he was up to date. He is up to date, but will receive a few shots as a precautionary for his transplant. The point of this is to have your body protected as much as possible for after transplant. Mark will be put on a series of immunosuppressants drugs (yes that is how you spell it....and yes it is an excessive amount letters.)
These drugs are taken to prevent organ rejection after transplant. These drugs can increase Mark's risk of getting unusual and severe infections. Mark's immune system will be running at a much lower level in order to expect his new kidneys. We will have to be cautious in some ways. The normal things that you would expect. Hand washing, avoid sick people,avoid some foods and other random things that does not affect Mark's life. We will have to be on the cautious side for a bit.
Mark had a good treatment over all. He had a little bout of sickness in the beginning. After that passed he was on to his crafts.
These drugs are taken to prevent organ rejection after transplant. These drugs can increase Mark's risk of getting unusual and severe infections. Mark's immune system will be running at a much lower level in order to expect his new kidneys. We will have to be cautious in some ways. The normal things that you would expect. Hand washing, avoid sick people,avoid some foods and other random things that does not affect Mark's life. We will have to be on the cautious side for a bit.
Mark had a good treatment over all. He had a little bout of sickness in the beginning. After that passed he was on to his crafts.
Tuesday, March 1, 2011
NSTAR's Walk for Children's Hospital
Exciting news today! A Friend of ours is walking the NSTAR walk to raise money for Children's. Her team will be walking in honor of Mark. Please help her reach her goal!
https://howtohelp.childrenshospital.org/walk/pfp/?ID=DE0061
Thank you Erica...for helping Mark and many other children!
https://howtohelp.childrenshospital.org/walk/pfp/?ID=DE0061
Why I Walk!
I'm walking in NSTAR's Walk for Children's Hospital because I want to help sick kids get better. When the sickest kids need the best care in the world they come to Children's Hospital Boston. It's an amazing place where the doctors and nurses are compassionate, creative and committed to saving kid's lives. Children's has been nationally ranked as one of the best pediatric hospitals for almost two decades. They care for more than 500,000 patients every year - many with health problems no other hospital in the world can handle. Your donation gives sick kids a chance to get better!
I walk to make a difference for the kids who are treated at Children's Hospital Boston. My team is walking in honor of Mark. Eleven year old Mark has touched so many people with his amazing sense of humor and curiosity for life. Fighting End Stage Renal Disease, second to his diagnosis at the age of nine months of Wolf-Hirschhorn Syndrome, Mark and his family have made the trip back and forth from Westford to CHB several times a week, for dialysis treatment. Mark and his family have entrusted the doctors and nurses of CHB since his diagnosis.
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