Then all the memories came flooding back. It wasn't a dream. It was real.
While we were in seeing the specialist this lady came in asking if Ava wanted a surprise. Then she gave her this bag of princess blocks. And after her blood was drawn she got to pick a surprise out of the treasure chest and she picked the stuffed bunny dog. So she was proud to smile with all her goodies from being so brave at the doctor today.
A real living nightmere.
It started last week. Russell, my husband, pointed out how bad Ava's legs looked. From the knee down they were COVERED in dark purple bruises. I just attributed it to the fact that she just learned to ride a bike. I mean don't all kids have bruising on their legs? Since its been cold she is always wearing pants or leggings so it didn't seem like anything to worry about. On Thursday there was this weird rash on the side of her face, back near her ear. It was red, purple dots. But it wasn't horrible. I just assumed she touched something than itched her face and had a simple allergic reaction. Then over the next 3 days the rash started spreading. It was on her neck, lower back, bum, upper legs. Also I noticed anytime she would slightly get bumped or fall, she would bruise really easily. She had a big blood blister on her lower lip. I asked her what happened because she literally just woke up with it on Saturday. She said she had been biting it. But it was really really bad looking. It looked like she had been punched in the mouth. For the next couple days there would be lots of blood on her pillow and sheets around her head. I thought that was a bit excessive for just a blood blister on her lip. Then Monday I noticed dry blood in and around her nose. I didn't understand why she was bleeding so much. I just figured maybe she had been scratching it or picking at it.
Monday I had to run to the store and she went with a friend to the park with her friends mom watching them. When she got back. She had another blood blister on her top lip and a big scratch/ sore above her lips. It was strange. It was as if the blood was trapped under the skin surface. She told me she fell off her scooter but didn't cry since it hadn't hurt. I checked her body for any other problems from falling. Her knees were all scratched up and she had a deep scratch on her chest. But she was wearing pants and a sweatshirt. How did she get so wounded from just a simple fall? Now my husband and i were getting more worried. Its like her body wasn't healing itself the way it should. LIke there was something wrong with the blood in her body. A blood disease maybe?
I called the doctor Tuesday morning, i left a voicemail for the nurse asking if i should come in or not. I told her about the weird rash Ava had and how easily she was bruising. In the back of my mind i figured it was nothing just simple vitamin deficiency.
It didn't take long for the nurse to call me back. She said to come in right away. They needed to run blood tests to rule a few things out. Of course hearing this now I am so worried. What are they wanting to rule out?
So i leave Londyn with my mom. And just Ava and I head to the pediatrician. Ava hates going to the doctor. She is deathly afraid of needles and shots. Of course I know that she is probably going to need to have her blood drawn which is a millon times worse than a shot.
Ava was crying and scared. I stopped at a gift store on our way to the doctor and told her she could pick our any cuddly toy and a friend to keep her safe. She picked out a fluffy white dog. Her spirits instantly improved. Looking back i am so glad i made that stop. Throughout the whole afternoon she held that toy so close, it was keeping her safe.
I get to the doctor. They weigh her, take her blood pressure, temp- ya know all the regular stuff. As the nurse is doing all this she looks at the rash and right away she knew what it was, petechial rash. It didn't sound harmless. I had never heard of it before yesterday.
Petechia is bleeding into the skin and causes a skin rash that looks like pinpoint red spots. Which is exactly what she had.
Finally we go in to wait for our pediatrican. Then a few minutes later my husband walks though the door. I was a bit surprised to see him. Whatever was going on with our sweet little girl. We both needed to be here to support her. The doctor comes in, looks at her, asks her simple questions. Another thing about her bruising that was odd. If you touched her bruise or pushed on it she said it didn't hurt at all. Now keep in mind these are dark, blackish purple bruises. It should have been so sensitive.
