The cure4treebeard Blog

St. Nicholas Day, 2008

cure4treebeard@gmail.com — Sun, 07 Dec 2008 20:52:00 GMT

Yesterday was bittersweet.

In the morning, we attended the funeral for Jodi's grandmother. She was 95. At the service, Uncle Ray spoke of her legacy, of her family. The room was full of the expressions of her love, in all ages, shapes and sizes.

Back in Pennsylvania, JT didn't understand when we told him that we'd be gone for much of the day, that our St. Nicholas Day party had to be cancelled. We were all disappointed and sad on several levels.

But we hadn't counted on grace. When we called home between the funeral and luncheon, JT was beside himself with excitement, shouting into the phone that he'd received a balloon bouquet in the mail, a huge cluster of helium balloons with a candy basket for ballast. (Thank you to the Fritz family - you can't imagine how your kindness saved the day. Really.)

More grace: December 6 just so happened to be the date for the Christmas parade in Old Towne Grove City and we just so happened to get back in time to catch it, barely. There were fire trucks, floats, flying candy, the marching band, and St. Nick himself in the back of a truck. It was cold and snowing and within minutes of the parade's end, the downtown area went from bustling to empty. We walked up Broad Street admiring the lights, the sidewalks to ourselves now. And then, in the front hall of one of the local businesses, we saw something that looked like it was out of a movie.

There was a long glass hall of lights, and a the end of the hall, on a chair, sat Santa Claus, alone. We opened the door and walked towards him in the darkness, lit only by the glow of Christmas lights. He didn't know that the parade was over, that everyone had gone home, and so he was waiting there by himself. And because there was no crowd, the boys were able to sit on his lap, laugh, listen to his hearty "Ho, Ho, Ho!" It was a moment in time. As we walked back down the long hall to the door outside, we both turned around again to take a look - St. Nicholas, waiting just for us. It seemed like a miracle.

So - thanksgiving all around. We give thanks for the life of Jodi's grandmother and for the family that is her legacy. We give thanks for St. Nicholas, for his story and his example for us. We give thanks especially for JT's donor - a woman whose gift of bone marrow gave JT 365 more days of life. And thank you to our family and friends who continue to help us and send us gifts. We are blessed and lucky. Happy St. Nicholas Day!

Two Year Anniversary

cure4treebeard@gmail.com — Sun, 07 Dec 2008 01:55:00 GMT

Hi Everyone. Too much time has passed since our last blog entry - sorry about that! I was just reading what the last update I posted said and feeling very thankful for where we are today. For starters, today marks the 2nd year anniversary of Jacob's transplant. To be completely honest, we were hoping to be in a little different place than we are, but having said that, we're thrilled that Jacob is thriving and still fighting the good, brave fight! We are so grateful to our donor who so selflessly sacrificed to give our child life. I'm also so happy to share that this was the first week since May that we did NOT have to travel to Cincinnati. I didn't really want to write it until it actually happened and it did! Jacob's skin continues to soften and Dr. Filipovich felt it was ok to move to Photopheresis treatments 2 days a week, every other week. What a wonderful change this is for our entire family on so many levels. Jacob will still need to receive three infusions every week, but we are able to get them done locally. This week we got them administered at our local hospital in Grove City. They were wonderful to us, but from an exposure standpoint we're hoping the possibility of having them done by a home health nurse in our home will work out. We'll see.

Thank you to all of you who continue to fight the good fight with us. We are blessed.

Justy's trip to Cincy

cure4treebeard@gmail.com — Sat, 15 Nov 2008 17:35:00 GMT

Well...we survived! There were definitely a few bumps, but overall a good trip. The first hiccup was that the childlife center (playroom) was closed both days we were at the hospital for special cleaning. In all the time we've been at the hospital we never knew they did that. Jacob and I had been telling Justy all about how much fun it is and how they bring you toys to the room and then when you're done playing with those they bring you more. Thankfully our wonderful childlife specialist, Amy, had pulled a few toys aside for us and we managed just fine.

