New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Thursday, November 26, 2009

Thankful (by Bree)

These days it can be tough to be thankful. I'm watching Nathanael get sick as he weathers the storm of the post-transplant treatment. While it was difficult to watch him get chemotherapy for almost two weeks, it is more difficult to see his progress now. I have known since my personal experience with chemo in 1999-2000 that the effects of the drugs are cumulative, and therefore get worse over time. I had been told to expect his most difficult days to come after the transplant, and I'm now starting to see just what that means.

Don't get me wrong: overall the doctors and nurses are thrilled with Nathanael's condition. He is still gaining weight, his skin looks clear with no signs of rash or irritation, his vital signs are all good, with the exception of some slightly high blood pressures that we've seen (to be expected, and not yet of enough concern to treat with additional medications). What I'm talking about is little bags under his eyes, a general tiredness, his being more cranky than usual, and worst of all, seeing him in pain. When he cries inconsolably, or tries to nurse, then pulls away and cries, it hurts me. I have had to give permission to give him morphine more than half a dozen times by now, and within a few days he will probably be given a PCA (patient controlled analgesia) pump. Almost all the kids need them at some point, and the doctor even told me yesterday that since sleep is restorative and pain can inhibit sleep, pain relief is necessary for his recovery. It's just hard for me to put him on such heavy medication. What's funny is that when he's not tired it doesn't make him sleepy. In fact the other day after a dose he stopped crying, started to smile, and all of a sudden became the happy little boy to whom I have become accustomed. He even wanted to play with the occupational therapist who had stopped in to see him. Pain specialists will tell you that if your body really needs the medication for pain relief, it will cause side effects such as excessive sleepiness. I found this true during my year on oxycontin and neurontin: I was able to drive myself to and from work each day, functioning normally in almost all areas of life, save the fact that I carried around enough narcotics in my purse to fund a nice shopping spree.

So the good news - and something for which I am thankful - is that for now it looks like we're on the downhill slope of getting all these medications. Today my little boy only has tubes hooked up to two of the three lines going into his body (he has two central venous catheters, only one of which is currently being used, and one feeding tube that goes in through his nose, also currently in use) and does not have to stay on monitors all day (blood pressure cuff, pulse oximeter, and heart rate and respiration monitors) as he did for several days while he was given certain medications. This means not only fewer bags on his IV pole, but fewer tubes and cords to have to maneuver around as I pick him up, hold him, or change his diaper. It also means fewer things that he can grab and try to yank out: he has now pulled on his NJ feeding tube several times (Well, really, who can blame him?) and even pulled it out so far the other day that x-ray technicians were called in to take a picture to check the tube's position! (The verdict is that while it came up a little bit, it is still south of his stomach, which is good, since the stomach can become very irritated by the chemo and can result in emesis of his feedings. So there's no need to rethread the tube, which is something for which I am VERY thankful!) While we still have a long road ahead with regards to these medications, I think the ones with the worst side-effects are now in the past, and we'll spend the next several weeks giving him anti-rejection drugs to prevent Graft vs. Host disease (GVHD), anti-emetics (Zofran), drugs to boost his white blood cell production (GCFS, I think), and others to protect his kidney and liver function, and Benadryl and Tylenol given prophilactically to help prevent reactions to platelet and packed red blood cell and IVIG (intravenous immune globulin) infusions (which will happen as needed, depending on his current blood counts). While I am not an expert by ANY means, I am learning about these things in order to be prepared to take on Nathanael's medical care once we leave the hospital. He will come home with central lines, and maybe a feeding tube, and will need IV medications regularly.

Sorry for all the medical jargon...but welcome to my world! ;) Really, I'm also thankful that the transplant (or cord blood infusion, or "getting his cells") was uneventful. Our nurse brought in a large syringe full of a red liquid that looked like fruit punch, attached it to a small tube that attached to one of his central lines, and then she stood and slowly pushed the cells in. Nathanael even decided to nurse during the process. Normally an infusion like this (it took an hour) is done using an electric pump to push the syringe, but they like to do transplants manually to avoid problems that could result from pump malfunctions. The funny thing about the cells is that they stunk. Really. The preservative used in the cells smells like creamed corn - which I didn't particularly like before, but now will never eat again! - and that smell emanated from him for days. Ugh! We are thankful that the computer we've borrowed from my parents was still working through Monday evening so that Brad got to watch the actual transplant. God's timing is so perfect, as once I'd put out a facebook update the computer decided it could no longer get online, so I was offline for over two days, but Brad got to see his little boy "get his cells."

I am thankful for many other things...but please do continue to pray. The road to complete recovery is long (possibly up to two years) and will not be easy. I also really miss Brad and Jamison. It is so sad for me to be away from my precious little boy who is growing up more and more each day. I'm thankful that he's doing so well, but sad because I'm not sure if he misses me, needs me, or will get mad at me for my prolonged absence once I'm home. We are doing what we think is best, but please pray for wisdom and perseverance for us as we parent our boys. Of course having them in our family is near the top of our list of reasons to be thankful!

