Steven's Doctor Visit and Lab Results


UCLA November 16, 2000

Well we now don't need to go every other month to UCLA. It is nice having 6 months in between visits. The check up was rather uneventful. Steven has been having problems with his stomach, and UCLA said we need to keep track of it. The doctors say that all the medicines he has had, there is always the possibility of kidney and liver problems down the way. We hope this is just a temporary thing, and if it continues, they will run other tests. We don't go back to UCLA until May. Yeah. Thank you for all the continued prayers. God is definately listening.

November 7, 2000

UCLA May 4, 2000

Steven's visit was short and sweet. We saw the doctor for about 5 minutes. And they told us not to come back for 6 months. Yipee. This update is short and sweet. His counts are okay. His Kidney levels were elevated, but after we had them rechecked they were okay. So lucky for us, no excitement here. Thank you for your continued prayers. God Bless.

April 26, 2000

UCLA January 13, 2000

I first must appologize to those that have been checking for Steven's update. He has been doing well, and keeping me very busy. We went to UCLA on January 13, and the visit was quick and easy. They are very happy with Steven's progress and do not want to see him for 4 months. And the good news is, I am okay with that. Steven is starting to read, and writes cursive. He is adding and learning alot while I homeschool him. This is truly rewarding to watch. I use a school in Florida, and they keep all the paperwork for me. He will finish Kindergarten in May, and then starts 1st grade after summer break. I am going to continue to homeschool him, but he will have some outside interaction. I am truly blessed to have Steven with us, and to watch him grow everyday. God is good.

Another exciting thing in our life is that Steven will be meeting his Bone Marrow Donor Fritz and his family in April. They will be coming from Germany to visit us for 2 weeks. We are definately very excited. How can we possibly thank him enough. Because of him, Steven is here with us, enjoying everyday. Truly Amazing.

Anyway, I will try not to linger in my updates next time we go to UCLA. Sorry again for the delay. God Bless.

January 7, 2000

UCLA October 21, 1999

I am very comfortable with our check-ups now. Steven is doing very well. The doctor looked him over, and said " See you in three months". This is great. He is doing very well, and the doctors are now spreading his visits out. And the great thing is, I am comfortable with it. I am a very anxious person, and am now calming down. Steven is doing so well, that my anxiety level is definately calming down.

When we come back next year, January 21, 2000, they will immunize him for the first time with a LIVE immunization. The Measles, Mumps, Rubella Vaccine. That makes me a little nervous, but his immune system should be able to handle it. Steven is definately on his way to being a Normal and Healthy Boy again. It's been three and a half years of fighting this battle, but he is WINNING it, thanks to his Donor, Fritz.

I have been Homeschooling Steven for Kindergarten, and would like to say, that he is SOARING in school. He is learning to read words, and has already spelt a few words to. I did not expect this so early in the school year. He truly amazes me. Thank you for your continued prayers. God is definately listening. God Bless.

October 18, 1999

UCLA August 17, 1999

This visit was a rather quick visit. The doctors checked Steven over, and said "See you in 2 months". He received his second Polio vaccine (the non live version) and that was it. We go back in October. I can handle these uneventful visits. They beat the long ones we had and finally after 3 years of dealing with this disease, we are comfortable that he is healing and he is doing well.

We are planning on Home Schooling Steven for Kindergarten and we are going to set up play groups, so Steven can have the socialization he needs and wants. We just aren't ready to expose him to all the kids he would be in contact with if he was in public or private school. I am actually really excited about the Home schooling.

We go back to UCLA the end of October, and I will update the page after that visit. God Bless.

August 20, 1999

UCLA June 29, 1999

I am really getting used to these uneventful visits. And I hope that each visit is just a normal boring doctor check up. Not much happened today at clinic. They drew Steven's blood, checked him over and said "See you in Two Months." They did give Steven two of his vaccines, the HIB and Polio (dead version of polio). So Steven did get his lung work out. He screams louder than anyone I have ever heard. But it was over with faster than he could really get worked kup over. He now has 2 months to practice and exercise those vocal cords. I think we can handle that. His counts were good. So this update isn't too long. I will update again in AUGUST after his appointment on the 17th. God Bless.

