2/28/06: We're home! Geoff's doing well, not even a diaper rash. We've got clinic on Monday, but otherwise it's just time to be at home.
On our way out of the hospital we paused for a commemorative photo and Geoff just kept pointing toward the car.
Geoffrey got a lovely cake that said "Happy Day" in honor of this last inpatient chemo. As you can see, it was well recieved.
Geoffrey is preparing for a career in vetrinary dentistry with the help of this little alligator.
2/25/06: Colleen came by yesterday and watched Geoff so I could start the admissions process before he woke from his blessedly long nap. After all this time I've cracked the system. When I went to sign in I started making calls. I called 'bed assignment' to request the side with the window. Then I called the charge nurse to ask if there were even any beds available on the floor. She said that there weren't, so I made arrangements to go home and be called when the bed was ready. Yeah! Just 3 hours later Jerry called to say that we could come straight to the floor. So that went well. Last night was terrible though. Geoff woke up at least 10 times. His chemo didn't start until 10, so the nurse needed to come in a lot and Geoff woke up every time the door opened. I guess he's use to darkness. It doesn't really seem like this could really be our last scheduled inpatient chemo. But it is, crazy.
2/24/06: Geoff's counts are sufficient to proceede with treatment. Geoff's taking a nap, and I'm just going to let him. Admissions is never a pleasure and waking a baby to go through that is "not my idea of a good idea" (for those of you who have seen the "Swan Princess" cartoon, please insert musical accompaniment. We'll be in until Tuesday, and at the risk of incuring bad luck, we'll celebrate with a cake and such. Best wishes util next time.
Geoff heard the sweet sound of this chinese medicine ball, and wanted to share it with you.
2/23/06: More good news. Geoff is up to 17lbs and 9oz. Man, can I feel the difference in my arms. That's a pound weight gain in one week! We went to the clinic this morning and Geoff just barely missed the mark for the admission. He needs a 500 ANC, and he's at 498. Since even 500 is low, we'll go in tomorrow to see if he's high enough to proceed.
2/21/06: Good news!!! Geoff has achieved the 17 pound mark, which while still low, is really a relief. We've been worried about his lack of weight gain since he's been 16 lb and 5-9oz. for more than 5 months. The doctors were getting worried to since he still just nurses and doesn't like any food but chocolate. We'd even seen the pediatric GI team and a dietician, who both thought that an apetitie stimulant and likely feeding tube was the way to go. "Not one more thing!!!" we thought. Thankfully, a friend who is a lactation consultant gave me a suplemental nursing system that allows me to sneak Pediasure in while Geoff's nursing. We've been supplementing since Thursday and we took him in on Monday just to get weighed. Hurray, he'd gained enough that I don't plan to give him the apetite stimulant, and if it keeps up, we'll be able to avoid the feeding tube. He is pretty funny, when we nurse he motions for me to get the bottle, but he won't drink the Pediasure from a bottle. Last night he did take the tube with a pacifier, that was funny. It was like having a baby on a string since he was crawling around, drinking remotely.
2/19/06: Surprise, my brother Sam came to visit this weekend. We are enjoying a 4 day weekend and he had some time off, so he rode the greyhound down. We were stunned by the great weather so we took Geoff to the Ward camp-out which was so fun! Geoff's accepting a supplemental feeding and he's really doing well with it. He takes Pediasure and Carnation Instant Breakfast in addition to nursing so he's getting more calories. We're just hanging out and having a restful time. It was pretty exciting to be out with Geoff on Friday and Saturday. We go into the hospital this Thursday for Geoff's last inpatient chemotherapy. This treatment will knock out his counts for about a month, so we are enjoing the few days before we start over. Each time his counts bottom out it takes time for them to recover and even more time for me to feel safe taking him out.
02/16/06: Another busy clinic day. We went for chemo and also saw the dietician this morning. Then after a little nap we went to the audiologist. Our insurance doesn't cover hearing aids or speach therapy, but thankfully there are some state programs that we're able to get help from. Pretty soon we'll start having a speach therapist come to our house so we don't have to take Geoff to the Magnolia Park center. Sometimes life is just one appointment after another. But we're doing ok. I'm so grateful for all the families and individuals who have already gone through the system and established programs that make it easier for us. It's really pretty amazing all the services that are available.
12/15/06: We met with Dr. Jolley of the Pediatric GI team and we officially need to get more calories into Geoff. Sometimes it's just too much. Between the doctors visits, trying to get him to have a specific number of hours in his "ears" each day, and a routine around his medicines, on top of the normal housework and caring for him in the first place... He is pretty darn cute though. He can hold himself up on the pull-up bar. Yep, he's a keeper.
