Moving Day

Mal's Wednesday got an early start. Because she slept through most of Tuesday, and was only up in fits and spurts, we were waiting and ready for her to finally show some signs that she wanted to stay awake for a longer period of time. However, I am not sure I was prepared for her to want to stay up all night with me. Malorie woke up during her nurse's 2 a.m. check, and then stayed awake until about 4:15. I entertained her as best I could by half-singing/half-yawning songs and telling stories that only make sense at 3 a.m. Then, just after I got Mal to close her eyes and fall asleep, Rachel came in out of the parent's lounge to let me go out and get some rest. What she didn't tell me was that the chair she saved for me was next to a guy who had a bad snoring problem and that he was sawing more logs than Paul Bunyan. I think it was quieter in the PICU than out next to Rip Van Obstructed Nostril.

The daylight hours got off to a poor start as Mal's neurosurgeon said that her brain drained about one-third of what it did on Sunday, but it was still draining too much Cerebral Spinal Fluid to allow her to increase the pressure in her head. That means she will have the ventriculostomy tube in for a bit longer than originally hoped. Also, Mal's IV in her right arm infiltrated, which I learned has a medical definition that has nothing to do with commandos repelling out of a helicopter for a black ops mission. Actually, her vein became too saturated with fluids and leaked it all out into her tissues in her arm. Her arm swelled to about three times it's normal size, and she had to get all three of her IVs pulled and then a new one put in on her left forearm.

After our dual setbacks, though, the day got moving in the right direction when Mal passed her swallow study test. She had to demonstrate that she could still swallow fluids and food, which she did with ease and then asked for more. By the end of the day Wednesday she had the best appetite we have seen from her in almost a week. She still is obsessed with Cocoa Puffs though, as she asked for "cock-a-doodle-doos" nonstop after we asked her what she wanted to eat. We succeeded in convincing her to try something else, too, as she saw Rachel's Cheeto and then asked for some of that, too. Cheetos and Cocoa Puffs, not too sure how high in those brain building Omega 3 fatty acids they are, but man do they taste good together.

Also Malorie had her first physical therapy session, which consisted of reaching a grabbing, and lifting her feet from the prone position. Her next big hurdle to attempt tomorrow is to sit up (with help) and then stay sitting upright (without help). If she can do that, then they will have her attempting layups by Friday and hook shots by Saturday. OK, that is a bit of a fabrication, but I am going on less than 3 hours of sleep. The next test on Friday will be sitting upright with her legs dangling, which moves some blood from the head to the feet, and may make her nauseous.

At around 1:30, Mal was allowed to depart the PICU for her own room up on the 12th floor. Immediately when we got there, Rachel began unpacking gifts and planning where to hang cards and pictures for Mal. We called to schedule a visit for Micah during the dinnertime hour, but then Mal had another meltdown when she was awakened from a nap after only ten minutes. She was shouting at the nurse and at both Rachel and me, and very distraught. We got her to calm down and then fall back asleep, but decided to wait another day or so before we bring Micah in so as not to freak him out entirely.

Yet again today I feel compelled to send a massive thanks to everyone who has been rooting and praying and hoping for Malorie. As her parents, we think she's a pretty special child, and we are just now finding out how many other people feel the same. Thanks again, and please keep us in your thoughts and prayers as we await the results of her biopsy and subsequent treatment plan. Also pray for the other parents in the PICU tonight, as I hope they get to move out with an improving kid soon, too.

Tuesday

Tuesday brought progress and more reason for hope that things would turn out well for Mal. The swelling in her tongue had subsided by the time that her post-op MRI was performed, so she was allowed to take out her breathing tube. As soon as the tube was out of her throat, she whispered, "Godi, Godi, Godi," to me, and I grabbed her blankets. As soon as she had a hold on the tags, she fell asleep and remained that way for most of the day.

Mal's post-op MRI looked great, as expected. There were no signs of residual tumor in any other area of her brain, and she did not suffer any bleeding on the brain or strokes during the night. The doctor did say that she was still a bit swollen in there, so she might have to keep in the ventriculostomy tube for one extra day. I thought that saying "ventriculostomy tube" was a bit cumbersome, so I started calling it her brain drain, but Rachel didn't find it quite as witty as I did.