June 29, 1999

UCLA May 25, 1999

Today was an uneventful visit. They checked him, says he looks good, and pretty much, "See you next month". They want to start to immunize him, because his last tetanus titer drawn on April 13, showed an increase of antibodies to the tetanus of 4%. so they say its time to immunize. Well, I won't let them give him the Hepatits B Vaccine, because there is a lot of controversy over it, and I am on a list server for Aplastic Anemia, and have noticed that a lot of people who have come down with AA have had the Hep. B vaccine within a few months of the shot. Although the vaccine is "dead", we feel there may be a link somehow. I don't remember when Steven received his vaccine, but have the information at home. So once we move back home, I am going to look into that. Although they did Genetic testing on Steven to see if his cause of AA was genetic and te testing came back negative, I still feel in my gut, Steven was "Genetically susceptible" to this disease. As Steven's father, Scott's Uncle had Mylodesplasia which is similar to AA. So maybe the Hep. B vaccine brought out the AA. Who knows. Just a theory on our part.

So needless to say, before we let him get any further vaccines, we are researching them first. So maybe when we go back at the end of June, we will be more informed and be able to make a decision regarding the other vaccines. I will post again next month. There was a small drop in his counts, but we are hoping it is just normal fluctuation. So we aren't worried yet. We will worry, only if there is a trend. God Bless.

May 25 1999

UCLA Visit April 13, 1999

Who says the 13th is an unlucky number? Well I think it is a very lucky number. We went to clinic today, and Steven had his blood drawn for the first time in over a year, through his arm. Since he no longer has his catheter, we rubbed a lot of Emla cream (it numbs the skin) all over both arms, to help take the ouch ot of the needle. Steven of course, screamed, until the needle was in him and drawing blood. He then realized he didn't feel it. Hopefully he will remember this next month. So we can spare some people their ear drums. Anyway, the clinic visit went by fast. They checked him, gave him another tetanus shot, and when we were ready to leave his counts came back. They are on the rise. And pretty close to normal now. I am so excited. I hope his antibodies are producing away. They drew another tetanus titter and we will know the results from that in a couple of weeks. I will try to update after our next visit on May 20. I can't believe on May 4th it will have already been 3 years since Steven was first admitted to UCLA for testing to see what was going on. May 23 will be 3 years since the official diagnoses of Severe Aplastic Anemia. Boy, time flies. And with the thanks of everyone's prayers, God has blessed us with a second chance with Steven. And lets not forget the wonderful German Donor, Fritz Hopster, who gave Steven the best gift of all, his healthy Bone Marrow. God Bless.

April 13, 1999

UCLA Visit March 9, 1999

We went to UCLA a week earlier this time, as Steven's had a rash since October, and it has been increasingly getting worse. Each time the doctors look at the rash, they think its something else. This past week it got so bad, that his Doctor thought UCLA should check it out, to make sure it isn't GVH (Graft Vs Host) With Steven getting off his medicine its always better safe then sorry. The UCLA doctors looked at the rash and felt it was a fungus. They told me to put Lotrimin on it and see if it gets better. Well it didn't, so I asked for a referral to a dermatologist. This doctor says it looks like bad eczema and gave us a perscription to try on it. It definately is getting better now. Back to the UCLA visit on March 9th. They said Steven's counts are looking good and they took him completely off his Cyclosporine. Finally. I am glad he doesn't have to take that medicine anymore, but am also nervous. I pray he will be okay once he's off the medicine, and that he doesn't relapse again like he did when they took him off the first time before his BMT. They also gave him another Tetanus shot. And in April they will draw blood to see if his marrow is making antibodies yet. Hopefully it will be. On March 24th, Steven has had his catheter removed as it was bothering him. The tape and bandages that were put on daily, were starting to really irritate his skin. He wasn't too happy to have his friend removed. You could say he was really attached to the catheter. He's had one since he was first diagnosed with SAA. And then when the first one was removed, he relapsed a few months later, and had another catheter put in for the BMT. He now is happy not having it there, but is sure nervous for when he has to have his blood drawn. Thanks for EMLA cream, it takes some of the ouch out of blood draws. Wish it sould take away his anxiety. We have to work on calming him before the blood draws. As he is a high pitched screamer. We go back to UCLA on April 13, and I will try to update his progress close after that. Thanks for your continued prayers for us. I feel we are on the right road now. God Bless.

