I dont know what to title......
I finally have a moment to sit down and collect my thoughts on the event that have changed my life in the last week. As most of you know Ian started running a fever Sunday morning. He still had it Monday so off to the doctors we went. They couldn’t find anything wrong with him but said if his fever couldn’t be controlled to take him to the er so they could do blood work. Fast forward Tuesday morning and he has a 103 fever. Tylenol didn’t touch it and Motrin only lowered it slightly. During the time he had his fever he had also been having crying spells. He would cry for no reason for over an hour and nothing could calm him down. At about 2pm an hour into one of these episodes I woke up DH (he just go home at 6am from a 16 hour flight) and told him I though we should take him to the ER. I thought he had a urinary track infection. I couldn’t think of anything else. We get to the ER and they see us right away. The doctor says she wants to take some blood do an u/s and take a urine sample. She was thinking possibly a blockage/kink in the intestine. The u/s came back fine and so did his urine. She cam back in and said everything looked good. His blood count was a little low but he must just have a virus. She said she called in a consult to review his blood work but we could go home and just to have his blood rechecked in a week. Then her phone rang and she told me that was the consult and she would be right back.
She walked back in the room and that is when my world stopped and my heart broke. She said she was transferring him to CHildrens hospital and he needed a bone marrow biopsy. She said an ambulance was on its way. I asked he needed a biopsy and she said it could be leukemia. ( I am crying writing this) I’m pretty sure my heart stopped beating . Its like I heard her but couldn’t understand what she was saying. Dh went into total denial and I just got numb. The ambulance came and I rode with him. During that 45 minute ride I was able to gather my thoughts a little and had many questions. In all the confusion I sent DH to the wrong hospital so it took him forever to get to us. I was able to ask just how low his numbers were and that was when we first heard of ACN. His ACN should have been at 1500. His was 725. His other counts were low along with his platelets. I still don’t know all the terms. All I know was they were saying so and so is lower than we want to see it and so is so and so. We had wonderful nurses and doctors. His doctor turned out to be the head of the oncology department. I didn’t post this on FB anywhere but we were on the cancer ward. The children’s cancer ward. I don’t know if you have ever been on one but let me tell you it is a heart breaking place to be. We were surrounded by very sick little children and mine was one of them. Most of them were going through Chemo and had lost there hair and were swollen. I kept thinking this cant happen to my child. This doesn’t happen to people like us. Then it hit me that every single one of these parents have been were I was at and they all thought the same thing. I couldn’t even think most of the time because I would start crying. I had to keep myself together for Ian. I had to be strong and not show him I was scared. That first night I got no sleep. Ian surprisingly did well and he slept an ok bit. They came in at about 6 am to do a TON of blood work. It took 3 different people 4 different stick to finally get all the blood they needed. Ian is a strong little guy. It took 5 people holding him down. That was horrific in its own. DH was gone during all this as he was picking his parents up from the airport. I knew it had to be done but I wish it just didn’t scare him so much. At this point the had been fever free for about 16 hours. He was acting a little more normal and I was very very confidant that his numbers would go up and the bone marrow biopsy would be canceled. A few hours later we got horrible news and I was again devastated and more scared than I thought I could be. His number dropped to 310. Along with everything else. I was so scared. He was acting better and still getting sicker. His immune system was almost completely wiped out. They have a play room on the floor but he was to sick to play with the sick kids. They didn’t know what he had so he couldn’t play with the other kids. It was so sad. His biopsy was scheduled for noon. He had not been able to eat from midnight. He actually took a decent nap and slept for about 2 ½ hours. They finally came and got him at 1:30. I held him on the stretcher why the wheeled him down. He was still sleepy and slept the whole ride. We were very lucky and they let me hold him until they put him to sleep. The next part is what finally broke me and cause me to loose it. As they put him to sleep I held him. But he didn’t close his eyes. I laid him down on the bed and he just laid there with his eyes glassed over and fixed on the ceiling. I went to hug and kiss him and he made a sound. It freaked me out and I told the doctors he was still awake. They said he wasn’t but it scared me. He looked to sad laying there. HE looked dead. As soon as we walked out of the room and i collapsed on DH and sobbed. HE had not been out of my sight since we were at the first hospital and now he was having a bone marrow surgery and I was freaked out. About 45 minutes later the doctor let us back there and he was still asleep and had his eyes closed. It took about a half our for him to wake up and it was actually pretty funny. It was like he was drunk. I was very worried about his drinking and eating and they brought juice and snacks for him and me. One of the nurses got wind I was pregnant and went into mother mode. She was very sweet. When I asked if he wanted juice he said plllllllllllllllllllllllllllllleeeeeeeeeeeassssssssssssssssssssssssssse. Like he was drunk. When he sat up he was all wobbly and his eyes wouldn’t track. It