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Hailey B.

Hailey was born Sep 2001 in Columbus, OH. She had a very healthy childhood. 2-3 ear infections, a few colds, nothing serious. She was always my little hellion. Now I realize that fighting spirit was for the hard battle ahead. Then when she was 3 1/2 in Apr 2005 I noticed she had quite a bit of bruising. I waited a couple of weeks thinking she must have had an active week. Then on Apr 12, I took her to the pediatrician thinking her iron was probably low and she would give me a script and off we would go. But….that isn’t what happened. After checking Hailey the Dr. left and returned with a nurse and ask Summer, our 8 yr old daughter, if she could step out with the nurse. After they left I looked at her and said "you’re going to make me cry" and she said "I’m going to cry". The Dr. said she thought it was a viral infection or leukemia, but without blood test she wasn’t sure. She felt strongly that it was leukemia and she wanted to give me the worst case scenario in person, because after the blood test she would be contacting us by phone. So she sent us to Children’s Urgent Care to have labs drawn. We talked to her on the phone after she received the results and she said that it was leukemia, to head home, pack some clothes and then head to Children’s Hospital. She would call ahead and inform the hospital that we were coming. In my darkest hour!

I had lost my mom last year to breast cancer, so I knew the horror of the "C" word and watching someone you love die slowly. I just couldn’t believe that now my daughter had cancer, life could not be so cruel. Someone please wake me from this horrible nightmare!!

We were admitted to the hospital that day. The next day she had to be awake as they drove nails into her bone (might as well have been nails) for the bone marrow aspiration. She was awake because her platelets were so low they couldn’t put her under. The test came back negative for leukemia. Yea, I was hoping it must be viral, but I think the docs still leaned towards leukemia. They sent some of her marrow to OSU for testing and it came back that she had Monosomy 7. Which indicates JMML. Which was not good news. During this time, I am walking around in a state of shock. I’m not eating, I lost 18 lbs that I didn’t need to lose. Most of it is a fog. I remember I hated to see the Dr’s. coming because it felt like they always had more bad news. I wondered how could this be, she has always been so healthy and if she was going to get leukemia, why this one. Couldn’t it at least be a good one. (as if there is a good cancer). I did not know that there were different types of leukemia, nor did I know what a bone marrow transplant entailed. I am now learning many things that I wish I never had too.

Next came her broviac. A catheter placed in her chest to give her IV nutrition and transfusions. We head down to pre-op, the anesthesiologist refuses to put her under, saying her platelets were to low and it was to dangerous. I told her that Hailey’s docs were well aware of what her counts were, that we couldn”t get her platelets above 47,000 and that is with her getting them twice a day, she still refused. I was pissed, Hailey had been NPO all this time, begging for something to eat or drink.(she had gone all night and 7 hrs today without anything). We go back up to J5, our oncology unit. The docs said they don’t understand our patients and I’m thinking "no, but they know their job and they say it’s dangerous". So we had to get up the next day and try it all again and of course I am even more terrified this time after the one had refused. I remember telling myself Hailey would come through it okay because she was going to beat the cancer and to do that she had to come thru this okay. Which she did, they gave her an infusion of platelets during the procedure. She had really bad bruising all over her chest from it though.

A few days later our Insurance Co. calls telling us we can’t have our BMT in Columbus. They do not have a contract with them for a BMT. This is all we need after the bomb we had just received about her dx. We only live about 35 min. from the hosp. So we’d be able to go home some and spend time with our older daughter, Summer. Our family & friends are here. Our Dr. has seen 12 other cases of JMML which is unusual since it is so rare. We liked the fact that he had experience with JMML. We did not want to leave, it would be different if they were sending us to another hospital for better care but not financial reasons. So we called the financial office at the hosp. and they came to our room to talk to us. They said we had enough on our plate right now just dealing with her dx, to let them worry and take care of the financial side of it. Which thankfully they did without us having to do a thing.

