Halfway through the first treatment block

Molly is at day 14 of 28, and a few things have been complicating matters.

We started off the month pretty well, but soon Molly needed more platelets and red blood cells. She has been on pretty high doses of steroids, but hasn't been eating or drinking very well, so she's been connected to IV fluids most of the time and has lost about 7 lbs. We had a feeding tube pushed down her nose to help with her nutrition today. After receiving blood a few days ago, Molly got a fever and the blood cultures came back that she had a bacterial infection somewhere in her body. So they started her on an antibacterial for that. She's also taking an antifungal and an antibiotic.

Somewhere around day 10 Molly's blast count went down to 0, so that was a bright spot on this dark canvas we've been looking at. Her ANC has remained at 0 though, so we're not even close to getting to go home.

Sometime in the first few days, Molly started having some pretty bad abdominal pain, which was assumed to be constipation from the steroids. So we started giving her stool softener. After a few days her stool was very soft but the pain was not gone, so we stopped the stool softener. A couple days more and the pain was still there, so Molly got an ultrasound of her belly and they found her intestines were pretty blocked up, so they started stool softener again. After a couple days the pain was getting worse so they did a CT scan and found that Molly's small intestines were telescoping into her large intestines, which is called intussusception. This is usually something that happens in infants younger than 1 year old, and it is considered an emergency. The usual treatment for intussusception is to perform an air enema (called air reduction by the doctors) to blow the blockage straight again. Molly has received three of these procedures, one without sedation (absolute awful experience), and two with amnesia sedation, but the condition has presented itself again each time.

Molly is upset that I won't take the feeding tube out.

The oncologist and surgeon talked it over and determined that, with Molly's ANC so low, surgery right now to remove the telescoping portion of her intestines would be a bad idea, as she wouldn't heal very fast and would almost surely get an infection that could do her in. The radiology department generally only does up to 3 air reductions before sending the patient to surgery, but since Molly is in such an immune compromised state the oncologist and surgeon is asking them to bend the rules a little and do more air reductions so we can wait to perform the surgery for another week or so until Molly's counts are higher. In the meantime we'll be managing her pain with morphine and giving her IV nutrition so that her digestive system can have a break and hopefully the intussusception will not get worse. The risk of doing air reduction is the possibility of the air perforating her intestines and then she will have to go to surgery in an emergency situation, which is even more risky than a controlled surgery situation.

As far as chemotherapy, Molly will be getting the rest of the dexamethasone and vincristine as planned, but they will hold the PEG because it lowers the ANC and they don't want that to be lowered at all so we can get her into surgery as soon as possible.

Many people have asked if they can help us out in any way. The only ways I can think that we need more help in is money and energy. We really appreciate donations for her treatment. We also really need everyone to send positive energy out to the universe for Molly, whether it be imagining her well again, prayer, meditation, affirmations, whatever. And we thank you for asking if you can help.

I have talked to Molly about the possibility of her body not being strong enough to get better, and about the idea of a heaven and the family that we already have there. She may not understand it very well, but I want her to know that if it is her time to go, she has my permission. But we are not going to stop trying to help her body heal as long as we can. I can't imagine a life without her, and I have visions of years in the future when she becomes an aunt, travels the world, finds love, finds her life's calling, possibly has children, and she has such a wonderful life to live. I will never give up on her.

Why we took Molly to the doctor, and what happened there

Around the end of October, Molly was being her usual energetic self and was climbing on the counter in my bathroom to get to my toothbrush. She LOVES to suck on other people's toothbrushes, and so I put mine at the way back of the counter so she couldn't reach it. Just a second later I heard a crash (or a bang, or a thud... doesn't matter) and then some Molly cries. I rushed to her to find her almost to the point of passing out with crying. She had fallen from the counter and bruised her chin and elbow. No serious bleeding or breaks. So I gave her lots of hugs and kisses and found a distraction activity for her. On Nov 7th 2012, I noticed that Molly had a little of a limp, and I was concerned that maybe she had fractured her leg when she fell off the counter (that's the only way I could think of that she could have hurt her leg). Daddy and I decided that we should take her directly to InstaCare to have the doctor there look at it. We took her to the one in Layton, which ended up having waits as long as 90 minutes, so we drove from there to the Syracuse one, where they saw her immediately. They asked questions, watched her try to walk, and took an X-Ray of her leg and found no fractures or breaks. The doctor said that because there are no breaks, it's likely she overextended her knee when she fell and we should give her children's ibuprofen to ease her pain until it heals. As we were leaving, the doctor asked us as an afterthought if she's usually as pale as she was. I have always thought she was paler than the rest of us so I told the doctor that I didn't think it was abnormal.