2/14/06: Happy Valentines Day. Love to all. Yesterday we attended a mom's group in the super stroller and this weekend we may attend the Olustee Festival likewise. Super Geoff makes his debut with the following:
Lifting moderatly sized objects with both hands... Piercing glare.... Moving small doors with thumb anf forefinger
2/12/06: We had a lovely weekend, Geoff wore his hearing aids for 5 hours on Saturday (in 2, 1, 1 hour intervals). Geoff is starting to give the sign for "eat" when we bring out the chocolate chips. My attempt to get him to eat peas with the chocolate didn't go over so well. He's been a little tricky at night, he get's super cute and we just have to get him to know that night is for sleeping. It's hard not to just stay up and play with him though. Life is great.
2/9/06: Geoff is so darn cute! Have I told you about the signs that he uses regularly? He uses the hand sign for milk to mean a range of things from "milk," "mom," and "give me that." He also does "more" which is really cute,and he'll nod when I offer him "milk." Last night while wearing his "ears" he scooted off my lap with a very complex string of consonants. Clinic went well, we were done in time to attend a mom's group at my church. I decided that since Dr. Hunger was ok with the idea, I better go now. If I wait until we're only going to clinic once a month, and on relapse watch, I'll never go. As it is, I'll have to decide each time to go. It was nice to see the other mom's and they all know about Geoff and so it wasn't difficult to talk about other things. The picture on the right is Geoffrey counting his tuna cans.
2/8/06: We're finally getting relaxed after last week's hectic schedule. We've got Geoff wearing his hearing aids for 2+ hours on most days. We're also trying to faithfully expose him to new foods.
2/4/06: Despite a remarkable amount of rain, the fair was fun. Geoff was content to ride in the stroller almost the whole time. When he did get upset, we were able to cut behind the booths and take him out away from people. Between the walk we went on this morning and the fair, he had a fair amount of sunlight today. Another ALL family recently advised us to get a lot of sunlight so he doesn't get chemically induced Jaundice, as their little girl did. We had a pizza party with Grandma last night. Geoff had a lot of fun playing with a walnut, and later "playing catch" with Grandma D and Grandma L. It's so nice to be able to take him out with a little less worry. We plan to make a trip to the butterfly museam soon.
Geoff get's psyched for the fair, walking the parking lot, and watching the joust with dad, from a safe distance.
2/3/06: Geoff's spinal went well today. We went at 7:00am and were done by 10:00am. Geoff made a lot of people smile with his antics, including riding to surgury sitting atop the head of his bed. We're home and doing well, if needing a nap.
2/2/06: Today we got a "GO" for taking Geoff out. Dr. Hunger, the head of Pediatric Oncology, said that as long as his counts are up we can go places and see people as long as Geoff's not in the throw of the trong of babies. If you've seen me and Geoff, I just wear him and have been known to say "Don't touch" on several occasions. He even said that it wasn't a problem for Geoff to get a cold. Weird. Get this... We asked specifically if we could bring him to the Hogtowne Festival and Dr. Hunger said that was reasonable. Life is changing. Dr. Hunger said it is most often the mom's who are more strict than the doctors at this point. Quite the reversal. Did I tell you we've had a doctor's appointment most days this week? Tuesday, Wednesday, Thursday, Friday... Mothering is a full time job, no kidding. Occasionally folks will ask me what I do, or where I work. I take care of Geoff.
1/31/06: We went back to Dr. Benton, Geoff's original pediatrician, this morning. He refered us to an eating aversion specialist and recommended to pick one food and offer it to Geoff 3 times a day. Get it in his mough and if he spits it up that's ok. According to their measurements he is up in length and weight, a little, but still, we'll take what we can. It's so good to be known. Thnak you to all of you that have kept up with us throughout. We still appreciate your prayers and thank you for knowing us and caring. I have read and heard of other families that go though treatment alone. All their family and friends abandon them. As if it isn't hard enough. We have the best support. Thank you.
1/30/06: Geoffrey was kind enough and Eliza patient enough to get this hand print of him a week ago. Go Gators. Looking back, I should have gotten it before he learned how to grab so well and all the other great skills he's got. We hung out with the Porters last night which is always fun. Today Geoff is feisty and in to everything! He's using a lot more consonants in his chatter and a wider variety of vowels and pitches. Yay!!!
1/28/06: We got to have our baby beethoven watch the baby einstein "Baby Beethoven" with sound on Friday. That was sad and ironic but neat that he was hearing what was happening. We put the ears on for 30-45 minutes a few times a day. It's pretty intensive when they're on because we're trying to introduce him to the world of sound, and he wants to pull the aids off. He's supper cute as ever and still has his eyebrows and eyelashes. Phillip and Eliza got to go on a spur of the moment date with some friends and Grandma verrrrry kindly came to watch Geoff. See, how normal is that! :)
1/26/06: We had a visit to the hearing center this afternoon. Geoffrey has some significant hearing loss. His threshold of hearing is about 50 decibels, this means that normal conversation sounds like a very soft whisper for Geoffrey. The hearing people are pretty sure that with his hearing aids (he has Orange and Blue ones) and speech therapy he will be able to learn to talk. Next week he has another appointment where they will test his hearing with the aids in and we will have a better idea of how successful this will all be.