Second hiccup was that at 7:00pm on our first day at the hospital Jacob accidentally pulled his line out. Now in the back of my mind I thought that perhaps this might happen, I just thought that it would be Justy that did it. Jacob was getting his second infusion when it happened and it wasn't quite finished yet so they had to re-access his port but without the use of numbing cream. He did great. Finally at 9:00pm we were pulling out of the hospital parking garage and heading to the hotel.

The boys had a blast at the hotel room. They had lots of energy to burn and the two queen size beds side by side with about three feet separating them provided all the fun they needed. They jumped, dove and pushed each other back and forth non-stop until Jacob bonked off and mommy finally called it quits. He was fine and we all got a big chuckle at how his bum sounded when it hit the floor.

We finally got to bed around 10:30pm. It was a fitful night of rest as we all started out on one bed, then Jacob moved, then he woke up and wanted me to sleep with him, so I moved. Then Justy fell out of bed and I had to move back to comfort him. I'm not even sure who I was sleeping with when the alarm went off at 6:00 am.

We were back at the hospital by 7:30am. Jacob's photo therapy and last infusion went well. There is some concern that the skin on his arms is tightening back up a little since we cut the photopheresis back to two times a week instead of three. Dr. Filipovich said we'd keep a close eye on it next week and determine what to do. It will be a lot harder going back to three days now that we've tasted two days. We'll see.

We were back on the road heading home by 2:00pm. Both boys passed out before we even left the parking garage and slept for almost 2 hours. They were wiped out. I enjoyed the reprieve. We made a few stops on the way home - one to see the Christmas blow-ups at Lowe's. The boys just go crazy over these blow-ups. It's cute. We made it home around 9:30pm. Overall it was a good trip and I'd take Justy again if I needed to, but both boys told me when they got home that they didn't want to go to the hospital or anywhere ever again. I think they like coming home. Me too! Thanks for checking in.

Staying Healthy

cure4treebeard@gmail.com — Tue, 11 Nov 2008 16:11:00 GMT

Hi Everyone. Sorry for the lapse in time since the last blog. I've been enjoying the time at home with Brian and the boys and have gotten caught up in day to day living - yeah!

Jacob has been good since the last hospitalization. He still has a little residual cough that the doctors told us could last for some time. Brian did catch a mild version of the virus too, but is doing ok now. We've been having lots of fun taking in the last of the Fall beauty with lots of hikes and caches. It's strange not taking the boys to preschool. They miss it. Just the other day we were in the car and Jacob said, "Mommy, I wish I could go to preschool. I miss going there." And then Justy pipes in, "Me too. Are we still taking a break from that Mommy?" Ugh. The preschool class has been wonderful though, sending e-mails and pictures. Brian and I met with both of the boys' teachers last night for a conference. It was nice to hear how well they were doing and how much they are missed by the teachers and the other children. I think it will be important and fun to set up some small playgroups for the boys to maintain some contact and also give them a chance to work on their social skills. They're all about it as they ask every day to have a friend over.

And the great news is we'll have an extra day at home to do some playgroups. Two weeks ago Dr. Filipovich said we could cut back the photopheresis treatments from three times a week to two. So our new routine is we leave early Wednesday morning and arrive in Cincy around noon for photo treatment and three other infusions. We usually get out of the hospital around 8pm, just in time to get back to the hotel for bed. Then we're back up at 6:00am to be back at the hospital for another photo treatment and to finish any infusions that didn't get done the day before. Then we head back for home. It's a grueling schedule for Jacob - lots of hours in the car and even more hours sitting in a hospital bed. He continues to face his situation with joy and the occasional melt down. (but who could blame him?) This week will be very interesting as Justy will be coming along to Cincinnati with us. Both sets of grandparents are out of town and I've been wanting to take Justy so he can see what "Mommy and Jacob going to Cincy" is all about. Also, all the nurses and doctors know about Justy and are excited to meet him. Please say an extra prayer for us - this could be great fun or it could be something I will NEVER do again???

