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Friday, March 12, 2010 5:51 AM CST YEE HAW!!!! We are home!!! got in at about 9pm last night....didnt get to bed until about 12am though!! Zack was so excited to be home he wanted to sit in his "egg chair" and play a little gamecube!! He needed meds so I had to make something for him to eat before any of those could be taken, then we did the meds (and there is alot more right now) then a nebulizer treatment and finally off to bed!! Its going to be a little hectic for awhile until all of his counts are up and stable. He is going to be going for weekly bloodwork (yuck) and if his counts show signs of going the other way then of course it will be more frequent and also more then likely back down to Boston!! But i honestly cant believe that that is going to happen, he has made great progress for the last 3-4 days. He is still at a very fragile state but not critical so everyone agrees that home is the best place to be....i think it helps that basically i am his home health nurse and they trust that lloyd and i will do what needs to be done for him!!!! The extra meds are alot! He is on alot of enzyme replacements right now and i am sure that once he gets back into his routine at home and now that he is starting to feel better in general that his apetite will return and most of those will be flushed!!!! His kidneys and blood pressure are still not great but we have the renal doc in our back pocket and he is AMAZING!!
everything is trending in the right direction otherwise they def wouldnt have let us leave. We are all so thankful for the doctors that cared for Zack this time and got him back on the road to recovery once again! Most of all we thank God for keeping his hands on Zack. God is good....dont ever lose your faith I have learned that along time ago.
Wednesday, March 10, 2010 10:41 AM CST Zack is starting to feel MUCH better!! For the last two days his numbers have been looking good better then ever! He was able to stop the anitbiotic for the bacterial infection last night!! He is on quite a few enzyme suppliments but that should change as his appetite comes back and he can get back to his normal diet, A&E pizza, steak, and S&V chips! LOL....It really looks like we WILL be out of here on friday!! fingers crossed that everything stays going as good as it is today!! He misses his cats and his bed!! Which i know that some of you already now that missing his bed is kind of funny because he sleeps in ours most of the time because he hates his (its his old hospital bed) So as soon as we get home the plan is to get the boy a double bed!!! I am sure that we will be makinga few trips down for a while for check ups and also having to go into EMMC for more frequent blood draws but as long as we can get out of Boston and back to Maine we will take it. okay all is good news really. I will b on here tomorrow with hopefulley more of the same!!
Sunday, March 7, 2010 6:23 AM CST okay iam going to try this again. Yesterday i had this comp on all day and any spare second i had i would continue to write on his page. When i finally finished i hit preview the page and the whole thing expired! So fingers crossed this will work today and i can give everyone the news on our Zack.
The night of feb 24 Zack had a fever of 102.9, the next morning we tookk him into the doctors for blood work and cultures. Early the next morning he had another fever this one of 103.7. I called the doctors office to see if anything had come back yet and to let them know how he made it thru the night. They called back before they even got my msg to let me know that he had grown a bacteria and needed to come in to start iv antibiotics. I called our Boston transplant team to let them know what was going on and that we were totally comfortable with staying here in Maine and treating this bacterial infection.
So friday the 26th we walk into the ICU of EMMC only because the regular floor was full and we needed to get started on the meds asap. The plan was to be going to the floor probably the next day or as soon as a private room was available. Zack had no other symptoms of being sick as i said we walked into the hospital and he hadnt had a fever since that morning. He did have a terrible achey jaw/teeth, which we had seen the dentist the week before to make sure there was nothing was going on there. Everything with his teeth are fine except he has a few that need to b pulled because they are baby teeth and his adult teeth havent pushed them out, and that he has bit the inside of his cheek so much that he has a pretty good canker going on. But that was the only pain that he had.
Once we got settled in our room the team of peds doctors came into talk to Zack and talk about the plan of attack. They took some more cultures and blood and also did a couple of swabs in the nose and mouth. They gave him a dose of toradol for his mouth pain, which is a beefed up ibuprofen.
By 9pm Zack was coughing uncontrolably and his whole body was in pain. I asked if we could get something else for pain cause the beefed up ibuprofen was obviously not working! So they did, they gave him a dose of fentanyl. That seemed to help some. Over night he progressivly got worse, he said that his hands felt like they were on fire and his body hurt so much that if you touched him he would just moune in pain. By morning he had become unable to move on his own and he was not speaking and was unable to keep his eyes open for longer then a min or two. His breathing started to become more labored and we started nebs to clear out some of the junk that you could hear in there. His morning labs came back and that is when everything just started to spiral really out of control. His white cell count, platlets, red cell count all were dropping. His kidneys were started to show signs of disfunction and his blood pressure was dropping plus alot of his other numbers were way out of wack!
LLoyd and I are like what the heck has happend did he get something that he has had a terrible reaction to.
The RSV culture had come back positive!! So now the poor kid has another battle ahead of him. Actually having this positive culture made a little more sense why he was getting so sick so fast.....his poor body that is already immune suppressed has just gotten a x2 hit of illness.
The team in Bangor was in constant contact with Deb Boyer who is Zacks transplant doc in Boston. Even though things were looking crappy they still felt like they could get ahold of it especially w/the new diagnosis of rsv....kind of making sense why the blood counts were so wacked and that as he got better so would everthing else.
Zack had a turn around mid Sat afternoon and things looked better. He sat up and watched a little tv with his dad, and drank a little but still wasnt the old zack. Sat night was a pretty quiet night, they had put him on a fentynl drip to help get control of that pain and it did help him be able to get comfortable and sleep most of the night. The whole team of doctors (Bangor and Boston) were still okay with us being in bangor. His kidneys were still getting worse but they started this drug called dopamine, its usually used to bring up blood pressure (which Zacks was still low) but they wanted to try it to help get better blood flow to his kidneys. They had already given him a stress dose of steroids to help with his BP which it did some. Well the dopamine didnt really do anything so they tried a few other meds. Nothing was making a difference. Sunday he seemed to be about the same, no worse, at leastt not to look at him.
They decided to give him his regular infusion of IVIG it was about 2 weeks early but his numbers were down so they thought giving him a boost of immunity wouldnt hurt him. So they cutt off his pain drip and the 4 hour infusion began. He did get some oxycodon which i guess helped with the pain but it didnt seem to last long enough, but i was a little wary about giving him more because he had been so stinkin "droned out" the last thing i wanted to do was add insult to injury. But he hurt so much that there really wasnt much waiting around to see if he would liven up. He was doing about the same when they started but by the end of his infusion he was totally out of it again. His eyes were rolling into the back of his head he couldnt speak and when he did it was strange stuff.
okay i need to go get some stuff done with Zack and i dont want to loose this page, i will finish later today.....
ok i am back.....so where was i? oh yeah on Sunday afternoon right...okay as i read this all i am thinking to myself why in the heck didnt we just go to Boston then?? But still everyone (including us) were still okay with the long distance help from Boston and the ICU docs in Bangor were still okay and hopeing that things would take a turn throughout the night.
Well Monday things werent worse but he was still very lathargic, didnt care about eating, BUT the pain was pretty much gone. We gave neb treatments every 2 hours throughout the night and his breathing pattern had changed...I am not sure if it was for the better but it did seem that he wasnt so labored in his breathing but now it was like a big inhale and the night before he was doing really long and hard exhale breaths. So once he was awake and somewhat alert we could all see that things were actually starting to go the other way and we needed to get to Boston. The EMMC ICU docs had basically exhausted the options with and without Bostons help. In the morninng it wasnt so desperate but by the early afternoon the decision to be Life Flighted had been made and we were moving to the ICU at Boston Childrens.....
I consider myself a pretty strong woman and i often say that nothing really will surprise me, but there is nothing more depilitating then the helplessness feeling that comes over you when everything you know as a parent cant help your child.
Zack did very well with the trip and he stayed stable the whole way...he actutally was able to take a little nap, which was good because he had been so "messed" with all morning that he was exhausted.
So we got to our room in the icu and the docs were already standing and waiting for Mr Man!! Dr. Macmannas was there and he was a doc that took care of Zack when we were here in 07-08. Zack was actually the best i had seen him in 2 days he was more alert and verbal and he actually had said, Mom i am thirsty and hungry. Of course he would fall right back asleep within 2 min but it was actually an improvment, he was making sense when he did speak. When Dr. McMannas got up close to him and was talking he said Now Zack your back here in Boston and i know that you have a couple of things that are making you feel pretty crumby and were gonna figure it out and get you back to Maine....ZAck kind of rolled his eyes and said, oh yeah says who???? your just one doctor! At first i was like oh my word Zack that was kinda mean but the doc looked at me and said Michele thats the old Zack spunk I know that we are gonna get him better.
So 3 days in the ICU things continued to get better! There is such a huge team of everykind of specialist imaginable and the doctors here are here to deal with complex cases...thats what they live to do.
So once things started to stable off the decision was to move us up to the regular transplant floor.
He still has alot of issues but he isnt in such a critical place. We have a long way to go before he will get to come home. I was hopeing that once his antibiotics were done (15 days) we would be coming home, but he is now being followed by a new team. Hematology. Zacks blood cell counts, his platlets, white and red cells and cells in that nature are not coming up and he has had a couple of infusions of whole blood and platlets and still not holding on to them. So there are a bunch of test that need to be done to rule some things out,and also to get to the bottom of why they are so low. He is also being followed by the Renal Team because of his kidney disfuntion is still not where it needs to be and his bp is still high. Also getting over the RSV is another thing and getting him to eat which in turn will hopefully improve all his other electrolyt issues... the most obvious reason for all the issues going on is the fact that his body took a massive hit with at least 2 infections at one time....too much for a healthy boy to take say nothing about one that hasnt got awhole lot of immunity to fight with. He continues to have good and bad days and we really cant look at the bad days as set backs(funny how you forget little things like that)
I think he is going to have a Bone Marrow Aspiration and a feeding tube placed tomorrow or the next day. He is really upset about being here and all the crap that he needs to take and go thru. But I know that God has his hands on him and gives him the strenth to do and to hear what the docs ask of him, even when it is almost impossible to try. He is a strong little boy and i pray every day that he continues to get the strength he needs to keep up this fight and to continue to look at life as a gift not as a burden as i know he must feel when things get to a point like this....maybe he dosnt and its just me feeling it for him, cause i will tell you eventhough most of the time i do consider myself a pretty strong woman but there is nothing that will depilitate you any faster then being unable to make things better for your child.
Okay i am going to close this page now and hopefully get back on here with in the next couple of days.
Wednesday, December 2, 2009 9:23 AM CST Its been along time since we have been on here so the update may be lengthy!! Right now Zack is in the hospital Boston Childrens recieving a high dose of steroids for the next 3 days...on his last lung biopsy it showed chronic rejection. the hope is that this treatment will stop the progression. Besides the findings on the biospy he is doing very well. He started school this fall...for the first time in 7 years he actually attended the school! He absolutly LOVES it and loves interacting with the other kids. We have pulled him out during the H1N1 but hope ti get back into the routine after the holidays. We got that bike that we talked about and he was able to ride it some. He still struggles with his endurance but it is coming along everyday. Being in the hospital dosent help but we have been very lucky not to have many overnight stays. Our trips for checkups at Boston average about every 3 weeks still...which STINKS but you do what you need to do no matter what and make the best of it!
Thats what keeps us all in check!! Zack got his fishing and hunting license this year and he and dad did both. He really loves fishing he caught a few fish not sure what they were but it didt matter to him it was all about just being able to do it!! He wanted so badly to be able to participate in the Kids Fun Run in NYC this Novemeber but unfortunally he just didnt get to where he really needed to be (endurance wise) so we are praying for next year! I thank everyone that has been checking in and apologize for not coming and updating before now.....we have a Facebook page so come check us out there too if you want. God Bless
Tuesday, April 14, 2009 10:26 AM CDT Well we are into spring in Maine again.....Zack is doing quite well. He has undergone about 7 bronchoscopies since his transplant, however most have been without any findings. We have not had to deal with any type of rejection, we have had a few pretty big infections but Zack has fought them off like a champ!!! He was able to have cataract surgery this winter and now sees everything wonderfully. Our next adventure is he is having his hearing repaird surgically. We will be headed down in two weeks. The docs will do his right ear then in about 6-8 weeks do the other, right now his hearing is terrible after it should be almost 100%!!!!
Zack no longer uses a wheelchair to get around! He still goes to physical therapy 2x week and is improving everyday. he is still alot weaker then he should be but I believe that summer will be a blessing to him and he will be able to get out and ride a bike!!!!!! Yes I said it a bike he hasnt had a bike in more then 6 years! Well gotta go just thought it was time to drop an update....I also added a few new pics....thank you all for your thoughts and prayers....
Thursday, March 5, 2009 2:35 PM CST Tomorrow the Town Report for Corinth comes out, and guess what, Wanda requested that it be dedicated to Zack. Below is the actual letter that was submitted but unfortunatly it was too long for the page allowed for the dedication. When I read this dedication letter I was in tears. Its amazing to me that such a young boy can make such a big impact on so many people. One very important lesson has been taught to me by Zack throughout all of this. ENJOY WHAT YOU HAVE BUT DONT TAKE IT FOR GRANTED. Zack has always been a Hero in our eyes. Its an honor to know that there are members of his community that feel the same way. Thank you Wanda I love you.
Where There Is Love, There Are Miracles”
On behalf of the citizens of the Town of Corinth we dedicate this years town report to a truly courageous young boy who fit’s the characteristics of being a HERO. Often, we as adults as well as our children take for granted our everyday life, but not Zachery. He looks forward to each new day, with every breath that he takes. He also thanks God for that one family, that one unselfish, very giving human being that gave him the chance, the chance to take that first breath without any machines or tubes doing it for him. A chance to just be a normal child.
Michele and Lloyd Nickerson welcomed their baby boy into this world on October 6, 1997. When he was 6 months old they received the dreadful news that their child had been diagnosed with Sever Combined Immune Deficiency (SCIDS). From that moment on, their hearts and Zacks will to survive have been put to the test.
It was April of 1998 that the Nickerson family entered that long journey which consisted of endless hospital stays, th“e sleepless days and nights, and the dreadful tests results.
In June of 1998 Zachery was taken to New York to receive his first bone marrow transplant. The one thing at the time in their favor was that Lloyd, his father, was the donor.
As the years passed, Zack was still fighting an uphill battle. Masks and gowns, bleach and antibacterial soap had moved in with Zack, whether he was at home or his home away from home, the hospital. Zack was known as, “The Child that Lived in a Bubble.” Various roadblocks due to illnesses from the side effects of the chemotherapy and medications held him back from leading that everyday life that we all take for granted.
In 2005 he was diagnosed with pulmonary fibrosis. In November of 2007, the clock started to tick and he went into complete respiratory failure. It was then that Zacks mission was to become eligible to be a name on the lung transplant list. Once again, Zack won the battle and proved his strength and by the end of February of 2008, Zack’s name was placed on the list.
In March of 2008 the pager went off and the phone started to ring and everyones prayers were answered. On March 23, 2008 Zachery Nickerson was given his new lungs. Another chance to be a kid. And to this day he has shown us his undying strength and gratitude. To all of us he is truly a HERO.
We now look forward to seeing Zachery out on the ball field this spring rounding the bases and hitting that long overdue home run. Because of Zachery we now believe that anything is possible. Once a child sets a goal and has the necessary love and support behind them, the sky is the limit.
WE LOVE YOU ZACK AND ARE VERY PROUD OF YOU!!!!! We feel that with your positive attitude and undying will to fight on, you have set forth a great example for everyone to follow. Every child should be given a chance, a chance to just simply be a kid.