P.S. Yes, we have seen Mr. Holland's Opus. No, we don't want to compare our situation to that movie.
1/26/06: Clinic went well today and Geoff's counts are all good. His ANC is over 800, over 500 is ok, but not up to 1000 which is where I like it to be. We'll be off treatment in 4 months and then we only have clinic every month rather than every week. He'll keep his port until it causes problems, and he'll continue to get a medecine to inhibit pnemonia for 6 months after treatment. They say it's those 6 months after treatment that can be the most stressfull since you're not doing anything to fight the cancer and relapse is most likely to occur at that time. Geoff's leukemia responded really fast to the chemotherapy in the first place, so hopefully he won't relapse. We're still working on getting him to eat additional food. On the one hand we want to get extra calories into him, but we don't want to force feed him since that is likely the source of his food aversion in the first place. We had to force a lot of oral meds down during the first few months that I have since learned could have been given IV.... at some stages. Tune in next time, same BAT site, same BAT boy. love to all.
1/24/06: It's been a great weekend. We visited the Porters and Geoff played the piano. We had a pot luck at Grandmas and Geoff is learning to eat peanut butter "health food" candy. His counts are not HIGH, but they are adequate for some visiting.
1/20/06: Just hanging out and pretending to have a normal life. Geoffrey was playing in the kitchen and looked super cute.
1/17/06: Phillip and Geoff played nicely at home while I went to meet with other Gainesville mom's. I've got the best boys. Later we went to lake Alice and didn't see anything alive in the waters which were murky and dark. At the suggestion of my mom we put up this fence for Geoff so he could see us in the kitchen but be kept from the dangerous stuff.
1/16/06: A great day at home with dad and mom. Goeff loves brushing his teeth.
1/15/06: It was my lucky day to go to choir and church. I can't express how much it makes me happy to see people there. It's the only normal thing I do, and even that is overshadowed by the absence of Geoff and Phillip. Geoff is still not growing much, so it's a little sad to see all the other babies who are bigger than him. But overall, it's definitely great to go to church. Now, at long last, a glut of cute Geoffrey pictures.
1/14/06: We switched some things around on the computer so we should be able to put up more pictures again. Some of those will be Geoffrey playing with food in his new chair. We would like to say eating food, but he just likes playing with it.
1/13/06: Geoff is tolerating butterscotch pudding with formula powder mixed in for "nutrition." We're trying to get him to eat more food so he will grow a bit more, but he's still inclined to spit everything out. We still are having difficulties with uploading pictures, but here is a picture of Geoff's first swing ride a friend emailed me.
1/11/06: Geoff's being really funny and vocal today. We tried some sweet potatoes, sort of, and crackers, and a tiny bit of oatmeal. He still doesn't really eat much, but he's starting to grow. He's now just over 28" and over 17 lbs on a good day. We're trying to figure out how and when to start bringing him back into "normal" life. We may bring him to church in the big stroller next month, or maybe to a mom's group meeting at the library. We go on walks with friends and try to go outside at least once a day. Geoff's new trick is to roll his arms.
1/8/06: It always takes a few days to get back into life after spending time at the hospital. First you have to unpack/clean all the stuff you took to the hospital and then you need to get reaquainted with the magic of having an oven and refrigerator, let alone other appliances and the mail. We're re-acclimated now. Yeserday we even went to Grandma's for a picnic on her window enclosed porch. Geoff can really crawl fast now. He is also good at clapping, hi-fives, flapping his wings and pulling toys out of the basket. He's a normal little boy.
1/5/06: Geoff's outpatient proceedure went better than ever. We got there and were sent to surgery pre-op about two hours later, normal, but after that it was faster than usual and his recovery was a lot better than usual. We were home by 11am. We'll go to the clinic tomorrow to check his blood cultures since he's off the IV antibiotics now. Finally, we can "sleep through the night" like normal people with a baby. Geoff's feeling a bit sore from the proceedure but he's ok.
1/3/06: We went to the clinic today and Geoff was cleared to the next round of chemo. We'll be in the hospital for a spinal and BMA Wednesday. Beyond the outpatient spinal treatments, we only have 1 scheduled hospitalization left! It's pretty amazing, but we'll be done, hopefully, by June. What do we do then? We don't know, it will be hard to get in the habit of being able to take Geoff places. Another baby we knew during treatment is done now. Crazy! Soon that will be us. The good and bad of infant Leukemia is that the treatment is only 1 year long, but it is so much more intense. Thank you all for your love and support.
