Latest Updates From Steven's Grandma & Grandpa

OUR PRECIOUS LITTLE ANGEL
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Tue, 19 Nov 1996

 Trev took Steven to the clinic today for a CBC and it was up even more than a few days ago.(except the HBG) Here is his CBC results.... WBC 1.8 HBG 8.3 SEGS 20 ! PLATELETS 59 ! So his counts are rising and he is doing good. Except his HBG is still low. Still no signs of Chicken Pox in Steven or his baby brother. (Doug has had them) Nancy aka Elegance (Steven's grandmother)

Wed, 13 Nov 1996

 Steven is doing really good. His blood count dropped as a reaction to the last chemotherapy, but that is the only reaction he has had. Trev and I don't know how to feel about that. Does that mean that the chemo didn't work or does that mean he has a strong constitution and prayer in his favor. He does look so much better. He is losing the raccoon look and is sprouting little patches of dark hair. The nurses call him "patches" like the little dalmation. He said Patches was ok but don't call him dog. He is getting his energy back and is giggling and teasing his baby brother now. He feels way to good to stay in the house, but that won't be for long. This is his latest blood count as of 11/12/96. WBC 1.6 (normal is 3.6 to 11.8/cumm) HGB 8.9 (normal is 10.7-14.7/dl) ( He gets blood transfusion is HGB falls below 8) HEMOCRIT 25 PLATELETS 21 (normal is 250-470/cumm) (he gets transfusion is fall below 20) He is on the way uphill now and please pray he goes all the way uphill to complete recovery. Nancy aka Elegance (Steven's grandmother)

Tue, 05 Nov 1996

 He had his LAST (we hope) round of chemotherapy about 1 1/2 weeks ago. Since then his blood count has been falling (expected) and he had to have an infusion of platelets this week. His WBC are only .6 so he is very susceptible to infection right now. His older brother is staying with me as he has a sore throat we don't beleive Steven should be exposed to now. The Chemotherapy will probably hit at the end of this week and when that happens, he will run a fever. Seizures from the fever will be a possibity and he we most likely have to go back to the hospital for a while. We pray he doesn't get an infection as he has very little White Blood Cells to fight one. This chemo is one of the most difficult and we are really nervous about it. It is suppose to take 6 weeks to recover from it. I will update again this weekend. Nancy aka Elegance (Steven's grandmother)

Fri, 25 Oct 1996

 Steven is doing good, he is almost finished with his LAST chemo and is going home most likely tomorrow. His HBG is 9, so they may give him a transfusion as a precautionary thing before he goes home. He has a headache and intermittent nausea which will probably go away when they stop his chemo. Please keep praying for total recovery from his AMOL Leukemia. Thanks! Elegance (Steven's grandma)

Tue, 22 Oct 1996

 Steven is doing ok, he is pale and tired and when I ask him how he felt he said "nauseaous". Big ole word for a 4 year old. He had an injection of chemo in his back and got two beatleborgs presents afterwords. They didn't do a bone marrow aspiration or spinal tap, that will be in about 8 weeks. I wasn't in the room when he had his injection , but he didn't seem to do to bad. He did throw up in there. They take him to the treatment room so his room always feels safe to him. Otherwise he is doing ok. I brought him Macdonalds pancakes and he wanted to eat them just as I left. Elegance (Steven's grandma)

Mon, 21 Oct 1996

 Steven was admitted to the hospital for his last round of Chemo. He is doing fine right now, and his blood count today was good. We expect him to be in the hospital until late Friday or Saturday. This is an especially hard hitting chemotherapy regime and he swelled up like a blow fish last time he got it and had alot of problems with nausea. After he goes home, about 2 weeks later (almost to the day) the Chemotherapy hits, and that is the part we are dreading. His blood count will plumment leaving him susceptible to infection and the chemotherapy side-affects will also hit. This is hopefully his very last chemo. It will take 6 weeks to recover from and so he may even have hair for Christmas! Please continue to pray for complete recovery from the Leukemia. I will send another update tomorrow night. Elegance (Steven's Grandma)