We got a chance to talk to the surgeon, Dy Smyth, as well as Mal's oncologist, Dr. Hanson. Dr. Smyth said that the tumor was the size of a small plum or a big golf ball. He also said that he was not willing to wager on anything, but he thinks Mal's tumor was a grade 2 ependymoma. He said that a grade 2 is cancerous, but slower growing than a grade 3 and 4, so that would open up more options to delay treatment. The oncologist, Dr. Hanson, said that if it was a grade 2, he will advocate to not do radiation unless another tumor appears, because as long as we do MRIs every few months for the first few years, we will catch something before it gets really bad again. He also said that he has seen several cases where a rogue cell mutates and becomes cancerous in a toddlers developing brain. Once that cell is eliminated, as the toddler grows, the brain develops less and less, and the risk of recurrence becomes less and less likely. So, if it is a grade 2 ependymoma, and the council of doctors hearing her case agrees, we may just take a wait and see approach. We would like that very much, because aside from a periodic MRI (every 2 months or so at first) Mal would be a normal kid again, just at a risk for recurrence of brain cancer. Also, they said that since Micah and Mal are fraternal twins, Micah stands no greater risk than any other kid of having a brain tumor, so we don't need to get him checked unless he begins to present symptoms.

Speaking of Micah, he is really starting to worry about and miss his twin sister. Tuesday morning Rachel went home to shower and spend some time with him, he kept inquiring about Mal. Then, when Rachel wanted to leave to come back to see Mal, he kept saying, "Micah go to see Mall too," and "Micah sick too." We want to bring him up to see her, but not in the ICU with all the monitors and the flurry of nurses and doctors. We think he will do much better when she is in her own room, and hopefully a bit more awake and alert.

Tuesday also brought more great visitors for Mal, as my Uncle J and Aunt Claudie, as well as my mother and Rachel's parents, Chris, Jess and several other people all came to see Mal. Although she doesn't know it yet, she is quite a blessed girl, and will have a big group of people that know her and are proud of the strength she's displayed for a long time.

Perception vs Reality

Perception is a funny thing. Two equally intelligent individuals can watch identical events with the same factual basis uncontested between the two, and yet still believe they saw something entirely different. It happens all the time. A waitress comes up to take an order and is extra-friendly. The husband thinks she's nice. The wife thinks she's a flirt.

Yesterday, during an especially low point of patience, I pointed to the Bible on the table. It was a brand new Children's Bible that Chris gave Mal earlier that morning. The cellophane had just been removed from it, and I think one or two people had thumbed through it to look at the illustrations. I looked at Rach and said, "Just flip to a page, any page, and let's read." We both needed some comfort and a distraction from waiting for the phone to ring with an update. Rachel reached to the middle of the book and flipped the Bible open. It opened to John 6, the book and verse that describes Jesus' miracles. We read of Jesus feeding the masses, walking on water and declaring that he was the bread of heaven. You may look at those facts as a random occurrence. I perceive it to be divine intervention.

Yesterday was a brutal day on many levels, but overall we are overjoyed. The removal of Mal's tumor was by all accounts of the surgeons a success, and she suffered no nerve damage in the process. It was fused to the nerves and spine in two places, and would have likely been worse had we not caught it when we did. The bad news is that there is a high chance that Mal will need to undergo further treatment for cancer. I think that Rachel and I are the only parents in the history of the world that were told our kid probably had cancer and it still couldn't sink our spirits. Again, it's all about perception. There is a long road ahead, and many challenges to come. We could choose to focus on that. But we saw something truly amazing accomplished yesterday, and very soon we will get our little girl back. I perceive the situation was the best possible outcome for yesterday. Mal is intact, and now we will wait for the lab to perform the biopsy.