The doctor leaves and we wait for him to come tell us what he thinks. Right now I am feeling pretty confidence. He didn't give any dramatic signs. I just figured it wasn't a big deal. So he comes back in and sits down. He starts out very calm and slow. He tells us that her Petechia is very severe. He is concerned. It can only mean a few different things, all are bad news except for one outcome. Her blood platelets are dangerously low, which is necessary for normal blood clotting. He said her spleen and liver were not inlarged which was a very good sign. But that her low platelets were causing the mouth bleeding and bruising. He said we needed to go get her blood tested to find out what was going on. But basically she had one of two things.......
ITP or Leukemia.
I just sat there stunned. What?? Cancer? No no nooo.
This can't be right. She was perfectly fine last week. How could my 5 year old have cancer. My mind was a jumbled mess. I was too shocked to cry. For the first time ever. I was able to calmly sit there and ask all the questions i needed to. My husband's face went pale. I see his face go down, hands on his head, he was about to pass out.
The doctor explained the possible outcomes. He was very sure it was Leukemia. He wanted us to prepare for that. I asked what would happen next. He told me we would head up to Primary Childrens hospital right away. They would need to start chemo tonight. Then he continued and told us the success rate was 98%. That this was one of the best beat types of cancer. That she could still continue her chilldhood. She would lose her hair. Treatments last about 14 months... I asked more and more. He told me it would be okay. That we could do this. I asked is there any way it could be something else.
He said only one option was good the rest were not. Ava could have ITP (Idiopathic thrombocytopenic purpura) but it is very rare, only 1 in 10,000 have it. But the good news was that it is not serious. That the Petechia in children would usually go away on its own or only needed steroid meds I could give her at home.
Based on how Ava looked he wasn't thinking it was that. But he said there was a chance. As I sat there talking to the doctor, Ava keep asking to go home. It's spring break and she wanted to play with her friends. It broke my heart. We were told to keep her activity minimal. Not to do anything where she could injure herself. No bike riding or running, the risks were too high. Any fall could cause internal bleeding and would be fatal. Especially head injures. As we leave the office. I am crying. It finally hit me. My Ava probably has cancer. my outlook on life, parenting, on everything changed. I am walking out sobbing.
Ava turns to my husband, " Why is mommy crying"
He doesn't say anything. What could he say? She had no idea what was going on. Cancer doesn't mean anything to her. This was every parents worst nightmare, to find out a child is sick, cancer no less the very worse kind of sick.
I remember asking the doctor what caused this, what could I have done different? Nothing. He said Nothing i did caused this. That literally one day she was fine and the next day she woke up with it. It all came crashing down. My perfect world. My happy little family. I wasn't going to lose her. We would fight this. Perspective on life changed. What was really important to me. Who cares about all those silly superfically things. If you aren't healthy that nothing else matters.
As soon as we get out of the elevator I call my mom, sobbing, she could hardly understand me. I tell her Ava needs a blessing from everyone. My mom calls my brother and my dad to meet at our house.
Since my husband met me at the doctor we had to drop off his truck at his work. He went in and when he came back out his eyes were all red, I knew it had finally hit him. It only made me cry more. I got out of the car and we hugged so tight both falling apart and somehow trying to keep eachother help together. But at least we had eachother. We would be there for Ava no matter what.
We go to the hospital. I try so hard to keep it together. I want to numb myself from the pain I feel. Even though I know it won't compare to the pain she will feel in her cancer treatment. I have to be strong. Me falling apart is not helping Ava.
Ava begs us to take her home. "Please no more doctors!" She cries. Little does she know the worst is yet to come. For a child who is deathly afraid of shots getting her blood drawn would be so much worse. Russell is clutching her tightly in his arms while I check in. Finally we go back. Ava knows exactly what is going on. All the nurses, medical stuff, Russell sits with her on his lap, her one arm extened out to the nurse and the other he is tightly holding. The nurse expains everything but nothing calms her. She screams out as the needle goes in. I had to leave the room. I was crying so hard. Her screams were so loud they rang though the hallways. Finally it was over and she was sobbing. I could see the huge bruise swelling on her arm from where the needle went in.