And I've saved the best for last...

We had the most AWESOME weekend ever and all thanks to Aunt Rebecca. Last year when Jacob was in the hospital Aunt Rebecca made a promise that she would take Jacob to a Wiggles concert. Well a few months ago Jacob reminded her of that promise and did she ever make good on it. She found a Wiggles concert at State College in PA, flew home special from California and lined up all kinds of special treats for an absolutely spectacular evening. When we arrived we drove the van to a special reserved parking lot. Up above we could see the lines of folks waiting to get into the door. We entered through a side door where we were greeted by a gentleman in a tuxedo that handed the envelope of tickets to Rebecca. Seconds later we were escorted onto a "secret" back elevator that took us right to our private viewing booth. It was huge and filled with chairs, we promtly stacked most all of the chairs to make room for our dance floor. Moments after we arrived at our booth there was a knock on the door and who do you think should enter? Oh, just CAPTAIN FEATHERSWORD! The boys were so excited. (Aunt Rebecca - you ROCK!) After he left Aunt Rebecca treated us to some good eats and then the concert started. It was incredible and boys absolutely LOVED it. We danced and sang our hearts out. Then in the middle of the concert Captain Feathersword came out to the stage by himself and told everyone he had met a special friend, Jacob Brown, before the show and the huge spotlight was turned on our booth. It was truly overwhelming and the boys haven't stopped talking about it. So Aunt Rebecca...THANK YOU, THANK YOU, THANK YOU! I'll try to post some pictures soon.

Thanks for checking in on us.

Home sweet home

cure4treebeard@gmail.com — Sat, 25 Oct 2008 17:25:00 GMT

This morning we all woke up in the same house. Very sweet.

Jodi and JT limped home Wednesday night and Jodi was in bad shape. After some real sleep at home and some homemade food (thank you to those who have fed us recently!) she seems to be getting back onto her feet. JT still has a nasty cough, esp. at night, and we nearly had a temperature situation this morning, but we're hoping to spend the weekend together for once. We all need it.

Pre-school will have to wait until a later time. We're disappointed because both boys were learning so much and enjoying the company of other kids but our doctor agreed wholeheartedly - it's simply too much risk at this point. Spending so much time in the hospital is regress, not progress. Hopefully we can try again in the spring after the cold/flu season; by that time, perhaps JT will be off the huge doses of steroids that are keeping him so immunocompromised.

Thank God, the doctor said swim lessons are still a go. The four of us hit the YMCA last night for an open swim, and the boys jumped off the side of the pool with some other kids, so that's still a new opportunity for them that is very exciting.

Really good news - JT's skin is better. We don't know if it's the extra steroids they gave him during his hospitalization or whether the photophersis is finally bringing the healing we've hoped for, but suddenly there's a big difference. We're so happy that the hard scar tissue is softening, that he's starting to look more like himself.

This last hospital stay was hard. Thank you so much to our family and friends who made sure that Justy was well cared for, that we were able to arrange transportation, that our house was cleaned and ready for JT's homecoming. We couldn't have done it without you.

Please keep praying for us, especially for JT, and most especially that he stays out of the hospital, that we can all enjoy some peace and rest together at home. Thank you.

Daddy in for the weekend

cure4treebeard@gmail.com — Sat, 18 Oct 2008 23:31:00 GMT

Brian here in Cincinnati. Here's the scoop:

JT is a whole lot better than when I left here last Monday. He's breathing okay and he's been fever-free for 48 hours so the doctor discontinued antibiotics this morning. The allergic reaction he experienced yesterday (presumably from the IVIG infusion) has abated. His white blood cell count jumped way up after the GCF infusion. He's tolerating his feeds well but still experiencing D when he sits down on the toilet. The next time he goes they want a culture. His coughing fits are troubling and they're violent when he's in the midst of one. The doctor told me today that the cough would linger after the other symptoms have subsided.