As for the princess, she remained intubated and in an induced sleep overnight. Still, she was restless and had to have her arms strapped to the bed to restrain her from trying to pry out her tubes in her sleep. She is undergoing an MRI as I type this to check for any residual tumor that was not detected before, as well as hemorrhaging or stroke. With all the monitoring that has gone on since the surgery, they told us there is a very low likelihood they will find anything abnormal, but we still need to check. Malorie also had neuro-sensors placed on her tongue that checked the stimulus to the brain during the surgery. That, combined with laying face down for 11 hours caused some swelling in her tongue, and so the doctors are concerned that she will be unable to collect her saliva and swallow, thus precluding her from breathing on her own right now. Because Mal has earned a feisty reputation over the past couple days (ripping out her own catheter, biting the nurse who put in her breathing tube while she was in an induced sleep, etc.), they will likely keep her in a sleep until the swelling subsides, but they will be checking that periodically throughout the day. Mal's earned reputation has also come with some benefits, as she's seemingly won the hearts of many of the staff here. Yesterday, when we arrived back to the room, she had a gift from Kendra and the Judkins family waiting here for her. When we got to the PICU on Friday, they laid the groundrules that any gifts had to be removed from the room to keep it clear for the medical personnel. Last night, Mal's nurses tied her oversized Elmo balloon to a table in her room. "As long as it doesn't touch any monitors, the doors, curtains or doctors... it can stay," they told us.

As for Rachel and me, we are exhausted. I got some good sleep considering it was in an ICU room last night, and Rach and I traded off a couple hours in the parent's lounge for rest as well. I am truly speechless at the acts of kindness that were showered upon our family. We have long known we were loved, but I don't think any of us imagined it was to this extent. On behalf of my entire family, I thank all of you for your thoughts, prayers and kind words to us during this difficult time. You have provided more comfort that you can know.

A lot of times public displays of faith come off as forced and a bit overdone to me. I believe that Jesus knows the content of my heart and thus I know it is probably unnecessary for me to type this in a public forum, but I feel compelled to do so. Thank you Jesus for guarding Malorie yesterday and bringing her back to us. I can never repay you; but that's the point, right? I have long held it as reality that Christ has a presence in my life, but from yesterday forward, my perception of that presence has changed.

Monday (Updated at 11:00)

This morning Mal woke up with me laying next to her in her hospital bed, and Rachel sitting on the bed near her feet. She rolled over, looked around and then asked, "Where's Micah?" She was in good spirits, and her nurse Melissa stayed after she clocked out just to push Mal's bed down to the operating room. Mal really bonded with her over the last three nights, and last night Mal let her change her diaper for the first time - which was a huge step for both Melissa and Mal.

At around 7:45 Mal was given a drug to make her sleepy but not knock her out. Rachel and I told her that we loved her and that we'd be here waiting for her when she got back. She then said, "Love you" to the both of us and laid down. She started to call for us as they pushed her into the operating room, but we stayed strong until she was out of sight.

The first two hours of the procedure will be placing sensors all over her body to test her neurological reactions during the surgery. Then the work of removing the tumor will begin.

At around 2 the surgeons called for the third time. They offered encouraging news about the progress of the surgery. The woman on the phone said there had been no complications as of yet, and that Malorie is holding up nicely. She has not needed a blood transfusion and her vitals are strong. The team is expected to call again in about an hour, and we are hopeful that this will be the time that they tell us that Mal's surgery is complete, a success, and that the tumor is benign. A lot of times in moments of crisis, I forget to thank the Lord for all He has given me. Thank you God for providing me comfort today. Thank you for my time with Malorie and the rest of my family. Thanks for the capacities that I take for granted, like being able to breathe, see, speak, and the coherence to type this message to my friends and family. Thank you God for Jesus, and Dr. Smyth, and modern technology that is currently in use to save my baby girl's life. Waiting is difficult, but we have hope - and when you have hope you have everything you need.



At 3:15 the anesthesiologist came out to tell us that Mal's tumor was 90% out and that there had been no complications yet. Even more impressive by her measure was the fact that Malorie still had not needed, and likely at this point will not need a blood transfusion. She said that Mal is definitely a fighter, and that everyone is very optomistic in the OR right now. So are we. We are buoyed by the strength of our faith that Mal will be delivered through this peril. At just that moment, Aunt Carol walked in with the official, 2011 Mal-o-Rally shirts. We hope to show them off to our baby girl soon.

