PICU

On Saturday afternoon October 29 Abigail was with us at her brother Nate's last football game.

She was really fussy and grouchy so we could not wait to get her home to bed. When she finally got up from her nap around 4:30 she was a basket case. Her ANC on the previous Thursday had only been 400 and she had a cold so I was concerned. I know the drill, so I packed a small suitcase and took her to the ER at the childrens hospital. She didn't have a fever when we left, but it was 101.4 when we arrived. One positive thing about cancer is that they don't make you wait long in the ER. She was evaluated almost immediately and what they found was shocking--she couldn't breathe. Her oxygen saturation was in the low 80's. The scary part was that they were having a hard time bringing her oxygen up. She ended up on "forced oxygen" which forces the air into your lungs to open them. As a result she ended up being admitted to the PICU--pediatric intensive care unit. The PICU scared me for a lot of reasons. The biggest one is that cancer patients usually go there to die. I was begging the whole time to get out and up to the cancer unit. It took a full 24 hours but she was finally weaned onto a low enough dose of forced oxygen that we could go there. We almost had to return to PICU but we prayed really hard and got to stay. One of her brothers and her older sister got to visit her there.

She was in the hospital for almost a week which meant that she was there for Halloween. We brought up her costume and she wore it all day while the staff did "reverse trick or treating" to her. Here she is picutred with our favorite "super nurse". She came home on oxygen and had to stay on it for a whole week. Luckily the oxygen company gave us a 25 foot cord so she could run around and play. We are happy that she is home again.

Tricks

With Abigail we stayed home most of her Induction (1st treatment phase of Leukemia). Her numbers made her susceptible to all kinds of illness and infection that month. Natasha has been different. While equally sick and grumpy, she has had great numbers. As parents we have learned that our girls need time outside of the house to keep them sane. Our trick in October was to find ways and places to keep them happy. Halloween offered us some great outlets for them. We attended a party at church and a party through the Make-a-Wish organization. Both were so nice because we there were activities for all of our 7 kids. The favorite activity by far was decorating and eating cupcakes. The funny part is that Natasha cried and whined through both events, but then screamed when we pulled into the driveway. She wants to be home least of all. At least our little princesses had a chance to get out and enjoy the holiday.

Gone

It took about a week and a half, but Natasha's hair is now pretty much gone. I think it was actually harder for us to shave her hair than Abigail's because she looooooved to play with it. Her hair was a huge comfort to her. If you doubt that, just look at the photos.

Having gone through this before I thought the shock of seeing her bald and moon faced from the steroids would be gone. Funny that it's not. It is just as hard to see her go through this as it was for Abigail. The difference this time is that I am educated. I know what I can reasonably expect and I understand now everything the doctors tell me even if I am sleep-deprived. It's remarkable what a difference education and experience make emotionally. Just today I spotted the start of thrush in the back of Natasha's throat when she was crying. Her meds are just waiting to be picked up at the pharmacy. Abigail had thrush for days before we recognized it. How grateful I am for Tasha's sake that Abigail was such a good pioneer.

Demodex

This is my new hated word. Actually the whole term is demodex folliculitis. It took us 2 months to finally discover what it was and we have been treating it for 2 months. It is found in individuals with compromised immune systems for long periods of time. ALL leukemia is one of its favorite targets. It is the normal mites that hang out on your skin attacking you. It's itchy and uncomfortable but she complains very little. The first picture is Abigail holding my little niece London. The second picture is psycho I know, but it shows her eye issues. For months she kept getting massive amounts of stys on her lower left and upper rt. eyes. Eventually we had them surgically removed but it has been challenging to keep them away.

Luckily the folliculitis is better. I don't know if and when we can get it to go away but it has never looked this bad since we started. So now that I am hoping to post more I just want to explain Abigails skin so it doesn't look like she has recently started puberty ;)

Repeat

On October 4th our little Natasha joined her sister in the fight against Leukemia. Here she is waiting for a bone marrow aspirate.

Because she had such high chances of leukemia we had been testing Natasha every few months to make sure we could catch it early. We had been planning Abigails Make-a-Wish trip to FL in November and decided to test Abigail one last time before we made the trip final. That was on September 8. On the 9th my pediatrician let me know that her blood looked good except for a low WBC count. She was probably fighting off a virus, so we could just test her again in a month.

When I mentioned that to the PA in oncology on Abigail's next visit he asked if Natasha had a cold or was running a fever. When I answered "no" he asked for permission to check her scores on the computer. When he came back he was very concerned about her ANC or neutrophil count. Normal is between 1.5 (still pretty low) and 7. Natasha's was .6 which is nearly neutropenic (meaning that she doesn't have much ability to fight off any infection). To put it into perspective, Abigail would not have been let out of the house with that ANC. He wanted her retested which we did about 5 days later. The only change was that her platelets, which allow her blood to clot, were declining rapidly and were now low. That was a Thursday. They scheduled her bone marrow aspirate for the following Tuesday. They tried to give us hope but kindly suggested that realism was in order. That was our conference weekend--waiting for the inevitable. At least we had time to prepare a suitcase and make arrangements for our kids. Telling them was a different story...