Jodi has been feeling terrible. She headed off to the Hannaford Suites last night after I arrived and I hoped that she would feel much better after a night's rest. She didn't. So she hit a Cincy Urgent Care center this afternoon to make sure that her throat pain wasn't strep - it's not. What's currently making her so miserable is the same thing JT has been fighting. It's a nasty virus and I'm washing my hands like crazy trying to dodge the bullet.

The current plan is for me to rent a car tomorrow and head back towards home. JT will get blood tomorrow to ready him for photopheresis Monday. After Monday's treatment he'll hopefully be released to spend the night at the Hannaford Suites. Of course it will be back to the hospital Tuesday and Wednesday but, God willing, they should be free to head for home Wednesday night. Please pray that this all works out, that Jodi and JT feel stronger every day, and that we don't have to do this routine again anytime soon. Thank you.

Better Morning

cure4treebeard@gmail.com — Fri, 17 Oct 2008 16:11:00 GMT

For the first time in several days JT woke me up by saying, "Good morning mommy." He had gotten unhooked from the IV pole for the first time since he arrived and had come to sleep next to me on the pull out couch. He hopped out of bed and acted a little crazy and was seeming his old self. But a half hour later he started really complaining that his throat hurt him. I gave him some tylenol and benedryl and he's a little more comfortable now. He still has coughing fits about every half hour, which can't help his throat.

We just finished rounds with the team and the plan at this point is for a Sunday discharge. Clinically Jacob's doing better, but his white blood count dropped to 1.0 this morning. They are going to give him a drug to help stimulate his WBC count today. His blood cultures remain negative so that is good. He's tolerating his feeds as well. Brian is coming tonight to relieve me and I'm going to stay in our home away from home (Hannaford Suites) for the weekend and try to get better. They are working on lining up JT's photopheresis for Monday, Tuesday, Wednesday next week and we'll just stay in Cincy until then and avoid an extra trip in the car.

Justy will stay with my dad and Charlene this weekend. What we do next week will depend on whether we are still going to keep the boys in preschool or not. Brian and I are really, really bummed about this. We haven't had a chance to thoroughly discuss the issue yet, but one thing is true - we didn't have these viral issues before preschool. This is no way for our family to live. JT is really starting to dislike hospital living and i don't blame him. I don't care for it either. And then there's Justy. Of course he's in great hands with our parents, but I miss him terribly. We are so blessed that he is so easy going and happy to be wherever he is. And then there's Brian and me. Well, we haven't had a real conversation that didn't include medical terminology and who's watching Justy and how's he getting there in weeks. This crazy schedule is not so great for our marriage either. I miss my husband, I miss my family being together, I miss being in the comforts of my own home. Can you tell I don't feel very well? Sorry for the complaining. I've just been feeling a little down about all of it and know that we all need to just press through it. Paul's words that I've learned the secret of being content in any situation, whether in plenty or in want are fresh in my mind today.

Please continue to pray for us. We're grateful.

More Fevers

cure4treebeard@gmail.com — Thu, 16 Oct 2008 16:19:00 GMT

Sorry I didn't update yesterday, but the news would have changed today anyway. Yesterday Jacob improved greatly. We were up playing games, building blocks and watching shows. He had been fever free and his cultures were still negative so they stopped the antibiotics and had us set to head home on Friday.

Well, last night that all changed. At around 4am he woke me saying he was going to throw up. When I felt him he was burning up with a fever of 38.7 c. We immediately gave tylenol, redrew cultures and restarted the antibiotics. No more discharge for us on Friday.

On top of all this I think I have what Jacob has. The plan is for Brian to releive me tomorrow evening so I can head home for a day of rest.

Jacob is still sleeping. He feels really crappy. Please keep us in your prayers. Thanks.

