This week's goal is to get William prepared for transplant next week.
Wednesday, New Year's Eve
11:00am - Echocardiogram
12:00pm - CT scan
Thursday, New Years Day
Friday
8:00am - meet with BMT (bone marrow transplant) doctor and the general surgeon. Immediately following William will have surgery for his g-tube and central line placement. After surgery, he will be admitted into the hospital. He will need a few days to recover from surgery before transplant medications begin, which should begin by the beginning of next week.
We are hoping to be in the Ronald McDonald House by Friday.
We have amazing family and friend support. We could not do this without you. It is going to be a very difficult process for our family and knowing that we have been blessed with amazing people in our lives makes an impossible situation less daunting. THANK YOU.
Love, The Branches
Tuesday, December 30, 2014
Sunday, December 28, 2014
Transplant Decision
Dear Family and Friends,
We are all in. We leave for Pittsburgh on Tuesday morning, to begin the process of the cord blood transplant. The procedure is a cross between a bone marrow transplant and a blood transfusion. William will undergo chemotherapy for two weeks to clean out his old bone marrow and will then receive an infusion of cord blood from a specifically matched donor to reset his system with the complete protein set. The whole process will take three months of hospitalization for William in Pittsburgh. While William is hospitalized, Robert and I will have an apartment at the Ronald McDonald House adjacent to the hospital. I will stay in Pittsburgh for the whole duration of the procedure and Robert has worked with his employer to relocate his desk to Salt Lake City. He will commute back and forth from Pittsburgh to Salt Lake City for the work week. It's going to be a tough go at it, but we will make it work!
I will keep you all posted as much as time allows. Thank you from the bottom of our hearts for your prayers and support. We could not do this without our family and friends.
Love,
The Branches
We are all in. We leave for Pittsburgh on Tuesday morning, to begin the process of the cord blood transplant. The procedure is a cross between a bone marrow transplant and a blood transfusion. William will undergo chemotherapy for two weeks to clean out his old bone marrow and will then receive an infusion of cord blood from a specifically matched donor to reset his system with the complete protein set. The whole process will take three months of hospitalization for William in Pittsburgh. While William is hospitalized, Robert and I will have an apartment at the Ronald McDonald House adjacent to the hospital. I will stay in Pittsburgh for the whole duration of the procedure and Robert has worked with his employer to relocate his desk to Salt Lake City. He will commute back and forth from Pittsburgh to Salt Lake City for the work week. It's going to be a tough go at it, but we will make it work!
I will keep you all posted as much as time allows. Thank you from the bottom of our hearts for your prayers and support. We could not do this without our family and friends.
Love,
The Branches
Wednesday, December 24, 2014
testing results are in
William's vision, hearing and upper GI tract are completely normal. His disease is progressing slowly, which is what makes him a transplant candidate. We have not made a decision, yet, but will know by tomorrow (Xmas). My transplant info blog entry explains each decision.
Merry CHRISTmas,
The Branches
Merry CHRISTmas,
The Branches
Saturday, December 20, 2014
Krabbe Disease facts
The information online is 30 years outdated.
It is genetic. Neither Robert nor I have any family history.
1 out of 125 people carry the mutated gene.
Both parents must have the gene in order for their offspring to be an affected carrier. There is a 25% chance their offspring will be an affected carrier (like William). 50% chance their offspring will be a non affected carrier (like Robert and myself). 25% chance for their offspring to be a non carrier.
There are over 100 different types of mutations for the same gene.
There is an adult onset Krabbe Disease.
There are two states that I know of that now test for Krabbe Disease as part of their newborn screening: New York and Pennsylvania. Remember, it can be cured if treated before symptoms begin.
Krabbe disease can only be confirmed through a blood test after birth, not through amniotic fluid before birth.
1 out of 100,000 babies world wide are diagnosed with Krabbe each year.
I am 100% confident I will never win the lottery.
transplant info
After a long tiring week, we have made it to Utah. We were given a lot of information from Dr. Escolar, the neurologist, and Dr. Paul, who does bone marrow transplants.
William is a candidate for a transplant. However, his motor skills, regardless, will continue to decline. Basically, he will look like a quadriplegic, but will be able to feel, although with management of medications he will not be in pain. Motor skills also involve the mouth and ability to talk.
William's disease is progressing slowly. Therefore, he will continue to be able to see, hear and have some neck movement and very little arm and leg movement until his 1st birthday. At that time, they say, he will start to decline. He may live until he is 4 or 5, but will spend those last years in a vegetative state.
With a transplant, because his symptoms began when he was almost 3 months ago, he will still lose all motor skills. From what I understand, Krabbe Disease affects the peripheral nerves and that damage cannot be stopped nor fixed. Actually, any damage at this point cannot be reversed regardless of transplant. What the transplant will preserve is his sight, hearing and his receptive language skills that are still intact at the time of transplant, which if we committed to doing it today, would not be for another 4 weeks. In other words, if he would lose all neck control in a month, he will not get that back. He will communicate through an assistive device such as a computer. Life expectancy without transplant, Dr. Escolar said, would be 4 or 5 years, and the last 3 or so years he be in a vegetative state. It doesn't seem real to be writing this; they don't even make movies about this because it's so sad.
Life expectancy with transplant is about 15 years. There is a 10% fatality rate due to the transplant.