Hailey received 5 days of Chemo to stabilize her, so they wouldn’t have to give her so many blood & platelet transfusions. They gave her Ara-C, Fludarabine and she stayed on Cis Retinoic Acid until BMT. She did really good, she only threw up the first night. Then we finally got to go home after being there for 3 1/2 weeks. Grandma came down from Michigan and took care of Summer while we were in the hospital.

We finally received some good news! Dad is a 9/10 match. YEA!!! Which is rare for a parent to match. I had saved her cord blood at birth but we couldn’t use it because JMML is in the stem cells, so we’d be making her go thru transplant to turn around and give the JMML right back to her. We are hoping to give it to research. Didn’t have to get blood or platelets that often after taking the chemo. We could finally get her platelets over 50, they even went above 100.

We had a meeting with her doc about getting ready for BMT. He said Hailey was in remission from the chemo she had received. So my thoughts are lets wait on the BMT and see what happens. Why send a healthy child to transplant. You would never know anything was wrong with her. She runs & plays just like any other 3 1/2 yr old. In fact she always makes me worried with the way she rough houses with those tubes coming out of her chest. Of course the Dr. said no, we need to hit her now while her cancer cells are down & dormant and she is healthy. The less chemo he had to give her prior to transplant the better.

Our Dr. chose to remove her spleen. He was afraid the cancer cells would pool down in the spleen, which was happening. She had a severely enlarged spleen and his thoughts were we might not be able to kill them all with chemo. She also had a 2nd broviac put in. So now she has 2 double lumens. I’m wondering how much stuff are they going to be putting in her that they need 4 lines. The operation took a looong 5 hrs. She had a laparoscopy. It took so long cuz her pancreas was close and they were worried about nicking it. For precautionary measures she spent the night in PICU. I don’t ever want to be there again!! I thought J5 was depressing but the kids smile, play, ride bikes down the hall… I wasn’t prepared for PICU and the kids I seen there. Nor was I prepared for how sick and weak Hailey was. I can still see her just laying there with all the tubes coming out of her and me just watching the monitors. The next night we were back up on J5. I was so glad I wanted to get out of PICU. Hailey had a tube with a bulb on the end going into her side to check to see that they didn’t nick her pancreas. The surgeon comes in at 6:00 the following evening, gives her some morphine and yanks the tube out, puts a bandage on it and sends us on our way home. The next day she is riding her big wheel out to pick her sister up off the bus. Children are amazing with the way they bounce back. My sister-n-law, Shawn, came down from MI for the operation and she really helped out.

We ended up in the hosp. a couple of times between dx and transplant for infections with her line. So we”d stay a couple of days then they would send us home on IV antibiotics. In fact her transplant was delayed a week because of an infection. We started BMT on Jun 15, 2005. So we went from dx to transplant in 2 months.

The day we checked in for BMT, I remember sitting there rubbing Hailey crying cuz I wouldn’t be able to touch her skin until after transplant and we were home because I have to wear gloves all the time, don’t want to give her anything since she won’t have any immunity. Even though I did give her kisses on the head & hugs throughout the stay.

We were allowed 4 people to help us with the BMT isolation. They helped us keep our sanity. We had my dad, Russell, my brother’s wife, Steph, my best friend, Lea, and my mother-n-law, Becky. Sometimes they would come up and spend the night with one of us or come by for a few hours to give us a break. Grandma and I took turns between the hospital and the house to take care of Summer. Daniel, dad, stayed almost every night at the hospital except when we would make him go home. My brother took care of Daniel’s work for him, I know this created a lot of extra work and stress for Bryan. I honestly don’t know what we would have done without family.

Our doc followed the EWOG protocol. No radiation. For Hailey’s conditioning, she received 4 days of Busulfan, 2 days of Cytoxin and 1 day of Melphalan (she was not a happy camper that she had to get a sponge bath every 6 hrs for 48 hrs cuz of the Melphalan, to prevent it from burning her skin) then a day of rest. Then the day of transplant came, which is melodramatic, cuz all they do is hang a bag of marrow which looks like blood, then the nurse stays in there with her constantly to monitor her the few hrs it takes. Everyday we kept waiting for her to get deathly sick from the chemo, she never did.

