The BMT & an amazing families story

I started this blog as "Meet some friends of mine" but soon it came to light this story needed a whole page to itself. Please read this amazing mothers strength, unconditional love, fight and total heart-break.

Trisha Knuth

Charlie was brought into this world with a rare and horrible disease called Epidermolysis Bullosa. He was born missing Collagen VII, an important protein that anchors his layers of skin together. You could say his skin is as fragile as a butterfly's wings. The lightest touch, bump, or friction will cause Charlie's skin to blister and fall away. This not only affects his skin but also affects his mouth, throat, intestinal tract, eyeballs, and organs. At birth Charlie was not only in horrible pain, but also abandoned by his biological parents. He was left alone with no one. Our family provided foster care for children with special medical needs. We received a phone call asking us if we were interested in caring for a baby with a rare skin disease. I went to the hospital to meet Charlie. He came home with me 5 days later....we knew he was never leaving. Charlie became legally ours on June 4, 2007.

Due to the fact that Charlie's disease is so rare, it was a real struggle finding doctors in our area that have knowledge of his disease. He is extremely susceptible to infection and has gotten sick many times. Last winter when Charlie turned two, he got a high fever. I knew that there were no doctors in my area that would know what to do. I packed our things and drove to American Family Children's Hospital in Madison and walked in the emergency room with Charlie. By this time, Charlie was very sick. He was admitted into the hospital with a blood infection.I didn't leave Charlie's side because he is so fragile and his care is so intense. He has to be picked up a certain way so that his skin doesn't tear, he can't have any tapes or adhesive touch his skin, and his body is wrapped in special dressings from head‐to‐toe.

After three days in the hospital, I barely had a chance to eat and I was going on about 2 hours of sleep a night. I finally thought I better call the Ronald McDonald House. That night I had a room waiting for me.
My husband came down with my 3 other children and he stayed at the hospital while I spent the night at the Ronald McDonald House with my other kids. Volunteers even made us a lasagna dinner. My 13 year old twin boys, Alex and Hunter, loved the video game room and my 5 year old little girl, Chloe, loved playing in the toy room. I finally got a good night sleep and was able to give Charlie all of my energy during the day at the hospital. My family stayed at the Ronald McDonald house that whole week. It was so important to have them near me. Even though I had to spend most of my time at the hospital with Charlie, just knowing that I could see my family in the evenings took away the "isolation" which caregivers so often feel when they have sick kids. Now Charlie and I stay at the Ronald McDonald House whenever he has appointments to see doctors in Madison. The staff is so friendly and caring. They always remember us and call us by name. That really makes us feel important.

On the 15th December 2010 we were admitted to the BMT floor. Charlie was coming down with an infection and instead of waiting until admission on monday we thought we better take care of it ahead of time.  We are still on schedule to start chemo on Monday. Today Dr. Wagner said that we can't predict the outcome of transplant.  For Every good thing that could happen their is a equal chance that something bad could happen. All I know is that with EB,  if nothing is done, we know that we can predict living in torture and dying in torture. I have no second thoughts. Charlie was getting his dose of chemo. He was a pale shade of grey. Itching all over, and looked miserable. I can't imagine how he is going to be on Saturday.After the chemo dose was done, he got alot better. He can't eat though and he has diarreha so bad. Not an easy thing when dressings have to be changed everytime. Charlie also had a bath tonight. I cut dressings and sanitized this room and equiptment the entire day. Finally we started his bath at 6 pm. He hated it. They don't have a bath chair here so he had to sit directly in the tub. He screamed that it stings, and I am burning him. I had him out of that water in record time. Once he was on his bed we talked about his favorite vacation to disney and then he let me put his dressings on peacefully. We got done about 9 pm. We have to do this everyday until chemo is over....It's so hard on him, and it's hard on me too.