took a few hours for him to be completely off it. He wanted to walk buy couldn’t. He would stand on one leg and lean all over the place. He was our drunk baby. The doctor came in about 6:30 that night and said they had the preliminary test results back and it was not leukemia. It was like a 20 pound weight was lifted off my chest. He still couldn’t say what it was but it wasn’t leukemia. It could be an infectious disease or some other type of cancer but all these results would take a while to come back. He said we could wait at the hospital or at home since he was fever free at this time for 24 hours. we got home around 8 and we were all in bed before it was dark outside. We all slept like babies that night. My parents flew in Thursday morning and we all just hung out at the house and I ran some errands that needed to be ran. We played with Ian and just enjoyed not being in a hospital. Ian had a doctors apt the next day and they took more blood. His number only increased a small amount. They are now at 490. Still a far way from where they need to be but going up. I think they feel even farther than the 310. I think they even bottomed out. So they are recovering. His platelet count is at 120 and should be at 150. She gave us the all clear to resume life as normal and come back in a week for more blood work. They think he had a very nasty virus that wiped his immune system out. HE at one point had a very very very light almost not noticeable rash that I think was just his eczema because he had not been bathed with his special wash and lotion. We don’t know if he has a compromised immune system or not. If there is a underlining condition. Hopefully next week we will have ALL the results from the biopsy.
I am amazed and blessed and lucky and overwhelmed by the amount of support that poured out from everyone. We have friends, family, strangers and all you DS sisters praying for him and I truly think they worked. His recovery was so fast. The out pouring of love and rallying of support we got really held us together and when I couldn’t pray everyone else did. I am positive there were people praying for him every hour on the hour. You al held me up and together. When it would be the middle of the night I could pick up my phone and see that I had 20 messages from you guys on FB offering support and prayers. I wish I could describe how much that helped me. Knowing I was not completely alone and that other people cared about my family meant more than any of you will ever know. I feel so close to so many of you now and am so blessed to have you in my life. I pray none of you ever have to go through anything like this ever.
This experience has humbled us and taught us so much. Not take anything or any day for granted. When I think of what could have happened I cant help but start crying. I look at him today and for the most part he is his normal self and yet I know he is still sick with his low numbers and I just cry. I love him so much and you would never know what he was fighting a few days ago. I love him so much and more than I thought possible. The thought of loosing him is still very fresh. As soon as the mentioned leukemia I automatically thought, I’m pregnant I can fix him. Storing the umbilical cord blood was never something we thought we would do but after this we are doing it. Just knowing we had that optioned placed a little comfort with me. We had amazing doctors and nurses and I will be writing a letter expressing my gratitude and appreciation for making a traumatic experience not as horrible as it could been.
Again thank you all so so much. Words truly can express the love I have in my heart for all of you.
She walked back in the room and that is when my world stopped and my heart broke. She said she was transferring him to CHildrens hospital and he needed a bone marrow biopsy. She said an ambulance was on its way. I asked he needed a biopsy and she said it could be leukemia. ( I am crying writing this) I’m pretty sure my heart stopped beating . Its like I heard her but couldn’t understand what she was saying. Dh went into total denial and I just got numb. The ambulance came and I rode with him. During that 45 minute ride I was able to gather my thoughts a little and had many questions. In all the confusion I sent DH to the wrong hospital so it took him forever to get to us. I was able to ask just how low his numbers were and that was when we first heard of ACN. His ACN should have been at 1500. His was 725. His other counts were low along with his platelets. I still don’t know all the terms. All I know was they were saying so and so is lower than we want to see it and so is so and so. We had wonderful nurses and doctors. His doctor turned out to be the head of the oncology department. I didn’t post this on FB anywhere but we were on the cancer ward. The children’s cancer ward. I don’t know if you have ever been on one but let me tell you it is a heart breaking place to be. We were surrounded by very sick little children and mine was one of them. Most of them were going through Chemo and had lost there hair and were swollen. I kept thinking this cant happen to my child. This doesn’t happen to people like us. Then it hit me that every single one of these parents have been were I was at and they all thought the same thing. I couldn’t even think most of the time because I would start crying. I had to keep myself together for Ian. I had to be strong and not show him I was scared. That first night I got no sleep. Ian surprisingly did well and he slept an ok bit. They came in at about 6 am to do a TON of blood work. It took 3 different people 4 different stick to finally get all the blood they needed. Ian is a strong little guy. It took 5 people holding him down. That was horrific in its own. DH was gone during all this as he was picking his parents up from the airport. I knew it had to be done but I wish it just didn’t scare him so much. At