Well I was reminded last night the point of this blog, team Lucy page, my book, and all of the activities I participate in. A child whom we spent time with at RMH and whose grandma I speak to weekly via our cancer mom group, died suddenly yesterday morning. He had 6 months left of treatment and had leukemia. He did not die because the cancer came back, he died of complications due to the chemotherapy our kids take. He went in the night before with fever and vomiting thought to be stomach flu, and died of septic shock the next morning (blood infection). See his little body didn't have the strength or immune system to fight whatever was going on in his body. The point of chemo In leukemia patients is to make sure you keep the immune system as low as you possibly can while trying to not let the child become neutropenic. Since leukemia is a cancer of the blood, it's imperative to maintain this delicate balance. This is why Lucy wears a mask and we are always worried over something so simple as a cold. This is why we struggled with sending her to school. This is why we stay cooped up in the winter months at home. And yesterday, I was reminded that we need to remember why we do these things.
Which leads directly into my fears because of what happened last week. Saturday morning (October 13), jack started running a fever and had horrible congestion. He said his throat hurt. We waited it out a few days and his fever finally broke Monday. We noticed before we put him to bed, he had a horrible rash at the bottoms of his legs. We thought it was consistent with a virus, but decided to take him to the doc the next day just to be sure. Well it was also a Memphis trip. So now one of us had to stay home with him and the other do the long trek alone to Memphis for Lucy's spinal. It was decided I would do Memphis because Zach was having complications from his surgery, which I'll get to in a minute, and needed to see his surgeon. Well that scenario changed Monday night when both jack and I were up all night vomiting. The next morning jack was having horrible stomach pains and I was having extreme body aches. So Zach took jack to the doctor where they said it was just a virus and did a flu swab and rapid strep test just in case. They told us if the rash spread to bring him back. So since I was still throwing up, Zach and Lucy left for Memphis. Jack and I camped out in bed all day. He was complaining of horrible stomach pains and was actually crying and yelling over them. And I noticed his rash was spreading all the way up his legs and around his mouth. So after 3 hours of screaming, I took him to the ER fearing an appendicitis.
What a lovely trip. I was still sick and in my pjs and here we sat for an hour and half in the waiting room while he cried. Finally the doc came in and felt his stomach and looked at his rash ad said it was just a virus and would go away in time. I asked about the horrible pain, and he dismissed me. So they proceeded to give him zofran and a cocktail of Meds to help with the cramping. He had to drink this huge liquid amount and of course he couldn't. He threw it up immediately. I asked "what now?" as he's wailing in pain. They told me to give him Pepcid and feed him the brat diet and it would go away and sent us home.
Of course neither of us slept that night. He was up in so much pain, and I was so worried. I tried every home remedy I could think of. The next day wasn't much better. He could go maybe an hour or so with Tylenol and be screaming again. So I called our family doctor. He asked why no blood work was done the night before. So he told me to go to the ER for a complete work up for an apendicitis. So off we went again.
I explained what was going on and told them what our doc said and they put us right in a room. About 5 minutes later the same nurse we had the night before came in and said "you're back again?" I explained what had happened and what the family doc said. She said "well, he's not having an apendicitis. I can tell, he just needs to poop" mind you Jack is screaming in pain. She seemed slightly irritated with me when I asked about pain Meds. Jack said he was cold and asked her for a blanket. She said no. She said if you're running a fever we don't want to make it worse. I explained he didn't have one upon admittance. And reminded her that last night when we were there and he did have a fever, she gave him 3 heated blankets. She said "well I'll get sheet". So we waited. And waited. I rang the nurse bell asking about blood work, I rang the nurse bell asking about pain Meds as my son is laying there screaming and crying. I reminded her he told her he was at a 10 for pain. An hour and a half later, she comes back with an IV. She takes his blood and hooks him up to fluids. I asked about pain Meds, she said the doctor would have to order those and mostly likely since he just needs to poop none will be given. She also said they wanted confirmation from our family doc about the apendicitis, and pointed out she was sure he needed to poop again. Again she leaves. Finally about an hour later, she comes back with a drink condition with contrast in it for a ct scan. This was the size of a big gulp and he had to drink half in an hour and a half. I told her there was no possible way he could do that without zofran and pain Meds, reminding her every time he ate or drank previously in the day, he threw up and was in horrendous pain. She said she would check on pain Meds but to start drinking. Well of course one drink and his pain was immediate, so I rang the nurses button again and asked for pain Meds. The nurse comes in and says "he need to drink that now". I finally stopped being polite and my mama bear came out. I told her that he would NOT be taking another drink until we get something for the pain that we asked for over 2 hours ago. She slammed, yes slammed the door and left. 10 minutes later, back with pain Meds.
