Hoping

We are still not on oxygen!!  This is exciting as Abigail has struggled so much in the past with her lungs due to a bout of RSV when she was only 8 months old.  The down side is that her immunity is diminishing so she could take a turn for the worse at any time.  She wouldn't eat this morning, but I'm hoping I just ordered the wrong thing. 

It's been hard to adjust to a new hospital and all the policies and rules that come with any new change.  Some things I totally hate, but others make a lot of sense.  I just hate feeling like a rookie at this stage of the game.  On the 22nd of this month a new children's hospital will open here in Orlando and then we will go there instead.  Crazy that it will be almost an hour away but we are anxious to see it.  Especially after what I've seen here.  There are advantages in living so close to magic kingdom.  I know the picture quality stinks, but I thought I would upload these photos anyway.  I was so impressed with this castle and beanstock room in the hospital, I had to share.  Plus, Abigail is asleep so I am trying to find something quiet to keep me busy;)

Abigail was admitted

Sunday morning Abigail woke with a cough like a barking seal. We figured she may have Croup. The rest of the day she seemed to be fine and the cough even disappeared. Late in the afternoon, she started to slow down and just wanted to be held. I held her on the couch and she started getting sleepy at 4:00, which is not a good sign. Soon after, she began to feel hot. Hotter than normal and hot enough to take to the hospital. Anytime either twin gets a fever of 100.3 or higher we have to take them to the local ER. So, when we took her temp. it was 102.5. Our friend Morgan and his three girls watched our kids and waited for a more permanent sitter to come over as Kim and I made our way to the hospital.

As they accessed her port (stick a big needle through her skin) this time with her screaming and saying "no more!", I thought to myself, "don't they have enough strikes against them? Do they really need this extra suffering on top of everything else?" It is hard to watch them go through this month after month and realize they still have a long road to slog down. I know we need to be positive about things but, sometimes it is just too much for too long. Yet as much as I wish and pray for it to be different, we are helpless to take this away from them. We must go through it with them. I have wondered about the purpose of suffering in our lives. It is awful to go through or watch. In the past my first reaction when seeing someone suffer was to look away, try to ignore it, or somehow try not to think about. Now when I hear about someone's tough situation or see them go through something difficult, my heart goes out to them and I want to run and help but, many times I find myself unable to help because of my current limitations/situation. And so, I feel helpless but, in a way, I know what they are going through. There are many out there that may appear to have it easy or that things are not too hard for them. I don't believe that it is easy for anyone. Through the things which I have suffered, I have tried to become more accepting and patient of people's "bad days" because I don't how deep some of their struggles really are and I don't want to be the person that adds more weight to their heavy burden.

Sorry, for the side bar....back to Abigail - I stayed with her last night and Kim is taking the shift tonight. Abigail's culture came back that she has RSV, which scares me. The last time the twinnies had it, their lungs partially collapsed and they required heavy intervention at the hospital. They have permanent scaring from that run in with it. We pray that she will get better soon and be able to come home.

We feel blessed that our family has the health that it does. We were brought back to reality yesterday by the story of a family that has had a sad turn of events. The family had been getting chemo for their 10 or 11 year old son and then just recently had to start treatment up again when the cancer came roaring back. The 11 year old was going through a rough patch when the mom, from dealing with the stress of everything her son was going through had a heart attack and died. The father decided to keep it from his son (he had two other kids - one had died when she was younger and the other child is fine.) until the son was through this tough part in his treatment. The doctors ran some tests over the next couple of days and realized that the son's cancer was terminal and that he didn't have much time to live. The father, after just losing his wife a few days earlier, sat down with the son and told him that mom would be waiting for him on the other side and that he didn't have much time to go.....I don't personally know the family but, my heart goes out to them. What a difficult situation to go through. I hope my girls make it, though I don't if they will. I pray for peace to be with that family - they need it! There is much to be grateful for!

"Yucky Pee" and "Yucky Poo"

This is a picture of the first day of school for the twins! Even though Tasha spilled milk down the front of herself while eating her cheerios, she wouldn't let us change her outfit. Abigail kept pointing to the wet spot and saying "Yucky Pee!" over and over while laughing. The twins have become obsessed with saying that something is either "Yucky Pee" or "Yucky Poo". That goes for people, toys, diapers, animals, spills, clothing or when they just excited about something!

Anyway, they were both extremely excited about school. They want to be like their older siblings when they head off to school in the morning. They are supposed to take the bus everyday but, it has not come yet. The school said it will take a little time to get them on the schedule. In the meantime, they wait every morning to go to school and call out for the bus to come get them.