We leave the hospital. Ava has calmed down and is begging to play with her friends. She keeps asking if we can still go camping. We had a long trip planned for down south. We kept telling her that we didn't know. It was up to the doctor. Only if she would be okay. She didn't know she may be spending the next while held up in a hospital bed getting treated for childhood cancer.
We get home and I call her friends to come play. She needed the distraction. She needed to be happy, to feel like herself. She had all the normal energy as she always did. She just looked bruised and worn down. Little kids dont see that though, they won't judge her on her nose bleeds or scrapes. They don't care if her body is covered in deep purple bruising. Grown ups are different. We worry, we judge. She seriously looked like a beaten child. It killed me inside. I would never hurt my sweet girls. But it looked so bad.
My parents show up and my brother Brett and his wife. By now we had a whole bunch of neighbor kids at our house playing outside. It almost felt like a normal day. But in the back of my mind I knew it wasn't. There was still this dark cloud of unknown looming over us. Basically the doctor had said that we would know for sure what was wrong based on the blood test. And due to the severity we would pretty much know in 1 hour after the draw what her fate was. Ava is given a blessing. Family and friends start praying for her. We just want Ava to be fixable, if only it can be ITP and not cancer. So we wait. A hour goes by. Still no word back from the doctor. So I call them. The after hour nurse tells me that the doctor is still going over results and will call me back. I don't know if this is good or bad. About 10 more minutes go by. Its been almost 2 hours since we were at the hospital. Finally I get the call.
Dr. Cornish starts out slow. Ava's blood platelets are dangerously low. He has never seen them like this. (They were at 2k) but her red blood cells are unaffected, and her white. Which would be affected if she had Leukemia. So he is pretty sure she has ITP. I should be happy right? This is good news. So why doesn't he sound relieved. He said there are still a lot of questions. So he tells me we will be getting a call from Primary Childrens Hospital so Ava can meet with a specialist and they will take her blood again and look at the results. In some cases of ITP it just goes away on its own without treatment. So if Ava's body fought it on its own then she wouldnt need treatment. So we wait.
As I was writing the post above I got a call from Primary Childrens. They wanted us to come in right away. We were to go to the Cancer, Marrow and blood clinic there. I was sick to my stomach hearing those words. Day 2 I was a lot stronger, more level headed, less emotional. All the prayers were helping. I feel it.
We get ready to leave, Ava is begging us "no more shots, no more doctors" we told her we have to make sure she is okay. We have to get her better. I try to distract her. I tell her she can wear a pretty dress, a princess crown- whatever she wants. I want her to feel beautiful- she is beautiful. All those spots and bruises don't matter. And she was a lot more happy today.
We arrive to the hospital. It was chilling walking though those hallways. Seeing all the really sick kids. I felt out of place. What were we doing here... I can't belieive this is happening. We go inside meet with the doctor. He looks at her. They are pretty sure its ITP. But they want to do a blood drawto analyze themselves. The nurse was so cute and sweet with Ava. And Ava only cried a bit at the beginning. We kept telling Ava how strong she was and brave. We kept saying how proud we were of her and how much we loved her.
As we waited for the results we saw a little girl walking around with an IV stand. Probably not much younger than Ava. She was bald. Ava asked us why. I tried to expain how she was sick but she would get better but the treatment made her lose her hair. She told me she didn't wait to lose her hair. I told her that we would fix her and everything would be okay.
The photo above was from our camping trip. But it shows the brusing, backs of her arms, face, legs. The back of her legs were way worse but I don't have a photo of that.