Now click on my guestbook and leave me a msg. Thanks Zack
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Wednesday, March 4, 2009 9:52 PM CST I know that alot of time has gone by and probalby many of you have stopped by to see whats going on and got frustrated to see no updates. Sorry. Honestly only in the last few months have things started to get a little less crazy. Zack has been doing quite well. We have made alot of trips back to Boston for mostly routine stuff. He most recently had cataract surgery on both eyes and now sees perfect. He will always need glasses for reading but the hazy, super light sensitivity eyes are gone. Now we are going to be heading down for ear surgery. Over the years with so many infections and the tumors in his ears has given him severe hearing loss in both ears...good news is that with surgery it should be restored to 100 He continues to get stronger every day. We no longer even bring the wheelchair with us. Which is huge I will tell you because that chair or stroller has been with us for the last 4 years. He feels pretty proud of himself, as he should that he can walk into a store or someones house with out even needing a hand. We are at our year anniversary!!!! I really cant believe it. Its been a very busy year I have to say. Zack has finally been able to start his home tutor again. He has school 4 days a week it is only 6 hours, but hopefully by mid spring he will be in school at least 2 hours a day!!!! He really wants that. But right now he is way to immuno- suppresed to be in a school setting.
We have had no signs of infection in his new lungs or rejection. When we were about 3 months out he has 2 really bad infections in his lungs and they lasted almost 4 months and the treatment that he needed to do were really rough but we made it through and everything since has been okay. We have been told that the farther out we get the less chance of rejection but Zack has a higher risk of infection because he is so immunosuppressed. I know that he is going to be fine.
Lloyd and I wrote a letter to the donor family. I have written it over and over but have never been satisfied with what it said...Lloyd came home the other day with one and I loved it, there are just a few things that need to be added and I am mailing it off to the Donate Life Organization and they will forward it on to the family. Its then up to them if they want to respond or not, honestly I dont think we will hear anything for a while. I dont know for sure but that is just my feeling. Its very easy to say how happy we are that Zack got his new lungs but it just isnt that simple.
Well I am going to bed...Zack is sound asleep, he was very tired tonight, he and I went to see Bob Marley at Hampden High School tonight. It is so good to see him able to laugh again like he use to. He just loves that guy. okay really I am going to bed. I will be updating again very soon....promise.
Thank you for all of your continued thoughts and prayers.
Saturday, June 14, 2008 9:57 AM CDT I cant believe that we have been home for a month. We are so very busy. We are making just about weekly trips to Boston for check-ups. We have had our share of stuggles but all in all Zack is doing well.We are headed to Boston on Monday for another bronchoscopy and to see if he will need a stint in his right airway. Last week they had to do an emergency bronch and found that his airway was all but a pinhole closed so they dialated the best they could and did some other test to get him "measured" for a stint. It is fairly common to have this sort of thing happen, it dosent make it any easier to handle but at least they can fix the problem. It closed up because of scar tissue growing around were the stitches are inside.
We all are so happy to be home I can tell you that. We have our towns annual "Old Home Days Festivities next Sat. and guess who is going to be Grand Marshall of the Parade....Yeah mister popular himself. He is pretty proud of that. The first thing he said when they asked him was arent you supposed to be like 100 years old to do that? Hes crazy.
He is having a tough time walking still but we hope with some new braces and some extra stretches and therapy added into his routine that it will keep getting easier. Were also having a hard time with him tollerating his tube feeds and also having any type of appetite. I am struggling with the transplant docs to let him start Megase which is a great appetite stimulant for him We know it works for him but they think that its going to effect his sugar his liver and stunt his GROWTH!! I have to laugh at the last thing because over the years this kid has been given more crap that has been a probability of stunting his growth then I can count so when they say that I say I think not eating will stunt growth pretty fast too dont ya think. Oh well anyone that has had to fight the fight with a doc knows what I am up against....but I wont give up there has got to be something else out there if thy are so unwilling to let me try that. Anyway back to better stuff. We are probalby headed up Ashland to my best friends house over the 4th. Lloyd is on vacation that week so we want to head somewhere in our camper and there site if FREE!!! We have been asked by Lainie Witt-Colson to do an interview this summer. So be looking for the super star once agian on the news.
In the last month Zack has gone to the Monster Truck Show at Speedway 95, has gone to a graduation party, a birthday party of his friend Gages, had his buddy Grant over for a play day and both of his cousins have spent the night!!!! Pretty full, and oh yes we have gone on our Jeeps rides!
I want to thank everyone once again for keeping us all in your thoughts and prayers. We Love you all for that.
Saturday, April 5, 2008 12:16 AM CDT I have been trying to get to this entry for awhile now.
As you know Zack got his new lungs on March 22. He went into the OR at 12:30am until 9am. The surgery went very well and the docs have all said that his "new lungs" could not have been any better of a match.
He came out of the surgery with 4 chest tubes which they are all gone now, the last one was pulled out this past Monday. He now has just the bandages over the sites. They took his trach out durning surgery and put an endotrachial tube in (which is the tube that goes from your mouth into his lungs) He was able to get that taken out and the trach back in last Thursday. He had to go to the OR for that because his trach site had actually healed up! Alot of people were surprised about that but Lloyd and I were like "we knew this would happen" we kept asking the docs if it could heal up and they were like oh no not in this short of a time, it would be very very unlikely for that site to heal. WELL you dont know ZAck then because if its unlikely then count on it happening. So its actually been passed on that yes indead a trach site can heal and heal very nicely I might add in a very short time! So there was some pretty big concern about taking ZAck down to OR but after about 2 hours of discussion in the hallway mind you because one of the docs at very last min decided that she wasnt all that comfortable moving a kid post transplant on the high vent settings that he was on and taking then sedating him, but again after everyone was happy he went down and did very well they were actually able to get the first of many bronchoscopies done, and it looked very nice by the way. So once his new trach was in the bronch was done he was sent down to the 7th floor and this is where we will remain until he no longer needs the vent support.
He had to get a couple of new central lines placed so he could get the ones that were in his groin out. That way we can get him up and moving once the sedation is off. It took them quite a while 3 hours actually to get the line in because he just has crumby veins but they got it in and they actually had put in a long iv line as well. It was put only because they had tried for 2 hours to get it in as a central line and wasnt able to so they left it in as a long perifial line (just a fancy name for an iv line) but its nice to have an extra line so if they need it he doesnt need to worry about them trying to stick him. We are probably going to be able to deacsess his port today because we are changing some of his meds to oral and also he is getting off meds all together.
He is getting physical therapy 2x a day we cant do too much with him rightnnow only because he is still hooked up to so many lines its tough getting him out of bed, but they do do alot of stuff and chest pt with him. This is HUGE once again to his recovery. We were asked today by one of the docs if we could start doing the pt inbetween when the therapist come we were like heck yeah what ever we can do to get him outta here. So he is going to hate us a bit but he will know that its the best thing for him. He is still pretty weak. But he can do more even now without coughing then he could before.
I think that tomorrow his staples will come out! Lloyd said that he has counted seventy something.
He had to be put on a betablocker med because his heart rate has been going up to a dangerous level. There are a few things that could be causeing. However it looks like its because of the surgery and it should get better in the next few weeks. That is actually probably the best senario it could be. He is responding very well to the meds.
They did another bronchoscopy yesterday and things still are looking good. They said that the right side had some secretions and the left side had a bit of narrowing but nothing concerning because the secretions were clear and the narrowing should fix just buy him getting more healed and stronger.
He has been able to wein the vent down to the settings he was on before so they decided to give him a "sprint" off the vent. (this is when he is only on oxygen through the trach no vent support at all) He did two, one was in the AM for almost two hours and the other was in the late afternoon for another two hours. He did very well with them both. Everything was good until early this morning when he started showing signs of respitory distress, his breathing alot faster and shallow, his heart rate was higher, so they did an x-ray and it showed some level of collapes on the right side. They upped his settings and things are showing a sign of improvment. Hopefully we will be back down onthe "good" settings by tomorrow and will be able to sprint again. They think that it was just too much for him yesterday. He had a bronch, extra sedation for that then two sprints. So the only way to really know what is too much is to kind of push him. So even though its a set back its not too awfully bad. We will just know this for the next time.
Zack is getting ready for his second physical therapy sessions and they are going to do chest pt to try and get that lung opened up.
I am going to try very hard to get on here sooner next time so it wont be so long of and entry. I want to thank eveyone once again for being there for us and all the love and support that is being shown for our family.
In my closing today I wanted to take a moment to remember a friend that sadly lost her life to cancer this week. Robyn was a devoted wife and mother. Her family was her whole world and it showed in how much her kids and husband adored her. She will be so terribly missed by her parents who have always been just "up the road" When I was younger I always looked at her as such a free spirit and thought she was just a real cool girl, she never changed that spirit. You always knew just where you stood with Robyn, no bones about it. She had friends no matter where she was, and she treasured them all. That I believe she got from her dad, who was probably her best friend. Robyns heart was about as big as they come. Please keep them all in your prayers during this heartbreaking time.
Thank you
'till next time
Tuesday, March 25, 2008 5:46 PM CDT Zack continues to hold his own. It is going to be a slow progress. Because his body had conditiond itself to breath small shallow breaths for so long its forgotten how to breath a normal breath, so these new lungs want to do more for him then his brain is allowing right now. Also his old lungs didnt take up much room because they were so damaged by disease so they didnt get much air into them to expand so again his body isnt really ready for his new lungs to take big inhaled breaths because there just isnt enough room right now. The doctors are saying that this will all come and that right now he just needs more vent support and time to condition his body. He has had a lot of fluid on his new lungs so they have been working very hard to get that off and it is staring to show. I have looked at every x-ray since the transplant and I have yet to see his new lungs but today after about the third one I was able to see them and man they look amazing! Well I will get another update in the next day or so.
Thanks everyone for stayin with us. LOve to all
Sunday, March 23, 2008 12:03 AM CDT Okay everyone!
ZACK GOT NEW LUNGS!!!!!!!!!!!!!!!!!!!!!!!!!!!
We got the call Friday at 12:15pm we were flown down by the National Guard and was in his hospital room by 2:50!! He went into the operating room at 12:30am and was back in his room at 9am! The lungs could not have been any better of a match. The old lungs came out without any trouble, the surgeons were very pleased with how the whole thing went and continue to be pleased with how its going. He is very sedated right now but does every once in while open his eyes slightly and move his hands. He tries to talk but we are really not able to figure out what he is saying. He is on some pretty powerful sedation so I think what he is trying to say and what he wants to say isnt really matching! So he is doing well at this point, we have a very long road ahead but hopefully things stay on this path. The doctors have said to us that they know that Zack being in the shape he is in is going to make such a difference in his recovery. So they are very happy that we made the decision to get him stronger before listing him. He was only on the list for 2 weeks. Praise God. Thank you all for checking in and your conitinued thoughts and prayers.
Saturday, February 16, 2008 2:17 PM CST Last week Zack was pretty sick with the taper of morphine. So we went back up and have held for 3 days. He has had a much better week. We will start tomorrow to go down again...slowly.
He continues to get stronger and he actually was able to get on a tricyle the other day and was able to push it with his feet (not pedal bacuase his knees hit the handle bars!) but was pushing it for almost 80'!! Can you believe it?! We use a portable vent and he was out in the hallway. That was actually the first time for him out of this room. NICE
It looks like we will be making the trip to EMMC on tuesday! We will be transported by the critical care ambulance and will be going to the 6th floor rehab at the hospital.
Zack just got up and i need to go because he has rehab soon!
Looking so forward to getting our little man closer to HOME.
Thursday, February 7, 2008 11:28 AM CST Well there has been alot of stuff going on in the last few weeks.
Bottom line is that we are starting to make the plans for Zack to make the trip home! We will be going to EMMC. It is going to be probably another 2 weeks.
He is doing well with his rehab. He has been able to stand (with his walker) for about 30 seconds. He has marched in place for 4 steps and also made 6 steps with assistance. You would think that that would get us on the list but we are yet to get on. We are having the transplant team come by today during Zacks pm pt session so they can see exactly what he is doing. Our hope as always is that we will get listed and get the call before we are in Maine.
I went to the rehab hospital this week to see it for myself. I made it through the tour and I had a open mind going in, because I had been for warned that its old and alot different then what we are use to. We thought our minds were made up and we would head there soon. But the place is not anywhere that Zack needs to go. It is OLD and very depressing. I know in my heart that Zack wouldnt do well or be happy there. So I walked through the door back in Zacks room and Lloyd said what is wrong with you and I said we are going back to Maine!!
Zack still needs aggressive rehab and will need to be in hospital to get that, we also need the time for in home nursing and care to be set up as well. Its going to be alot different at home for all of us for a while but hopefully we will get that phone call soon after we are home.
Zack is now getting of the vent for two, one hour sessions and is only recieving oxygen through his trach. That is another huge move for Zack. He likes it alot because he isnt hooked up to all those tubes and hoses, he just has a small oxygen tube connected to another small device that slides on to his trach. He is actually doing that right now and is sleeping through it!
His upper body is getting stronger by the minute I swear. He is much stronger in his arms and torso then his lower.
WELL he asked last night about Christmas! He got this almost surprised look and asked me, did I miss Christmas? Man I knew that that question was going to come up eventually and I have tried to prepare myself with the perfect explanation but I felt like a deer stuck in the headlights. But we got through it and he knows that when he gets home home, Santa is waiting for a letter from ZAck and he is going to get a special Christmas no matter what the date is. He was a little emotional but I explained to him that he only missed the day December 25 and that Christmas is going to be he can have all his family and freinds together.
Well I need to get busy with our next adventure today. Bath time and trach care!
God Bless
Monday, January 28, 2008 11:25 AM CST here is a quick update. We didnt go get the lap-top so I am still going down to the computer room to do this. Anyway, Zack is continueing to move forward in his recovery. This week we are going to be getting physical therapy 2x a day. Zack isnt to keen on the idea but it needs to happen. We arent pushing him so hard that he is down for the count afterwards, but it is very hard for him. He has actually set at the edge of the bed without assistance for almost 5 min. That is really huge.
We had to change his trach the other morning (emergency) it had a huge "plug" in the end of it and he wasnt able to breath. Then we also find out after an x-ray that the customized trach that ws in there was still to LONG! So the coughs that he is still having may be because the trach isnt the correct size. They have ordered new ones that should be in by tomorrow and he should get it in the next day. He has officially gone to all oral meds (nothing IV) his last IV line was taken out this morning. We still have his port of course if he needs something. He will still be on his infusions which are about 1x a week so we will acsess his port and the same day take it out!!! He is not sure if he is happy about it because he really dosnt like anyone but our nurse Susan up home to acsess his port.
The docs here, Lloyd and myself have decided to stay here in the icu and continue to rehab. Zack has made such progress in the last 2 weeks that making the change to another hospital for only maybe 2 more weeks really isnt worth the whole process. He would have to get to know new people they would have to get to know him and we would also have to come back to this place every week for a check up. Seems like alot of work for a short time especially since he is quite comfortable right where he is. There is enough stuff going on with him that it isnt unreasonable to beleive that we will be here another 2+ weeks and by that time Zack should be strong enough to get on the list and actually go home. We may need to stay at the ICU in Bangor for a bit but that is still up in the air. He will be comeing home with the vent so its all going to be kind of strange when we first get home but we will all get comfortable with the new changes. we always do. Our prayer is that he gets his new lungs ASAP once on the list. Maybe before we get out the door to head home.
Zack had his friends Grant and Gage come visit him this past weekend and it was so good for him. He actually played with his nintendo DS for a while. That was the first time. We had asked him just about everyday and he has been very hesitant to pick it up. He isnt as fast as he once was but hey he is on the right track!!!! I truely believe that him seeing family and friends now is crucial to his recovery and rehab so if anyone has been wondering if they should come now is the time.
