Mark's journey...

Mark had a much easier time with his transplant.....he didn't have GVH...and to this day he still hasn't had any.....the doctors at CHOP did a study on the two boys....and they discovered that since Mark had his transplant early....and they used the mothers bone marrow....there is not any GVH involved. The maternal stem cells were recognized in the new body because within the first month there are maternal cells already present.
Mark did have difficulties though....he still needed IVIG and it was difficult because of his little veins...they wanted to put a needle in his head to access the vein each month. I just couldn't see this being done.....so we went with the IG given IM or through the muscle. This required shots in the legs weekly....and for David twice a week. It was a tough time.....Dave had to hold this little baby (Mark) still while I stuck him in each leg and pushed this THICK liquid into his muscle.....this is not just a quick stick....it would sometimes take 30+ seconds to put it in his muscle. It was very hard! Then David would hide because he knew he was next.....so we would have to fish him out of his hiding spot and do the whole process over again.
After two years of doing this process we switched to IVIG...by this time Mark's veins were bigger and they were able to access it....but if he cried the veins would disappear. They they would need to access the foot...OUCH!
So here we are telling a two year old NOT to cry until it was over....and he was a trooper....he didn't cry. It was amazing.....this little guy would watch the needle go in and not even move or whimper.
There were times through the years when some nurses couldn't get his vein....one time they stuck him 7 times......it was horrible! I was so sick and he was in so much pain....this was before the numbing spray that they have now....
Mark's struggles with his immune system were completely different than from David's.....Mark's bones were weak and he was ALWAYS breaking something. His first cast was when he was three years old...his bones were just so soft....but nothing kept him down....he has played baseball, hockey, football, and basketball with casts on!
Another problem that Mark has exhibited was a tendency to get Meningitis.....when others would get sick...he would get meningitis. Within a period of Three years he had Meningitis four times....fortunately it has always been viral...but it has been scary!
Mark is now going to college and is looking forward to joining the Police Force.......His immune system is stable and he is keeping himself healthy!

HAPPY NEWS!

David went to the doctors yesterday....he is officially able to have his "baby" shoots....This means his immune system is now Normal!...YES...normal! Praise the LORD!
He now no longer needs to take his IV for Microfungin.....he is also making his own "B" cells...which means that potentially he will not need IVIG any more...however, they are keeping an eye on it....he is still on Bactum and Acyclovir....which is just precautionary......he may have a touch of GVH....because when he was out in the sun he got a rash....so they are keeping an eye on it....so his Tacrolomis will still need to be taken....but he is dwindling down on his meds....YEAH! (happy dance)

Our Family grows!

It was 1990 and we were enjoying our new family life! We had moved into a new home in the far northeast. We were living closer to the family and to our church. We were very happy! Well you know what they say about a new house...."New house...new baby!" Yes, we found out that we were expecting our next child. We had undergone genetic testing....we knew that I was the carrier of the SCID gene...and that it was carried on the X gene...so this means that each one of our sons would have a 50/50 chance of having SCIDS. However, if we had a daughter she would have a 50% chance of being a carrier...but she would not be sick. We wanted more children because we knew that they were a great blessing from the LORD.....Well needless to say....we were excited about being pregnant....but part of us were scared. But we knew that GOD was in control and He would "work all things together for our good". We decided that we would have an amniocentesis to determine the sex of our child and at the time they didn't have a test that could test for SCIDS....they were close...but not quite.
While we were waiting we found out that I was exposed to CMV....the person I was exposed to had given it to me and she was pregnant. Her child had developed complications from what was perceived to be CMV and now I was exposed. The problem was that there was no telling what would happen to a boy with SCIDS that contracted this disease. This was a very stressful time in our lives!
Just before Thanksgiving we had the amniocentesis and in December we found out that we were having a boy...and that he had SCIDS. We were happy to be having another son...but at this point we knew that the Lord's hand was on his life and that in the end everything will be OK.
But here is the thing....we had A LOT of people upset with us! Even though we had peace they couldn't understand.....we had people pressuring us to abort our child. There was absolutely NO WAY this was going to happen! But I felt like I had to fight tooth and nail for my son and he wasn't even born yet!
Fast Forward to April 1991....we had everything planned.....our son would be born in University of Pennsylvania....which is connected to Children's hospital of Philadelphia......he would be kept in isolation...until we could officially get him diagnosed and then he would have his transplant.

I went into labor at 3 weeks.....and the doctors stopped the labor....they weren't ready yet! Well one week later they decided to induce labor....so my stubborn lazy son decided that he was going to take 27 hours to make his appearance! Yes.....27 hours! But on April 23, 1991 we were proud parents to Mark Danial....and we couldn't have been happier.

We did do the test and yes he did have SCIDS....so he was whisked away to CHOP and he was the youngest Bone marrow Transplant recipient....he was 70 hours old! Since they knew that he was going to need a transplant they used the leftovers from the transplant from David....They also left in the artery from the umbilical cord and so he didn't need a port....after a week...they sent him home.....we were so excited! This was all new and very unusual but because we knew ahead of time and were prepared it was OK!

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!