Finally the results, and a new doctor to see. He was my favorite. He was young but sharp. He had all the answers to my questions, he wasn't all doom and gloom. He was positive without downplaying the situation. Basically she has ITP. They were 99% sure not cancer. But her blood platelets were extreamly low. So the average person has platelets between 150,000 and 400,000. Ava's were only at 1,000. It had dropped 1 thousand since he day before at the pediatrican. As soon as heard that I worried. I asked how she was even functioning on it being so low. What if I never would have taken her into te dr. Would she bottom out and just die? Would she bleed to death from a simple fall? I try not to play the "what if" game with this. I don't even want to imagine what could have been had I not tsken her in. How was she still okay. He said its all relative. Some kids will be fine at 8k or look really bad at 12k. But she was a bad 1K. Her ITP was bad enough that it wouldnt just resolve on its own. She would require treatment. We had 2 options.
Steroid medication or IVIG.
The sterioids would be a very high dose over the next 4 weeks. Each week they would do a CBC (blood draw) and based on any improvement would lower the dose. But its just a liquid med I give her at home 2x a day. There are side effects from this. It would make her very irritable. It would increase her appetitte dramatically. They said she would wake up in the middle of the night starving. The steroids take a few days to start working. They said by Saturday ( today is Wednesday) we would start to see improvement. But it would take the month to see the majority of the bruising and spots go away.
IVIG was the other option. Basically they give her an IV- hook her up for the next 7 hours and just do a day admit to the hospital. It is a blood product transfusion. It contains the antibodies extracted from plasma from over 1 thousand donors. The effects of the IVIG last between 2 weeks and 3 months. They said we would see almost total improvement in 24 to 48 hours.
Either option was a bandaid to temporarily help her while her system goes back to normal. The steroids would be easier on her. But the IVIG would be faster to fix her. I had a hard time deciding. Obviously the IVIG was way expensive. But money is nothing compared to having a heathly daughter. I pretty much was letting the doctor decide. I would do whatever he recommended.
He said that he though we should start out on the steroids. Based on how she improved we would go from there. So if in 1 week she was still the same or worse we would have to do to IVIG. He also okayed the camping trip. As long as she was very careful, kept her activites to a minimum and didn't fall on her head. We were all looking forward to a break and getting things back to normal. Finally I had hope and felt like everything was going to be okay. We are going to take this one day at a time. The doctor said that in children the recovery is quick. She should be totally back to normal within the next 3 months. This is not something she will have her whole life that it most likely will just go away with proper treatment.
Ava brought her fav new dog that I got her yesterday to keep her safe. Ava named her " White" haha. This toy hasn't left her side for a moment.
So we have to wait and see what the next blood test tells us.... But at least for now I have the peace of mind knowing that we can fight this, we can overcome this and though it we will be better and a closer family because of it. But life will never be quite the same. I got a taste of how quickly the tides can turn, how precious life is and to never ever take any moment for granted or any situation lightly. You never know what tomorrow holds so we can't live today with any regrets.
1 week later-
Today we did another blood test. Ava started showing vast improvement just a few days after starting the medication. All the spots/ rashes are gone and the brusing is getting a lot better. Her bloody noses have stopped, no more sores on her mouth either.
P.s. Notice how in all the blood draw pics I post- this stuffed animal dog is in every one. Also her daddy is holding her in them all. Seriously there is nothing more attractive then seeing my hubby comfort my sweet daughter in her hardest times. He is so amazing with her!
The last few days she keeps saying " mommy look my owies are going away" with all the doctors and everyone always talking about her and how bad she looked she was getting really self conscious. People don't point it out to be negative just more when discussing her condition or her progress but I guess she felt like she was ugly.
One day I couldn't find her for a while, when i did she was hiding under my bed. I asked her why and she said she didn't want anyone to see her owies anymore.
Seriously her saying that broke my heart....
I never ever want to feel bad or self conscious. This is not her fault and I don't want her to ever feel like her importance or worth is based on perfection. That day we had a long talk about inner beauty and how the way we treat others is much more important than how we look on the outside. I made sure she knew that all I see when I look at her is a beautiful girl inside and out.