Wed, 09 Oct 1996

 Steven is home now! His platlets are only 13 but the rest of his blood count is showing that he is beginning to recover from the last round of chemotherapy. He doesn't have a fever and seems to me to be doing really good. He came over and played at my house today and had so much energy it was hard to slow him down. Nancy (Grandma)

Tue, 08 Oct 1996

 Steven's doctor was just in and said that he was doing fine. No fever since midnight last night. If that keeps up, he will get to go home tomorrow. The rash was not an allergy it was called "red-man's syndrome" from the antibiotic. The lump in IV line is nothing to worry about. So all is well. He is doing much better today. grandma

Mon, 07 Oct 1996

 Steven started to run a fever, 101.8 this afternoon. ( It was an expected side effect of the chemotherapy). Trev took him to the clinic and thought he was having small seizures there. The doctors upped his phenobarbital in case, and he hasn't had anymore since then. He was admitted to the hospital and started on antibiotics and benadryl. His WBC's are .8 and his platlets are 30. He has no segs and bands. So his blood count is also dropping. Trev is worn out and says he seems to be fair right now and sleeping. Please keep up your prayers for total recovery from his Leukemia. Nancy aka Elegance (grandma)

Sat, 05 Oct 1996

 I called Jen and let you know Steven went into the hospital today to have a blood transfusion and platelets. His platelets were about 11? and his HBG was 7 . They gave him the transfusions and sent him home about 10 tonight and he is doing fine. Love, mom

Fri, 04 Oct 1996

Steven is holding his own. He is in a good mood the last two weeks when I have been over there and it has been heartwarming to see him feeling better. This coming Sunday will be two weeks since he finished his last chemo and his counts are falling still but no fever or infection.(knock on wood)...His platlets were 18 wednesday, and his HBG is 8.9 so we expect he will get transfusions of both tomorrow when he goes to the outpatient clinic. Today we made candy apples and melted chocolate candy in the crockpot and poured it into molds. Everyone had a really good time. Mom

Mon, 30 Sep 1996

Hi! I saw your homepage on Steven and it is really great...thanks for all you are doing. You are very special. Steven went into emergency room tonight, as Trev said one of those plastic squeezie drink bottles made his lip bleed and it wouldn't stop. He was also bruising alot and she knew his platlets had dropped. His platlets yesterday were 32 and tonight they were 1. So they admitted him to the hospital, but just to give him a platlet transfusion. He has had that and is back home now. His other blood counts are falling also, so they beleive he may need readmitted in a day or two as the chemo is hitting. He is still feeling really good though and was hoping all over wound up excited. He doesn't have a fever. Here is his blood count... FRIDAY: WBC 1.4 TODAY: .9 FRIDAY: HGB TODAY: 8.9 PLATLETS 32 TODAY: 1 SEGS 19 TODAY: 9 BAND 0 TODAY: 1 He is doing fine at this time, except his blood count. I will keep you updated. Nancy aka Elegance.

Sat, 28 Sep 1996

Hi Honey, I just thought I'd let you know how things are going with Steven. He went for checkup yesterday, and his blood count is still good. He is doing really well and having fun playing hard with his brothers at home. He does get bored during day when Doug is at school, so grandma (me) comes over sometimes and does crafts and plays nintendo with him. He has been in a really good mood the last 2 or 3 weeks. We expect the chemo to hit him next week, and he generally reacts with high fever and hospitalization...so we are really dreading that and I know you are too. Now we know what is coming and it is harder. He has one more round of chemo, an especially difficult one, after this and should be totally done and have his blood counts restored to normal by Christmas. He is so cute, his has these ant(bug) stickers that he said was his "ant" marina. And knew the pun. He also said that he wasn't allowed to watch goosebumps as it has an "over 4 years " rating. He is allowed, he is afraid of the show. His latest love is beetleborg, a spin off of the powerrangers. I have the black, blue, and green ranger..but can't find the red one. I also got the beetle bonder and the blue stinger car. They are Christmas presents for him. Is Timmy into anything special like that? For christmas ideas. Love, mom