Thank you all so much for your continued prayers, thoughts calls, visits, cards and just taken the time to read up on our little man. It is more then I will ever be able to thank in my lifetime. It means more then any of you can imagine. God Bless
Sunday, January 20, 2008 10:30 AM CST Sorry its been so long since I have updated. Its tough because I have to leave Zacks room to get to a computer. We have been talking about getting a lap top (it was the dicussion with Zack before he went into the hospital that Zack wanted one and we would get him one for Christmas) but things have just gotten in the way. It would make it alot eaiser for updates right now thats for sure. So I am thinking that this week we will get a chance to go to Best Buy and get him one! Best Buy is right down the street!
Okay so here is whats going on. Zack got the trach. They put an adult size one in so he would get the biggest diameter tube (more air) but the problem with that was that it was too long and he was unable to sit up because it would trigger a terrible cough. So for 10 while it was healing he basically had to lay flat. The docs changed it after 10 days to a customized trach and he has tollerated it fine. We started going down on the sedation and pain meds. We have a ways to go and he did start to withdrawl some two days ago, so we have slowed down even more. He is able to sit up in the bed some and also turn his head a bit. He is unable to talk right now but they did a swallow study with him three days ago and he is able to talk tiny sips and eat popsicles and pudding if he wants!!! Right now he just wants ice cold water. He did ask for Pepsi for the study and it was like watching someone that had been stranded on the desert getting there first sip. I put the teaspoon up to his lips and he slurpped it in and without even opening his eyes he just gave a big grin and layed his hands to the side of him. You could tell it was like OH MY WORD THAT FELT GREAT!!! Physical therapy has been working with him more now and they have had him sitting upright at the edge of the bed. Its very tough for him and it actually takes 4 people to get him there, but he toughs it out and has picked up his head and has set up without a whole lot of support. The first day that we did it I cried the whole time. Seeing him work so hard to just sit and also knowing that he knows he needs to get through it is some kind of feeling its hard to explain.
We are going to go visit a rehab hospital here in Boston. Its about 15 min away from Childrens. We still have issues that are keeping Zack here in the ICU, but hopefulley within 2-3 more weeks we should be ready to move forward. Rehab and follow-ups will more then likely keep us here another month once we leave Childrens. He is getting stonger and more awake everyday. Once again thank you all for keeping us in your thoughts and most of all prayer.
Tuesday, January 1, 2008 9:57 AM CST Well alot has happend since our last entry. We are still on the vent and have had to go back up on the settings. So the hope for being off has basically gone out the window. He had a very hard time tollerating the change on the 22nd. We had to go up on the sedation drugs to get him back to a comfortable place, so he is basically sleeping most of the time. We have had to except the fact that Zacks lungs are too sick and weak to work on their own so the decision to have a trach put in was made. Zack will be getting a tracheostomy (sp?) on thursday. This is hopefully going to make it possible to get him off the sedation drugs and out of bed to start rehab. He has lost so much muscle, especially in his legs. His poor legs are not any bigger around now then a papertowel roll! He has shown when he is awake enough that he still has some upper body strength (not much but some) any amount is going to help with his rehab. Physicall therapy is the last piece that needs to get cleared for him to get on the transplant list. Right now anyway, we know that everyday there could potentially be something that comes up and poor Zack has to get through. But for now he is still fighting. He had a rough day yesterday. They had to reintubate! His breathing tube was kinked!! It went well but still it is something else that Zack has to fight to recover from. Then they had to put a regular feeding tube in. Which of course they find that Zacks anatomy is a bit odd and end up needing to stick the cathedar 2x into the lining of his stomach before getting it through! So just adding to the risk of potential infection after the procedure. He has been pretty sore so again they upped his drugs. My guess is that its going to be at least another month before he is strong enough to leave this hospital. Once we leave this one there is a chance that we will have to go to a rehab hospital for a while longer (which is still in Boston)
This whole trach is going to be very tough on Zack. Lloyd and I have always tried to involve Zack in everything that is going on with his body. Zack has the right to know and to be able to take the time to think about it and to understand what is happening. Although there has been things that we have had no choice in at least he is given the chance to understand why. So this whole thing is going to happen without him knowing and once we are able to start telling him about it, its aready there. He is so sedated right now that if we did tell him the minute he fell back asleep it would be gone. This is one of the hardest things we have had to do in a long time. We can only listen to what the doctors are all saying and believing that this is going to help him get out of bed and stronger and in the end get him on the transplant list. Thank you all for your continued support, thoughts and prayer.
Saturday, December 22, 2007 10:57 AM CST We have been on the conventional vent now for a week! He continue to go down on the settings and he is tolerating it well. The doctors are saying that with this sort of progress we may be getting off the vent in a week or so. Still there is so many issues that could stop that from happeing, they are not sure his lungs are going to be able to basically work on there own, but just to hear that he is even close enough to be considered is uplifting. He is still very sedated and will continue to be until he is off the vent. They know that he has grown "addicted" to these narcotics and the prosess of getting him off will be tough. Were ready though. Everyday the paralytic drug is leaving his body and he is trying so hard to move more. He is very very weak from that and from the huge dose of steroids he was given 2 weeks ago. The docs have told us that it will take months for him to rehab his muscles out of that trama. We talked to the transplant team about how close are we to getting back on the transplant list and they have said quite close however he needs to be able to get off the vent in order to get the physical therapy it will take to get him to optimal recovery from transplant. Its tough to listen to them tell you that if he cant get off the vent then he isnt a candidate for a transplant, because we are so uncertain if he is going to get off. We have been preped on the possibility of a tracheotomy which may need to happen if we get to a point on the vent that he is not moving able to make anymore progress. Its a hard thing to think about right now because WE KNOW hes going to get off. But if he cant we would need to do that to get him out of bed and into rehab. Thats a ways away and right now we continue to move forward.
He is trying to communicate more and more inbetween the sedation naps! He nods and mouths some words and he is getting annoyed with us if we cant figure out what he is trying to say. Which I love because that has to mean he is getting better. He actually mouthed to me the other day to "never mind" when I couldnt figure something out he was saying. Sometimes he just falls back asleep. He is trying very hard to pick up his hands and touch his white blankie. Its very hard right now because it takes all of his strength to do that and it wipes him out. So he is still sedated most of the time which is really how it needs to be to rest comfortably. Even though we love it when he is awake we know rest is key.
Again we want to thank everyone for there love and support and continuing prayer. Its so good to hear from all our friends and I am reading to Zack each entry at his bedside and I see smiles after everyone. Thank you all.
Friday, December 14, 2007 2:39 PM CST Zacks 3-D heart scan has been read and remarkably there was no sign of the damage that the doctors had prepared us for. We gave this little man to god and god worked his miracle. There is no doubt in my mind that that first scan showed something, there is no way that the doctors would tell us that kind on news without being quite certain what the heck they were seeing. Reguardless his heart is strong and he has been cleared by cardiology for transplant. Bless God.
Last friday they tried to move Zack to the conventional vent but Zack was no where close to being able to tolerate the change it lasted maybe 5 min if that. It was a bit of a set back and for the next 5 days we were unable to go down on the vent at all. He had alot of other stuff going on as well. They were chasing his blood pressure it was either too high or too low. The same thing with his insulin. His kidneys and liver function was starting to show stress as well. He just has had a really rough time.
On Sunday night they started a drug called Remacade(sp?) it is used to help inflamation associated with arthritis, its also been used for treatment in GI issues, also some pulmonary diseases (not pumonary fibrosis) and since then we have been making quite a bit of progress. The docs are not sure if its the remicade or if it was just the extra time that he may have neeeded but reguardless we have been able to inch forward. He was taken off the drug that has had him paralyzed. (this is done once a patient gets to a certain point in there stability and they wait for a twitch or a move and then they start it agian) its a way to see if they are still "in there" basically. So they took him off on Monday and for over 36 hours we saw nothing, then on Thursday they tried to convert him over to the conventional and he started a little bit of movement. They asked him if he was in pain and he ever so slightly nodded his head no and then they asked him if he wanted to see mom and he nodded yes. Well I will tell you when the nurse come over and told me that Zack wanted to see me I just about fell on the floor I took of and didnt even tell Lloyd what was going on. I was crying when Lloyd came into the room tears of joy that were as big as pennies, he said what is wrong and I said go to his other side and ask him to sqeeze your hand....he looked at me like I had lost my mind, but he did and Zack sqeezed his finger. It was a weak weak sqeeze but it was something. They decided not to put the paralytic back on and he has tolerated the tube remarkably well. He is still on sedation but he opens his eyes about 3/4 way and he can answer almost anything you ask him by nodding. When they have to give him more sedation he nods no because he doesnt want to go back to sleep. Everyone has been amazed at his strength and courage. We have been told by many nurses that most kids are restrained when they wake up on hi-fi because its not comfortable at all and they are very scared of what going on. We have been right beside Zack every moment and continue to tell him to be strong and stay brave and not to be scared and that we are so very proud of him and that he is safe and there are so many good people taking care of him, and that there thoughts and prayeres alll around him. The good lord is working his miracle. He was still unable to convert yesterday.
The doctors tried again this morning to convert and was sucsessfull. He has been on the conventional as of 12pm. Things look okay right now but he is still very critcal and fragile we still have a long way to go, but getting on this vent means that he can now once again be considerd for transplant. Right now we are going min by min as time goes on we can stretch that but for now its very fragile. I want to thank everyone for your thoughts and prayers. When we read the entrys we dont feel so far from home. God Bless
Saturday, December 8, 2007 9:21 AM CST Zachery is fighting. The doctors have been very aggressive to try and get him off the high powered vent and get him on the traditional vent. Unfortunatly he isnt ready. He is still in a very critical fragile place right now. We had a meeting with the team yesterday to discuss the results of a heart scan that was done a few days ago. Being on the type of vent that he is on right now is very hard to do any type of scans because typically the patient needs to be very still and Zack is being forced with air at more then 400 breaths a min so he isnt still at all. But anyway the scan showed that there was damage to the right side (which he had a small amount of pulmonary hypertension back in May but was still cleared for transplant but now it looks like there could be more, although thats not great news the news to follow is worse. There is signs of damage on his left side as well however this looks to be damage from the chemo that he had before his bonemarrow transplant, the same chemo that has wrecked his lungs. If this shows to be true its going to be devastaing. There is no cure and its irreversable, it also means that he will no longer be a canidate for the lung transplant. We did get another type of scan yesterday which the intention is to get a better look, we havnt got the results yet. This news is so hard to believe so we pray that we get through this and we pray that god keeps his hands on our little man until he is healed. Please continue to pray everyday for him, it is in gods hands now. Thank you.
Tuesday, December 4, 2007 3:46 PM CST Some of you may already know our heartbreaking news. Zack had to be flown down to Boston Childrens on friday morning. He had massive respatory failer. He is in critical condition. please pray for our little trooper.
Sunday, November 18, 2007 8:48 AM CST Zacks auction was on Friday!! It was a unbelivable night. The place was packed from start to finish, which was six hours!! Zack stayed for almost three hours. He had a great time seeing everyone and listening to the auctioneer. He was given a crusin' cooler made by Cabelas by friends of ours in our town and they had graphics of Mario, Bart Simpson and Tony Stewart on it. It is the cutest thing. He was so excited about that he got on it and rode it around the arena a bit before he went home for the night. We are going to need someone to come over and design a ramp for Zack to get in and out of the house by himself now. Which is actually going to be so much easier on him. PLus he will have a bit more independence. He has the other scooter that friends of ours gave him a couple of years ago and that is great for him outside but its really heavy and not having a ramp he has been unable to be in the house with it. This one is a bit smaller and alot lighter so in house will be great for him. Because there are days that he is unable to walk at all.
I am still finding it hard to believe myself but we got the grand total from the auction and are you ready for this one......$30,000! Can you believe it?! Lloyd said that he couldnt sleep last night he just kept hearing the total over and over in his head.
We are still taking orders for t-shirts and the sale of the rubber band bracelets should be starting soon.
Well I need to go now but I want to express to everyone that was a part of the auction in anyway how much this means to our family. I will never be able to find the words to thank you all in the way I feel it should be said. Its more than just the money (albeit the money means a whole lot!!) but what I mean is the feeling that I got and I know that Lloyd felt it as well when we saw all the people there for us and all the donations that were spread out through the arena it was a feeling that we havent really felt for a long time. You know you cant help but feel like you might be in this fight alone after you have been in it for as long as our family has, but Friday night gave me a rejuvinated sense of hope, comfort and strength. Thank you all once again and I hope someday I will find my self in a place that I can make someone feel the very same way. God Bless
Monday, November 5, 2007 4:47 PM CST Well we are going to be going to Boston to be offically added to the transplant list for a double lung transplant at Boston Childrens. The plan is to leave next Wed.
Zack is going to be on channel 2 news at 6pm and again at 11pm on tuesday the 13th!!!!! They did an interview with him last week to get his story heard and to also help get the word out about the auction on the 16th.
We are all very excited and a bit on edge about this transplant but we know that good things are yet to come.
Last week we had a terrible accident in the family, Zacks cousins lost there daddy. He was killed while at work. It has been a terrible time for everyone. Please pray for his wife Denise and his two boys Blake and Kaleb. He also left behind a sister and a mom who are equally lost without him.
God Bless
Tuesday, September 4, 2007 8:41 AM CDT Hello everyone,
So we have gotten some new news. Its not what we were hopeing for but there is still options. Boston Childrens have turned us down for using Lloyds lung. They said that its just too big and that the amount that would need to be "taken off" would actually end up not being much of an advantage to Zack and it would actually be more of a risk with reconnection. So we sent all of Zacks records off to California and Missouri. We were told of these two other pediatric centers that may be willing to do the living donor transplant. Well California has already gotten back to us and agrees with Boston. Missouri (ST. Louis) wanted some other info. That was last week so we should hear something this week. Lloyd and I are going back down to Boston to talk with the transplant team again with some more questions that we have come up with and hopefully be more prepared for this whole thing. I am going to ask them if I can be tested to see if I could donate because if he has to go on the waiting list then he would be getting an unrelated donor so I want to know why couldnt I give? We dont want Zack to be waiting on this list if there is any other option out there.
Zack is doing about the same. School has started back up but Zack once again will not be able to attend. He will start his tutoring tomorrow. He is excited about it but really wants to go to the school with other kids. He talks all the time about how good he is going to feel and what he is going to be able to do when he gets his new lung. He is using his oxygen a bit more now, but isnt using it 24-7. He is excited about his birthday. He is going to be 10 double digits as he says. Its not until next month but he is already counting the days.
I have a friend that is starting to organize a benifit auction for Zack here in Corinth if anyone is interested please contact me 207-285-3835 or Wanda Grant-Poulin at 207-285-3090.
