Our spinal tap results came back negative of cancer! This means he will have less intense treatment.
We are on trial. As parents, we have to get Jake to take his chemo pills in order for us to go home. Keep in mind that he is only 21 months old. Mark and I tried to give him liquid form, but Jake refuses since it tastes so bad. We crushed up the pills and gave it to him in chocolate pudding, vanilla pudding, apple pie and m&m's. He is starting to not trust his food so we stopped that.
We finally sat down with him and told him he had to take his pills in order for us to go home. He took the pill and put it in his mouth and spit it back out! I love him for trying. We are force feeding him the pills now and holding his nose with a shot of water. It isn't what we want to do but works. I hope he gets used to it.
Jake is taking the chemo very well so far. They said that the steroids will make him crazy, moody and mean. We're ready.
Thursday, October 30, 2008
Wednesday, October 29, 2008
Leukemia
This post is very difficult to write. It was unthinkable 5 days ago when Jake was initially diagnosed with Leukemia. Now that we have a good oncology doctor, a sound plan for treatment (hopefully cure) and hope, I am able to share the story with all of you. I've made Jake's blog post private for now. I will share updates on the blog to keep everyone updated. If there are others who want access, please let me know. So here it goes...
We took Jake to the doctor on 10/24 because he refused to get out of bed that morning and he was getting worse as far as wanting to stand on his legs. The pedi saw red spots on his face, petechiae. This was a warning sign that he was anemic. She ordered blood tests which showed his platelet, hemoglobin and other blood health indicators being off. We also took x-rays of his previously broken leg an ultrasound of his hips. His fracture was healing but he had fluid build up on his hips. She suspected he may have an infection causing him pain. We were to call if the petechiae showed up below the waist.
Friday night, we started a therapy of Tylenol to keep the inflammation down. We got sushi and tofu soup (his favorite). He acted crazy and had a lot of fun that night. We thought the Tylenol was finally helping him with his pain. We thought once the virus cleared up, he would be good again.
The next day, while he was taking a nap, I saw petechiae on his legs. The pedi told us to take him to the emergency room. She also told us that we may have to stay overnight. Mark and I were very surprised. We were at Children's Mercy for 4 hours while they ran tests. We had no idea why it was taking so long. We were ready to walk out.
We knew it was bad when 2 doctors came in with somber looks. They told us that the lab saw blasts that were indicutive of cancer. They are suspecting Leukemia but will have to do further test to find out what kind of cancer Jake is carrying.
Mark reacted with disblief and wanted to take Jake home to get a second opinion on Monday with the "A" team doctors. I wanted them to be desperately wrong. They put us in the bone marrow transplant wing of the hospital because they had a full house. After we put Jake to bed in his hospital bed, Mark and I sobbed uncontrollably.
Sunday morning, we woke with broken hearts and unbelievable sadness for our Son. We were supposed to take Jake to "Boo at the Zoo." I felt so deprived for Jake. He should be out at the Zoo running, having fun and begging for candy. He should not be in the hospital with cancer. I asked God to give me the cancer. We met our interim oncologist Dr. Dean. She had a fellowship at the hospital. She tried to comfort us with hope.
Monday morning, we conducted a bone marrow biopsy. I can never forget the look Jake gave me when they gave him the sedation drug (Versed/Fentenyl) before the procedure. It was a look of paralyzed plea for rescue and artificial happiness. We read him "Baby Bear Baby Bear what do you see" while they pushed a needle the size of a pen head into his hip to extract bone marrow.
We talked to Jake's oncologist, Dr. Shore, Monday afternoon. He said that 95% of childhood Leukemia go into remission after the first treatment and 78% go into total remission (cure). We were hopeful. The doctor was factual yet likeable.
Monday night, Dr. Dean told us the bone marrow results. Jake's cancer was Acute Lymphocytic Leukemia (ALL). His cancer also had its own DNA pattern which will allow them to target the cancer more closely. This is all good news.
Tuesday night Jake got his port. A port is a surgically inserted tube that allows IV delivery of drugs. They can also take blood from it. This was good. Jake's veins were collapsing and they had to stick him numerous times for new IV lines and blood samples. He was supposed to go in the morning but didn't go into OR until 8 PM. He had not eaten or had liquids for 20 hours. Tuesday was our 13 year wedding anniversary. Anne and our friends brought dinner from Morton's of Chicago to the hospital. We sat in the OR waiting room eating our dinner waiting for Jake. Mark and I didn't eat or drink along with Jake. The dinner was absolutely wonderful. It didn't hurt that was from Morton's either. We got a little taste of the "good life."