this point the had been fever free for about 16 hours. He was acting a little more normal and I was very very confidant that his numbers would go up and the bone marrow biopsy would be canceled. A few hours later we got horrible news and I was again devastated and more scared than I thought I could be. His number dropped to 310. Along with everything else. I was so scared. He was acting better and still getting sicker. His immune system was almost completely wiped out. They have a play room on the floor but he was to sick to play with the sick kids. They didn’t know what he had so he couldn’t play with the other kids. It was so sad. His biopsy was scheduled for noon. He had not been able to eat from midnight. He actually took a decent nap and slept for about 2 ½ hours. They finally came and got him at 1:30. I held him on the stretcher why the wheeled him down. He was still sleepy and slept the whole ride. We were very lucky and they let me hold him until they put him to sleep. The next part is what finally broke me and cause me to loose it. As they put him to sleep I held him. But he didn’t close his eyes. I laid him down on the bed and he just laid there with his eyes glassed over and fixed on the ceiling. I went to hug and kiss him and he made a sound. It freaked me out and I told the doctors he was still awake. They said he wasn’t but it scared me. He looked to sad laying there. HE looked dead. As soon as we walked out of the room and i collapsed on DH and sobbed. HE had not been out of my sight since we were at the first hospital and now he was having a bone marrow surgery and I was freaked out. About 45 minutes later the doctor let us back there and he was still asleep and had his eyes closed. It took about a half our for him to wake up and it was actually pretty funny. It was like he was drunk. I was very worried about his drinking and eating and they brought juice and snacks for him and me. One of the nurses got wind I was pregnant and went into mother mode. She was very sweet. When I asked if he wanted juice he said plllllllllllllllllllllllllllllleeeeeeeeeeeassssssssssssssssssssssssssse. Like he was drunk. When he sat up he was all wobbly and his eyes wouldn’t track. It took a few hours for him to be completely off it. He wanted to walk buy couldn’t. He would stand on one leg and lean all over the place. He was our drunk baby. The doctor came in about 6:30 that night and said they had the preliminary test results back and it was not leukemia. It was like a 20 pound weight was lifted off my chest. He still couldn’t say what it was but it wasn’t leukemia. It could be an infectious disease or some other type of cancer but all these results would take a while to come back. He said we could wait at the hospital or at home since he was fever free at this time for 24 hours. we got home around 8 and we were all in bed before it was dark outside. We all slept like babies that night. My parents flew in Thursday morning and we all just hung out at the house and I ran some errands that needed to be ran. We played with Ian and just enjoyed not being in a hospital. Ian had a doctors apt the next day and they took more blood. His number only increased a small amount. They are now at 490. Still a far way from where they need to be but going up. I think they feel even farther than the 310. I think they even bottomed out. So they are recovering. His platelet count is at 120 and should be at 150. She gave us the all clear to resume life as normal and come back in a week for more blood work. They think he had a very nasty virus that wiped his immune system out. HE at one point had a very very very light almost not noticeable rash that I think was just his eczema because he had not been bathed with his special wash and lotion. We don’t know if he has a compromised immune system or not. If there is a underlining condition. Hopefully next week we will have ALL the results from the biopsy.
I am amazed and blessed and lucky and overwhelmed by the amount of support that poured out from everyone. We have friends, family, strangers and all you DS sisters praying for him and I truly think they worked. His recovery was so fast. The out pouring of love and rallying of support we got really held us together and when I couldn’t pray everyone else did. I am positive there were people praying for him every hour on the hour. You al held me up and together. When it would be the middle of the night I could pick up my phone and see that I had 20 messages from you guys on FB offering support and prayers. I wish I could describe how much that helped me. Knowing I was not completely alone and that other people cared about my family meant more than any of you will ever know. I feel so close to so many of you now and am so blessed to have you in my life. I pray none of you ever have to go through anything like this ever.
This experience has humbled us and taught us so much. Not take anything or any day for granted. When I think of what could have happened I cant help but start crying. I look at him today and for the most part he is his normal self and yet I know he is still sick with his low numbers and I just cry. I love him so much and you would never know what he was fighting a few days ago. I love him so much and more than I thought possible. The thought of loosing him is still very fresh. As soon as the mentioned leukemia I automatically thought, I’m pregnant I can fix him. Storing the umbilical cord blood was never something we thought we would do but after this we are doing it. Just knowing we had that optioned placed a little comfort with me. We had amazing doctors and nurses and I will be writing a letter expressing my gratitude and appreciation for making a traumatic experience not as horrible as it could been.
Again thank you all so so much. Words truly can express the love I have in my heart for all of you.
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