GVH...and other trails...

David was sent home after just a month in the hospital.....he was doing very well...and we were extremely grateful. We were permitted to go home because we only lived 45 mins away from the hospital...so if there were any problems we could get to the hospital quickly...
When David came home he was on 21 meds a day. He had a port in and that required flushing twice a day. Time at home was filled with caring for David, giving him his meds, and cleaning the house top to bottom everyday....scrubbing floors, bathtub, baseboards, counters, vacuum rugs, etc. It was very exhausting. David was only home for about a week when I was sent to the hospital with severe gall bladder attack. I had a fever and I was unable to see David....This broke my heart. I had to have major surgery...and I was out of the house for 2 weeks. During this time David was admitted for GVH or Graft Vs. Host disease. This is where my bone marrow attacked David's body because it was foreign to the immune system. David was in the hospital for a few weeks to get this under control. This was a very difficult time for me because I wasn't able to be with David and this was tough. I was very depressed!
David was sent home and I went home AMA.....no one was keeping me in the hospital when he came home.....The next few years were filled with visits to the hospital and struggling with GVH.....David never fully reconstituted his immune system but with IVIG...(antibodies that others donate) he was gradually able to go to church.
During this year my sweet mother in law had suffered and died from breast cancer. We miss her terribly but we were so happy that she lived long enough to see David start to get better and have a fairly normal life! This is a picture of her holding David during Transplant!

David's First Transplant.....

Our oldest son David was diagnosed with SCIDS and after weeks of being in the hospital he was sent home to wait for a life saving bone marrow transplant. We were only home with David for less than a week when we were sent to Children's Hospital of Philadelphia (CHOP). We were sent to the bone marrow transplant clinic and we met a wonderful doctor....Dr. August. This man was so caring and always took the time to explain the process of the procedure and would answer our many questions.
When we walked into the hospital we just took David in like any other parent would take their child into a doctors office. We soon learned that David should have been in isolation and needed to wear a mask when he was outside and with other people. This was a whole new world for us and we had a lot to learn. During this visit we had blood taken from all three of us.....and genetic studies were conducted to determine where this genetic disease began.
David was admitted into the hospital within the week and began chemo therapy. Before chemo they inserted two pic lines that when into a vein through his chest and into his heart. This would allow for blood removal and allow for IV's to be administered without sticking him.
After much testing and research it was determined that David would need my bone marrow for the transplant. At this time they would do HLA typing and usually there are 6 types. I was almost a perfect match with a 5 out of 6 match. Dave, my husband, and I share two characteristics and this was the gene that was inherited by David. This was one of many circumstances that God had planned for our lives and proved to us his everlasting guidance and plan for our lives.
David needed to begin chemo therapy to wipe out any immune system that he did have. This was necessary because the bone marrow doesn't just grow our immune system but also red blood cells, platelets, and other life saving cells. This was the reason behind the chemo therepy.

David was very sick and had 7 days of chemo....and on June 27th (his 6 month birthday) David was given the life saving bone marrow. Earlier in the day I donated the bone marrow.....I was put under and was stuck in the hips approximately 800 times to remove 800 cc of bone marrow. The doctors then processed the marrow to remove cells and to make it as pure as possible. At 10:00 pm...David received the transplant.....both Dave and I were present....all I can say is it is very anti-climax.  The bone marrow has "homing" cells so when it was given to David by an IV....it would migrate to the bone.....so even though it was painful for me.....David didn't even wake up...LOL... 
I want to take the time to explain the whole process that we needed to go through each day,  David was in a small room with one wall having a hepa filter...the other three walls are windows. There is no door so that the filter could draw in air and filter it out again. The room could just fit a bed and a night stand....that is it! Since David was in a crib we had room for a rocking chair for me to sit use. The sheets were disposable and were changed twice a day. He needed to have his skin serialized twice a day with special soap. Anyone entering his room needed to have full isolation gown, cap, booties, mask, and gloves. The mask needed to be changed every thirty minutes....and when you leave the room....so that you can change the mask....you need to strip off the isolation garb, wash your hands, and redress again, I only mention this because later in our story things would be different.
Throughout the whole process David was only in the hospital for 6 weeks....this was a very short time compared with other children. David also never got an infection or sick during this whole time!  This was amazing because usually patients would get very sick during this time that he didn't have an immune system. David was sent home around July 20th this is just a month short of his transplant date which was very early in normal circumstances....but God's hand had been on David and his perfect will was being done. David was our miracle and God's loving hand of protection was very evident. His time home would be short lived....

Who did it?