Tomorrow is -6 days until day 0. Next thursday is transplant day. I can't wait to see the cells growning and the transformation that is going to take place. When you see Charlie in Darboy he is going to be a differant little boy. I have total faith in that. Charlie, this is for you. You were never just our "Foster child." You were never just our "sick adopted child." You have never just been my special project to give myself some sort of sense of accomplishment and self worth. From the moment I held you, you were my baby. I felt the same need to protect you as I did with my biological children. I never had a second thought about adopting you inspite of the overwhelming responsiblities you require. Not a second thought.

Charlie received his Stem Cell Treatment on 30th December. I read that Stem Cell Transfusion itself is really quite uneventful and is just like a blood transfusion that takes about 20 minutes. Today was one of the most "eventful" days of my life. I thought that watching the "magic" flow through the tube into Charlie's little line was like watching a miracle. It felt like every drop of marrow that absorbed into Charlie was another inch of skin being healed. I thought it was beautiful. Charlie watched and held onto the line. The Chaplain said a beautiful blessings and each of us put a drop of oil on Charlie's head and told him our special blessing to him. It was very moving and a memory I will cherish forever. Charlie layed peacefully on his bed. The atmosphere was very serene and peaceful. After the transplant itself, Charlie was very quiet and tired throughout the day. He layed on his bed and his Grammy read him books and told him stories. He still has nausea and his throwing up.

 

Now it is a waiting game. Pray the cells take and grow, grow, grow.

He is suffering so badly. His sinuses were basically distroyed by chemo so he is full of mucous. He can't breath because of inflammation, it is running down his throat into his stomoach so he is vomiting. He has a bloody nose. Throwing up globs of blood. I have been sucking mucous out of his g-tube with a syringe trying to keep him from throwing it up. It has helped a little bit. They upped his fetynol again, but he still is whimpering like a puppy in his sleep. He is retaining fluids and his face is all puffed up. His blood pressure is up so he is getting meds for that. Fevers. His wounds look so painful. Fire red and hypersensitive. I guess this is typical. It is horrible to watch helplessly. He doesn't want any light in his room. The shades have to stay shut all day. He doesn't want to be touched. He let me read a few caring bridge messages to him today.  I think that it is just going to get worse for a few more days before things turn around. My heart aches for him. He is being so good. He does what ever you ask him to, even through this torture. I tell him all his people are praying for him. He says, "Mama, I know." I pulled my little bed right up next to his so we can be close. I want to cuddle him so badly. This is so hard.

Charlie is hanging in there like the tough kid he is. Right now he is currently "critically stable." Things are very fragile, but....he is moving in the right direction. His respirator has gone down from 100% oxygen to 50%oxygen which is very good. His O2 saturations are staying in the 90's. His fever has come down to 100.7, and dialysis has taken off a ton of fluid which has really helped him. His chest X-ray has come back as much improved, his heart rate has come down, and his blood pressure looks better. He is covered totally on anti-biotics for any infection that will grow out on cultures. Now all he needs is to heal. This will take time because he doesn't have any white blood cells yet. Once they start coming in from transplant things will look alot better. He is moving forward instead of backwards. Charlie is sedated totally, on pain medication, and resting comfortably. Alot of his dressings are off his non wounded skin and it is wonderful to see exposed skin. I can't wait to hold him. I want to crawl in bed with him. I hold his hand. His brothers and sisters came to see him in the PICU last night. They all were able to hold his hand and tell him they loved him. They are so important to Charlie. My sister flew here to stay at the Ronald Mcdonald house with the kids which is a huge help. Kevin and I are staying right here in the hospital to be next to Charlie.

I am thankful that one year ago today, we packed up and moved to Minnesota to save Charlie's life. I am thankful that we were chosen to "take on" such an undertaking. I am thankful that soon we will be chosen again. Details coming soon.............

Knuth family expanding

I am happy to say that on January 2nd 2012 I will be flying to Washington to meet Seth for the first time. He knows nothing about us yet. How does one introduce themselves to a child which will soon be their son???  "Hi, I'm your new mom?" not sure what I will say...it will come to me I am sure. This will be the longest I have ever been away from Charlie. I mean, I have never been without him for more than a day or 2 at most.  I am getting very nervous to see the pain and agony all over again. I would be lying if I said that it's "no problem at all."
Charlie is excited to meet Seth. He is having a hard time because he has no one to play with. His sister is getting too "old" for him. His teenage brothers are just that "teenage brothers." I hope Charlie and Seth can become best of friends and find comfort in one another. I know that our family has so much community support and I know I can lean on people for support. Today we had our home study for Seth's adoption. In 3 days I leave for Washington....reality setting in.