Thu, 19 Sep 1996

Steven is doing really well..He is scateboarding down the hall on his IV pole. He played outside his room last night with another little boy till 11 pm playing castle. The only way you can tell he is on his second day of chemo is he is losing his appetite some. The audiologist also said that he has a hearing loss in his left ear they hope is temporary. Please keep up your prayers for his complete and total healing from his AML Leukemia. 21kw and Elegance

Tue, 17 Sep 1996

 Steven is back in the hospital. He is doing really good, his blood count was great today so they admitted him for his next round of chemo. He is in room 3009. Steven discovered juicy fruit gum today and loved it so much he put 4 pieces in his mouth at once. He played with other kids on the ward and made crafts in the play room. He also rode on his IV pole up and down the hallway. Nancy aka Elegance and 21kw/aka j

Wed, 04 Sep 1996

 The little giggle box feels much better and is going home tomorrow. He hasn't had a temperature in two days or so. His platlets and RBC are still low so they gave him a transfusion today. He is allowed out of his room now and goes to the adolescent day room to play sega game gear (power rangers of course.) He said he wants to go home and NEVER come back into the hospital. Nancy aka Elegance (Grandmother of Steven)

Thu, 29 Aug 1996

 Here is the latest on Steven. His Echocardiogram to check for Mitral valve infection came back negative. That is great news. Also his Blood cultures are starting to come back negative too so the infection is resolving. His blood count is recovering now from the last bout of chemo and here are the results so you can see the difference from yesterday and today. 8/28/96 Wednesday 8/29/96 Thursday Normal range WBC 0.8 /cumm 1.2 cumm 3.6-11.8 SEGS NONE 1 ? BANDS NONE 2 ? PLATLETS 44 29 /cumm 250-470 Trev said platlets are the last to recover and as you can see his got worse (they do that alot and he needs platlet transfusions. The doctor said he will probably go home in a week or so. He will have an Iv pump at home for Iv antibiotics for a few weeks. I think it is a small one they wear on their waist and it pumps in the antibiotic every so many hours. Trevi said that he is still a little grumpy and he is bored and wants to go home. Nancy aka Elegance (Steven's grandma)

Thu, 29 Aug 1996

 Steven is doing alot better. His fever is between normal and 101.5. Mostly you can see how much better he is as he is playing some and happier. He still has stomach pain a little and a stiff neck but instead of growling at me he actually curled up in my arms and let me read to him. He has a little toy "Jill the play lady" gave him to bang on to releive his frustrations at being back in the hospital. He also was teasing me today and ordered a special delivery happy meal from MacDonalds. (grandma to deliver, of course.) Then when it got there he said he just wanted it for the toy. LOL. We still haven't heard the results of his Echocardiogram. The specialist he saw was checking for Mitral valve infection..he feels he has it. It will only affect when he grows up he will need antibiotic before he has dental work..the treatment is the same. Nancy aka Elegance (grandma)