Positive for parainfluenza - croup

cure4treebeard@gmail.com — Wed, 15 Oct 2008 02:26:00 GMT

Well, shortly after my last blog update I talked to Brian again and Jacob had taken a turn for the worse. His fever came back and his oxygen levels dropped again, requiring blow-by oxygen to be restarted. Brian wanted to prepare me for what I would find when I got to Cicny and told me that this was the sickest he's seen our son since the actual transplant days.

When I arrived Jacob couldn't talk, only mouth words. He had a piercing bark like cough and seemed to struggle with each breath he took. His heart rate was racing at 150-160. His oxygen level was still only 94%, despite the added oxygen. His face winced with each cough and swallow. It was a pathetic sight. Brian had just found out that Jacob tested positive for the parainfluenza virus and that he had croup. They had ordered a CAT scan of his lungs as well because they were concerned about a fungal infection or pnemonia. The scan was cancelled for the night because Jacob wasn't going to be able to keep the contrast down that they needed to perform the test. They would reschedule in the morning if they could.

Not only did Jacob look rough when I arrived, but Brian too. I got to the hospital around 8pm and Brian got on the road to head home around 9pm. He hadn't had any sleep the night before and now was looking at a 5 and a half hour drive into the wee hours of the night. After stopping to pick up Justy at my dad's in akron, Brian pulled in to our house around 3am, only to be greeted by a locked house and no key to get in. Ended up my resourceful husband got a ladder out of the barn and climbed in through Justy's window. Not what he needed. He had to turn around and be at school by 7:20am and then he had to work the cross country meets after school and wouldn't be back home until 7pm. I talked with him briefly then and he was turning off the phones and heading straight to bed. He's pretty amazing and sacrafices a lot to keep our family going.

Jacob and I had a pretty rough night too. His coughing kept him up moaning much of the night and he just couldn't get comfortable. His fever finally went away and at 5am he asked if we could play blocks together. That was a good sign. And sure enough in the morning he started to do a lot better. His heart rate was back to normal and his oxygen levels were good around 96-98% with the blow by oxygen most of the time not even near his face. When the doctors rounded in the morning they were pleased with how he was doing and felt that the CAT scan was not necessary because the croup really explains all the symptoms he was having. The only concern is getting his IGG level up a little higher to help prevent the virus from getting worse or turning into something else more serious. It's 11pm and he's currently getting a subcutaneous dose of IGG (antibodies from 40,000 different people) He's fast asleep and I"m heading there too. I'll post tomorrow with more info. Thanks for the prayers and for checking on us.

Arrived safely and fever is now gone

cure4treebeard@gmail.com — Mon, 13 Oct 2008 15:48:00 GMT

Just wanted to let everyone know that Brian and JT made it safely to Cincinnati last night. It was a long night in the ER and then they finally got admitted to the BMT unit about 6am. They drew all kinds of blood and did a chest x-ray, which came back clear. Jacob had a fever through the night but is fever free this morning. He's been sleeping ever since they got to the room. His heart rate has been elevated, reflecting infection and his white blood cell count jumped from 3.5 last Thursday to 13.5 yesterday, which also reflects that he is fighting some type of infection. We're not sure yet if it is bacterial or viral. If it is viral it will take him a lot longer than a child with a working immune system to kick it. Either way, Jacob is stable - not requiring oxygen- and for that we are thankful. When I spoke with Brian the doctors had not yet rounded on Jacob so we don't know the plan yet. Otherwise, Justice and I will be heading out soon. I'll drop him off at my dad and charlene's house and then head to Cincy to relieve Brian so he can go to school tomorrow. He'll stop and pick up Justy on his way back home so he can have a more normal week at home and go to preschool.

This is the second time in a month that Jacob's had to be hospitalized and I'm wondering what the docs will say about him still attending preschool. It's been so good for him socially that it will really bum me out if he can't go. Not to mention, the boys will both be crushed because they really love school. If Jacob can't go that most likely will mean that Justice can't go either. We'll see.

Thanks for all the prayers.