We went to a Boston Red Sox game last weekend. What a game it was the no hitter shut out!! Zack was able to meet Jason Varitec and see batting practice. Now dont take this the wrong way he is still a Yankee fan! He went because his dad is such a Sox fan. We had a good time but Zack said "man I wish they were playing the Yankees"
Monday, July 23, 2007 8:16 PM CDT Well we went to Boston on the 12th. Lloyd got his scan but they had a terrible time getting an IV placed in Zack to run the contrast, and when they finally got it in his little vein couldnt hold the contrast so it blew. I had told them at the beginning of the week that he has been on steroids for so long that his little veins are terrible and they have never had good luck with contrast. BUT they thought they were a bit smarter and had nothing ready for a "special" case. So we ended up leaving and going back down the following monday when we were told that he would be "knocked out" and a femeral line would be put in. Which is a bigger IV placed in the groin, it gets looked at with a sonogram so they know exactly were it is and how good it is and everything would go smoothly for Zack. Well we got there and NO-ONE had orders for anesthesia and they tried putting this line in Zacks groin with him totally awake!!!! I had explained to the surgeon that what we wanted was the least pain and stress on Zack and he assured us that he could do this without sedation. I was so stinking mad but Zack tried to be very brave and trusted that doctor so he said okay I will try it without "sleepy medicine" He was in the OR for about 1 hour when they finally came out and said we couldnt get it in, he was very brave but when Zack asked him was it in yet and the doc said we are about 1/2 way there and Zack just laid there and said keep going but he was crying because he said that it hurt everytime he breathed so the doc said okay I am done. I really think that everyone needs to stop saying oh this is easy we do it all the time. Because Zack has never been "protocol or routine' and if someone can show me another Zack then they can tell me about routine! So when we finally got the line in and the scan done and then back to the recovery to get the line pulled out it was about 1 1/2 hours but the whole stinking day was from 9:30 to 4:30 because of all the confusion. What a day! Oh when we left the hospital we went right to the Ronald House to get the car when we we driving out of the driveway I said Zack, do you have your blankie? He said with a bit of panic NO! I checked our luggage in the back of the car, ran back to the house into our room then down to the laundry room and checked every washer & dryer nothing. I am thinking to myself oh my word we cant lose this thing not right now. (any of you that dont know about white blankie its his blankie that has been with him since he was born and he has it everywhere he goes especially during hospital stays it does not look like a blanket anymore but he LOVES it more then ever) so panic is starting to set in with me so back out to the car I go and recheck our bags. I find it in the dirty laundry. I get back in the car throw it to him and he asked me where was it and I tell him in with the dirty cloths he throws it back at me and says(its dirty???) I had to laugh because the whole time LLoyd and I are both thinking my word this is going to be worse then the whole day. And all Zack was worried about was that I trew it in with the dirty cloths. Like I said what a day. So now we wait for the results. We should be getting some news this week. I will be back on when we get news.
Wednesday, July 11, 2007 8:32 AM CDT We are headed back to Boston tomorrow. Both Zack and Lloyd will be having chest CTs. This is the "biggie' to make sure that it is possible to put Lloyds lobe into Zack. Once these are read (should be by the middle of next week) we move onto the next step!! Hopefulley its more test for LLoyd. If the doctors decide that Lloyds lobe is just to big then we will have to put Zack on the waiting list. It will be so much better for Zack if he could get his dads lung. So, we have been told that within a months time we will have a decision! I sit here and think my word lets get the show on the road but then after I say that I get scared to death thinking of the whole thing. Pray for our little man. Thanks to all who are keeping up with this journey with us. God Bless.
Sunday, June 17, 2007 6:05 PM CDT we got a call from Boston on Friday! Yeah, finally! I guess there was a bit of communication break-down between Childrens and Brighams. We are quite use to that sort of thing. So we are headed down to Boston on Tuesday for 2 days. They are going to start Lloyds testing and evaluation process. Zack is going to have a few other scan while we are there too. I am not sure if things will start going along a bit faster or if its going to be more sitting and waiting. Zack is feeling okay. I think that the pollen is bothering him quite a bit the last few days. He started an allergy med about 1month ago and I thought it was working okay but with the pollen index high right now I think he is needing something different. Benadryl seems to help but it makes him too sleepy. We are still trying to get him off the steroids but I cant seem to get any lower then the small dose that he has been on now for more then 3 months. He gets short of breath and works much harder to breath when I try to go down even by a little. It stinks because those little pills have so so so many side effects short and long term. They are good for what its treating and thats it. He is so terribly moody on them (which I hate) and he is still pretty puffy (which he hates) plus there are so many other things that he is dealing with because of being on them for so long. Its been almost 4 years that the poor kid has been on them, thats an awful long time. We havent made any July 4th plans as of yet because we are not sure where we are going to be and also we dont really dare spend any money right not knowing when and how long lloyd will be out of work. Zack really wants to go to Old Orchard Beach we have gone there every year (that we have been home) since he was a baby. He loves it. He has been asking us if after his transplant if we can go to Disney!! He says that is all he wants. I hope that we can make it happen. I will update again when we get back from Boston.
Monday, June 11, 2007 8:27 AM CDT I cant believe its been a month since we have been home from Zacks eval in Boston. We got a call about 2 weeks ago from the transplant cordinator and she told us that everything was still (a-go) but that they were still going over a few other details. She said that the next step is going to be Lloyd going down and having his evaluation for becoming Zacks donor! Now that doesnt mean that the doctors have made the decision to use Lloyd. They just want to have all of there options fully covered and on the table to make there decision! Its been pretty stressfull just waiting around. We will be going down just to see his doctors in Boston for a checkup probably in the next 2 weeks. He is actually doing quite well right now. He seems to have a bit more energy and stamina then he has had in a long time. He is actually going to be starting immunizations this week! He has SEVEN shots for the first round then it gets less and less but its going to all take about 6 months to get him upto date. Then we wait to see if they even worked because there is a chance that his immune response just isnt working. That would be a huge heartache. Although it shouldnt change anything as far as the lung transplant is concerned. School is out next monday! Even though Zack is home tutored he cant wait for summer vacation. We are making plans for his cousins to come and stay with us for a week. Also having my grandkids over for a vacation stay! We set up the camper in our yard by the fire-pit. So it will be like camping for the kids. I am sure that they will have a great time. Zack has been using his scooter that he got from his friends at Katahdin Shadows last year. That thing lets Zack get out and go places that he just wouldnt be able to if he didnt have it. Even getting to the camper out back would be too much for him. He cant wait to take it "real caping" to his favorite camping spot, Katahdin Shadows! Zacks brother Levi graduated yesterday!!! He is off to Maine Maritime Acadamy in the fall. His other brother Ryan just finished his 1st year at University of Farmington for teaching which he made the Deans list bith semesters!!!! And his oldest brother Randy and his family (10mnth old twin boys and 4yr old daughter) are all doing quite well. They have started going to a new church which they love. I know that its a good move for them. Lloyd is busy working on the new deck. The pool is ready to jump into as soon as we get the "deck" back up to it!!!! Oh well I am not saying a word to him about anything as far as the deck is concerned! I know that its going to be so much nicer then the old one and he has wanted to build a new on for about 2 years now...! I hope everyone is getting a good start to there summer. Drop a line when your done reading, Zack and I both love hearing from everyone. Oh yes to our NYC family, We are not sure when we are going to get down. Things are more in Boston right now. And yes Zack is getting even more heat from the Boston Red Sox fans but it isnt stopping him from wearing all his Yankee stuff and showing off pics of him and the players!! He wants you all to know that he misses everyone very much. God Bless
Wednesday, May 9, 2007 9:30 AM CDT Okay we are home. We had quite a busy 2 weeks. We now sit and wait for the next step. We were told that it will be about 2 weeks before we hear anything new. The transplant team will be getting all the information from the test and coming up with a plan based on those results. One of the scans that Zack had done was a VQ scan which is a scan of the lungs with radioactive contrast and will show exactly where the damage is. The best thing would be to see that the majority of damage is basically in one lung and that we could have Lloyd donate. I am sure that there are other factors that will be used to make that decision but I know that where the damage is is going to be abig one. He had a few different heart studys done which came back good and strong. He started physical therapy again this week. We need to get him as strong as possible for a speedy recovery. Thanks for checking in and when theres new news I will post it ASAP.
Thursday, April 26, 2007 6:09 PM CDT We are at Boston Childrens. This is our lung transplant evaluation stay. Lloyd drove us down on tuesday. We are going to be here until atleast Monday. He has had a mess of test, and seen a bunch of doctors. He is getting sick of it I must say. Its pretty much all day long. The floor that we are on is nice. Its only about 1 year old. The room is big and bright, which is going to be good during our long stay for transplant.
So far everything has come back looking ok. Nothing to alert them that transplant shouldnt happen. Thank God! Well I will be back on when we get out of here and there is new news to tell. Thanks to all for your thoughts and prayers.
Thursday, April 12, 2007 3:57 PM CDT SURPRISE I have finally gotten in here to update. I wish that my entry was going to be that of exciting and good news. Zack really hasnt had the best winter/spring. We have been back and forth to his docs here in Maine because of breathing problems. We have also been to Boston a few times to his new pulmanologist there. Long story short Zack is going to be evaluated in the next few weeks for a lung transplant! We actually just got back today from meeting with some of the transplant team. Now we could do 1 of 2 things. His dad could be his donor and give Zack 1 (lobe) or we could go on the waiting list and get a double lung. We know the chance of rejection is little or none with dads lung however he would only get possible 50-60% function, where a cadaver(deceased donor) would give him 100% function but he would have to be on anti-rejection drugs for the rest of his life. The biggest fear is that dads lung may be just to big to fit into Zack. If that turns true then a cadaver donor would be the only thing to do. As with anything there are pros and cons to both. Right now Zacks lung fuction is about 10%. He is unable to do much, and what he does do is with his oxygen running, he sleeps with it now all night. The next month or so is going to be busy and challenging for us all. Lloyd is really troubled by the possibility that his lung wont fit into Zack. I promise to keep this journal updated throughout this whole process.
Thank you all who check in for your thoughts and prayers
God bless you all
Saturday, November 11, 2006 1:35 PM CST Howdy everyone,
We are HOME!!! LLoyd has started pulling out the rugs in the house. The docs have told us that will be the best thing for Zacks lungs. We are also going to have to get hepa filters in the house too. Zack is feeling pretty good. He is very happy to get home and see all the family. His brother Ryan came home from college yesterday so Zack went over and stayed the night with him. We are planning on getting his little nephew tomorrow for a few hours. Zack is very excited about babysitting. Okay everyone have a great day.
Tuesday, October 31, 2006 2:09 PM CST Happy Halloween Everybody
Zack is out of the hospital we got out last monday. He is doing quite well. We are still in NYC and will stay until next monday Nov.6th. We have clinic tomorrow and another apt thursday with his pulmanary doc.
Today Zack went to the Pokemon Headquarters here in NYC. He had a great time. He saw stuff that isnt "offically out" yet and he got some cool stuff. There is a Halloween party at the house tonight which Zack will be dressing up for. He is going to be Link in the Zelda the Wind Waker game. Of course it was a costume that I had to make. Well we hope everyone has a safe and fun time tonight.
Friday, October 20, 2006 2:18 PM CDT Zack is feeling pretty good today. The last 2 days he has improved quite a bit. He has not needed any oxygen at night and during the day I have actually gotten him to take some short walks with me. The plan is still to get out on monday. He is going to have follow ups next week here in NYC. So my hope is that all goes well and we are home again the first of Nov. Zack is excited about doing Halloween down here again! He isnt able to "trick or treat" like all the other kids back home so he really enjoys all the festivities that they do for the kids here at the hospital and at the Ronald House.
Well Zacks hampster Sonic died the week before we left for NYC. He was okay with it. She actually died on his birthday but I didnt want to tell him so I waited till after his party. I think Zacks cat is missing him more then Zack is!!!! The cat always use to lay up by the tank and look in at her like she was saying I wish you could come out and play. She was about 3 yrs old and that is about the life span of a hampster. We dont have any plans to get another any time soon. Zacks dad is home taking care of all the other animals and I guess doing a fine job. He has the cow, dog, rabbit, and the kitten. Well at least he has company! Take Care All
Wednesday, October 18, 2006 4:13 PM CDT Good Afternoon Everyone,
Just a quick note to let everyone know that Zack is doing pretty well and that we are going to be staying in the hospital here in NYC until at lease this Monday. His lungs are sounding better and he did a few pulmonary tests today (which we will get the results tomorrow I am sure unless there is something "urgent" that needs to be addressed. I need to tell you that Zack has made yet another group of quick friends. He was playing BINGO which we all know that that is one of his monst favorite games to play while he is in NYC (Ronald House BINGO or Sloan BINGO)while telling everyone about the game that he is looking to buy for his Gamecube. One of the moms that was in the room said "Oh yeah I know which one my son use to play it all the time. Zack was like OH MY GOSH where did he get it. Well long story short her son actaully gave it to his dad that night to send with him to the hospital the next day!! Zack was out of his mind excited when she brought it in to him. He had been having a crumby day and that was perfect timing. Now this great kid is actually doing a project in his home town which he is actually builing a room in the hospital for the pediactric floor so the kids have games and stuff to do while they are stuck in the hospital. Now this was all planned before his sister ever came to Sloan for evaluation. He was excited about doing it then can you imagine how he must be feeling now that there family has been touched so closely. Zacks excited about having a new penpal. I will keep in touch.
God Bless
Sunday, October 15, 2006 11:22 AM CDT I know its been a very long time but we have been quite busy! First off right now we are in the hospital in NYC. We came for our regular 6 week check up and ended up with a CT that shows infection in his lungs and sinus. He is doing ok right now. We are going to be meeting some new doctors in Boston within the next month. They are specialist in pediatric lung disease. Zacks fibrosis is a terrible diagnoisis and we are going to have to fight very hard with this one. Unfortunatly right now there is now known cure and Zack hasnt responded well to the steroid treatment that keeps inflammation at bay. We are trying to remain positive but at times like these its very hard when you know that there is nothing that doctors can do to stop this disease from taking his breath away. We are hoping that the specialist in Boston have something to try. There are a bunch of clinical trials going on but none that I know of for pediactric medicine. This is a disease that mainly hits 40 adults. So we know that we will be making many many trips not only to NYC for bone marrow stuff but also to Boston even more often for his lungs. Sometimes I think that maybe we should pack up and move closer to these specialist because I dont think any will be comeing our way any time soon. Well I would like to write more but its lunch time and I need to see if I can get "picky butt" to eat something besides dill pickles! Our love to all,
Michele and Zack
Thursday, May 18, 2006 9:30 AM CDT Here is the latest. Zack is doing pretty well. We are down to less then 3mg of steroid a day and hopefully be off completly by the end of next month. He is going to have more lung function tests done in 2 weeks and if things are the same then we will continue the taper. Of course our hope is to see improvement but I dont believe that we will. He is still doing therapy 2-3 times a week, and he started Farm Leauge baseball! He is hitting and outfielding! When he hits he hits really well, he heads toward 1st base with all his might, he doesnt really run but he goes as fast as he can and thats all we can ask for. He has not made it to 1st yet but I know that he will. Once he gets there if he wants someone to run for him he has that option. All of the teams coaches are aware of just "who" Zack is and they so far have been very good to him. Zacks coach is wonderful. I have been friends with him and his wife for about 10 years. They can relate to our situation because they fought and won the battle for there son who is now 7. She and I compared notes and talked about everything and was working in the same place at the time of his diagnosis, so we became very close through all of our kids "crap" that they has to go through, and even though Zack isnt out of the woods yet and her son is in remission we still are on the same page, because as so many of us know just because the doc may say remission its very hard to go from being so careful and concerned about everylittle thing to carying on a "normal" life. Whats normal? I have to say that I am very pleases with his teammates some of them were a little "puzzled" i think of Zack at first but Paul (coach) took the time to tell a little story about Zack and I will tell you you should have seen Zacks face he was grinning ear to ear. Once that was done the kids havent treated him any different they are great. Even though he hasnt gotten to first yet all the kids in the dug-out are cheering for him to hit it out of the park and they cheer him once he comes in. Zack is loving it and I will tell you its great to see him passionate about something other then Mario and pokemon games. Not that those dont serve a purpose as well.
We were in NYC last month and will be headed there again in about 2 weeks. We are still planning on going to Camp Rainbow the end of next month.