Our son David was in the hospital diagnosed with a rare genetic disease. The doctors wrote David off and told us to start making funeral plans. On Mother's day God granted us the gift of giving us our son back. David was doing much better. Within 24 hours David was moved from the ICU to a regular hospital room.
It is at this point in our stay that a week had passed, the test results were returning and we were given the diagnoses for David as Severe Combined Immune Deficiency Syndrome (SCIDS). We were told that this was the disease that was better known as "Little boy in the plastic bubble". However, our hopes of having David in a bubble to protect him was dashed when we were told that they didn't put boys in the bubble any more. We wanted to know what could be done for our son. I knew that God had given us our son back and that he was going to complete the process by healing him in some way.
The doctors discussed the different types of SCIDS and that there was three possibilities to help David. The first was that he was missing an enzyme and would need to have a weekly IV to help keep him healthy. Or he could have another type of SCIDS that could be used by implanting art of an aborted fetuses to help David. We told the doctors immediately this was out of the question. I couldn't image God would allow David to be helped by using the murder of another child. The finial type was the most severe and the only option that was available for us which was a bone marrow transplant. It was explained that with a bone marrow transplant the donor's immune system would begin to grow in our son.. The problem was that he didn't have a sibling that would be a perfect match. At this point in history there was no donor program for bone marrow....we didn't know what was going to happen. After the doctors investigate the different options it was decided that David's best shot was to go to Children's Hospital of Philadelphia (CHOP) which had a bone marrow transplant program.

David was getting better as far as the pneumonia but this would not help him live for very long, The race was on to find a place for David at the other hospital. Of course I had many questions regarding SCIDS and the doctors were very helpful. It was explained that SCIDS affects only one baby in a million. This big children's hospital only see's this condition once every five years. Within the next week...less than two weeks since David was admitted in the hospital, he was sent home.
Now we had many doctors but there were two that were David's regular doctors. One we called "Dr. Doom" this was a doctor that always told us the cup was half-full...he never gave us much hope.....then there was our favorite doctor...."Dr. Sunshine".....this doctor was very encouraging and celebrated every little milestone with us. Upon the day of discharge both doctors were present to send David home....the following conversion ensued:

Dr Doom: "We did it! We made David better!"
Dr Sunshine: "
           "You know that we didn't make him better....it was out of our hands. This was a miracle!"
I smiled....I said "Yes, God was the one who healed David!"

Dr Doom was the doctor who told us to make funeral arraignments. He also was the doctor who thought I was in denial when I told him David would get better. Dr. Doom tried to take the credit for David to have survived this far....and Dr. Sunshine reminded him that they didn't have a single thing to do with his recovery. Years later I studied the names of God and "JOHOVAH+RAPHA" means The Lord who heals.....this is exactly who healed David "JOHOVAH-RAPHA". 

David was sent home. The doctors told us to keep him away from other people and that CHOP would get in touch with us soon. We were so happy and praising God for our miracle child. God is so good! We would be back in the hospital within the next few days...but in the mean time we thought the worst was over....little did we know what was in store for our little guy. But God did know and used this situation to prove to us that He was in control.

Our journey begins....

Our son David was in the hospital with Severe Combined Immune Deficiency Syndrome (SCIDS) and the doctors gave up all hope. We were told to make funeral arrangements. This was a Thursday night...we knew our family and church family were praying for David and for us. However, as word was spread about our little guy churches across the nation were praying for David. We had family in other churches of course put David on the prayer list and in turn people from these prayer groups would contact family and friends to pray for David....and so the amount of prayer grew for David....and the peace that passes all understanding was given to my husband and I. On this night a pastor from a local church that my husband once attended with his parents stopped by and prayed for us. His wife worked at the hospital as a nurse and she promised she would check on him frequently during the night. I was unable to sleep by his bed side....so God sent someone who could check and pray for David through the night.

We were only able to see David for 30 minutes every hour....so the rest of the time was spent in the waiting room.....we saw other parents who had children with holes in their hearts....we asked God..."Why couldn't David have this difficulty? Then it could be fixed and we could be done with it"....But God knows the beginning from the end...and his perfect will would be done.

On Friday David's regular nurse was off and we had a different nurse on duty....in the morning she told me she noticed that we had our bibles and scripture verses around the room and mentioned that she prayed for David over night. We were so glad that again God sent more people to pray for our little one. I knew that the Lord was going to bring David through.....I had peace about it....everyone thought I was in denial.....but I trusted the Lord to work everything out.

Now during this time David was on a ventilator and he was paralyzed to prevent him from moving....I would only be able to tell that he was awake when I saw the tiny tears fall down his face. He was awake but couldn't move.....I still think about how scared he must have been....and it scared me to death. I wanted to make it all better. Besides praying for David, I would read books to him hourly. It was a comfort to me because it was something I could do to help.....I was unable to care for him...but I could talk, sing, and read to my son. 

On Sunday, May 7, 1989....Mothers day...which was my first and possibly the last one with David....I walked into the room and as I did every time I entered I greeted him.....but this time something changed. When I said "Hi honey..." David SMILED! This was the BEST mothers day gift I ever received!

The doctors came into the room on this day and said that they couldn't believe the change in David....he was getting much, much, better. He was a totally different kid! They thought that his x-ray was wrong that morning and took another one....because it was so much better then the one they took on Friday!