Natasha was officially admitted about 2 hours after the biopsy. They were able to confirm the leukemia quickly. By 9 am the next morning she was in surgery for a power port and she had her first chemo and steroids that afternoon.

Natasha walked into oncology that Tuesday with a huge grin. She was happy and giving hugs and kisses to everyone. She is naturally so sweet and loving that the staff quickly recognized how different she was from our little firecracker Abigail. That is part of the reason it is so hard for us now. She wasn't acting sick. She was busy, happy and adventurous. It's hard not to feel bad because we have made her sick.

She has steroids in her so she hates everyone and everything. She cries almost constantly unless she is asleep and Josh and I are so sleep deprived I see with a funny aura. I have wanted to post regularly but finding time seems impossible. Today I finally just handed her screaming to my husband and left. I needed a few quiet moments.

Even knowing what to expect, it is so hard. I love these sweet girls and watching them suffer brings almost physical pain to Josh and I. We have both had physical side effects and illness caused by stress that has been unavoidable given the circumstances. My greatest consolation is little Abigail who is only a few weeks away from "maintenance" which is a much less intense form of treatment. She is running, talking, playing and teasing much like she did before the cancer. But now she just seems to have an inner strength and confidence. She has been through so much that she is grateful for the marginal health that she does enjoy now. It's comforting to see that there is a light at the end of the tunnel. It's just another 8 months away...

Princess

Abigail was a princess last night. Through a local charity organization we were able to attend a princess party. She did really well for the first half of the night and then she wasn't feeling well. We ended the night early, but not until we had already gone for a carriage ride, met the Disney princesses, eaten a fancy dinner, snacked on a cupcake, and just enjoyed being dressed up as princesses. Abigail attended with her twin Natasha, big sister Gabby, mom & grandma. She even showed us what a little princess she was inside when she made friends with another sweet little girl in line for the carriage ride. She is always our little example of acceptance.

Time

One thing that Abigail's cancer has changed is how I use my time. I felt busy before but now it is just crazy. I feel like I can't keep up with friends, enjoy hobbies, or just relax. There is always something that has to be done. When I am sitting it is because she is sick or having a bad day. I have recently decided to take my life back. I need to do things I enjoy just for me and that includes writing about our experiences.

I never thought it would happen, but cancer has become the new norm. Abigail still cries when they stick the needle in her chest to access her port but that is about it. She walks into the oncology lab like she's a rock star with a grin and a wave for everyone. They always have a craft or coloring waiting and she knows which locked cupboards contain the toys she likes. She starts looking for her best friend-the child life specialist-as soon as she arrives. Once they hook her up she will play with the kitchen for a while but then she wants to be busy. If we are there long we order up food. She sits at the little table, eats her Ramen/yogurt/chips and thinks it's funny that she makes messes. She loves to roam the clinic to see and talk to everyone. The great thing about a children's hospital is that they are happy to let her. I'm just the dorky mom that follows her around with the IV pole. We have met some brave and amazing people. I have so much respect for those kids.

As to Abigail's ability to tolerate things, she is amazing. It took 2 months for her to walk again and then she was ready to go. Right now she is on an escalating chemo course. Every 10 days if her "blood numbers" are high enough she gets more than she did before. Last Fri. she got 2 different forms of IV chemo and then had another form of chemo placed into her spine surgically. Sat. she didn't get out of bed until 10, but she was still walking. Her gait is unsteady and sometimes her legs give out on her but she refuses to lose her independence. Sometimes she will walk along, collapse or throw up, and get up and go again. She is so young that I wonder if she even remembers what it was like to feel good. She has her steroid moments but she is generally happy, full of smiles and waves, and busy. I was a bigger wimp by far when I was pregnant with the twins than she is now. She has been and is such an inspiration to me. Her perseverance with a smile keeps me going when I get frustrated with the situation.

Natasha gets away with murder. So far she has only been tested twice for Leukemia and both were negative but I am so paranoid at times. I am always on the alert for signs of the cancer in her. One thing that this experience has done is change the way I have been spending my time. I am rarely on the computer anymore and I haven't watched TV for weeks. Today I spent my afternoon playing board games with my 4 oldest. My baby has been held more. I sing more with the little ones and we have read more books together. Today I played pet shops with the twins. We have gone on more walks and I have been more patient at pushing the new little trike they got for their birthdays (Just turned 3!) I have been softer and found more patience than I ever knew I had. All thanks to a little girl with cancer.

I truly like the changes. It's like taking the waxed paper off of my eyes and seeing joy in things that were chores before. I love watching them do simple things together like sit on either side of the sink and "brush their teeth" (they really just suck the water out of the toothbrush and then refill it). I like people better too and tend to be less judgemental of others. I know that I have been a terrible wife/mom/friend lately because this has consumed me and I wonder now how many unknown things others are dealing with. It's been such a personal journey for me. Don't get me wrong, it's really hard. I have anxiety the whole way to the hospital every time we go and usually cry-out of pain or joy when we leave. But we are very blessed that she is doing so well. We all are. Work is exhausting but rewarding. Kids are moody but happy. Money is tight but not absent. Time is our most precious asset.