I have not been able to share much of my experience about Seth until now. Because Seth belongs to the State of Washington there are confidentiality laws to protect him. I can share my story with you now. I flew to meet Seth on Feb. 3rd. As soon as I landed in Seattle I immediately got in a rental car and drove to Olympia where he lived. Seth lived in a group home for children who were considered “medically fragile.” Seth’s social worker, and Staff met me. I was nervous. I was not sure how my emotions would react to meeting Seth for the first time. Seth drove out in his electric wheelchair. Large eyes, blonde hair styled in a Mohawk, skinny skinny legs wrapped in dressings, and little fingers poking through thickly wrapped hands. All my nervousness disappeared. He drove up to me. I told him I was in Washington to meet him. I had a little boy with the same kind of skin and I would like to spend some time with him. He said yes. He showed me his bedroom. In the middle of his bed was his “light up turtle.” This turtle lights the ceiling at night with stars and a moon. You can choose 3 different colors of lights. Seth’s favorite was blue. I sent Seth this turtle from Santa Claus at Christmas time. Charlie has the same one in his room. His favorite light is blue…
The next morning I went back to the group home. And the day after that, and the day after that, and so on for ten days. He waited by the window for me to come. I read him books, we made food that he could never eat, I brought him toys, I told him about Charlie and my family, I showed him pictures, and I fell in love with him. I would tell him about the EB Butterfly and the doctors who were working so hard to “make EB go away.” I wanted to give him hope. Real hope.

The night I had to fly back home Seth got sick. His cheeks were rosy and he had a fever. He was admitted to the hospital. That is where I had to tell him I was getting on a plane because it
was time for me to go home. He shook his head and stared straight ahead. I told him to look at me and he did. I told him that I loved him. I loved him so much. And I was coming back. I promised him over and over that I was coming back. I left him the EB Butterfly necklace around the Stuffed Ladybug I gave him. “Please keep this safe.” “When I come back for you, you can give it back to me.” and then I left as he shook his head no. I got home on a Tuesday night. 

Even though I was to become his mother….his medical privacy was held from me. I ran through the halls at the hospital to the PICU unit. When I arrived Seth was on a Ventilator and attached to continuous hemodialysis. This scene was the same scene one year ago with Charlie. I was actually relieved to find out that Seth did not have a bacterial infection in his blood, he did not have pneumonia. He had a virus called RSV. I was hopeful that in the coming days the docs could slowly wheen him from the ventilator and he would be fine. I stayed with Seth at the hospital. I guarded him from unknowing hands who inadvertently pulled sheets of skin off with their sticky gloves. He seemed to start and improve. I held his hand, sang to him, and put lavender on his sheets. I whispered in his ear that I was going to make him my son. Even though he was not supposed to know yet. I told him I wanted so badly to be his mommy. I told him about his new bedroom, about the workers putting up the walls. I told him about the village of people who came together for him. People who never met him and loved his already. I told him about his daddy, his brothers Alex and Hunter. I told him about his princess sister Chloe. I know he could hear me….I was not supposed to tell him yet, but I didn’t care.

Wednesday night I went back to my room to sleep. He looked peaceful and he looked good. When I came the next morning their was a flurry of activity. The nurse told me that in the night Seth’s blood pressure started to drop. They were giving him medication to keep it up, but they did not think he was going to live. They did a ultrasound of his lungs and stomach. He was full of fluid. Everywhere….there was nothing they could do at this point and his body was shutting down. He had had enough…..I sat with him all day. Groups of nurses who became his family came in to say goodbye all day. Doctors who have cared for him since he was born shed tears. His brother who is 11 even came to say goodbye. I held his hand, wept for him. Finally at the end of the day as the sun began to set his breathing tube was removed. Seth took his final breaths with my head on his. The color drained from his face and he was gone….