At around 5:15 Dr. Smyth finally came out to see us. We all had to sit down to take in the situation. He said that he is confident that he removed 100% of the tumor and did not do any perceptible damage to Mal's nervous system. The tumor was fuzed to the base of her brain in one place, and to her spinal column in another, but he was able to shave off the tumor until there was no detectable trace remaining at 15x magnification. He also said that the in room analysis of the tumor revealed that it is in fact ependymoma. There are four grades of this type of tumor. First is benign, and fourth is malignant. Grades two and three are somewhere in between, but will likely need some treatment (likely radiation) to clear up. Therefore, in his opinion, it would be in our best interest to prepare ourselves for the likelihood that Malorie will need treatment for cancer. The lab results of the biopsy will be in by the end of the week. Until then, I plan on staring at the miracle that is Mal, and being joyous in the work that was done today.

Something to Make Us Smile

I have to admit, it's pretty good for a kid with a brain tumor and a kid with no pants. P.S. I only lent the kids to StL for the World Series. They are Cubs fans again as soon as the next baseball season starts.

Sunday

I have heard people say before that they wish their kids could stay a certain age forever. Not me. I have long held dreams of Mal trying on a tutu at her first dance recital, and hosting a living room full of giggling girls at a sleepover. I have walked through how I will tease her the first time I catch her flirting with a boy, and how I will comfort her when she falls for the wrong one. I feel a pit in my stomach imagining her first turn behind the wheel of a car, and a swelling of joy foreseeing me walk her down the aisle.

That is all selfish, I know. Mal has her own dreams, and one day I hope she will get to see them come true. For tonight, my dreams, those of her mother, brother, friends, relatives and so many other kind strangers - they don't matter. Jesus has a plan for Mal. I am at peace with that. I pray that His plan is in line with mine, but again, I am being selfish. More than anything, I pray for the strength to accept the Lord's plan for Mal, whatever that may mean 24 hours from now.

Mal had as adventurous of a day as a kid tethered to a bed by four IVs and one brain drain tube can have. She was allowed by her daytime nurse to sleep on her belly for comfort, and in return she had a bowel movement that shot up her back. For those of you that do know Malorie, when I tell you this you will cringe - it got on Godi and Elmo. There was a two hour period where she had to be without her blankets and stuffed monsters. Thankfully, Jenna again came to our rescue and got the secret replacement Godi (the exact same blanket that she carries around, only sent from her cousin Kaileb who outgrew his) from home while the real ones were being washed.

We have had to give Mal several doses of morphine today, as her head has really been bothering her. She finally, for the first time, told us that her head hurt today. We have been trying for over 7 weeks now to find out what was hurting her. Also, her night nurse, who we have been extremely blessed by for three straight nights (the same ones that let us hold Mal last night) got Malorie a "Big Girl Bed" to sleep in tonight. Mal was excited to get out of the crib, and the bed will allow for Rachel and I to take turns nuzzling up next to her all night. We obviously have to be weary of the lines going into her, but I think we will be mindful.

I got to meet with the Neurosurgeon leading the team performing Mal's surgery today. Dr. Smyth is a great man with a very accomplished record, and I have the utmost faith in his abilities. He told me that he is fairly confident that Mal's tumor is an Ependymoma. These types of tumors are like plastic, and they can shape shift into any loose space in the brain and spinal column. He believes this because of the location and the way it is growing in her. They are sometimes benign and sometimes malignant. He also told me that the top half of the tumor is floating in fluid, so it should be relatively easy to get out. However, the bottom half is up against the base of her brain, precariously positioned against a bed of nerves. This half of the tumor may come out really easily, or it may be attached tightly to the nerves. Mal's long term neurological status largely depends on how tightly nested the tumor is in there. However, because of the rate of ependymomas that are malignant, he will likely err on the side of aggression in removing the tumor, meaning he will forsake long term impairment in order to remove the entire tumor. At the end of the surgery, Mal's skull will be put back together using titanium screws and plates that will remain with her for life. If the tumor is malignant, she likely will not go to radiation therapy for nine more months, as the brain does a significant amount of development between the ages of two and three, and we wouldn't want to stunt that growth. If this is the case she will get frequent MRIs between now and then to ensure the tumor is not returning.

