Steven's Time at UCLA
PRE TRANSPLANT
After saying Goodbye to his sister Serena and his Nana and Papa Smith, we headed off for our journey to UCLA with our car packed with lots of things to keep Steven busy and comfortable while we were there. He wasn't to happy that he had to leave his baby sister behind. When we got there, his Nana Modin was waiting there for him, and boy was he happy.
Steven was admitted to UCLA on Monday, December 15th, 1997. As he remembered being there a year and a half before, he was a little anxious. We explained to him that he would be there for a while as the doctors were going to make him healthy. We brought a lot of things from our house, to keep him happy and occupied. So he wouldn't sit around and worry about what was going to happen.
The first day there was just signing in and getting comfortable with, what was now known as our new home. He was upset that Serena, his 6 month old sister, wasn't able to join us, but we kept plenty of pictures around. The hospital was great and didn't mind that Scott and I stayed the whole time. Neither one of us were willing to leave his side. Although we missed our daughter, Steven was the one that needed us through this difficult time.
The second day we were there, Steven was scheduled for an early morning operation for getting his Broviac-Hickman Catheter in (again). We were able to go in the operating room and wait till he was put asleep before we had to leave. And when they wheeled him to the recovery they allowed one of us to be there when he woke up. He wasn't too happy to have his "hanging friend" back, but once we explained all the medicines they were going to put through it, he was okay with it since the other alternative was to get "poked". Once the operation was over with and he got back to the room, he was given the "Nintendo 64" game to play for the day. Boy was he good. He had never played it before, but sure caught on fast. Our 3 1/2 yr old son, was making Mario do things, like stand on his head, slide, and break dance, that his father and I couldn't even do. Besides being a little groggy from the operation, he had a good time, playing with Mario, and having all the attention on him. Since his first diagnoses in May 96, he has been the center of attention and always in the spotlight, which I must say, he likes alot, but doesn't mind sharing the spot light with his sister Serena. His grandmother, Sandi was there and she played with him too. He loves when nana plays with him.
The third day, they started the chemotherapy, cyclophosphomide which he would receive for 4 days. We had to make sure he went to the bathroom every two hours, once the chemo started as they didn't want the medicine to sit in his bladder as it would start to eat away the insides. I know he didn't like that to much, especially when he was sleeping and we would have to wake him up. On the fourth day, they started the ATG, (antithymocyte Globulin), which he was to receive for 3 days. We were pretty nervous with the ATG, as when he was given it a year and a half prior, he had reactions to it. UCLA took precautions, and premedicated him with benadryl and tylenol and had a crash cart present, in case Steven had any problems. By the Grace of God, Steven handled the ATG and the chemotherapy very well. Sunday December 21st was Steven's "day of rest". They call the day before the transplant the "day of rest" as he didn't receive any chemotherapy and his body got to rest before the transplant.
Monday morning, the day of the transplant, December 21st, they came and took Steven for his one dose of radiation. They had Steven lay on a bed next to a wall, and they prepared him for the treatment. Told him what would happen, and asked if he would like any medicine to put him to sleep through it. He said he could stay still and didn't want medicine. (Who could blame him, with all the meds he has already received.) Sure enough, he stayed still and talked to us through an intercom system, while the Radiation started. 20 seconds into the radiation, he said, "Mama, I need to go PeePee", so they turned off the radiation, unlocked the doors, and let us help him go potty. The rest of the 40 minutes, he was great, talking and staying still. 20 minutes into the radiation, they stopped and turned him around so we went in and told him how proud we were of him, then they finished the other 20 minutes. The radiologist couldn't believe he was only 3 1/2. Our "Macho Man" impressed everyone there. The rest of the day, we just enjoyed being with Steven and praying everything would go well through the transplant.
During the conditioning for the transplant, Steven received around 40 different medicines. One night as I was cuddling him to go to sleep, he looked up at the IV Pole and saw various tubes infusing medicines into his timy body. He then looked at me with questioning and scared eyes, and hugged me tightly as he fell asleep. My heart was crushed. I thought, "How do you explain to a 3 1/2 year old boy, that they had to practically kill him, before he could get better?"
TRANSPLANT DAY
Monday December 22, 1997 was Steven's scheduled transplant day. After Steven had his dose of radiation, we tried to keep ourselves busy playing with him, while we anxiously waited to hear his new marrow was at the blood lab. I must have visited the Chapel several times that day. Finally around 7:00 pm we got word that the marrow was there and they were depleting it of red cells and cleaning the marrow. It took several hours till the new marrow was ready to be transfused into Steven. Finally, at around 2:00 a.m. on December 23, Steven's doctor, Dr. Marcus, arrived in our room and informed us the marrow was on its way up. When it arrived, she wasn't happy with the cell volume, as it was higher then they like, but decided it was better for him to have the higher cell volume, then to send it back to the lab and have them reduce it which could take several hours, and once the marrow is out of the donor's body, you want it in the recipients body as soon as possible, preferably within 32 hours.