Zack and I will see our NYC family soon. To all of you that are home....enjoy.
Thursday, March 16, 2006 7:57 AM CST Hello everyone,
Well this has been a crazy, hectic month. First off we want to say a big HELLO to our NYC family. We miss you all but honestly we have been avoiding that certain someone as long as we could, I believe however that within the next 2 weeks we will be there. Okay, here it goes.....
Zack started in home physical therapy the first of the year well that really wasnt what we had hoped and really not what Zack needs at this time so we finally was able to get everyone on the same page and get his pulmonary rehab started this week!!!! For anyone that didnt know we were told that Zack has ILD which is short for Interstitial Lung Disease. He is using oxygen therapy to help him while he is exercising which will help him build stamina and inturn get him stronger. (hopefully) He was measured for a "medical" stroller on monday. Its really a good thing because he just isnt capable of walking any distance without oxygen and it just puts his body into distress if he tries so this will help him get to where he wants to go so once he gets there he is strong and able to function. We know that this is a terrible disease but we have been down this kind of road before and with prayer and hope we will make it all work the best we can. Zack is still as strong and positive as ever though he knows that this is going to be a fight everyday and even though he is going to be limited in what he can do he knows that he still has choices and that he isnt going to become a hostage of this disease. He still wants to be involved any way that he can in the normal activities of any other 8year old. I believe that that determination has and will keep him with us for a long time to come. We are looking forward to Camp Rainbow this year and also to Camp Sunshine. Zack would really like to get to go to the Victory Juncion Camp its a camp that the Pettys from Nascar have founded and we all know how Zack LOVES Nascar. Last year he missed all camps because he was just to ill to attend. We are going to try to get him down to NH again this summer to see Tony Stewart. I also hope to get him to another race this year.
Zacks dad is going to head back to work next week! Its been a long 7weeks for him but he has had it filled with his own doctors/therapy and scans. He finally has seemed to convince the doctors he is healthy enough to return to work (light duty) I hope that it all goes well, financially we have felt the burden of not a full weeks pay but its also been a strain in other ways here around the house.....but really I do love him!!!! Ha! Ha!
So until the next entry I wish you all good health and God Bless
Thursday, February 9, 2006 6:19 PM CST Zack is doing pretty well. He is starting pulmonary rehad next week. Other then that everything is status-quoe. (not a bad thing at all) Zacks dad was in a head on collision car crash last week. He is doing well. He was never in critical condition but he has a few cracked ribs a sprained ankle and wrist, the list goes on but for the most part he will recover. A lady passed out behind the wheel and drove right into him. We go back to NYC in March. Zack is still being weened off the steroids so he continues to lose a bit of puffiness everyday. His blood pressure is staying under control with the help of medication. Ok gotta go King Zack calls!!! Haha you all think I am kidding. Bye for now and God Bless
Monday, January 2, 2006 6:50 PM CST Happy New Year! Things have been going pretty good around here. Zack had some trouble with his blood pressure but things are looking alot better. Its still not as low as we would like it too be but its come down alot in the last week. He got pretty puffy around Christmas but that has come down a bit as well. Zack had a great Christmas. He got up at 5:30 Christmas morning!! Santa sure did think this kid was good!!!! We have gotten some snow but not too much really, the next couple of months will be the time for us to be pounded on by the snow storms. We have a NYC trip planned for the 16th. It should only be for a couple of days. We will be seeing Zacks lung doc while we are down there. Zack had another series of lung function test a couple of weeks ago and unfortunatly they didnt show much if any improvement since the start of the steroids. So at the appointment we will discuss the "plan B". I dont really know what the next phase of this is going to be. I do know however that we are up against something very serious. The hope was that Zack had more inflamation in his lungs rather then more fibrosis, but the way he is responding to the steroid treatment might be proving that it is the other way around. What that means is that Zacks lungs have more damage then we initally had thought and the type of damage that has been done cannot be fixed. We thought that maybe 60% was damaged and the other 40% we could get the inflamation under control and then Zack could use that 40% of his lung 100% (if that makes any kind of sense) but now it looks like there is way more then 60% damaged lung. He is a trooper though. He uses his oxygen when he feels like it is becoming harder for his to breath, and he acts like its no big deal he just slips on the mask and away he goes.
Well I need to go its time for Zacks "meds & bed"
Zack wants me to tell all his playroom buddies at the Ronald House that he got Mario Strikers for Christmas and cant wait to have you all play! Its a great game.
God Bless
Wednesday, December 14, 2005 7:06 PM CST hello everyone...well we made it home last monday! Lloyd drove down to get us because the weather was too bad for us to fly and the whole week looked "iffy" so we decided to bite the bullet and drive. It was a long trip he did it in one day! We got home at 1am, Zack woke up at 6am! We worked on getting all the Halloween decorations down and packed away so we could put up the x-mas ones. Our house is now ready for Santa! Zack is feeling pretty good. He still is having breathing troubles but I think that it is getting a bit better. We are waiting for some good snow so we can get out and make a snowman. It is really cold here now. We got up and went to clinic today and it was only 13 degrees! Its great to be home. Zack wants to say hello to all his friends in NYC and says he misses you all. Merry Christmas! ONLY 11 MORE DAYS!!!!!
Monday, November 28, 2005 2:05 PM CST Zack went to his lung doc today. It seems that things are going along fine. We are going to need to get another lung function test done in two weeks, but we are able to get that done up home!! Yeah!! If it shows improvment then we may get to start the decrease in steroid. It is going to be a slow process but if it works and we can avoid any bad side effects its going to be worth it. His blood pressure is up a bit so that is going to need careful monitoring. We go to clinic and to the GI doc on Thursday then I hope its home sweet home. Zack has started to get a little puffy in the face, thats because of the dose he is on of prednisone. Talk to everyone soon.
Friday, November 25, 2005 4:04 PM CST Hello once again! I hope that everyone had a happy Thanksgiving. Zack and I went to the Macy's Day Parade. We had been invited by the starlight-starbright to go to there office. It is on the 6th floor right en route of the parade. It was great, and Zack had a great time he had been looking forward to it for the last 2 weeks. Then we came back to the Ronald House and had a huge dinner put on by staff and volunteers. We have a couple more doctor apt's and a clinic day next week and hopefulley we will get to head home on the 4th. ok gonna go they are showing the Polar Express for a movie tonight so Zack is ready to go upstairs. bye for now :}
Tuesday, November 22, 2005 3:41 PM CST Can you guys believe it there is a picture!!!! It was taken of Zack with his friend Uno on the day of the NY Marathon Fun Run for Kids in the beginning of Nov.
We went to the eye doctor yesterday and his cataracs havent gotten any worse. Yeah! We also went to the dentist and found that 4 of his permanent molars never formed as a result of chemo-therapy. Big surprise. I dont think that anything will ever surprise anymore when a doc says "its a side effect of chemo". Anyway we arent going to worry about it right now because none of his baby teeth are even close to coming out. We have a regular clinic visit tomorrow and hopefully we will leave there still on the schedual to come home on the 4th of Dec.
Zack and I are hopeing that its not to terribly cold up there. The weather down here has been quite mild. We are looking forward to putting up the Christmas decorations and getting a tree. I first have to take down my Halloween decorations!!!!! Zack reminded me that we never got to have his birthday party before we left for NY...so that means a party when we get home! Bye Bye for now.
Thursday, November 17, 2005 8:30 PM CST Sorry that its been a week since I have been on to update. We did get the biopsy back and it really isnt the best news that we could have gotten but then again it could have been worse. Zacks lungs have been damaged a great deal due to the chemo-therapy he has been given both times in preperation for his bone marrow transplants. The test have shown that about 60is lungs are scared and the other 40re inflamed. Unfortunatlly the scaring cannot be repaired that is going to be a limitation that he will have to live with for the rest of his life. There is therapy that he will start soon and maybe down the line there will be some sort of medication but for now there is nothing. The other 40s what we need to get heatlthy, so we have started a very high dose of prednisone steroid. This should get the inflamation under control so no more scaring will occur. We need to be on the current dose of steroid for a month before doing any further lung function testing. The doctor says it will take at least 3-6 months before we know the outcome. well I need to cut short the computer room is closing bye.....
Thursday, November 17, 2005 8:30 PM CST Sorry that its been a week since I have been on to update. We did get the biopsy back and it really isnt the best news that we could have gotten but then again it could have been worse. Zacks lungs have been damaged a great deal due to the chemo-therapy he has been given both times in preperation for his bone marrow transplants. The test have shown that about 60is lungs are scared and the other 40re inflamed. Unfortunatlly the scaring cannot be repaired that is going to be a limitation that he will have to live with for the rest of his life. There is therapy that he will start soon and maybe down the line there will be some sort of medication but for now there is nothing. The other 40s what we need to get heatlthy, so we have started a very high dose of prednisone steroid. This should get the inflamation under control so no more scaring will occur. We need to be on the current dose of steroid for a month before doing any further lung function testing. The doctor says it will take at least 3-6 months before we know the outcome. well I need to cut short the computer room is closing bye.....
Thursday, November 10, 2005 2:56 PM CST Zack and I was invited to Starbucks today by the Starlight-Starbrite Foundation for a book reading by Hewey Lewis! It was really cool he looks the same as he did "all those years ago" hahaha! He was really nice and talked alot to the kids. Zack ended up sitting in his lap and Hewey said a few times that he believes that Zack is going to end up in show biz!!! I told him that I believe that too!
Well tomorrow we find out the results of the biopsy. So we will know how much longer we will be down here. I told Lloyd to be prepared for us to be here over Thanksgiving. I also told him that if he gets the chance to work OT over the holiday that he should take it over coming down here. I know he misses us but the $ is more important. It is so crazily expensive down here to just live. My friend Amy has been amazing, she is getting us supplies from Wal-Mart and bringing them to us!!!!
Lloyd and I told Zack that after his surgery we would buy him what ever he wanted for a toy..so he picked this gamecube game called Dance Revolution Mario Mix. It is soooo funny to watch him dancing on this dance pad! He LOVES it. I do to because it is exercise. He will be able to speed up as he starts feeling better but for now its perfect. OK I gotta go check on supper. God Bless.
Monday, November 7, 2005 1:39 PM CST We are still waiting for results of the biopsy. They have said that its common for the results to take about 7-10 days. Zack is feeling about the same. We do have portable oxygen tanks now. I feel alot more comfortable now in terms of letting him try and play with the other kids because I know if he gets short of breath I am right here with the oxygen and it helps him feel better faster and its not so much work for his poor lungs and heart. We are dealing with another small problem. Zack had to get his feeding tube replaced because the balloon that holds it in had broke. So I had asked the surgeon that was performing the biopsy if he could replace the tube and he said sure. Well when he asked if he could change the j-tube to a g-tube (which the j was put in because his stomach had not been working) but he has been eating now for about 4 months and has not had any stomach troubles and we actually had done a test that showed his stomach had gotten better, so with that info I said sure go ahead and change it (we are only using it for meds now anyway) Well since the change has been made he is atually couching much like he was in the beginning of the stomach toubles, so I am requesting the it gets changed back. Zack is not very happy about it because it is another OR visit. But I dont want ot wait around trying to guess if its a problem or not I am going to use the knowledge I have and go with my gut feeling. Zack and I went to the Rockettes Christmas Spectacular show at Radio City Music Hall last week! What a beautiful hall. The show was great and Zack loved it, I took pictures and I hope to start getting some pics on this site. Zack and I went to the NY Marathon fun run for kids this past Saturday he wasnt able to run but he was a volunteer. He was anouncing on stage the winners of the prize drawings, and he helped pass out refreshments to the runners. Then on Sunday we went out and watched the NY Marathon. What a sight to see all those runners, young,old,handicapped and healthy. Its an amazing thing to watch. The run right down 1st ave so we were able to go back and forth from the house which was good because he was pretty wiped out from the activities the day before. I was able to do something for myself the other day...now I know that I have told you all before about Barbara Zobian. She is a very special person that goes out of her way to make just about anything happen for the moms here at the Ronald House. She has taken the moms on mothers day to the famous Boat House in Central Park for brunch, she takes the familys to a great mexican resturant on Halloween, she does spa nights for the moms and so many other good deeds I couldnteven come close to nameing them all. She also has a dog named Uno which is a therapy dog that goes to NY Hospital to visit patients. Zack really loves Uno. Anyway back to my story of what I got to do. She made me an apt with a very upscale salon in the city and I went and got a mini-makeover! It was great and everyone there was so friendly to me and Zack. I felt a bit out of place when I first got there but that was short lived. Zack stole the show as usuall. I left there with a manacure a new cut and color and thanks to Barbara...it didnt cost me a thing. I know that it would have cost me over $450!!!! Can you imagine? So that was a great treat. I will be back on when I know something new, and hopefulley will have pics on here as well. Bye for now!
Friday, October 28, 2005 12:44 AM CDT Hello all. Zack and I are back in NYC. We are going to be staying for a little while this time. Zack had to have exploritory surgery of his lungs on the 26th, and we are going to be here until whatever has been found is under some sort of treatment and we and the docs are satisfied that treatment is working in his favor. So right now I am looking at the middle of Nov. before heading home. Zack was very nervous about this procedure. He definatly was not himself for a few days before going into the hospital. But he is doing good! We are out of the intensive care unit and on the regulare care floor.....although I think that he whole hospital is intensive care. The nurses told us that is is very painful but they took great care of him and had his pain monitored very well and within 8 hours of getting out he took a short walk! Of course it wasnt without pulling a pole with 3 iv bags, an oxygen tank and mointor, and a chest tube sticking out of his chest running into this holding tank if you will sucking the residue of surgery out!!! He was amazing and they said the same. I am hopeing we get out of the hospital by tomorrow. I thank God for getting him through one more thing.
Friday, October 28, 2005 12:44 AM CDT Hello all. Zack and I are back in NYC. We are going to be staying for a little while this time. Zack had to have exploritory surgery of his lungs on the 26th, and we are going to be here until whatever has been found is under some sort of treatment and we and the docs are satisfied that treatment is working in his favor. So right now I am looking at the middle of Nov. before heading home. Zack was very nervous about this procedure. He definatly was not himself for a few days before going into the hospital. But he is doing good! We are out of the intensive care unit and on the regulare care floor.....although I think that he whole hospital is intensive care. The nurses told us that is is very painful but they took great care of him and had his pain monitored very well and within 8 hours of getting out he took a short walk! Of course it wasnt without pulling a pole with 3 iv bags, an oxygen tank and mointor, and a chest tube sticking out of his chest running into this holding tank if you will sucking the residue of surgery out!!! He was amazing and they said the same. I am hopeing we get out of the hospital by tomorrow. I thank God for getting him through one more thing.