Fever

today we had a strange thing happen.   both of the twins had been acting normally, but we noticed that natasha felt warmer than abigail. she was running a mild fever.  we always have to go to the hospital with a fever, so we called oncology.  since the fever was low, they told us to wait 30 minutes and check again before we came in.  on a whim, we checked abigail 30 minutes later as well.   she was also running a fever.   this is the first time they have ever run a fever at the same time.   I took them both up to clinic which tends to be challenging with only 1 adult.   we had to access their ports, draw blood cultures, cbc's, and have a physician check .  their blood looked good and so they gave them an antibiotic.   here they are side by side with their green masks being weighed measured and having their blood pressure taken.   the next photo shows them together both receiving their antibiotics at the same time. This is a first .  now we wait 24 hours to see if they have any other fevers.  if they run a fever after the 24 hours, then we have to go up and do it all over again.   it's a good thing that my dentist was understanding about the appointment that I cancelled last minute to take them up to the hospital. 

please forgive all of the spelling errors and lack of capital letters.  I had to do all of this by phone before I got home, or I knew I would never get it done .  I have 2 other children at home with the stomach flu. 

 

(Abigail on the left, Natasha in the middle, Corban on the right)

(Natasha on left, Abigail on right)

It goes without saying but, we have been very busy lately. We wanted to update the blog with some recent pictures of the twins. The picture on the top shows how much weight Natasha has lost over the last few months. We have been trying to get her to gain weight by giving her the option to eat whatever she wants, but she usually only wants "fishy" crackers (Goldfish). She was delayed in getting chemo for about a month because her blood counts were not high enough. On a positive note, she is getting peach fuzz on her head because of the delay in chemo. Some people who don't know them mistake them for boys even when they are wearing pink. They always seem to smile through it all and they continue to help us have positive attitudes.

We also want to thank everyone for helping us reach and exceed the fundraising goal for the twins!!! Here is the link to the fundraising site we used: Youcaring.com - twins with leukemia  Thank you to everyone that donated, and to those that shared the links and videos on their facebook, email, and just telling their friends, family, and others about the twins. Also, thank you to those who have been praying for the twins and sending positive thoughts and energy our way. We have felt it!

The girls and our family were featured on KSL channel 5 on a show called Mormon Times on Sunday July 1. Here is the link to watch the story: Mormon Times Show  We would like to thank Irinna and Thompson (who came out and interviewed and filmed us). They were so patient and kind.

finishing

I got so busy that I forgot to report what happened after my previous post.  Natasha ended up in the hospital for 5 days.  Every day the plan changed.  From the beginning the thoughts of the doctors differed.  One told us that she could be infected with a serious bacteria and that her port (surgical line with access to her blood vessels) would need to be removed.  Another told us that it was probably just contamination and that it was no big deal.  Nevertheless, we had to stay in the hospital and just wait on the lab results.  I thought a hospital stay would be easier if the child was feeling better, but I was wrong.  Trying to entertain Natasha was so hard!  She felt OK and her numbers were good so she didn't want to just sit in a bed. Abigail came up some of the time to help entertain but it was stretching my abilities.   

 I managed to convince the doctors to let me take her to the hospital play room.  What a blessing! She had to wear a mask but it saved us both from frustration.

 After a week of ups and downs we still had no answers.  We only knew what antibiotic was working best on the bacteria.  Ironically, it was the one that she got the first night we took her to the E.R.  We were finally released with a week of at home IV antibiotics.  Whew!  Dodged a bullet!

Video

We made and posted a video of our twins' journey so far on youtube.  The link is:  http://youtu.be/zmFOg7SpFas

We also have a fundraising site at www.helpourtwins.com 

100%

100%

First

We actually had a first last night.  When Natasha was in the ER on the 17th they drew blood cultures like they do every time.  She got antibiotics that last for 24 hours.  we just need to make sure that she does not have a fever again after the 24 hours is up or we have to go back to the ER for more.  Needless to say, we were delighted when, on the 18th, there was no fever after 10 pm.  Unfortunately, a good night sleep was not in the cards for us. 

About 12:30 I heard my phone go off. My ringtone for the children's hospital is "how to save a life",  so at first I wasn't sure if I was dreaming or if my phone was actually ringing.  When I got up I had missed the call, but I called back and spoke to the ER doctor.  Her blood cultures from the night before had grown out with "gram + rods".  That's hospital talk for "bad news, come in right away". We threw a bag in the car and then added Natasha.  It was one of those long panicky drives that I hate.  Josh stayed with the kids so I was alone with that "what if" fear that comes from having a kid with cancer. 