I am devastated. I am on a plane back home with a lock of his hair, his armband from the hospital, his ladybug, and his EB butterfly. I am so sad. So so sad….He was so close, so close to having what he deserved to have and it was ripped away from him. I will never understand this. I take comfort knowing that I told him how much I loved him. How much I wanted to be his mommy. I was glad that I could be there for him. As a mom., not a paid employee. I wonder what happens to him now. Where do his remains go when he belongs to the state? What about his things? His favorite books? Will there be a funeral for him? Was he ever baptized? This is so unfair.

There are volunteers at our house right now. Building Seth’s bedroom. These men who work so hard. For nothing. All for a little boy who they never even met. A little boy who has died. His bedroom is still going to be built. We are not changing a thing. He will still have his medical room, bathtub, and bedroom. He is not the first little boy to be born this way and left. He will not be the last. We will be here waiting. We will be ready this time. I will never forget the image of this sweet, gentle, loving little boy who laid his head on my shoulder while I itched his wounded back.
I love you Seth, Mommy…….


http://www.youtube.com/watch?v=cRUSz97mzpA&feature=share


http://www.caringbridge.org/visit/charletonknuth

Update on Charlie

TOKYO, JAPAN--Little Charlie Knuth is going global

http://www.nbc26.com/news/149746685.html

Yeah!!!! Charlie lost his first tooth. Does that mean he's not my baby boy anymore????

Please keep Charlie and his family in your thoughts as Charlie is sick. He is in hospital with a fever....

http://www.caringbridge.org/visit/charletonknuth/journal

http://www.caringbridge.org/visit/charletonknuth

DARBOY, Wisc. (WFRV) Charlie Knuth's family is left waiting with more questions than answers.

The six-year-old from Darboy, who's been battling a rare skin disease, remains hospitalized at the University of Minnesota. It is still unclear what has made him so sick.

Results from a bone marrow biopsy performed last week initially showed Charlie was unable to produce red or white blood cells or platelets. However, yesterday the results showed there is a small chance he is able to produce them.

The family is left wondering whether Charlie's marrow will recover or whether he will need a re-transplant.

Another bone marrow biopsy is scheduled for Friday.

According to his mother, Trisha, "Charlie is very sick. He doesn't look the same, he doesn't talk the same, he doesn't act the same, and it is the most painful thing I have ever dealt with. To think about it too deeply is to torture myself."

If you would like to send a card to Charlie, here is his address at the hospital:

University of Minnesota

Amplatz Children's Hospital

BMT Unit

Attn: Charlie Knuth

2450 Riverside Ave.

Minneapolis, MN 55454

http://www.postcrescent.com/article/20120705/APC0101/307050201?fb_ref=artsharebottom&fb_source=timeline 

August's Auction Doll 

http://www.nbc26.com/multimedia/videos/?bctid=1735644820001

Charlie is still very sick, please keep the whole family in your thoughts.

Posted on Trisha's journal:

The Plan is in motion.  Charlie has PTLD.  Post Transplant Lymphproliferative Disease.  A result of either a virus and or the chemotherapy drug CSA that is used as a immunosuppressent to prevent graft vs host disease.  In simple terms, B cells have taken over.  We need to kill them off with the medication rituximab. http://reference.medscape.com/drug/rituxan-rituximab-342243  This medication will also relieve Charlie of the tremendous PAIN he is in.  But guess what?  We can not start until Medicaid says yes.  I want that to start now.  Not tomorrow.  Not tonight.  Charlie is suffering tremendous stomach pain and is requiring constant fentynal drips and hourly boluses.  I have given the doctors the direct number of Jason Helgerson (director of WI Medicaid) so this can get approved and we can begin.  Charlie has been in pain and waiting for 3 1/2 weeks and he does not need to wait one minute longer.  After 3 days of this medication they will switch to ATG an immunosuppressent and then Charlie will be transplanted again with donor stem cells.  Charlie's immune system has been wiped out and he needs a second transplant.  Here we go again....