Despite the fact that the doctors thought David would die...the Lord had his own timing and healed David so that despite what the doctors thought would happen to him.....the Lord worked a miracle and he was getting better! There was still a long road ahead of us...but the Lord had everything in his own timing!

David's story continued.....

In April of 1989 I knew something was wrong with my new baby boy.....he was always sick, had diarrhea, didn't eat, losing weight, coughing, and cried a lot. I would take David to the doctors every other day....and on the day he was not at the doctor's office I called. David went from a healthy 18 lb boy to a sickly 9 lbs. I knew something was wrong....but the doctors keep telling me that he sounded good and nothing was wrong. My husband and family thought that I was overreacting. But I knew my son!

On Sunday, April 30th David's lips turned blue while he was coughing. We took him to St Christopher's hospital in Philadelphia....were we lived at the time. When the staff took my son  into the ER they put a pulse ox on his little finger.....at the time I had no idea what the number's meant....but his oxygen level was at 86....all of the sudden the nurses and doctors threw us out of the room with no explanation...we were scared! What was wrong? Once we were called back into the room the parent of the child that was in the next bed to David was looking at us with pity......they knew something that we didn't know yet. All I could do was pray.....the doctors told us that David was very sick and they didn't know why.....they didn't know if he would survive the next few days.......

It was April 30th and our first son David was in the hospital with some mysterious illness that had the doctors perplexed. When David's oxygen level was extremely low they took a chest x-ray and discovered that his lungs were full of pneumonia. The doctors usually hear crackles when a person has pneumonia...yet all these months David never did. This was pointing the doctors to a specific disease however, they needed to preform a lung biopsy to determine the cause of the disease.
Once the doctors performed the test they put David on a ventilator so that he could breathe. It was discovered that David had a rare pneumonia that is caused by a germ that we all have in our throats...with a normal immune system we fight it off....but he was not able to fight off this germ. The doctors asked us the standard questions regarding the possibility of me having HIV...and that I could have passed it onto him...of course this was impossible....I never did drugs, had a blood transfusion or had relations with anyone besides my husband. I was scared......I thought maybe I could have picked up HIV some other way....you have to understand the scare of the 1980's ....it was believed by the public that one could get HIV from mosquito bites, or toilet seats....The doctors soon explained that they needed to do more test but that David was born without an immune system. Why GOD? This was our immediate question.....why us?
The doctors said that David should begin to show improvement with a strong antibiotic that would help him within 8 hours. However, David did not get better. They needed to switch to the last antibodic that was left to fight this pneumonia, Bactrum. The doctors again said we should know within the next 8-16 hours if the med's would work. Meanwhile, we prayed! God was are only source of strength. We had our family gather around us...our church family visited us and prayed for us....but we still felt alone. No one understood. But when we turned to the LORD....he gave us peace. We were still scared and felt like we were drowning....but the LORD gave us great strength. We would draw on this strength many times throughout the years.....and the LORD always took care of us.

Eight hours, ten hours, twenty-four hours went by and David was not any better. He seemed worse. The doctors told us to start making funeral arrangements....

David....my bubble boy!

My husband and I were high school sweethearts.....we were married in 1986....and in December of 1988 God granted us a very special Christmas gift...our first son!
We were so happy to finally have our son......I was 21 years old and I was ready to be a mom, a wife and live happily ever after! However, this was not in God's plans......
David was only one day old when he became sick....it started as a cold....the doctors told us that it was just infant congestion...however, after a few weeks I began to question the doctors as to why he still had the cold......So then it was decided that he had allergies.
What did I know? I was a new mom.....I believed the doctor and did what I could to make my son comfortable while he slept....I raised the head of his crib and put on a humidifier. Soon he began with thrash...and diarrhea.......The doctor just treated the conditions and moved on....however, by April I knew that something was wrong. Really wrong!

SCID KIDS

My childhood friend has encouraged me to share my story. So I decided to take her up on the challenge and I appreciate her encouragement.......
My husband and I have four wonderful sons! Two of which have a rare genetic disease called Severe Combined Immunio Deficiency Syndrome - (SCIDS) or as most people understand it as "the bubble boy" syndrome. This is a rare genetic immune system deficiency.
This is NOT AIDS or HIV.....when my son was born (in the late 80's) this is automatically what people thought. SCIDS is an immune system problem but were HIV depletes a healthy immune system...SCIDS kids never had one to begin with in their life.
I am blogging to shed light on this subject. Back when my first son was born there was no one to reach out to....there was no physical person who understood what a parents fear was and how to handle this diagnoses.  Oh there were doctors to explain the condition.....but no one to say "Hey, I walked in your shoes....it is tough....but you CAN do it!"
So this blog is to reach out and say I understand.....I know how you feel.....and it is horrible and you feel like this is the end and there is no light in the tunnel....but this is just NOT true. I have lived through 23 years of this process...my son was one of the first boys to have had a mismatched bone marrow transplant (more about this later). But I am here to tell my story, explain all the confusing information and to educate others about SCIDS.

(Bubble boy...David V)...