Within 5 minutes, jack was a different boy. He started drinking the contrast and was finally sitting up and laughing, something I hadn't seen in 4 days. Mind you it's now about 9:30 pm and Zach and Lucy are heading back from their Memphis trip where 12 hours earlier she had been sedated to get a spinal tap. Luckily, jacks kindergarten teacher asked if I wanted her to come up and I said yes!!! Please!! She is so good with both my kids, and she Elle's me to get jack to drink the contrast. As he was drinking it, we had other nurses come in to check on us. They kept saying he wasn't drinking fast enough. I asked one nurse if his CBC had come back and if I could have a copy of his complete panel. She asked if I lived in town, to which I replied yes. She said that they don't like to give copies and for me to request them in the morning from medical records. I told her no thank you that I wanted to see them now. She said she would check and see if it was ok, but probably wouldn't get them. I bluntly told her "no, you will get me a copy of my child's bloodwork it is my right to look at it. She left.
After ringing the nurses button again (I bet they wish they could've taken my button away), I finally got a lab report I was appalled at jacks numbers. His WBC was through the roof indicating infection. His ANC and neutrophils were also abnormally high. Around this time, he finally finished drinking the contrast and we went for a CT. After we came back, around midnight, Zach and Lucy were pulling in from Memphis and he dropped her off and came up. The doctor finally came in for the first time, and he said the CT looked good and his appendix were fine. So we were dealing with a virus and to keep him hydrated. And he was releasing us. Zach asked about pain meds. The doctor said Tylenol and Motrin would work. Zach politely reminded him we had done that for almost 48 hrs yet we landed in the ER again for pain. After several discussion back and forth, he finally gave us a script and sent us packing.
The next day jacks pain was no better and we utilized pain Meds freely. He still wasn't eating, but started drinking. This is Thursday so we are nearing the 7 day mark from when this all started. His family doctor called and said he reviewed the labs and CT and that he had swollen lymph nodes in his abdomen, which was probably causing so much pain, and that he definitely had a virus. He was great, he said "I want you to know it does not look like leukemia, and is not consistent with any symptoms of it; however if he wasn't better by Monday to bring him back.
That's where we sit. That has been our week. And yesterday, jacks rash grew a bit on his face and he was still in pain, but was finally able to eat. So we are taking that as a good sign and sending him back to school today.
Well yesterday I found out that Logan had had the exact same virus and symptoms as jack :( so now I'm freaked Lucy is going to get it and she is on steroids which mask symptoms of illness and actually makes her immune system weaker. So I get to freak out about that for a week or so.
Oh yes, I mentioned Zachs surgery not healing. Unfortunately, he is one in a million (we really have great odds with bad luck) where his incision healed bit left a hole on the outside of his cheek, so instead of salivating inside his mouth, he is doing it outside. Poor guy has saliva running out the side of his face! So he goes back into surgery next week to try and fix it, and if that doesn't work, he has to have the entire gland removed and start all over.
So not to end this post as it started with such devastation and sadness, we did have two positives happen. Lucy's spinal is clear!! Yay!! And we added a new member to our family. Clark W Griswold. Yes, we got a new dog! We rescued him from a shelter. Clark is an 8 lb chiweenie and quite hilarious. Taco
And him are bonding, it's only been a week, but Clark acts as if he's been a part of our family forever.
As I sign off, I ask that you keep all the kids fighting in your heart. Lucy may be in remission, but her fight is still very real and very dangerous as seen with Logan's death. Logan was planning his make a wish trip :(