March 8th, 1999

UCLA Visit February 11, 1999

These quick visits are a lot nicer than the 4-5 hour visits. Serena and Steven are little angels waiting for the doctors. Monday the 8th, I took Steven to the dermatologist because he had a BAD rash on his face. He's had this rash for quite some time, but the past two weeks, after our long walks with Nana Koss, the rash has been swelled up and inflamed. The doctors say its Seborrheic Dermatitis, and they gave me a list to bring to UCLA of how they want to treat the rash. The UCLA doctors said it would be okay to use one of the medicines but only for 3 days as its a strong steroid. The other medicine they said would be fine to use the length of time the doctors wanted. The doctors were in iand out within minutes. We are continuing to taper him off his cyclosporine, and next month he should be completely off it. Yeah! But I am nervous, due to the last time we took him off the medicine, (before his BMT), that's when he relapsed. But now with this GREAT NEW Marrow, things should be okay this time. They decided not to give Steven another Tetanus shot this time as they want to see if his marrow is making antibodies to the last tetanus shot they gave him in January. So we will wait. At least Steven didn't get poked this time. That made him very happy.

We go back in 5 weeks, on March 18th. At that time we may discuss having his catheter removed. He really doesn't need it anymore, but it's nice for the blood draws, as he doesn't get poked yet. He will not be too happy when that starts. He wants his line removed, but then again doesn't want to be poked for blood tests. We'll see. I will update in March. Sorry this update took so long to get posted.

February 10th, 1999

Ucla Visit January 7, 1999

Today was Steven's first quick visit. No three hour- 4 hour day. We had his CBC done the day before, so we just needed to see the doctors and get some blood drawn and his first Tetanus shot with his new marrow. The doctors are pleased with Steven's progress. They say that even though his white count is not in the normal range, at least it is stable, and that they have seen that white counts take some time, even years to be back in the normal range. As long as he is not getting sick, he is doing well. Steven asked the doctors when he can have his line out, (Catheter) as he doesn't like it anymore. The doctors said we can get it removed anytime. So we will see how his marrow does with the tetanus, and if it was able to make antibodies against the shot, then we will schedule for it to be removed. The plan is this: They gave him his Tetanus, then draw blood for antibody testing next month, then give him another Tetanus, and draw more blood the following month. The doctors say that it might take a few times, before we see any evidence of the marrow being able to make antibodies. Once they know that he is able to produce antibodies, then they will slowly start to give him his immunizations, and our Office Visits will start to be further apart. For now, we go back on February 11, so we will update this page then.

We are still anxiously awaiting the news of the donor. We can't wait to be able to contact this wonderful person and thank him/her for giving our son the life he now has. They say it may take awhile, but we are hoping we will hear from UCLA with the information soon. As soon as we know anything, I will update everyone.