On Nov 16th, I was at my mom's house and she brought up Molly's paleness, and her recent drop in energy (she was absolutely refusing to walk by this point). I looked at her compared to everyone else in the house and I realized that Molly really WAS pale. Her lips were a faint pink and the insides of her eyelids where white. Since me and my mom both have a history of anemia (red blood cell deficiency) we supposed that might be what she had, so I called Molly's regular pediatrician to see if we could get in as soon as possible to do a blood test for anemia. They told me the soonest they could make an appointment for her was on the following Monday, so I set it up for 1pm and carried on with my weekend as planned. We left Molly and Big Sis with Daddy's parents for the weekend (we explained she would have low energy and wouldn't want to walk because of the likely strain in her knee and probable anemia) and we headed to Denver for a Celtic Thunder concert.

Monday Nov 19th, the pediatrician's office called and asked if we could move the appointment back an hour, which was fine except for Molly's nap is usually around 2pm. I called my mom after to let her know I would update her after the appointment on what the pediatrician says about Molly, since she's the one that opened my eyes to how seriously pale Molly had gotten.

We went in and the pediatrician came in and asked for details why I thought Molly needed to be seen that day, and after I explained everything he poked around her belly and listened to her chest and squeezed her legs. He then looked at me and said I needed to take her down to Primary Children's immediately, because he suspected she has ALL, a type of leukemia. He said he would call down to the Emergency Room and let them know I was coming. He sent a nurse in to give me directions to PCMC and asked if I am ok to drive down there alone or if I wanted someone to go with me. I suspect he thought I was in shock or something, but I was holding everything together just fine because I still didn't quite understand what ALL was and I knew Molly really was just anemic and no one had taken any blood for tests yet so they weren't sure themselves. So I got in the car and ran through in my head everything I had with me to make sure I didn't need to go back home for anything before heading down to PCMC (Primary Children's Medical Center). After I got on the freeway I called Daddy and told him what was up and asked if he could take the rest of the day off work since I would be passing by his work on the way to PCMC at around 3pm anyways. Then I called my mom to tell her what the pediatrician thought Molly had and asked her to look it up online to learn more about it.

I picked up Daddy and we arrived at PCMC around 4pm and checked in at the ER. They called us back almost immediately (they really didn't seem busy that day) and an ER nurse put a needle into Molly's left hand and wrapped it up so she couldn't bend it or pick at it. I really should have been thinking better right before they put the needle in because Molly sucks her left thumb and I should have told them that so they would put the needle in her right hand. But it was in the left, and they drew some blood and sent to their lab to be analyzed. We waited in that ER room for 2 hours while the lab finished all their tests and while we were there we got a lot of visits from a lot of doctors, nurses, and a social worker. I couldn't keep any of their names straight or what part of the hospital they were from, but that's ok... there's only one that we have seen several times since the ER visit.

Quick lesson (you may know this already from watching Grey's Anatomy or other such shows):

• Intern: Someone who has completed medical school and is working for a year at a hospital to learn how things are done there under supervision
• Resident: Someone who has completed their internship at a hospital after medical school and works under supervision
• Fellow: Someone who has completed their residency and is training in a sub-specialty under supervision
• Attending: Someone who has completed their fellowship and is now able to perform medicine unsupervised. They may be supervising the Fellow and Resident. 

An Attending doctor came in sometime around 2 hours after we arrived and drew a diagram on a napkin of a bone and what the marrow inside it does. For some reason the doctors and nurses there have a shortage of note paper because they were all drawing things on napkins for us... kind of odd in my opinion.

Quick lesson (bone marrow):
The bone marrow is where parts of blood is made, and specifically in our case the white blood cells, red blood cells, and platelets.

• White blood cells: these help fight infectious diseases. Normal: around 17
• Red blood cells: these carry oxygen to all parts of the body. Normal: around 5.3
• Platelets: these help blood clot if it needs to. Normal: around 400,000
• Lymphoblasts ("blasts"): immature white blood cells. Normal: anything under 20%

The doctor then explained that her blasts percentage was high (22%) and her red cells and platelets were very low (.77 and 5,000 respectively). He said that because of these numbers, they are going to send her blood to a "more sophisticated" lab where they can confirm for sure the suspicion of ALL. Then he said that she will be a guest at the hospital for awhile. At this I was confused and asked how long a while was... overnight maybe? The doctor immediately shook his head and said "Oh, no. Much longer than that." And that is when my heart fell and all my plans for the foreseeable future flew out the door and and I just started to cry. My Molly isn't supposed to get sick. No one I care for is supposed to get sick.

Between that and when they took Molly up to the ICS (Immuno Compromised Services) unit on the 4th floor, I cried and cried. My dad called to see if they could come visit us in the hospital, which they did, and Daddy took Big Sis to his parents house to stay for the night and to pick up some dinner for us.

To be continued...

P.S.
I am very grateful for my mom who scared me into taking Molly to the pediatrician to get checked out, and for the pediatrician who recognized the signs of ALL and sent me down to PCMC. I am not a religious person, but I know that Daddy would thank his heavenly father for inspiring everyone involved so that we can all do what needs to be done to help Molly survive.

Molly is incredibly important to me, and it's something like this that makes you realize how fragile the human body is and how important it is to take care of yourself. I got a glimpse of how others might feel if I somehow ceased to be alive.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.