Wednesday, November 18, 2009

Getting sick to get better... (by Bree)

So far we've just been adjusting to hospital life, tests, vitals, and preventative meds, but now is where the challenges begin. Nathanael has finished his first round of chemo (4 days on busulfan), and just started cytoxan, which he'll take for four days. Since the effects of chemo are cumulative I fully expect his condition to worsen in the coming week or so. He has been a little more fussy than usual, and just a moment ago he vomited all over my neck, down my back, and onto the floor. I almost cried. My precious boy is getting sick to get better.
Please pray that we would know how to best care for him in the midst of this. I told Brad that I'm walking the fine line between dilligence and obsession here. The staff here both seeks and values parent input, but I'm still learning what they need to know. They will largely rely on my reports of his feeding frequency and duration, as well as his daily output (all his diapers are examined and weighed), to determine if/when a feeding tube is needed, and I will need to help decide whether we should use one that goes to his stomach or past it. No easy decisions here.
I need to grieve, and have not cried much yet. Privacy can be difficult to find, and I'm not sure I have time yet to feel much of anything. I have met some other parents and have been praying for their kids. I'd ask you to join me in praying for the families here, and that we would encourage each other and allow the Lord to work in our midst. I've missed the prayer group twice now...hope to make it next week.
Thanks again to ALL of you, family & friends, who are helping care for us in one way or another. I told the social worker today about our moms staying with us, our friends sending food, and the many people praying...she seemed surprised at the wide and deep network of support. I don't think I needed to go through this to know that God has blessed us richly with people who love us and will take care of us, but I'm so thankful to see His love in action. My favorite description of the love of Christ is in Ephesians: "And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge-that you may be filled to the measure of all the fullness of God." (Eph. 3:17b-19) You have shown His love to us...may it bring glory to His name.

Tuesday, November 10, 2009

Hospital Days (by Bree)

So we've managed to get through the first two days at the hospital - and I'm so glad that they're over! Not that they were bad, but the sheer number of new things that one needs to learn is just overwhelming. Couple that with moving into a space not much bigger than a dorm room (but with LOTS more stuff and a MUCH higher standard of cleanliness!), seeing your infant son scream and cry because he's hungry but not allowed to eat (prior to the surgical insertion of his central lines) or because he's being held down during a procedure (such as the removal of his PICC line this evening), and trying to find time to eat (but not in our room) and take care of yourself, and it all adds up to exhaustion. Fortunately we both slept fairly well last night, and I'm looking forward to a good night of sleep tonight.

I'd love to write in more detail, but for now suffice it to say that overall we're doing well, we're thankful for ALL of you who are praying for us, taking care of us by writing (I enjoyed the epistle I read today!), calling, bringing food, etc., and we are so grateful for a fantastic group of people caring for us in the hospital. The nurses, doctors, and other staff members here are really kind, thoughtful, caring, and compassionate. We spent almost 2 hours today with a wonderful nurse in the PACU (post anesthesia care unit, for the uninitiated) who shared some really encouraging personal stories about life as a child with a younger sibling who had health problems. It gives me hope that Jamison will grow up to be a more compassionate person because of what life will be like for us in the next year or two...though I'm pretty sure I won't have him help me do the heparin flush on Nathanael's central lines anytime soon! He can help in other ways. :)

Please keep the prayers coming. Please pray that we would be a blessing to others around us in the hospital. I've met two families who have been here as inpatients for more than six months and who have other children at home - what a challenge! I'm not sure what my role will be, as I don't have much time outside the room, but will want to connect with others here. I also love to hear from you, so thank you for the personal messages! I may not get a chance to write back to all of you, but wanted to still say thank you. Pray for strength, faith, courage to handle all the changes that will come, wisdom to understand all that is going on and to ask good questions, for rest for all of us, and for perseverance. This is a marathon, and we're just finishing the first mile.

Thursday, November 5, 2009

Separated (by Brad)

Good afternoon from McKinney, Texas, where fall is characterized by 78 degree temperatures and leaves descending from the trees covered in a marvelous shade of brown. We've reached the point in our odyssey where I (Brad) am here with our soon to be three year old son Jamison and Bree is in Ohio with Nathanael. I can't really speak as to how he is doing as well as Bree can because, obviously, I'm not there. From what I can see on Skype, though, he's gaining weight at an exponential rate and aside from the underlying condition, looks like a wonderful baby boy. These are the last few days before the treatment begins. They are admitted to the hospital on Monday. Nathanael has surgery on Tuesday to implant two central lines into his chest and on Wednesday the chemotherapy begins which is necessary to make room for the transplanted bone marrow. The chemo will last for ten days and the transplant is set to take place on November 23rd. Then comes the long, long road to recovery.

As far as life back in Texas is concerned, I'm not going to lie, it isn't easy. Except for the solid wall of rain between Memphis and Little Rock, the drive was inconsequential. Folks from our church made sure our home was in working order and that there was food in the fridge and even on the stove. It took two days to go through all the mail and I had to re-learn how to work the remote. My mom is here with us and her help has been invaluable. We've only been home a week but I'm not sure we'd have survived this long had she not been here.

Jamison is acting out and it's impossible to tell if it's simply a matter of being 2 years and 9 months old, as of today, or if it's because of the situation or a little bit of both. He vehemently protests whenever told to do something he doesn't want to do and has a hair trigger for a temper that will absolutely go off if he doesn't get to do something, "by own 'elf (by own self)." If I want to throw him into full scale hysterics, all I have to do is take his shirt off when it's time to get ready for bed. We haven't fully re-entered our lives here yet and time is inching along. My two goals are a.) have him see me every day and b.) have quality interaction with him every day and it's hard when so much of that time has to be spent in discipline mode.

Jamison misses his mommy. He was sad to learn that her pillow wasn't on the bed in our bedroom. He thought a trip to see his doctor meant getting to see Mommy and Nathanael. I was at least grateful that he included his younger brother in his aspirations. Last night he just came out and said it, "I miss Mommy." He wants to know when we can go back to Ohio. I wish I knew how military families with spouses on deployment and children left back home do this with such regularity.