January 07, 1999

Ucla Visit December 10, 1998

Steven received his last dose of IVIG (immune globulin) today. Hopefully his marrow is now able to produce antibodies on its own. They will test this out next month when we go back, by giving him a Tetanus shot then checking the following month to see if he was able to make antibodies against the tetanus. Steven's nurse Kim told us last month, that she wouldn't let us leave the procedure side without some type of excitement. Well, little did she know that she predicted what Steven's last Procedure visit would be like. Just when we were finally getting ready to leave, the nurse had to draw some blood for research, and Steven looked down at his tape on his line, and noticed blood. Well, we thought it was just a drop from the blood draw done just moments before. So I took the tape off his cap, and to our surprise, there was a hole in his tube. So the nurse immediately called to have someone come and repair it. Steven was upset and scared. Then about an hour later, someone came to cut the line, and glue another line on. All this fancy stuff, but I am uneasy with the new extension. One of my fears has always been Steven getting an infection. And with God watching over us, Steven has not had one over the 2 1/2 years he's had catheters in his chest. I just keep praying he won't get one now. I think next time we go back to UCLA, we will seriously talk about removing the catheter. I can't believe we are almost a year out of transplant. December 23rd will be his one year marker. I am anxious to find out about the donor, and can't wait to be able to contact him/her. I am getting the run around, but am determined to find out how to contact the donor by the time Steven's marrow's Birthday. I can't wait to express all our thanks to this person for saving Steven's life. I am rambling on and will now end dthis update. Following are Steven's latest counts. Please continue your prayers for Steven. They truly help in his healing process. We go back on January 8th, and I will update the page then. God Bless.

December 10, 1998

UCLA November 12, 1998

We got to UCLA and Steven received his 2nd to last dose of IVIG. December 10th, will be his last dose of IVIG. The doctors say that he looks good, and they are starting to reduce his Cyclosporine so he can soon be off the medicine. I am excited and nervous about taking him off the Cyclosporine. When we took him off the medicine after his initial drug therapy, in July 1997, his Aplastic Anemia came back three months later. I know that then, he didn't have this new marrow in him. So hopefully, with God's Will, we won't have a problem this time.

Steven received his Flu Shot also. He begged the nurses to put the shot through his catheter, with no avail. He gave it a good try though. They will probably remove the catheeter in the beginning of the year, as he will have no use for it after his last dose of IVIG. So he will be "Poked" for blood draws, once that happens. Something he does not do gracefully. Even though we put EMLA cream on his arm prior to the draw. (The emla cream numbs his arm so he doesn't feel the poke.) Hopefully we won't need to have his blood draw as often though.

When we go back in December they will start to test his new marrow's ability to produce antibodies. They will first give him a tetanus shot then in January they will run a test to see if he was able to make antibodies against the shot. Hopefully he will, and we can begin to vaccinate him slowly so he will be ready for Kindergarten in the fall of 1999.

We go back to Clinic on December 10th and I will update this page then. God bless.

November 12, 1998

Doctor Visit October 15th

We went to UCLA on Thrusday October 15th. Steven received his usual dose of IVIG (Immune Globulin). He receives IVIG monthly till he is one year out of Transplant. So he has only a couple more doses of that. The doctor's say he looks good, and that in December they will test his marrows ability to produce antibodies. They will give him a Tetnus shot, and then the following month they will run a test to see if he was able to produce antibodies. If his new marrow is able to produce antibodies, then they will start to immunize him slowly.

They also ran a CUMMS test on him again. They want to make sure he doesn't have any antibodies destroying his red cells, before they start to taper his cyclosporine. (The last time they started tapering his cyclosporine, he had some antibodies destroying red cells, so they stopped the taper. The doctor's say this was a form of Graft Vs Host.) If the CUMMS test comes back negative, they will start to taper him off his cyclosporine slowly.

The doctors told us that we all need a flu shot, and steven will get his in November on his next visit, as the serum wasn't ready when we were at UCLA. So dutifully, we all went and got the shot, so hopefully STeven won't get that nasty flu. We go back to UCLA on November 19th. I will update his counts and doctor visit at that time. Below are his current lab results.

October 14th Labs

View His Past Blood Counts

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