Jordyn's Journey to Triumph Over ALL (Acute Lymphoblastic Leukemia)

Wednesday, August 29, 2012

September is National Childhood Cancer Awareness Month

Did you know?

•One in every 330 Americans develops cancer before the age of twenty.
•On the average, 36 children and adolescents are diagnosed with cancer everyday in the United States.
•On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.
•Cancer is the leading cause of death by disease in children under the age of 15 in the United States.
•Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.
•The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.
•Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.
•Despite these facts, childhood cancer research is vastly and consistently underfunded.

Here is a more recent picture of Jordyn. We took her to go fishing and you can see how completely exhausted she was by the time we went home. She gets so tired so fast now...

Things people can do to help kids (and adults) in their battle against cancer

I was just reading another blog about another child with leukemia and found this and they said we were welcome to copy and paste, so I am after I say a few words about my little one. I know that sweet little Jordyn has already had to have two blood transfusions in just under a three month period in her fight against cancer, and I am grateful for those who have donated in the past and those who continue to dontate blood. The need for blood is great, and I have been very grateful that people are willing to give part of themselves to help save lives. I am sure Jordyn will need blood again over the course of her treatment, and while they can't give blood from family and friends directly to Jordyn, it helps others, and pays it forward.

1. Get registered in the bone marrow donor registry: There are many people who need a life-saving bone marrow transplant, but who don't have a match. Last month, we heard about this sad story - an 11 year old girl with AML (leukemia), who passed away. She needed a bone marrow transplant and a perfect match couldn't be found. YOU could be someone's match. It takes about five minutes to get signed up. Get registered and give someone hope!

2. Donate blood. According to the American Red Cross: every two seconds, someone in the US needs blood. Before Elena was diagnosed, I never could believe that number. I had no idea. But after going on this cancer journey with Elena and sitting in clinic watching blood transfusion after blood transfusion going on around us, that number is much more real to me. I've mentioned before how many transfusions Elena had in just one week - and that occasionally, her transfusion has been delayed because the blood bank didn't have the type of blood she needed. Or there's our cancer friend, Skyler, who has multiple platelet transfusions every day. And there's millions of other cases where people need blood. It is life-saving. And it can be really scary watching your sick child and being told that there isn't the blood they need available.

Some Facts About Blood Supply Needs and Blood Donation -from the American Red Cross •One donation can save the lives of up to three people. •The demand for blood transfusions is growing faster than donations. •Shortages of all blood types usually occur during the summer and winter holidays. •Less than 38% of the US population is eligible to donate blood. (So if you can, you can see that you're sorely needed!) •It is possible to donate specifically only platelets or plasma. This process is called apherisis. •Donated platelets must be used within 5 days of collection - new donations are constantly needed. •Healthy bone marrow makes a constant supply of red cells, plasma, and platelets. The body will replenish the elements given during a blood donation - some in a matter of hours, and others in a matter of weeks. •The average adult has about 10 to 12 pints of blood in his body. Roughly 1 pint is given during a donation. •The average red blood cell transfusion is approximately 3 pints. •A healthy donor may donate red blood cells every 56 days. •A healthy donor may donate platelets as few as 3 days apart, but a maximum of 24 times a year. You must be at least 17 years old, weigh at least 110 pounds, and be in good general health to donate. (Eligibility requirements may vary in some states and donation centers.)

Please, if you possibly can, get out and donate. It's one of the best gifts you can give.

Monday, August 27, 2012

Interim Maintenance 8/27

Jordyn went for her second treatment in this round of chemo today. They increased her dose of methotrexate, and gave her the same dose she has been getting of vincristine. They premedicated her with zofran (an anti-nausea medicine) to prevent her from getting sick. She did really well, and even played a bit when we got home. After awhile though, she said her tummy hurt, and wanted to take a nap. She ended up being sick when she was sleeping and was very sad. I couldn't help but crying after I got everything cleaned up and tucked her back in. You are supposed to wear gloves when you touch ANY of her bodily fluids, especially that particular one, and they recommend you wash their clothes and linens 2x's if they throw up on them because of the chemo and the risk of it getting in contact with someone else. The hardest part is that we are still at the beginning... She has about 1 and a half months left of interim maintenance, and then she will start delayed intesification for about 2 months, and then have another 2 months of interim maintenance before she even gets to the maintenance phase (not sure how long, but have heard 2 yrs?). My heart is breaking for her because she has already went through so much with this and it is only going to get harder.

Saturday, August 18, 2012

Start of Interim Maintenance

Jordyn is getting chemo every 10 days or so. She is getting 2 chemos, both Vincrisitine and Methotrexate. They are going to be increasing the Methotrexate until her counts drop and then they know that is the highest dose they can give her. She got it on Thursday, and she is already starting to feel yucky from it. She has been kind of cranky and is starting to get tired. She had nausea yesterday, and this morning she threw up. Her hair is quite a bit thinner, but she still has hair. I think it will probably fall out more this month and next. The treatment course she is in now lasts 2 months.