Well, back to the results. We waited 1 hour and the nurse at Primary Childrens called with the update. Last week she was at 1k. And this week..... She was 106k!!!!
Seriously unbelievable!!!! Her blood platelets increased over 100 thousand in just 1 week. Her doctors were so amazed and impressed at her drastic improvement. Seriously our prayers were being answered. We still had a long road ahead of us. But for now things were looking very promising! They said to keep her on the meds and just to keep doing whatever we were doing. I think all the sun, exercise and fresh air from our camping trip helped. Plus we have been feeding her extra heathly, more vitamins and pineapple juice. I don't know exactly what helped but she was finally looking like herself again, although she wasn't acting like herself... The meds make her sooo emotional. She will cry over the smallest thing, have major intense breakdowns and tantrums over the smallest thing. That has been the hardest thing for me and Russell to deal with. She has not been acting like her normal sweet self. But at least overall internally things are getting better. So I just keep that in mind. And try to be patient. That's all I can really do right? I pray for patience. Because right now I need a whole lot of it.
After such amazing news we went out to celebrate. Russ had to head back to work so I took the girls out for ice cream. And we had a fun afternoon.
2 weeks from the first doctor appt ( today April 23rd)--
It has now been 2 weeks from our first doctor appt at Primary Childrens Hospital and her diagnosis with ITP. She has been on the steroid meds for 2 weeks and she looks so much better. Completely normal, other than she is retaining water and her face is puffy from the meds. They said that will go away quickly after she is off the meds. They are dropping her dosing and she will be totally off the steroid meds in 2 weeks. So only 2 more weekly blood tests then we wait and check again in 1 month to see if her platelets maintain without help. I guess she could go down again but it shouldn't be so seriously low if it did.
It's amazing to me how each week there is just so much physical improvement. Today we had our follow up appt at Primary Childrens- Cancer, marrow and blood clinic again. Last week all we had to do was a blood draw at our nearest hospital lab. But his time we would be getting the blood draw and more answers up with the specialists.
The tests are never easy for Ava. She hates needles. But the nurses up there are better, and she seems to take it a little better there.
Ava's blood work for this week came back even better. It was 171k! Finally she is in normal range. The last couple weeks we have called her our china doll. Because she was so brakeable. We had to tell her not to run or jump or really do anything where she could get hurt. It has been hard. She is a energetic 5 year old. So we are hoping the numbers stay high even after we wean her off the meds.
Also I wanted to show her legs now compared to 2 weeks ago. She looks so much better!
.
Yesterday was a very busy morning in the waiting room at primary Childrens, cancer clinic. As we waited in the crowded room. I talked to some of the other moms and met some other young children dealing with bone and blood problems. Some of the kids were on there 2 round of chemo. One girl a year older that Ava the doctors didn't know what was wrong with her, but her bones hurt and she was so weak it was hard to walk or move. Her mom said the unknown was that hardest part. If you cant figure out what the problem is how can you fix it. The little girls aunt was there too and told me her daughter had had ITP at age 3 and is now a teen and is fine. It never returned. Her situation was very similar to Ava. But it took over a month for her platelets to get back to normal and 7 months to be all better. I told her how much Ava had improved in just 2 weeks and she was shocked. She kept telling us how very lucky we were to have those results. Her daughter had to do the IVIG a week into treatment because she wasn't improving.
As I was listening to her and comparing I felt so incredibly relieved and grateful that Ava's recovery has been faster.
So that pretty much sums up the roller coaster over that last 2 weeks. It's crazy but each day has felt like a week and each week feels like a month. We are all emotionally drained but our hearts are full of gratitude. So grateful for all the prayers for Ava and our family. It truly has made all the difference. The first day was one of the hardest days in my life, I am very sensitive and emotional when it comes to my girls. So it truely was a testament of faith that though out all these doctor appointments I have been able to be strong when inside I felt like falling apart.