I want to say that I am at peace. I can't. I already wrote it, but it is a lie. I am scared and sad and feel beaten down. But then at times my spirits raise and I know it will be all right. However, there are countless other parents going through tough situations like this. There are numerous families here in the PICU that are fighting for their babies. We can't all win the sick kid lotto and have our dreams come true. I will pray for them to be strong tonight too. If they can be strong, so can Rachel and I.

Mal will be OK.

Saturday

Today brought more challenges to our family, but also more opportunities to love and be loved. I spent the night with Mal last night, and I can't say I missed the beeps and squeaks of the ICU since I was last in one with the twins when they were newborns. Mal was up from about midnight to one last night and was very playful and happy. She smiled and giggled with me as I tried my best to do slapstick in the dark to get to see those beautiful dimples. They lit up the room.

Throughout the night, and the day for that matter, Mal has to be awakened every two hours for checks on her symptoms. The nurses and doctors shine flashlights in her eyes to ensure she is not starting to show symptoms of a problem, and then check all her connections. Along with the stent in her head, she has an IV out of every arm, and had a catheter as well until she ripped it out today, but more on that momentarily. Her head must remain level with the drainage vial for her spinal fluid, which is hard for a little kid. Mal slipped and slouched and rolled in bed enough that the nurses started coming by her room every 20 minutes or so to readjust her or the vial.

I sent Rach home to sleep last night, but she was back in the hospital by about 6 a.m. She couldn't sleep either. We had a nice morning, watching an incredible number of Dora the Explorer shows. I had no idea Swiper the Fox was so dastardly. Anyway, I went home to have a shower and lunch with Micah around nine thirty. Micah is oblivious to anything being wrong, but asks where Mal is about every ten seconds, which is hard for us. He loves her so much, everywhere he goes he points out her belongings, as if she would be there any minute to claim them. We hope we will be able to bring him in to see her next week when she makes it out of the ICU.

Upon my arrival back to the hospital, Rach called me and told me to get up to Mal's room as quick as I could. Mal's doctors had been trying to keep her on Tylenol for her pain from yesterdays surgery, so as not to mask any neurological symptoms that might present. However, Mal's little body could take the pain no longer, so she started to fight back the only way she could. When I got to the room, Mal was clawing at all her tubes to try to get loose, and desperately trying to stand up. She succeeded in ripping out her catheter, but thank goodness she did not get a hold of her cranial tube. She screamed and fought for a good forty five minutes straight until the morphine kicked in. I have never seen her, or anyone else, in a state of such rage and frustration. Once the medicine kicked in, Mal was much more peaceful the rest of the day.

Around dinner time our friend Jenna arrived with a massive poster board for well wishers to write words of encouragement to Mal. A bit later, my parents arrived from Chicago and were able to see Mal awake and in a good mood. In fact, Mal even ate her third meal of Cocoa Puffs (or as she calls them cock-a-doodle doos) for the day with her grandma. We had no idea she loved Cocoa Puffs so much, but when she gets home I am going to buy her a lifetime supply.

After dinner and a bit of rest, we received the best gift of the day. Our nurse wanted to change Mal's linens and give her a sponge bath. She allowed me to hold Mal while the linens were being changed, and Mal fell asleep in my arms. She is getting so tall now, her legs wrapped around me and hung off the chair. Rachel arrived back from putting Micah to bed just in time to be given a chance to hold Mal as well. She still has not let that baby girl go, as Mal is sleeping in her arms as I type this now. In fact, Rachel is fighting a cold, so she has been wearing a flu mask to prevent germs from getting to Mal. She just asked me to come change hers, as she had fallen asleep with Mal and drooled through her mask. Our nurse called in reinforcements to help her weave through the tangle of tubes and wires to get us to hold our daughter for what will likely be the last time until after the surgery. She is so kind!

Monday is coming all too soon, and looming larger by the moment. Mal's surgery will be complicated, and take most of the day. We are faithful that in the vital hours, Jesus will hold Malorie in the palm of his hand and deliver her safely back to us. The surgeons here are the best around, and we also have faith in them, and their skill. We are overwhelmed by the outpouring of support for our family and our little girl. Thank you to all of you.