The BMT isolation was strict. We had a small anti-room where we had to keep all our stuff. We washed our hands in there and gloved up. We had to wear gloves at all times while in her room. Except when sleeping. We had to make sure the 1st door was closed before we could open the door to her room. Something to do with negative ionization. Anything going into her room had to be cleaned in the anti-room thoroughly with alcohol. If anything fell on the floor it had to be kicked out of her room. Hands can’t touch the floor. Then clean it in the anti-room before taking it back in. Hailey had a 1/2 hr to eat off her food tray then it must be removed. Anytime she got off her bed we had to put slippers on her which were not allowed to touch her bed. Because they had touched the floor. We were not even allowed on her bed. Before isolation I slept in bed with her while at the hospital. The alternative was a couch that was hard as a board, or a recliner that would propel me across the room. Both in and out of isolation, same deluxe sleeping arrangements. Trying to find some humor somewhere. I was just happy that we could stay with her. Everything in her room was wiped down thoroughly everyday. Her sheets changed, the bed wiped down, a daily bath, even our linens had to be changed daily. To hold her we had to gown up to keep a barrier between us. You do whatever it takes!

Then around day 5 or 6 her mouth sores really kicked in. She would just lay in bed, no playing, no eating, no talking, she would only get up to use the restroom or for her daily bath. They put her on TPN (iv nutrition) on day 7. (which she ended up having to go home on, she took it 12 hrs every night for a month after being home). She started throwing up blood, where she was swallowing it from the mouth sores that go all the way down their throat and into their stomach. They said it was normal which eased my mind some but still hard watching her go thru it. The docs said she was doing great, that her mouth sores weren”t bad compared to what they could be, we were diligent with her mouth care. Which with mouth sores it was horribly painful for her and heartbreaking for us, but we didn”t want her to get an infection.

She started grafting on day 8, which is on the early side. They put her on phentinol which is stronger than morphine because she was having a little bit of reaction to the morphine they had her on for the mouth sores. She had a constant push of it every hr and then she had a button she could push every 15 min to release more as she needed. That way they could monitor how much pain she was in by how much she pushed her button. It would register if she pushed it even if it didn’t release any meds. She showed signs of mild GVH (graft versus host, Daniel’s marrow attacking her) on the skin around day 13 so they started her on steroids.

Around day 17 her liver swelled, her Bilirubin went up and she complained of stomach pain. They did an ultrasound and found sludge in the gull bladder but blood flow thru the liver looked good. Day 22 they did an x-ray on her belly still trying to figure out what the pain was from. She kept throwing-up and having watery stools. Their best guess is the pain might be caused by the intense chemo that it ate her intestinal lining up and it will take time for it to heal itself. They have ran all kinds of test ruling out this and that. Day 26 they are doing a rectal biopsy to see if it is GVH. Her test came back clean, no GVH. Yea! (at least not in the organs) she still has it on the skin. She ate a tiny bit finally, it’s a start.

Hailey was being mean to everyone but her dad & me, and her grandpa who she ignored but was not mean too. I could understand the docs & nurses but she was even mean to our family who was helping us out and which she usually loves & adores. She wanted us to do everything for her. We gave her meds, took b/p… I think it was a combination of steroids, isolation for 2 months and feeling crummy. She was just so miserable. I told her she didn’t have to talk to people, but not to be rude. It was like I had a different child, this wasn’t the Hailey that I knew. Still she held up better than I would have. They sure are troopers.

Hailey finally was allowed to go to the BMT playroom, which I had to trick her into going because she had no interest in it and she use to love the main playroom. Then they let her sister, Summer, go in with her since Hailey’s ANC was up. (has to do with the white blood count and ability to fight infection). They both got a kick out of that, they had not been together for 5 weeks. Summer did come to the hospital quite a bit during our stay. She would go down to the cafeteria with us, or we would go to the main playroom on the floor and do things with her. She would even come and hang out in the anti room some and look thru the window at Hailey or open the door and talk to her a little. Hailey did not lose all her hair, but it sure got thin.