Beginning of August, RTU and clinic

Jordyn had lumbar punctures every week for 3 weeks. Her last one was the beginning of August. This picture was taken after clinic and before her lp. She has sticky on her still from her ER visits. That stuff sticks like crazy to her skin. She is wearing her earrings she loves so much. She got them from her great aunt Chris. She thinks they are the greatest thing ever, and she also carries around the purse that came with them all over the place.

This lumbar puncture and the one the week before she had a hard time coming out of anesthesia. I am glad she doesn't have another lp for another month.

Bird - July 12th

Jordyn had a lumbar puncture on July 12th as well as a clinic visit.

This is when she was at the end of her steroid regimen(part of her chemotherapy) and so that is why her cheeks are so puffy.

Her wonderful child life specialist whom she loves dearly made her a special buddy. Jordyn called her Bird. Bird has a picc line just like Jordyn did, and she has a port like Jordyn does now.

Jordyn likes to play doctor with Bird, especially when she is having a hard time. It helps her so much to play with Bird with the things that scare her and intimidate her. It has helped her process things a lot better. She flushes Birds picc line, and she puts bandaids on her, makes her pee in a cup, and put tegaderm bandaids on her back when she herself has had to get a back poke.

Surgery Day-July 19th

This post and the next few posts are old ones. After this week I talk about in this post, I just had a really hard time catching up... It was completely miserable for all of us, and I don't know how we got through it, but we did.
On Wednesday July 18th, Jordyn started to be very quiet. A different home health nurse than usual had come that morning and her picc line wouldn't draw back blood, so because she was getting a port put in the next day, the nurse did an iv line instead of ordering stuff to get it working. That was rough, and she blamed Jordyn for moving her arm, and making the catheter come out, which she didn't move her arm, I had her arm in my hand the whole time and it didn't move. That evening, she had a fever, so we had to take her to the ER. Every time she has a fever, we have to take her in because they don't take any chances when a child has leukemia. A fever is a sign of a possible infection, and bacterial infection is a huge cause of death for kids with leukemia. So, when she has a fever, she goes to the ER and they give her antibiotics just in case there is a bacterial infection they want to do all they can to keep her well. Anyway... The picc line still wasn't working, so they did another iv... So she was in the ER until late that evening, and then we had to be at the hospital the next day at 8am for clinic and a scheduled surgery that we weren't sure was going to happen or not because she had a fever the night before.
We got to clinic at 8 am and her picc line still wasn't working, so they put tpa in it and got it working so they could draw blood for the 3rd time in 2 days, as well as be able to give her iv chemo. The doctor there that day wasn't her usual doctor either so that was hard for her too. He decided to let her go to surgery because she seemed okay even though she had a fever the day before. Her hematacrit was low and so they decided she needed another blood transfusion. It takes awhile for the blood to get ready and to get started after they order it, and then they run it pretty slowly.

By the time that was almost done, the nurse realized her sugar was low also, and they needed to give her some d5.

Getting blood

It is 2:30 by this time. She hadn't eaten since midnight because she had surgery scheduled at 10 that day to place her port. She was exhausted from being up so late the night before, and so early that morning.

She stopped talking to me completely this day because she was mad that I kept taking her to the hospital and because she was going through so much. That was hard. She was going through so much and going to surgery, and I couldn't comfort her, and she wouldn't say a word to me. Surgery finished and it seemed like forever till they let me see her. When they finally let me go back, I made it to the recovery room before she did. She was still completely asleep.

When she did wake up, she was very upset, but she still wanted me to carry her to the car, even though she was sooo mad at me and so mad at what she was going through. At 8pm, we were able to go home. When we got to the car, she refused to buckle her carseat... I talked to her about and tried to reason with her, but she was just so upset. By this time, neither one of us had eaten all day, and we were both tired and frustrated and I was very ready to go home. I called Jacob on the phone after I tried for about 30 minutes to get her in unsuccesfully. I was almost in tears because I felt so helpless and it was such a hard day and my daughter was shutting me out. Jacob was at work, but he called and had a security guard come help me out. It took about 25 minutes and then we ended up forcing her in because talking wasn't working. She was scared because her port was where her seatbelt goes and she also had an incision on her neck. We were very careful and she didn't get hurt when we buckled her in. I couldn't have done it on my own. She cried a lot on the way home, and when we got there, she went and hid in corners and screamed and cried. She went to the bathroom and wouldn't get of the toilet because she didn't want to unless her dad was there. She was not herself at all, and I was extremely concerned about her because she was shutting the entire world out...
She gave me the silent treatment until Saturday, and then she finally started talking to me again, until she had a fever that night and had to go to the ER AGAIN... Ughhh... More silent treatment... On Sunday afternoon, she got a rash. It was everywhere... We took her to the clinic on Monday to have them look at it in hopes of avoiding another ER visit. That night, she had a fever... We were in the ER until around 5:30 in the morning on Tuesday. When we got home, she still wasn't speaking to me, but she didn't want me to leave her. I slept in her bed because she was so scared... She was completely traumatized that week and she had a hard time recovering both physically and emotionally...