They started the Bone Marrow Transplant at 2:13 a.m. on December 23rd and it took approximately 45 minutes till it was completed. It was while the marrow was being transfused, that we learned Steven's blood type would be changing. Steven was born O+ but once the new marrow started to graft and produce cells, his blood type would change to A+. Which was something we never thought about. We thought that was something that had to match, but everything else matched so good, that the doctors felt it was better to have this marrow in him, that they didn't mind changing his blood type.
During the transfusion of the new marrow, Steven's blood pressure was extremely high, which is common during transplant, so they had to give him some medicine under the tongue to control it. Once the transfusion of the marrow was completed, it was a big relief to know he now had some healthy marrow in him. Now we just had to wait for the new marrow to graft.
With the high cell dose they used in the transplant, the doctors weren't worried if it would graft, but more worried about the extent of Graft Versus Host, GVH, he would get. As they have seen that with a high cell dose, the patient usually has no problem with the marrow grafting, but the GVH is usually greater. Graft Versus Host Disease is when the new marrow recognizes it is in a foreign body and tries to fight it. GVH usually affects the skin, intestines or the liver. It could affect all three or just one. They classify GVH by 4 levels. Level one is mild, level four is extreme and can be deadly.
POST TRANSPLANT
Before going to UCLA for the transplant, we cut Steven's and Scott's hair really short. As Steven says "I look like Tyler". (Tyler is his cousin that he loves very much) So when it started to fall out, it wouldn't scare him so much. Now as we waited to see signs of the Marrow grafting, Steven's hair was starting to fall out. One day Steven said "Mommy, look my hair is falling out. Why is it falling out?" My reply was, "remeber all those medicines they gave you", he shook his head, "well all that medicine made your hair fall out, but it will come back, more beautiful than before." Little did I know how true that statement was. His hair did come back better. His hair was very blonde and very fine and straight. Now his hair is a beautiful sandy ash color and thick and wavy. The type of hair women would love to have naturally.
With Steven having no white count, his mouth had sores covering the inside. We had to keep cleaning his mouth and teeth 4 times a day. His mouth hurt so bad, they gave him morphine for the pain. He also received TPN nutrition through his catheter to ensure he was getting the proper nutrition he needed as he wasn't eating that much and he had some problems keeping the food down.
Day 15, (15 days after the transplant) January 7th 1998, Steven showed a white count of 0.1. Which is really nothing, but the fact that there was a white count, excited us. The Doctors told us not to get too excited as 0.1 is virtually nothing, but we were still excited. The following day, January 8th his white count was 0.2. Then January 9th his white count was .4 and continued on the upward trend. His new marrow was definately starting to work.
Along with the white count going up, Steven started to have some GVH. First thing we noticed was a rash on his skin. To us it was bad, but to the doctors it was very mild, only a level 1 GVH. Then the same day as we noticed the skin rash, his intestines started showing signs of GVH in the form of diarrea. The rash went away after two days, so even though his volume of diarrea was increasing, the doctors were hoping it too would be short lived. As the volume kept increasing with no signs of decrease, they classified his Intestinal GVH as Level 4, which could be deadly if not brought under control, so they put him on Steroids. Once the steroids took effect, the diarrea became less and less. The GVH was under control at this time and hopefully won't be back. Unfortunately, Graft Vs Host disease, can return at any time, but hopefully we will not have to deal with it any more.
Thinking back, we were really lucky that Steven did as well as he did. Going into the transplant, the doctors warned us of all the bad things that could happen and all the different medicines he would probably be on before he was released from UCLA. They informed us that most of their transplant patients are on 7 different antibiotics and at least one antifungal medicine, called amphoteracin, AKA Amphoterrible. Scott and I decided, we were going to do most of the care for sTeven when we were in the hospital. We kept gave him the baths, did his mouth care, and constantly washed our hands and his hands. We were known as overprotective, but we definately feel it helped Steven from getting sick while his white count was down. Well luckily Steven was only on 4 antibiotics and didn't have to be put on Amphoterrible. And Steven didn't have any down days. There were certainly some quiet times, but he was always happy and smiling and full of energy to play and laugh. I definately feel his positive attitude and love for life, helped him through this difficult time in his life. It definately helped me to remain strong through this nightmare.
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