1/2/06: Happy New Year. We celebrated by going to bed early so we could wake up to give Geoff his midnight dose of IV antibiotics. We're having problems uploading pictures lately, sorry. Best wishes to all.
12/28/05: Good news, we will probably get out on Thursday. We'd been hoping for Friday, but we'll take Thursday! Geoff is on 5 medicines and we'll have to do home IV anti-biotics, but home is home. What a blessing to have a home, to like that home, and to be able to go to it! Geoff is learning to wave "Bye" and "Hello." He's also learning to reach through the crib rails and grab at EVERYTHING. We're trying to avoid giving him things that he cries for, like the remote/call button, and his infusion pump(Those being the most common).
12/25/05: It's been a hectic day. Mary and I were going to sing in church but Geoff was especially fussy in the morning. When Mary came to pick me up she said her husband had caught a flight after all so she needed to go pick him up. So Phillip went to church and Mary went to the airport. Fortunately things got better and it's been a peaceful day full of family and good food. I think it's my first Christmas without a tree. Mary suggested we bring the tree from home (it's small) but I didn't want to bother. But I do miss the special glow of the lights. Geoff's blood and urine cultures have turned up positive, so we'll be in for a few more days. Pray for us that we aren't in on New Years.
12/24/05: Bummer! Geoff got a fever of 101.2 yesterday around 11am. The doctors got us admitted within half of and hour! My sister Mary came to visit and it's not so bad. Geoff's counts were ZERO and he'd had a high temperature on and off for a few days, so we had cut back on family visits. Geoff got a fever anyway... bummer. We're ok though and Geoff, while fussier than normal, is ok, so it's a Merry Christmas and Happy Birthday after all.
12/21/05: Geoff's counts are pretty low, but hopefully they will recover in time for some great times this weekend. Geoff met his Papke cousin on Monday. Today he crawled all over the place and knocked on the door. It's funny to watch and listen to all the little things he does.
12/19/05: It's been nice to be home this weekend. Geoff doesn't eat much, but he is learning to eat a little ice cream. A week in the hospital always seems to last forever and then when you get home, it was just a blur and a week has past. Geoff will have low counts for a while, but hopefully they will have recovered by Christmas. Last night Geoffrey was so cute and funny, it's hard to go to bed sometimes because that is when he's the most delightful. He's a great kid.
12/17/05: We made it out without any complications. It was nice to see the nurses again, we got pictures of many. Geoff spent a lot of happy time cruizing around the crib and playing with his blood pressure cuff. He handled it really well. I ended up spending most nights with him in the crib which was a first. Geoff will be a year old next week! My friend Angela brought Geoff this great wire toy which he loves.
12/12/05: Mr. Freeman, the father of another leukemia baby, told me it would be hard to come in for a week at this point. I didn't believe him, but now I do. We'd not been inpatient for 2 months and Geoff can crawl and grab everything now. Everyone is so happy to see him, which makes the experience much nicer, being known is always nice. But it's hard. We'll make it through. Best wishes to all.
12/11/05: Phillip and I were both able to sing with the choir this Sunday, a special treat thanks to Colleen, who watched Geoff this morning. Having Geoff as we have him, when we had him, and all the circumstances we now have, makes it hard to sing the Christmas songs, but it's such a joy to be part of an ensemble. Geoff was suitably happy to see his parents again. He's really such a great little boy.
Check out my hot ride! Remember to drive safely.
12/8/05: Tonight is the PKY Band Concert! I wish we could go, though it's never the best idea to take a baby to a concert. Still it is fun to hear the kids play, and see the parents. Today Geoff and I went to Westside park and Geoff even swung in a swing! Last time I'd said to Jamie Lillywhite that maybe I would someday let him ride the swing if it was just after a rainstorm. This morning we had just that situation. He loved it. I promptly sanitized his hands afterwards. We're pushing the envelope big time. :)
12/7/05: Actually I don't know the date. Sad. It's Wednesday and it's been a great day. Geoff took a nap of sufficient length to let me get some really good housework done. I've been scrapbooking a lot lately and Geoff is officially a crawling baby. It's so weird. He really will be walking before you know it. We'll go into the hospital on Monday for a week, but we'll have a break in treatment through Christmas and the New year. Nice.
12/4/05: Geoffrey was playing with Poppa's boots and we thought it would be funny to let him try them on, he still has some growing to do.
12/3/05: Just hanging out around the house. Geoffrey is getting very good at pulling himself up to his feet and standing. He is thinking about taking steps, but won't do it yet unless you help him out.
12/2/05: Well, can you believe it's December? We've sent off the Christmas packages and we'll put up the tree this weekend. Geoff's almost a year old. He's able to entertain himself as long as he's not alone in the room. His hair continues to flourish.
Summer of 2005; First 4 months of "Geoffrey Updates"