On day 40, she had one of her broviacs removed so that we could go home in 2 days. We could have left 2 weeks before: her blood counts were high enough except for this tummy pain. It hadn’t gotten any better and they were still guessing, but at least they had ruled out a lot of things with all the test they have run. It’s just frustrating not knowing. Anyways the docs thought she’d feel better and heal faster at home. I sure couldn’t wait!!!

We came home Aug 5, 2005. 7 weeks from admission. Hailey’s attitude did an about face immediately after returning home. She was smiling again!!!!!!

At day 70 she was having trouble with her magnesium & potassium level but since we were weening her off her Tacrolimus (anti-rejection drug, fk506) which was eating her mag, we were hoping it will level out. Magnesium levels affect muscle tone and can affect the heart. Hailey could not keep down her potassium med, so we had to put her on an iv drip at night with those nutrients. She stayed on the iv about a month. Hailey started bending over picking things up, trotting at a fast pace. Her strength really started improving. When we first arrived home, she was so weak, she would fall sometimes while walking, if she bent over to pick something up, she couldn’t raise back up. She knew it wasn’t normal, she ask me what happen to her strength? She isn’t quite up to par yet but on her way.

Day 82, Hailey was weaned off her steroids, with that we dropped 2 other meds. She has gone from 9 different meds twice a day down to 3. On day 110, we went off the Tac, she got GVH of the skin again, she broke out in a rash that drove her nuts with the itching and it looked horrible. The docs just had us use steroid cream on her. I was worried we might have to go back on oral steroids. They say a little bit of gvh is good that it will also fight the leukemia cells if there are any left. I sure hope so! Day 150, she no longer has watery stools. I was so happy, it isn’t normal to have it for 4 1/2 months, I was really beginning to worry that something was wrong.

We are a little past day 180 and so far Hailey is doing great. She has not needed to get an IVIG in about 7-8 weeks, her level has been above 800. We started going in monthly now. Her HGB is 14.2 and her ANC is above 9000. So all her counts are good. Her chimerism was checked a week ago, and she is 100% donor!!! She had her 2nd broviac removed on Dec. 30 – What a way to start the New Year! We are still under heavy restriction at home. Company to a very minimal. Hailey is to only go places that aren’t crowded and must wear a hepa mask and gloves. No fast food. Still on a low bacteria diet, snacks must be individually packaged. It will be nice when we can be "somewhat" normal again, but I’m not complaining. I’m happy as long as she is healthy.

Gone forever is my innocent child. Now I have one that worries about germs, being stuck with a needle, being sick, dressing changes… Concerns that a 4 yr. old should never have to face. Sometimes I just watch her laugh and play, I want to capture the moment and hold on to it. The fear never leaves, it is a constant companion now.

It is so hard for the siblings also, we mustn’t forget them. They go through so much. Summer joined a 6 week sibling oncology support group at Children’s sponsored by the Columbus Blue Jackets (hockey). She went to her 1st hockey game and thought that was cool. She had a great time and really loved it at the meetings. Made her feel special too. I look at both Summer & Hailey as my HEROES.

I would like to end this with a paragraph I found in my cancer recovery pamphlet.
I just want to be a kid again.
The smell of grass on a spring morning.
The splash of a swimming pool on a summer afternoon.
The aroma of French fries at a country fair.
The crack of a bat against a ball.
The laughter of friends doing silly things.
A week at summer camp.
The sounds, smells and experiences that are part of life for most children are often sadly missing from the lives of children with cancer.
They are often confined to scary hospital rooms or to their homes.
These precious children miss out on many of the simple…
Joys of childhood
Joys that are really the best parts of being a kid
Joys that provide memories that last a lifetime.

Tami, mom to Summer (8) and Hailey (4) JMML
January 2006

* The JMML Foundation (www.jmmlfoundation.org) publishes the stories of children and their families affected by JMML. Please remember there are many ways you can help us to help them. Visit our “How to Help” pages to find out how you can show your support.

Posted by jmmlfoundation2005 on 2014-09-14 19:09:51

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