Charlie is resting comfortably.  In fact, I haven't seen him this comfortable since we got here.  Yesterday, they started Rituximab.  This medication is going to help his PTLD, and I can tell his stomach feels better already.  I feel bad that yesterday I pressured the doctors to begin.  Even though I have grown so impatient over the last month, I know that Dr. Tolar has been diligently researching the best possible way to help Charlie, and for that I am very thankful.  I am also very thankful that Charlie has a doctor who is so incredibly thorough.  Not missing a single detail.  Thank you Dr. Tolar.  Much respect to you and your team....

At this very moment Charlie is being infused with ATG.  An immunosuppressent that will wipe out the rest of his immune system.  The next few weeks are going to be very intensive.  Avoiding infection is going to be number one priority.  Especially viruses which I believe are far more dangerous than bacterial infections.  We are monitoring Charlie's blood pressure, breathing, and his kidneys very closely.  He is pretty puffy right now from all of the fluids he is getting.  Charlie will be getting ATG for 3 more days and then Saturday, Charlie will be infused with the donor cells.  The next few weeks are going to be very challenging while we wait for new donor cells to grow and multiply.  We are once again starting over.  That means we will be here for a long time.  If Charlie can pull this off again he will be isolated again.  Charlie knows all of this.  I told him about his new super cells he is getting and that it is going to be very hard.  Can you believe that he is happier.  I should have known better.  Charlie is so smart.  He just needed to know the truth instead of wondering why he was in so much pain, and wondering if he was ever going to feel better.  Now he knows that there is a plan and he has something to fight for once again.  I have gotten messages from people advising me to just support Charlie, sit back and love him, and support him if he wants to die.  I don't want to ever see those again.  I know what a child "looks" like who has no fight left in them.  Remember, I watched a child with EB die just a few months ago.  A child who was going to be my son.  Charlie is not that child.  He is still yelling at nurses, bossing me around, and working very hard. (that's why he is holding 20 bucks on his picture.)  Yesterday, he stood up for the first time since we got here.  It hurt his knees so badly, but he did it again, and then again today.  He wants to stay strong.  Charlie wants to fight.  He loves life.  He has a good life, a good family, and a wonderful community of supporters.  He is happy, and has had wonderful childhood experiences that many healthy kids only wish they had.  He has every reason in this world to fight for life.  His life is beautiful.

Charlie is talking about water in his sleep.  He has had a "thirst" today like I have never seen.  Since Charlie's stomach is not moving anything through it...his g-tube is hooked up to a suction tube that sucks everything that goes in it out through a tube and into a canister that holds about 1 liter.  After the canister fills up, we empty it.  Last night "the thirst" began...Charlie has been sucking down bottles of water now for almost 20 hours.  This new "thirst" can not be satisfied.  He has drank well over 35 bottles of 16oz water today.  Each drink going in and being cycled out through a tube into the canister.  I have not sat today.  I have stood by his bed the entire day filling him with water, sucking water out, and emptying the canister.  I have emptied that canister about 30 times.  Everything that goes in must be recorded and everything that comes out as well.  This whole process is more complicated and intensive than anyone who hasn't experienced could ever imagine.  Yesterday Charlie stopped peeing.  He started retaining fluid and puffing right out of his bandages.  Then they put him on a heavy duty lasiks drip which dried him out so much that he can't stop drinking.  But....his kidneys are still working, his lungs sound wonderful, he has no fever, and he is FINALLY sleeping.  (so I just gobbled a half frozen, freezer burned burrito).

Tomorrow at noon he gets his new cells.  More than anything in this world I am begging, pleading, for those cells to multiply and grow as fast as possible.  Charlie has had enough of this.  He wants his own bed, his "girl", his big brothers, and to feel good again.  He looks at me and tells me he doesn't want to die.  I tell him, "Charlie!  Look at Mama's face.  Does this face look like the face of a Mama who is gonna lose her little boy?"  and he says, "no."  Then he asks me for more water....

Keep this amazing family in your heart 

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