The risk of infection during and after the transplant is high. He will be on chemotherapy to remove all of his bone marrow, he will be in isolation. If we commit, we will fly back to Pittsburgh on Saturday, and stay there for 3 to 5 consecutive months. The transplant is not 100% successful. There is a chance nothing may change and we would had spent a lot of precious time with our Little in the hospital...this is a decision I wouldn't wish on my worst enemy.
We will make a decision by next week. We are beyond exhausted, currently waiting for our luggage at baggage claim at midnight and are in no way shape or form capable of making big decisions. We ask for your prayer to help us make the best decision for our family. There isn't one thing in this world we wouldn't do for our son. He is a true blessing and we are honored to be his mommy and daddy.
Again, apologizes for the typos, as it is late and I'm typing on my smartphone with two fingers.
Much love,
The Branches
William is a candidate for a transplant. However, his motor skills, regardless, will continue to decline. Basically, he will look like a quadriplegic, but will be able to feel, although with management of medications he will not be in pain. Motor skills also involve the mouth and ability to talk.
William's disease is progressing slowly. Therefore, he will continue to be able to see, hear and have some neck movement and very little arm and leg movement until his 1st birthday. At that time, they say, he will start to decline. He may live until he is 4 or 5, but will spend those last years in a vegetative state.
With a transplant, because his symptoms began when he was almost 3 months ago, he will still lose all motor skills. From what I understand, Krabbe Disease affects the peripheral nerves and that damage cannot be stopped nor fixed. Actually, any damage at this point cannot be reversed regardless of transplant. What the transplant will preserve is his sight, hearing and his receptive language skills that are still intact at the time of transplant, which if we committed to doing it today, would not be for another 4 weeks. In other words, if he would lose all neck control in a month, he will not get that back. He will communicate through an assistive device such as a computer. Life expectancy without transplant, Dr. Escolar said, would be 4 or 5 years, and the last 3 or so years he be in a vegetative state. It doesn't seem real to be writing this; they don't even make movies about this because it's so sad.
Life expectancy with transplant is about 15 years. There is a 10% fatality rate due to the transplant.
The risk of infection during and after the transplant is high. He will be on chemotherapy to remove all of his bone marrow, he will be in isolation. If we commit, we will fly back to Pittsburgh on Saturday, and stay there for 3 to 5 consecutive months. The transplant is not 100% successful. There is a chance nothing may change and we would had spent a lot of precious time with our Little in the hospital...this is a decision I wouldn't wish on my worst enemy.
We will make a decision by next week. We are beyond exhausted, currently waiting for our luggage at baggage claim at midnight and are in no way shape or form capable of making big decisions. We ask for your prayer to help us make the best decision for our family. There isn't one thing in this world we wouldn't do for our son. He is a true blessing and we are honored to be his mommy and daddy.
Again, apologizes for the typos, as it is late and I'm typing on my smartphone with two fingers.
Much love,
The Branches
Friday, December 19, 2014
ER update
William is recovering well. Our neurologist says we will be discharged soon. He DID NOT have seizures, thank goodness, but a severe reaction to the medication. He will be fine in hopefully a few hours and we will get to go home tomorrow.
William's 1st ER visit
William started a medication yesterday to help with his hypertonicity. He had an unexpected reaction. Instead of helping his rigid muscles and joints and help him to relax, it caused his pupils to dilate, he became extremely irritable, he had slow shallow breathing, he was in and out of conscience, he did not recognize Robert or me, and looked as if he was having seizures where he would stare off for a moment, then he would go completely limp for 5 seconds or so, then wake up screaming.
Currently, as of 8:30am Eastern time on Friday, William is admitted into Children's Hospital here in Pittsburgh. He is hooked up to an EKG to measure seizures (I apologize if that's the incorrect acronym for that), an IV to help flush the medicine out of his body, and the other wires involved to monitor his heart and breathing.
William's adverse reaction is uncommon. We came by ambulance to the hospital late Thursday night.
Robert stayed with William all night and I came back to the hotel for a break.
On a positive note, the medicine seems to be completely flushed out of his tiny amazing resilient body, he is eating solids (sweet potatoes, his favorite) and is resting comfortably. Robert said he gave the doctor a good smile this morning, William's way to letting mommy and daddy know everything is OK.
We are still planning to go back home to Utah on Saturday. Not sure if that will happen or not at this point.
I apologize to family and friends that we speak to regularly on the phone that this is the first you are hearing of this, as time is of the essence at this point. Thank you for understanding.
Thank you for your continued support. Hopefully this was just a speed bump in an already ill-maintained gravel road.
Currently, as of 8:30am Eastern time on Friday, William is admitted into Children's Hospital here in Pittsburgh. He is hooked up to an EKG to measure seizures (I apologize if that's the incorrect acronym for that), an IV to help flush the medicine out of his body, and the other wires involved to monitor his heart and breathing.
William's adverse reaction is uncommon. We came by ambulance to the hospital late Thursday night.
Robert stayed with William all night and I came back to the hotel for a break.
On a positive note, the medicine seems to be completely flushed out of his tiny amazing resilient body, he is eating solids (sweet potatoes, his favorite) and is resting comfortably. Robert said he gave the doctor a good smile this morning, William's way to letting mommy and daddy know everything is OK.
We are still planning to go back home to Utah on Saturday. Not sure if that will happen or not at this point.
I apologize to family and friends that we speak to regularly on the phone that this is the first you are hearing of this, as time is of the essence at this point. Thank you for understanding.
Thank you for your continued support. Hopefully this was just a speed bump in an already ill-maintained gravel road.
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