Monday, June 13, 2005 9:50 AM CDT We are once again back in NYC. Zack has had to have a few test done on his stomach. It seems like just when we let are guard down a tiny bit, things start to unravel. For the last couple of months now he has had trouble tollerating his tube feedings so of course he has lost a little weight....not enough to even show but on the Dr's scale! but it has become worse and worse so we are down here getting those done and if needed start on a new med. Besides that he is doing really well. Of course now that its HOT and SUNNY we have to start plastering the sun screen on him because the Vitaligo is still a BIG problem. He has actually lost 90% of his normal skin tone so he is very very light. The docs still cant say if that is ever going to change. It doesnt bother him at all until i have to load him up with sunscreen, then he acts like I am covering him in hot lava!! but I am sure Zack isnt the only kid that hates to have it put on. Well school wasnt much of a sucsess this year for him he was either to sick for the tutor or the kids and or teacher was to sick for him to go there. I think the plan is going to be to have him go to summer school and then start 2nd grade over, and hopefully have a full year with no problems! Keep your fingers crossed! Zack went to his first NASCAR race yesterday!!!! We went to the Pocono track with a few others from the Ronald house. Zack LOVED it. We went to the Nextel Experience tent and watched a pit crew do a 2 tire change which took 10 sec!!! then he had his picture with the Nextel Trophy (that will be in the 2005 nascar yearbook. I wasnt paying close enough attention so when they snapped the pic Zack is the only one without his nextel cap on, he has his Stewart hat on!!!! oops but no one said anything about it except 'I dont think he would take it off for a million bucks do you?' then we left the others because Zack wanted to do the simulator car. We stood in line for at least 1 hour but it was worth it..I drove and did a terrible job, then one of the Nextel guys took him!!! then they came in 1st. So then we met up with a couple other Nextel guys and from there on Zack was in HEAVEN they took him to the sky box, he got to listen to the drivers and pit crew (some of which was a little colorful) they fed us and treated us like a million bucks. Zack didnt want to leave. You know saying thank you just isnt enough. I wish there was a word beyond thank you to say when your heart is just ready to explode because your kid has had the time of his life and its all because of them. There just isnt anyway that you can feel like you have shown them just how truley gratful you are just by saying thank you. We are headed to a Yankees game tomorrow so anyone that can watch the YES staion at 7pm you should see Zack right behind home plate! We should be home on Thursday if all goes well.
Wednesday, January 5, 2005 3:32 PM CST well for anyone who is still checking in Happy New Year! It was nice to hear from you Betty...I hope all is well with you and yours as well. We are back in NYC. Zack is doing alot better! It has been a very stressfull past month or so. Zack got sick while as I had said before the week of Thanksgiving and he didnt turn around until about a week before Christmas. He lost quite a bit of weight, basically he wasnt able to take his feedings and wasnt eating anything by mouth....so in the end he lost almost 5lbs in about 1 month. We had even more docs involved in Zacks care. We stopped meds, started new ones, slowed down on things and tried giving meds at different times.....I am not sure what exactly it was that started helping him but he is finally feeling GOOD and he has started putting back on the weight he lost. We are up to 49lbs!!!! Ok gotta go Zack is calling. God Bless
Friday, December 3, 2004 10:29 AM CST hello to all. I am sorry that its been such a long time since I have been on and thank you to everyone that has been on to check on Zacks status. Here it goes..... The last time that I was on Zack had had a stomach feeding tube and that was suppose to help the trouble that was going on because for some reason Zack had pretty much stopped eating and his weight was a constant battle and when he got sick for a couple of days it was even harder to gain back the weight that he may have lost. So anyway we went ahead and did the tube that was in the early spring. Well it was a nightmare almost from the begining. To make a very long story a bit shorter...he eneded up becoming very ill and it was mostly do to the fact that we were forceing food into a stomach that had slowed down its mobility so he wasnt digesting and we just kept shoveling it in!!!! We went to Ptld. hospital and they took out the g-tube (stomach tube) and put in a tube called j-tube, its bypassing the stomach and going basically into the small intestin. Much better! Almost immediatly he was no tollerating the feeds and started gaining weight! Like he was suppose to do with the first tube! He was down to about 35lbs when we got the new tube in and today he is 50lbs. The j-tube was placed in Aug! He did however have to start steroids for possible gvhd in his stomach and his lungs because of all the troubles that was going on it just seemed that gvhd could be the culprit. His stomach still isnt working very well and actually last week he started getting sick during feedings. (which are at night and run for about 12-14 hours) So we are now in NYC again. They have done some test and they have found a mass in his intestine. So right now we are not sure what that all means there are some other test to be done before we do anything different. It could be infection or maybe the tube has moved...there are other possibilities (gvhd) but we will cross that bridge if and when we need.
ON a much lighter side...Zack met Tony Stewart last night! He not only met Tony but he also met Mark Martin, Kurt Busch, Elliot Sadler, Ryan Newman, and Matt Kenseth!
They came to the Ronald House and actually "hung out" for a coulple hours. Zack placed playstaion with Tony of course and Mark and Matt. He kicked ther "butts" He loved it he was pretty much out of his mind with joy.
Friday, June 11, 2004 2:51 PM CDT Hello everyone,
Hard to believe but I am actually back making an entry and its only been 2 weeks or so since the last! Well we are here in NYC (but only for a few more days) Its been HOT. We saw Zacks sinus doctor and he said that Zacks sinuses have never looked so good!!! They are actually truley clear! So that means that the surgery he had done in March was a sucsess. We went to a dermatologist also and 2 docs there said that his skin looks more like vitiligo versus anything to do with GVHD!!!!! He has got a few eye lashes that have turned white and that is a tell tale for vitiligo. It may be something that will go away over time or it may get worse. The only thing to be done is protect his skin from the sun with sunscreen and clothing. His counts look good he has a b-cell count of 151 which is on the low side of the range (98-1200) but he is on the chart. As far as if they are functioning right now is another story. There isnt a test that can be done to tell us for sure what they are functioning at so what they look at is a "bunch" of stuff that is going on like the fact that he really hasnt been sick and required inpatient stays is a really good thing. The docs believe that right now his cells are just "stewing" . Its still early after transplant and they are not concered about anything at this point. I have been told that there is a chance he could get a great b-cell count but for some reason they may not function well and he may need treatment for his whole life but as long as he learns his limitations and the precautions and stays "well" then he will still be able to function normally. None the less he is in better shape now then he ever was. I know that it seems like he may not be right now because of the feeding tube and a few other issues but those are only "skin deep" troubles and will not be an issue down the road and we will get through them.
He has been though so much and I know that his journey isnt over yet but I trust in Gods way and I know he is beside him every minute of his life and has helped him every step.
Keep the faith because its a lot harder to live without it. Believe me I know
Monday, May 24, 2004 9:31 AM CDT Hello to everyone that is still checking in on us. Its been quite awhile since our last entry....which usually is a pretty good sign and for the most part it still is, but Zack has been spending more time at EMMC then we all hoped. Really to make a long story a little shorter last week he had surgery putting in a feeding tube. His weight has been a constant struggle since we have been home really and he got sick about 1 1/2 weeks ago and he lost the weight (about 4lbs) that he worked so hard to put on. So we decided that the "tube" needed to happen. The docs (especially NYC) have been pushing for it for about 2 months now. We left the hospital on Sat and his weight was 16.9kg (about 38lbs) He is going to be hooked up to the tube for 12 hours a day and it will be during the night getting about 2.5 cans of pediasure a night. Its a totally new learning experience for all of us and a bit nerve racking at times...but we will get through it stronger then before.
We are going to go back to NYC in 2 weeks for a follow-up with transplant team and also with the Doc that did the sinus surgery (Ward) We are still not sure what if anything that surgery did as far as helping him out. He has also gotten more of the Vitiligo on his skin. He has a little bit after first transplant but now it is on about 70 f his body. Its a condition that is lack of pigment in the skin so its white white and the pigment part "which is normal" looks alot darker. There is more to it but right now there is nothing for us to worry about except making sure he wears ALOT of sunscreen and a good hat.
We got some pretty exciting news on Friday...he is going to be going to Camp Rainbow the week of June 20th! Its a camp that is put on by the American Cancer Society and EMMC is a sponser as well i believe. He wasnt eligble at first but with the help of the social worker and child life specialist the ACS have made a few adjustments on the criteria and he is going!!!!!! Its going to be a real good thing for both of us. Well I hope you have all enjoyed reading our update and I will try to get on right after we get back from NYC to update again. Bye for now.
Saturday, April 3, 2004 7:58 AM CST Well Zack got his sinus surgery done. It is still kind of early to tell if it has done any good! We had it done in NYC and only had to stay a few days after. He is doing well all in all. We go back to see the doctors on the 21st of this month. He has to go to EMMC every couple of weeks for his IV meds and he is on a few orals still. I hope that we get some answers from Dr. Small soon on how much longer these meds will be needed. I guess that it all depends on how well Zack is doing. (so its kind of hard for anyone to predict the future) I am trying to get Zack into a summer camp with other kids that are going thru tough illnesses. I hope he is able to go. He is getting in home tutoring 4 days a week and he loves it. He is just about where the other kids in 1st grade are!!!!! He has really enjoyed being home. We have his cousin Blake come over when ever we get the chance. He went to his "first real birthday party" last Sunday. He had so much fun. It was a small get together but none the less it was a kids party and he has never been able to do that "outside of the Ronald McDonald house partys" I am looking forward to the weather getting better so we can get out more and visit. Its hard right now because of the cold and flu and anything else that comes out this time of year.
Thank you all for keeping us in your prayers.
Wednesday, March 3, 2004 5:27 PM CST Hello everyone....Take a look at the Ronald house link! There is a pic of Zack winning some $ at the Bingo night at the house. We are back for a few days only! He has a couple of checkups and then we are scheduled to come back for sinus surgery on the 23rd of this month which means that we will be spending a couple of weeks here in NY. He is doing really well, he has lost most of his steroid puffiness. His immune function tests look good he is finally above the "low normal" end of his t-cell count as far as the b-cell function its still too early to know. Can you all believe that we are almost 9 months post transplant. I know that it is hard for me to believe it went by way way to fast. His doc is looking into why his hair has come in so thin and dark. Besides that there is really nothing going on (which is just fine with me) We were going to attend the Charleston Pentecostal Church last Sunday but we got word that there has been a few chicken-pox outbreaks!!! So that is going to have to wait. We are looking forward to seeing and thanking everyone there for there generosity and more so there prayers for Zack. Ok gotta go get ready for BINGO!
Wednesday, February 11, 2004 8:00 PM CST Hello to everyone!!!! I have to say first off that I am sorry that I havent been on to do any updating for the last 2 months. Zack is doing very well and we have been home since the middle of January. We did get home for xmas but had to go back to NYC on the 29th. He got a new port-a-cath put in and then we was back home after the new year. Christmas was great and it was great to be home but I new we had to go back and I wasnt really sure for how much longer so I was a not looking forward to heading back. When we returned after xmas everything continued to go in our favor and his docs said GO HOME!!!! So I gave up our room at the Ronald House! We got home and packed up for Disney! It was alot of fun and we did so much stuff. We went to Epcot, Animal Kingdom, Magic Kingdom,Universal Studios and we went to the Disney Marathon to see Richie (from the Ronald House) finish the race! This was the 2nd race we have been at with Rich the 1st one was the NY Marathon this Novemeber! Richie is the one who asked us if we wanted to go to Disney. So our trip was full as I was saying, He had breakfast with Goofey and Pluto, he went on so many rides, saw Scooby and Shaggy, had his picture with SpongeBob, and saw Bear in the Big Blue House live on stage! he got Spidermans autograph after he went on his ride, he went looking for Jaws on a boat, and he flew 100' in the air with the teradactles in Jarasic Park! 3 times!!!!! He fought off Zurg with Buzz Lightyear 3 times as well! We watched the fireworks show at Magic Kingdom in the rain but it was still amazing, I am telling you just about 1/4 of the things this kid did! When we were at the airport on the day we were leaving we got there pretty early so we decided to get a good lunch so we let Zack pick and he picked Chilli's, well we got to our table and finally got our luggage and jackets put in place and I asked Lloyd to take Zack to the bathroom to washup, while they were gone the party at the next table asked me if we were Tony Stewart fans...I said well our son is a big fan! They said they noticed Zacks cap, so then they proceded to say that they work for Tony and that they were in Florida for a merchandise convention! I couldnt belive it!!!what were the chances of this...so the young man in the group (there was 3 of them) 2 girls and a guy..the guy and the older lady have been with Tony for about 11 years and the other girl had just started about 5 months ago, anyway the guy handed me his Grand Championship ring and said to show this to Zack!!! So I put it on his gameboy that he had setting on the table. They came back and when Zack picked it up he said " Hey what is this" his father looked at it and said to me who gave him this "like it was a toy" I said the guy in the next booth. he said wow that was nice I said Lloyd take a close look at it, he did and he was still a little confused so I said it's real he said No Wayand then I told him what was going on, they were really nice and took Zacks name and address and said that they will be in touch. He did get a package of Tony stuff about 2 weeks ago but there was no return address so I am not sure if it came from them or not. He couldnt stop talking about meeting people that knew his Favorite guy.
He has been doing very well. We have been going to the doctor here in Maine and for his IV meds were are going inpatient. His Hemoglobin has been low so he is on iron supplement. We still need to have the sinus surgery and I think that that is going to happen the end of this month. It will be in NY. We had a meeting today at school and Zack is going to start 1st grade tutoring tomorrow and continue 4 days a week. Ok I will try to get on this more to keep everyone updated. He is doing well and I promise that if anything was wrong here would be the 1st place I would go....this website is more to me then just a way to keep you all updated its a place for me to go at times that I just needed to talk but didnt really want anyone to say anything back I guess a place for me to vent!!!!So I guess I should say "Thanks for listening"......
Thursday, December 18, 2003 3:29 PM CST Not much of anything going on today. Which is just fine with us! We should be getting the results of his immune function test tomorrow. The plan is still to head out of here Sunday afternoon after his iv meds. I want to thank everyone for there prayers and well wishes over the last year, it has truley helped us get to the point we are at now.
God Bless
Wednesday, December 17, 2003 8:54 PM CST just a quick note to let everyone know that Zack did wonderfully today and he was so brave about getting the sleepy medicine. It is a very easy procedure to take a port out. It was only about 30 min start to finish. He asked me tonight while we were watching a xmas show he said "hey mom, is it xmas eve tonight? I said no not for 6 more days he said "Oh okay I was just making sure" So I think that now that we are really going to head home for xmas he is starting to get a bit more excited. I have had a hard time myself really believing that it is that time of year.
I have a plan for Monday (day after we get home) its to get up very very early and power shop I have done absolutley nothing to prepare so I need everything from stocking stuffers to the dinner!!! I am actually looking very forward to shopping in my familiar stores...it wont take long because my checkbook wont let it!! HAHA but it wont matter its going to be a great holiday no matter what! Lloyd is going to get the tree ready for trimming on Saturday before he heads out. We are so excited.
It does look like we will be headed back down here on the 29 and staying a week or so. They want to get his port and his sinus done (they advised me of that today) but I plan on speaking to Dr.Small about it and seeing if we can hold off for another week or so.
Good Nite
Tuesday, December 16, 2003 7:46 PM CST Hello everyone!
we got Zacks 3rd blood culture back and guess what it was still positive! So they have decided to pull the port out! He will go in to surgery tomorrow morning at 9. They will put in a reg iv for him while he is still under "sleepy medicine" then he will stay in the hospital and get iv medication until Sunday. Lloyd and posibbly Levi will be driving down on Saturday to pick us up and TAKE US HOME for Christmas! Can you believe it! The doc that is on the floor is so great. He asked me when he first walked in this morning "so where do you want to be next week"? I looked at everyone like "what is this some kind of trick question.....I want to be in Maine!" He said ok lets get the show on the road. He doubled checked everything with Dr.Small (which I was a little nervous) but he came back this afternoon and said heres the plan! So we will have to be back by the 30th for a new port but we are only planning on staying for a couple of days. Then the plan is to come back only once a week for how long I have no idea as of yet but that info will come soon enough! All I can say is that Zack is very excited about going home and knowing that we are actually calling this one a move for good. We will be cleaning out the room at the Ronald House this trip! Ok I gotta go get Zack into bed so he is well rested for surgery. Thanks for all your prayers....