Sun, 25 Aug 1996

 Here is the update on Steven today. He looks much better and is awake and talking today. He feels miserable he says and his ear and tummy ache. He is complaining of alot of pain in his right ear and the doctor said it was his left ear that is very infected. The right ear pain may be from his neck, where his hickman line runs through. They now strongly suspect what caused his seizures yesterday was he has meningitis. They also suspect an infection of his hickman line. The blood cultures came back positive for the same strep that caused his pneumonia last time. That is why they think maybe it is the hickman line infection. The 24 hour preliminary spinal tap was negative but they said that it may be because it hasn't had time to grow bacteria and it may be because he was already on an antibiotic when it was drawn. His sodium level also fell so they are limiting his fluids. They said low sodium level will increase seizure possiblity but that his sodium level was ok yesterday when he was seizing so it wasn't the cause of it yesterday. They have him on phenobarbital and it is stopping the seizures. He still has his temperature of about 103. The doctor said that he will feel really rotten for about 2 days and he does. But at least today he is alert enough to complain about it. His neck is stiff and his eyes are sensitive and he said he had a headache. Here is the update on Steven today. He looks much better and is awake and talking today. He feels miserable he says and his ear and tummy ache. He is complaining of alot of pain in his right ear and the doctor said it was his left ear that is very infected. The right ear pain may be from his neck, where his hickman line runs through. They now strongly suspect what caused his seizures yesterday was he has meningitis. They also suspect an infection of his hickman line. The blood cultures came back positive for the same strep that caused his pneumonia last time. That is why they think maybe it is the hickman line infection. The 24 hour preliminary spinal tap was negative but they said that it may be because it hasn't had time to grow bacteria and it may be because he was already on an antibiotic when it was drawn. His sodium level also fell so they are limiting his fluids. They said low sodium level will increase seizure possiblity but that his sodium level was ok yesterday when he was seizing so it wasn't the cause of it yesterday. They have him on phenobarbital and it is stopping the seizures. He still has his temperature of about 103. The doctor said that he will feel really rotten for about 2 days and he does. But at least today he is alert enough to complain about it. His neck is stiff and his eyes are sensitive and he said he had a headache. Trev is really upset about the seizures as he has the second one while she was holding him in her arms. I was there too and it was a very scarey thing to see someone you love go thru. But today he looks a whole lot better. Nancy aka Elegance.

Sat, 24 Aug 1996

 Steven had Catscan and EEG and Spinal tap today and all were negative. The phenobarb seems to be helping and he has had no more seizures. He has been sleeping and comfortable and his temperature is the same (about 103.5) Nancy aka Elegance

Sat, 24 Aug 1996

 ..another update on Steven. He went to see the doctor yesterday and had his blood count done in the afternoon. He felt ok, just a little crabby. The blood count was down some, but expected. Last night about 11:oopm he started to run a fever, so Trev took him in to doctor. They admitted him because his bloodcount had dropped signifantly since he was seen that afternoon. He ran fever during the night about 103 and this morning about 9:30 am he had a seizure. They called in a neurological consult and did a lumbar puncture to rule out Central Nervous system infection. They are hoping that the fever is causing the seizure instead on Central Nervous system infection. When they picked him up to take him in the treatment room to do the lumbar puncture, he had another seizure. (grand mal) After the lumbar puncture, they started him on IV phenobarbital and that should control the seizures. They are in Cook Childrens hospital room 3012. Nancy aka/Elegance

Sat, 24 Aug 1996

 Steven went back to the hospital last night...His temp went up to 103.6 F. This morning he had a small seisure. The Dr. was concerned and has ordered a spinal tap to search for infection. He will also have an EEG. His temp is still around 102. more later Stevie's Dad Danny

Fri, 02 Aug 1996

 Hi ya' all, Steven is much much better. His ANC count is 408!!!That means he is out of protective isolation, and got to see and play with his brothers. They walked down to a playroom, and a man came in and sang songs and played guitar to them and the other kids. They really loved it, Mikey (Steven's 1 yr old brother) danced and clapped in the front of a half circle of kids. Douglas, (Steven's 9 yr old brother) played carefully and so protectively of his brother. Steven hadn't been out of his room in 5 or 6 weeks so he was very shy and looked very little. He sat on a little chair shaking a noisemaker very shyly, hiding under the rim of a spiderman a baseball hat. As the songs went on, the noisemaker got higher and he shook it a little harder. He may get to go home for a week on Monday, although that is tenative. He will have to come back after a week for 5 more days of chemotherapy. Keep on praying for Complete recovery. Elegance/Aka Mom
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