Wednesday, they did an LP. They tapped into Jake's spine to get spinal fluid to check for cancer. Although he received sedation cocktail of Versed and Fentenyl, he cried. He was so tired of painful procedures. Jake also received his first rounds of chemo today. He is starting to get his color back from the blood transfusion. I didn't realize how sick he was until I saw how much better he was today. We have a rough road ahead of us with 6 months of intensive therapy and 2.5 years of maintenance. Mark and I are hoping with all of our might that he is cured and we can see Jake's children.
We took Jake to the doctor on 10/24 because he refused to get out of bed that morning and he was getting worse as far as wanting to stand on his legs. The pedi saw red spots on his face, petechiae. This was a warning sign that he was anemic. She ordered blood tests which showed his platelet, hemoglobin and other blood health indicators being off. We also took x-rays of his previously broken leg an ultrasound of his hips. His fracture was healing but he had fluid build up on his hips. She suspected he may have an infection causing him pain. We were to call if the petechiae showed up below the waist.
Friday night, we started a therapy of Tylenol to keep the inflammation down. We got sushi and tofu soup (his favorite). He acted crazy and had a lot of fun that night. We thought the Tylenol was finally helping him with his pain. We thought once the virus cleared up, he would be good again.
The next day, while he was taking a nap, I saw petechiae on his legs. The pedi told us to take him to the emergency room. She also told us that we may have to stay overnight. Mark and I were very surprised. We were at Children's Mercy for 4 hours while they ran tests. We had no idea why it was taking so long. We were ready to walk out.
We knew it was bad when 2 doctors came in with somber looks. They told us that the lab saw blasts that were indicutive of cancer. They are suspecting Leukemia but will have to do further test to find out what kind of cancer Jake is carrying.
Mark reacted with disblief and wanted to take Jake home to get a second opinion on Monday with the "A" team doctors. I wanted them to be desperately wrong. They put us in the bone marrow transplant wing of the hospital because they had a full house. After we put Jake to bed in his hospital bed, Mark and I sobbed uncontrollably.
Sunday morning, we woke with broken hearts and unbelievable sadness for our Son. We were supposed to take Jake to "Boo at the Zoo." I felt so deprived for Jake. He should be out at the Zoo running, having fun and begging for candy. He should not be in the hospital with cancer. I asked God to give me the cancer. We met our interim oncologist Dr. Dean. She had a fellowship at the hospital. She tried to comfort us with hope.
Monday morning, we conducted a bone marrow biopsy. I can never forget the look Jake gave me when they gave him the sedation drug (Versed/Fentenyl) before the procedure. It was a look of paralyzed plea for rescue and artificial happiness. We read him "Baby Bear Baby Bear what do you see" while they pushed a needle the size of a pen head into his hip to extract bone marrow.
We talked to Jake's oncologist, Dr. Shore, Monday afternoon. He said that 95% of childhood Leukemia go into remission after the first treatment and 78% go into total remission (cure). We were hopeful. The doctor was factual yet likeable.
Monday night, Dr. Dean told us the bone marrow results. Jake's cancer was Acute Lymphocytic Leukemia (ALL). His cancer also had its own DNA pattern which will allow them to target the cancer more closely. This is all good news.
Tuesday night Jake got his port. A port is a surgically inserted tube that allows IV delivery of drugs. They can also take blood from it. This was good. Jake's veins were collapsing and they had to stick him numerous times for new IV lines and blood samples. He was supposed to go in the morning but didn't go into OR until 8 PM. He had not eaten or had liquids for 20 hours. Tuesday was our 13 year wedding anniversary. Anne and our friends brought dinner from Morton's of Chicago to the hospital. We sat in the OR waiting room eating our dinner waiting for Jake. Mark and I didn't eat or drink along with Jake. The dinner was absolutely wonderful. It didn't hurt that was from Morton's either. We got a little taste of the "good life."
Wednesday, they did an LP. They tapped into Jake's spine to get spinal fluid to check for cancer. Although he received sedation cocktail of Versed and Fentenyl, he cried. He was so tired of painful procedures. Jake also received his first rounds of chemo today. He is starting to get his color back from the blood transfusion. I didn't realize how sick he was until I saw how much better he was today. We have a rough road ahead of us with 6 months of intensive therapy and 2.5 years of maintenance. Mark and I are hoping with all of our might that he is cured and we can see Jake's children.
Thursday, October 9, 2008
The cast is off
We got the cast off today after two weeks. Jake was not happy to be back at the hospital. As soon as we drove up to the hospital, he said "uh oh Doctor." His bones have healed and his Salter-Harris fracture Type II will need to be checked every 6 months to ensure the bone healing does not seal up the "growth" plate. Another thing I'll be worrying about.
We kept the cast. I joked with Mark that I was going to plant something in it. He is still hesitant to walk. It can take up to 3 weeks before he is back 100%. Hopefull it's sooner. He is too heavy to carry around.
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