Monday, December 15, 2003 9:18 PM CST we got some news today. He has a staff infection, it must have entered his body on Mondays acsess and when they reacsessed on friday that is when all hell broke loose once again... it was in both his port blood and in a reg iv stick..... they are treating it thru the port, So that means that until we get a negative culture from the blood draws we are in the hospital. Actually until we get 2 or 3 negatives. The treatment is a 10-14 day antibiotic regimen. Our hope is that by the end of the week we will be able to get out of here and at least back to the Ronald House on IV antibiotics every 12 hours. And it also means that we will more then likely not be home till after Christmas. I cant even explain how I am feeling about the whole thing. I know that as long as Zack is ok it really doesnt matter where we actually spend the day....its just everything else that goes with Christmas for me and my family and the thought that we cant spend it like we normally do and the fact that Zack is going to be away from home for yet another holiday that is the hardest thing for me to get a handle on right now. I am now aiming to get us home by the 2nd of January be home for a week and leave for sunny Florida for a 5 day vaca to disney!
I hope that tomorrow I will have news about the culture that was taken on sunday....pray for a negative.
Saturday, December 13, 2003 6:54 PM CST Hello all.....
Let me start by saying that we did make it home and we really didnt want to leave. I think that it was the hardest trip I have ever had to make back to NYC! Zack had mixed feeling about it because of the new friends he has made here. But I know that he is very home sick.
NY got alot of snow from that storm that was over last weekend but its all gone now. They really do make short order of it anyway, they pile it in trucks and get it out of the city.
We are back in the hospital as of yesterday. He was in clinic getting one of his regular IV medications and he spiked a fever and chilled. I got very nervous because the last time he did that was up home when he had the infection in his port! But the temp went down with tylenol. But none the less we are here running all of the test. He is feeling fine for the most part I just hope that everything comes back in the next few days negative and we can get out of here and head home for xmas. I think that Dr. Small was going to let us head home by the end of this week and then come back on the monday after xmas....but then wanting us to make a trip down here once a week and do clinic up in Bangor once a week!!!! I think that that is NUTS. I am going to talk to her about that on Monday. I want to go home but if I cant get the clinic visits spaced more then at least 2 weeks then we will have to stay down here! I feel like I am getting to the end of my rope. I can only imagine how Zack is really feeling. I am so sick of having to tell him that we dont know when we are going home for good and I am so tired of having to tell him that he might have an infection so he has to go to the hospital. I am sick and of it so imagine what he is!!! I didnt intend to make this a whine session but I did and thanks everyone for reading....I hope to have a better story for you all on Monday. Double up on the prayers for our little man tonight. We have a new number for our hospital stay 212-639-4083 room number 917b.
Thursday, November 27, 2003 7:08 PM CST HAPPY THANKSGIVING EVERYONE!!!! I hope everyone is reading this with a very full belly I know that I am writing this with one!!! They fed us very well here at the house!
This will probably be my last entry before we leave to head home tomorrow. Zack has clinic in the morning and I hope to get him "hooked up" to his infusion by 8:30 at the latest and that would mean that we will be out of there by 12pm. Its going to be a long ride home but we are looking forward to it!!
We had a fun Thanksgiving. Zack had a blast at the parade! He met Mayor Bloomberg! The house fed us very well. It was so different not to cook or even have to clean up after dinner. To be totally honest with you all I really did miss it!!
Zack went to the movies this afternoon with his friends from the house and then he had 4 of the boys come back to his room and spend the remainder of the day playing.
Happy Thanksgiving!
Tuesday, November 25, 2003 1:24 PM CST Hello....
I guess that it is safe to say that we are headed home this Friday after clinic!!!!! It is only for a small visit a little over a week, but hey we will take it!!! Lloyd came down here on Sunday afternoon and we are staying here for Thanksgiving and we have clinic on Friday morning and then we are off to MAINE! We should be pulling into our driveway around 10pm or so. We have to be back in NYC on Monday the 8th for clinic and he has a sinus CT on the 9th. His sinusis seem to be doing alot better on this medication that he started a little over 1 week ago. We are crossing our fingers that it gets rid of the infection and sugery will not be needed! Wouldnt that be great? Something finally going in Zacks favor! Although I shouldnt say that things have been bad because we have really been blessed with his recovery from the GVHD!
Lloyd said that he could hardley believe how big Zack has gotten and he said that some people back home may not even recognize him. He is puffy but alot of it has gone down since the steroids have started to be decreased! We both agree that its nice to see fat on his bones!!! I hope that he dosent go back to the finicky eater that he was before steroids.
Dr. Small has said that he looks really good and that some of the weight is steroid puffiness but most of it will stay because he was eating so much while on them. She also said that one of the reasons that Zack isnt ready to go home for "good" yet is that although he is still on the steroids for his GVHD that he really isnt on a theraputic amount anymore (he needs to be taperd off of them even slower now) and that if there was going to be any type of "flair-up" that there is more of a chance of it happening within the next month or so! So even though he looks good and everything is going in the right direction there is still a chance (small) of complications. I know in my heart that he is going to be fine.
Alright I am going to see if I can get Zack to eat some supper and get him to bed earlier then 1am. We have got an early morning on Thanksgiving we are going to to watch the Macys Day Parade down in Times Sqare and then the next day we have clinic very early and then we are headed home so if I can get him a few more hours sleep it will be quite helpful. See you all soon!
Thursday, November 20, 2003 5:25 PM CST Howdy once again.......
We met with the ENT specialist today. He is a very nice man, and from what I can tell he is very smart and he knows what he is talking about when it comes to kids sinus problems. So he says that he would like to see Zack to finish up with the cycle of new anitbiotics that he started the begining of this week and also gave him a nasal spray (oh yeah this ought' to be a circus act to get him to spray that up his nostril!!) but knowing Zack he will do it after he realizes that it is crutial in his getting better. So after about 2-3 more weeks he said that if things havent improved then the next thing to do would be the surgery :( When we get the ok from Dr. Small to head for home I believe that she will be having us come back for checkups every couple of weeks for a while so the doctor said that he would (if I decide for him to do the surgery) schedual it for one of our planned visits. So probably before x-mas we will be back down here for a week or so. I want to get it done before Zacks trip to Disney World!! I dont want anything to mess that up if I can avoid it.
It looks like we are headed back to the Ronald House tomorrow after clinic!!! I am a bit nervous about going back, only because its been nice having "control" over Zack the last week or so. I did tell him that he needs to be extra careful while we are there (you know like wearing his mask and making sure he uses his hand wipes)we are so close in getting home I would hate to have a set back now.....well not that that hasnt happened before!!!!!
Tomorrow is the BIG DAY! Dr. Small is suppose to tell us when to go home. I cant believe that 6 months have gone by. Today walking back from the apt. leaves were blowing around and people are wearing big jackets and wrapped up in scarfs, I thought to myself "when did winter happen, and what happen to the other seasons like my summer and fall" it just when by so strangely fast. For those who dont know already I made the decision to leave my job for good. So now I can try and make up for these lost months...LOOK OUT CHRISTMAS!!!! We are looking very forward to getting home and decorating the house inside and out!!!!!
I will be back tomorrow with news.....bye for now!
Tuesday, November 18, 2003 12:44 AM CST I really dont have any news yet....However Dr. Small did call us yesterday morning and did say that her intention is still to get us home by thanksgiving. But she didnt give us a specific day yet. He has an apt. with a pediatric ENT on thursday, for his sinus troubles. The doctors are tying to decide if sugery is warrented. They arent getting worse its just that they are not improving either, and its been about 3 months and alot of antibiotics. So I guess going to see this doctor (who I have been told is a very good ENT) is going to be a good idea. Although Zack has a great ENT back home its just that they want to get the ball rolling now instead of waiting any longer. I say if he is good then we will go for it but I will be able to tell if its all going to click probalby the min I start talking to him. Sometimes during the first visit you can pretty much tell if you want them to treat your child just by there bedside manner. And I am not going to put Zack through a bad experience when I know that Dr. Lenz from back home is super with him. Anyway we will see what happens on Thurs.
We also have clinic in the AM that day and my hope is that Dr.Small comes in to see us there. Zack is very very excited about getting home. If you call that is the first thing he will tell you is that we are going to be home by Thanksgiving. I hope nothing messes that up. Still no chicken-pox!!!! His weight is at 20kg (which is almost 45lbs) Can you believe it! He is puffy but not really that bad. At least that is what I think, but maybe someone that hasnt seen him for awhile would think different. all I know is that its nice to see some meat on his bones!!!
I have included a link below that connects to the
Ronald Mcdonald House and includes there updates of pictures. I should have done this along time ago, but I am a computer idiot and didnt know that I could. But I thought that when there are updates with pics of Zack I could just let everyone know to go click on the link.....we will see if it works, or if anyone wants to know more about the Ronald House go ahead and check it out.
Talk to eveyone soon
Friday, November 14, 2003 8:34 PM CST This is going to be a very short entry today.....because nothing happened today. Man o Man being in the urgent care part of the hospital here is like being on another planet. I hate it and so does Zack. I hate it because trying to get to see a doctor or get ahold of a nurse is next to the impossible. We do have a great nurse that is from the regular day clinic that has chose to come down to urgent care and take care of Zack, but she cant stay there because she has many many other kids up where she is "suppose to be." or to get the normal info like his counts or perscription refills or just something for Zack simple like a drink is frustrating because I either have to walk around for 15 min to get someone that will actually say oh yes I can help you with that because I swear 1/2 the people down here will not go out of there way and help, if its not ther position then they just say no, not let me find someone that CAN help you its just no I and thats it!
God I need some Maine hospitality so bad!!!! Its not everyone but I will honestly say its the majority. I have met some great people down here so dont get me wrong with what I have written there not all lazy! It that way wherever you go I know but I think this place is just starting to wear on me. Well its only for 1 more week and then hopefulley we are able to go back up to Clinic. Zacks doc should be calling me tomorrow if not I will see her on Monday! Zack wants to know when he gets to go home! Me too really. He is doing well so I am not worried about his counts but I just feel like we are shoved under a rug or something while were not in the regular clinic. Zack is going to need a whole new wardrobe when we get home because he is getting so big. Even his head is bigger I think because I just about pulled his ears off when I pulled one of his sweatshirts over it the other day!!! His hair is starting to grow in a bit now. He is still going to need some warm headgear this winter because its going to be awhile before he has enough to cover his noggin. He does however have more then his daddy already!!!!HAHA
I want to again thank everyone and I know that there was alot of great people and 2 great companys that took part in the raffle for Zack. I heard that there was some very nice GM Pollack and Days Jewlers pieces up for grabs!!!! I also want to say congrats to Josh and Lori on there new baby boy, and too Barbie and Willy on there soon to be new arrival!!!!! Is it something in the water...
OK not so short you all know me!!!!!Good Night and God Speed
P.S check out our new number while we are at the helmsley below
Wednesday, November 12, 2003 12:37 AM CST Hello once again! Well we have moved to a new location for a while. We are now at the Helmsley Medical Towers. The doctor moved us there until the chicke-pox scare is over.
So far so good Zack hasnt shown any signs of them but we still have until the 22nd for him to come down with the virus. Our new home is nice, its actually a little efficency really, it has its own kichenette! I kind of wish that we could stay right here until we go back to Maine. Which brings me to another issue. I dont think that we are going to be headed home until the 1st of December. I havnt spoke to Dr.Small about it yet but I was thinking that I (we) really cant be making a trip to NYC every week for apts and think that life will return to normal, so I think until Zack dosnt need to be seen here for at least 2 weeks or so we will just stay here and suck it up. I think that the virus is going to keep us here anyways. Zack is feeling pretty good. He is still weak but I am getting him to excersise as much as I can but that means only about 5-10 min walks and then he sits in his stroller for a while and then walks again. I guess its better then nothing. I know that when we finally get home it wont take him long to get his energy level back to "full throttle" its just now its so limited on what he can do. He is weighing in at almost 42lbs!!!! and his moods are a tiny tiny bit better. He is still on the steroids but they are still coming down on them weekly (today he will be at 10mg am 7.5 pm from 10 and 10) so as you see its a slow process. I think it will be the middle of january before its officially out of his system! I just need to hang on a little while longer Ha!Ha! Maybe when Dad comes down for Thanksgiving he can lay down the law!! YEH RIGHT! He is more of a push over then I am.....I can say that I might get a little more sleep while he is here. The Ronald House is having a huge Thanksgiving celebration so I guess I dont have to worry about "whats for dinner". Its going to be strange not cooking dinner because for the last 18 years I have done my own. I dont think Zack is going to care one way or the other but I can tell you that we better be home by Christmas! Blake might be coming down with Lloyd this time because Zack has been asking for him alot latley, more then usuall!!! Zack has an apt. with an ENT tomorrow and then we have clinic Friday so I will fill everyone in this weekend a little more about when to expect the "Z" man. AND I want to thank Janet and everyone that had a hand in the fund raiser for Zack at her work! THANK YOU ALL
Friday, November 7, 2003 12:21 AM CST Hello everyone! Well finally Dr.Small has given us an idea of when we should be home by!!!! She said that she is going to work on getting us home by thanksgiving. I am very happy about it but I still have this little voice inside of me telling me not to get my hopes up, because you never know what could happen in the next few weeks. There has been an outbreak of the chicken pox here at the house and a few people are in the hospital and some others have had to leave and find housing at a hotel until december. They are the ones that got definate exposier. I have had to backtrack the last week and try to remember if Zack had any contact with the kids that are in the hospital. I will tell you that its been very nerve racking. I am just praying that he stays chicken pox free. That would definalty put us back in the hospital. Zack had his sinus CT today but I can almost guarentee that those arent any better. I feel like I am on pins and needels right now because of the virus going around and then when Zack coughs or looks different in anyway I think Oh My God maybe he does have the chicken pox. I will be glad when thats all behind us. ok I am going to go know and get Zack something to eat.....again!
Thursday, October 30, 2003 3:17 PM CST Here I am again...over 2 weeks and no entry!! Sorry "once again". First off for those who noticed in the heading Zack has decided to spell his name the way it sounds so from now on I will be spelling it with a "K" not "H". I may have already told everyone that but Mr. Zack noticed that his name was still spelt wrong on his page so I needed to fix it! Zack is doing very well so well in fact that the doctors have started to decrease his steroid dose. Its a good thing because once he is off of those then the other meds that he is on will start decreasing as well! We are still in clinic 3 times a week and our days are usually long ones. The doctors told me that he would probably have some mood changes during this treatment (because mostly of the steroids) and they were right!!! He also hasnt been able to get good sleep for the last 2 weeks or so and that has just added to his mood swings, and let me tell you they are swings. He was watching Daddy Day Care the other day at clinic and he started to cry when the little boy said that he was going to miss his daddy!!!! and then about 15 min later he was so mad at me because I didnt get his pizza quick enough that he yelled out "YOU ARE NOT MY MOTHER GET AWAY" and then another 15 min he is laughing out of control at the clowns that were visiting the clinic. Needless to say coming down off the steriods is a good thing! His liver functions are still coming down and his bilirubin is almost at a normal level. They have really slowed down the last week or so but its ok with us because they are still coming down and that is all we care about, he is out of the danger levels now and he looks and feels so much better that they can take all the time they need now to get to normal function range!