Upon arrival, we went straight up to the cancer wing where they were waiting for us.  We were admitted immediately and her port was accessed and filled with antibiotics.  When we finally got to sleep we just crashed.  This morning she is still fever free and has a ton of energy.  You would never know she was sick.  Her blood levels look great but her output is lacking.  Hopefully we will be out by tonight or tomorrow.  Fingers crossed...

Again

Between both of our girls we have probably been to the emergency department at the children's hospital 30+ times this last year.  We are instructed to bring them up every time there is a fever of 100.4 or more.   We know the routine so well that we know what drugs they will give and what will happen depending on the lab results. 

so here we are on the 17th of april with our little tasha who ran a fever of 102.7. of course we rarely run said fevers until after 8 pm. so here she is at midnight trying to sleep while they are giving her antibiotics. I can't wait until the cancer treatments are over and I don't have to rush to the children's hospital every time there's a fever.

Interim

We just started a new course called interim maintenance.  It's rough, but still a step down from our last phase.  We started today with a lumbar puncture  which is when they put her under and add chemo to her spinal fluid.  She's had about 12 of these so I wasn't too worried.  The anesthesiologist did give her a drug we haven't had before and she reacted horribly!  She got really restless and nauseated.  It's taken a lot of zophran and some begging to get her to eat but she finally did.  I am so grateful that our children's hospital is so good to let them order whatever they want-- even if they're outpatient.

Rub-a-dub-dub

I am so excited because I got to give all 3 of my little ones a bath today.  Due to infection or possible infection, Natasha has been accessed (her port still has the needle in at all times) and getting antibiotics for almost 2 full weeks.  Somehow a sponge bath never makes me feel like she's very clean.  I never thought I would be this grateful for an ANC  of 600.  She had a 0 for a week.  We are so glad that she finally has some immunity.

Funny

I have to share this because I am still laughing. I am in the hospital with Natasha and I need to get pajamas on. My clothes are stored between the door to the hall and the bathroom. The nurses hardly come in at night, so I thought I could be lazy and quickly change my shirt. As I start to put on my hoodie I hear the door starting to open. I had forgotten midnight vitals! The head opening of the hoodie is tight and I was struggling to get it on. I made a split second decision and tried to run to the bathroom. I couldn't see and the door was closed so I ended up just sort of running around trying to find my way to it. Tasha's poor male nurse entered to see me in my bra with my hands halfway suspended in my hoodie running around in crazy circles like a chicken. Awkward vitals. VERY awkward vitals. I am quite sure he is scarred for life.

Intensification

Recently we have started the most difficult round of chemo that our Natasha will hopefully get. It is called Delayed Intensification. I think the name says it all. Above is my little sweetie while receiving chemo. She refuses to give me a "normal" smile because she likes the posed ones better. She is usually well entertained while receiving the "elixir from Heaven". Here you can even see that she has been eating noodles.

Unfortunately, it only takes a few days to see the effects of the meds. Her whole body becomes weak and sickly and she gets really tired. Our biggest challenge is that her vocabulary is not big enough to tell us if she's nauseated or in pain. When Abigail went through this phase she started to shake. It took a trip to the hospital to determine that Abigail's shaking was due to pain. I was devastated that she had to go through that. Consequently, we often give meds to Tasha now even if we just suspect she might be in pain.

We have known going into this phase that it is 'the scary one'. When Abigail was starting her DI (as it's referred to in the Clinic) they sat us down and explained that if she were to die, it would be likely in this phase. This is because chemo is strong and dumb at the same time. It just kills everything--including her immunity. We slowly watch as her ability to fight back is taken away and just hope that she isn't exposed to anything that would make her sick. Unfortunately, our twins are 5 & 6 out of 7 kids. How do you avoid germs? Prior to the start of this phase I decided to be proactive. I spoke with our wonderful elementary school principal and all of my kids' teachers. We set up a plan to pull our kids out of school around the time that Natasha's numbers would dip. They will do their schoolwork at home for a few weeks. It seems extreme but if missing 3 weeks of school would help keep your sister safe, most kids would be willing to make the sacrifice ;) I also made a PowerPoint presentation that I took in to the 3 younger classes and explained in simple terms what Leukemia was and how chemo worked. Much of the presentation focused on germs and hand washing. After that, all we could do was hold our breath and hope for the best!