Zackand I have done a few fun things in the last couple of weeks. We went to a Giants game and got to meet some of the players after the game! We got to go down to the field before the game and watch them warm up. It was fantastick. We ate brunch and dinner inside a huge tent that is for family, friends and "special guest" of the players, that is were I took Zack to meet some of the Giants current players and some alumnis. He loved everything about the whole day. We had great seats they werent on the field but they were good none the less, and they got alot better when Cuba Gooding JR. sat down beside us!!!! He was very nice to Zack and we got a picture of him and Zack together! He was there doing a promo during half-time for his new movie Radio. He was there with a few of his friends but no "body guards or anything"
Last week we went to dinner and to a movie with the quarter back Jason Garrett and his wife. Zack was so excited not only to see Jason again but also to see the movie Good Boy in a theatere because he has never been to a theater up till then. When we got to the theater they gave us a private showing!! I was really relieved because I was going to have Zack wear his mask at the movie and this way he didnt have too! He had so much fun. We have also gone to the Bronx Zoo and to the Big Apple Circus. The weather down here is still nice. No snow yet! Unlike up home. I almost fainted when I was talking to Barb last week and she told Josh to shovel the steps off before school!!!! I cant believe that the time has gone by like it has. Its hard to imagine that when we left Maine the grass was just about ready to get mowed for the first time and by the time we get back there will ice on the ponds.
Zack talked to his dog the other night on the phone. It was so cute because Lloyd said that she heard his voice on the speaker phone and she settled right down.
It has been a pretty emotional week here at the house because 2 kids passed away. They were both in there mid teens and had been undergoing treatment for quite a while. Its so damn sad and its hard to understand why these kids have to go through so much to have it just end in death. It scares me so at times but then I just take a minute say a good prayer and give it all back to the good lord. I have bad days dont get me wrong but when I start thinking about things that could happen or things that I dont want to happen to Zack something deep down tells me to keep focused on the present and be happy with what is right now. I know that that is God helping me through that bad time,what else is stronger then that "fear of the unknown"
Mom we got your Halloween email Zack thought it was very cute. Mimi, your bread and cookies are great as usuall, Zack told me that you called last night while I was still in the dining room, sorry that I missed you.
Zack is going to be in the NYC marathon for kids on Sat. it is a 1/2 mile run/walk, I wish that I had gotten the info earlier because he could have started collecting sponser money to go toward the Ronald House and also gotten some cool prizes as well! Oh well he is excited just to go to the marathon. Then on Sunday the "real" NY marathon is being run and we are going to cheer on Rich (from the Ronald House) and also the oncology doctor at Sloan Dr. Fred Kirshner. Puff Daddy is running it in as well and I am sure there are other "celebs", we have seats either up at the end of our street or in front of the hospital. I am going to leave it up to Zack were we sit. Its all about King Zack you know!!! Well this entry is probably the longest one yet and I think I need to start coming back to this page more often. I am going to close now. We have a halloween party tonight at the house...its supposed to be a Big Bash and then another one at the clinic tomorrow and then tomorrow night again at the house they are doing something special for the kids for trick or treat! Zack is going to be Mario from the Super Mario Bros. nintendo games! He looks so cute. If I can figure out how to scan pictures I will show you all but if not I have the photo album that is full of very very nice pictures.
Ok for all that stuck through the whole entry a say good bye and good night.
Thursday, October 30, 2003 3:17 PM CST Here I am again...over 2 weeks and no entry!! Sorry "once again". First off for those who noticed in the heading Zack has decided to spell his name the way it sounds so from now on I will be spelling it with a "K" not "H". I may have already told everyone that but Mr. Zack noticed that his name was still spelt wrong on his page so I needed to fix it! Zack is doing very well so well in fact that the doctors have started to decrease his steroid dose. Its a good thing because once he is off of those then the other meds that he is on will start decreasing as well! We are still in clinic 3 times a week and our days are usually long ones. The doctors told me that he would probably have some mood changes during this treatment (because mostly of the steroids) and they were right!!! He also hasnt been able to get good sleep for the last 2 weeks or so and that has just added to his mood swings, and let me tell you they are swings. He was watching Daddy Day Care the other day at clinic and he started to cry when the little boy said that he was going to miss his daddy!!!! and then about 15 min later he was so mad at me because I didnt get his pizza quick enough that he yelled out "YOU ARE NOT MY MOTHER GET AWAY" and then another 15 min he is laughing out of control at the clowns that were visiting the clinic. Needless to say coming down off the steriods is a good thing! His liver functions are still coming down and his bilirubin is almost at a normal level. They have really slowed down the last week or so but its ok with us because they are still coming down and that is all we care about, he is out of the danger levels now and he looks and feels so much better that they can take all the time they need now to get to normal function range!
Zackand I have done a few fun things in the last couple of weeks. We went to a Giants game and got to meet some of the players after the game! We got to go down to the field before the game and watch them warm up. It was fantastick. We ate brunch and dinner inside a huge tent that is for family, friends and "special guest" of the players, that is were I took Zack to meet some of the Giants current players and some alumnis. He loved everything about the whole day. We had great seats they werent on the field but they were good none the less, and they got alot better when Cuba Gooding JR. sat down beside us!!!! He was very nice to Zack and we got a picture of him and Zack together! He was there doing a promo during half-time for his new movie Radio. He was there with a few of his friends but no "body guards or anything"
Last week we went to dinner and to a movie with the quarter back Jason Garrett and his wife. Zack was so excited not only to see Jason again but also to see the movie Good Boy in a theatere because he has never been to a theater up till then. When we got to the theater they gave us a private showing!! I was really relieved because I was going to have Zack wear his mask at the movie and this way he didnt have too! He had so much fun. We have also gone to the Bronx Zoo and to the Big Apple Circus. The weather down here is still nice. No snow yet! Unlike up home. I almost fainted when I was talking to Barb last week and she told Josh to shovel the steps off before school!!!! I cant believe that the time has gone by like it has. Its hard to imagine that when we left Maine the grass was just about ready to get mowed for the first time and by the time we get back there will ice on the ponds.
Zack talked to his dog the other night on the phone. It was so cute because Lloyd said that she heard his voice on the speaker phone and she settled right down.
It has been a pretty emotional week here at the house because 2 kids passed away. They were both in there mid teens and had been undergoing treatment for quite a while. Its so damn sad and its hard to understand why these kids have to go through so much to have it just end in death. It scares me so at times but then I just take a minute say a good prayer and give it all back to the good lord. I have bad days dont get me wrong but when I start thinking about things that could happen or things that I dont want to happen to Zack something deep down tells me to keep focused on the present and be happy with what is right now. I know that that is God helping me through that bad time,what else is stronger then that "fear of the unknown"
Mom we got your Halloween email Zack thought it was very cute. Mimi, your bread and cookies are great as usuall, Zack told me that you called last night while I was still in the dining room, sorry that I missed you.
Zack is going to be in the NYC marathon for kids on Sat. it is a 1/2 mile run/walk, I wish that I had gotten the info earlier because he could have started collecting sponser money to go toward the Ronald House and also gotten some cool prizes as well! Oh well he is excited just to go to the marathon. Then on Sunday the "real" NY marathon is being run and we are going to cheer on Rich (from the Ronald House) and also the oncology doctor at Sloan Dr. Fred Kirshner. Puff Daddy is running it in as well and I am sure there are other "celebs", we have seats either up at the end of our street or in front of the hospital. I am going to leave it up to Zack were we sit. Its all about King Zack you know!!! Well this entry is probably the longest one yet and I think I need to start coming back to this page more often. I am going to close now. We have a halloween party tonight at the house...its supposed to be a Big Bash and then another one at the clinic tomorrow and then tomorrow night again at the house they are doing something special for the kids for trick or treat! Zack is going to be Mario from the Super Mario Bros. nintendo games! He looks so cute. If I can figure out how to scan pictures I will show you all but if not I have the photo album that is full of very very nice pictures.
Ok for all that stuck through the whole entry a say good bye and good night.
Wednesday, October 15, 2003 1:47 PM CDT Hello to everyone!!!!! I hope that I didnt worry anyone too much by not coming in and updating this latley. I cant believe that more then 2 weeks has gone by since I have been in here! Well as I say no news is good news! Zach had a GREAT birthday! We want to thank everyone for helping make his big "6" the greatest day ever. He started getting cards and packages the thursday before his birthday...(tuesday) and kept getting them until the thursday after! He got over 500 birthday cards! He has so much stuff to do now he will never get bored.
Lloyd has gone back to Maine. He left last thursday....back to work! My mom and brother came that night. Zack almost didnt recognize his uncle, because he grew a beard!! I think my mom was a little overwhelmed with NYC, but we had a nice visit and hated to see them go. It will be so nice to vistit our family at home instead of here. Denise was here the weekend before his birhtday and brought down gifts from everyone up home!!! What a time he had with that and then he had a party on his birthday here at the Ronald House!! as I said he really had a GREAT birthday, and thanks again to you all. Now down to business......Zack is impressing the doctors once again! His liver functions started to go down while we were in the hospital and they havent slowed down yet! He isnt the yellow little boy like he was and his energy level is slowly coming back. He is having a hard time sleeping (because of the steroids) but he is eating like crazy! Yeh! When we left the hospital as you know his weight was down to 16kg he is now 17.9kg. They started to decrease his steriod today it isnt much of a decrease but at least we are on our way. I have no idea when they will be letting us go home but we are doing ok, and as long as Zack keeps up the good work thats all I need to keep me strong. Ok I will sign off now and keep in touch soon. Zach just came down and said for me to tell you all thanks for all his birthday presents and cards he had a great time opening all of them, and he loves everyone very much and said that he didnt know everyone loved him so much. (so cute)
Sunday, September 28, 2003 1:37 PM CDT Its looking like we get out of here on tuesday! I know that it seems that everytime I say we are getting out it get postponed....well your right and that is why we havent told Zach of a day that we are getting out, but today the doctor told Zach herself! I am not sure if it was a good idea because if something happens and we have to stay then he is going to be very upset. As far as his emotions he seems to be having good and bad periods. He felt like getting out of bed yesterday morning and we did some halloween crafts and he seemed very "up" but then by the afternoon he was in the depressed slump again. Today I didnt think he was going to be in the "slump" again but I was wrong...he is. It is very hard to understand what is going on in his little mind and it is tearing us up so much. I wondered if it was because everyone including me and Lloyd are constantly asking him how are you feeling or are you ok and I thought well maybe he is just plain sick of being pestered all the time. He did say the other day that he just needed to be alone!!!Can you imagine?! Today he got on the scale (which is part of his daily routine) and he actually got mad at the scale and started to cry and said "I want it to say more"...so then i think man obviously the point of "Zach you need to eat or Zach what did you eat today or Zach you need to get some weight on those bones, is starting to emotionally take is toll. So I have decided that we, everyone needs to watch what they are saying to him. He is counting the days to his birthday and it does look like we will be at the Ronald House for that. What we are trying to do now is to get his medicines changed to orals its hard because he has always had a really hard time and now we are asking him to take way more then he has had to in the past, plus most of them taste like crap!! Ok I need to go Zach says that he would like to play Disney.com! I will update soon.
Friday, September 26, 2003 10:42 PM CDT I want to say thanks for all your thoughts and prayers. We started the anti-rejection med today. It isnt very much but it is a strange taste its like it takes the taste out of anything and makes a very blah flavor. pretty gross really I am not sure how Zach is going to handle it. Today it took a while but when he finally decided that he would take it he seemed able to do it. He has to mix it with 2oz of either water or OJ. We are not sure if its the steroids or just his emotions getting the better of him, but he is a very depressed little boy. Today he didnt get out of bed and didnt want to play with anything or anyone no matter how hard we tried, Dad finally got him to take a walk around 9:30 but he only wanted to go one time around the floor. (we got the doctors to ok letting him out of his room...but he has to wait until noone is in the halls and he has to wear a mask and gown)
The doctors have told us that we should be able to get out of here on Sunday. We decided not to tell Zach because if something changes and we cant leave he would be even more depressed. I am hopeing that in the next day or so the steroids will even out in his body and he wont be so emotional. It is so hard because he is on the edge of tears in almost anything he talks about and its not a mad cry its a sad cry. I do hope that getting out of here makes him happy even if its only to the ronald house. I hope tomorrow finds him in better spirits.
Thursday, September 25, 2003 7:15 PM CDT Hi All,
I havent been on for a few days because things have been pretty up in air and I wanted to be able to write and entry that was somewhat understandable. As know Zach is back in the hospital, and that he had the liver biopsy last wednesday. It was very painful for about a week. He had a hard time coming out of anesthesia and keeping his oxygen level up on his own. He was so hoarse that he couldnt talk for almost 2 days. He was so sore that he couldnt move on his own and when he needed to cough he would try to keep it in because it hurt his belly so much. He got very swollen after sugery and that didnt help the pain at all. They didnt want to give him too much pain med (because most of it is hard on the liver) so it was very hard getting him to be comfortable. The doctors would go up on it but it would only be a tiny bit at a time so I feel that by the time we finally reached a "comfort" zone he had already developed the pneumonia in his right lung. But the good news is that in the last 2-3 days he has been able to drop way back on the pain med and his lungs are sounding very good. His incision should be healed in another 5 days or so. He is very aware that its there but now that he is finally feeling better he isnt so scared for anyone to get near it. Now to the other part of this stay. As you know the reason for the biopsy was to get an answer to why his liver functions were going haywire. The doctors did not come to this conclusion easily but they have decided that they are going to treat Zach for GVHD. We started steriods yesterday and we will start an anti-rejection drug tomorrow. Depending on the timing of when you come down with the GVHD depends on the diagnosis of acute or chronic and Zach is right inbetween so they havent decided what to call it. It would be better for Zach I believe if it was acute. There are 4 stages of gvhd mild, moderate, severe & life threatning...he is right now somewhere in the middle of moderate to severe. The disease right now is isolated to his liver. Right now his liver is still functioning ok. I am saying right now alot I know but there is alot that could happen before they get a handle on it and on a lighter note there is also alot that can be done for him and we have just started. Our hope is that his body responds to treatment quickly and it stops it at the damage that it has done and he recovers. or it could not respond at all and stays in the liver does more damage and that would mean a liver transplant, the last senerio would be that he didnt respond to treatment and it spread to other major organs. Its hard to stay in this moment without thinking of what could and might happen, but that is what we have to do. I know that this news probably blows everyone away and I wish that I didnt have to tell you any of it. We really have no idea when we will be home. I will keep you all posted with his progress as often as I can. **We got the card from everyone at A&E Robbinson (his favorite store to hang out and eat PIZZA) thank you guys it was a nice surprise. And I do want to let everyone know that today was a great day for Zach he felt the best he has felt since we got back in the hospital, he actually ate almost like his normal self and he walked around for the first time without any pain.....so it was a good day
Saturday, September 20, 2003 9:33 AM CDT Ok here goes.....Good news first Zach has a t-cell count of 181 and B-CELL is 30percent the docs have done the blood work for the fucntion of those t-cells and we should be getting that back soon. It is still early to do that function test but if there is function then its just an added bonus to the news of B-CELLS! and the return of his T-CELLS. Although the chance that his t-cells (already being donor from the 1st transplant) not coming back was pretty slim there was still a chance....and we all know that there is something to be said about "rare chance" Now here is the bad news..... We are back in the hospital:(
As I had said a few days ago his LFT's were starting to elevate, well they havent stopped elevating and now they are just plain HIGH. His bilirubin is very high as well. Nothing has been a text book show so they are still unable to say what is going on. They are pretty sure that it isnt GVHD because of the way the counts went up and of course other reasons as well. Also the test for other things like viral or bacterial have all come back neg. He has also had a liver biopsy and I want to tell you that he is very sore from that. We hope its only sore from the biopsy and not that his liver is becoming tender...before the biopsy he wasnt tender at all. The liver is paler and firmer then it should be, there are no signs of sirosis (sp?). we should be getting more of the results from the other stains in the next few days. The amount of pain that he is now is hard to take because he was doing so well (well on the outside anyway) before we put him through the biopsy. We think that it was just really the timeing more then anything. I think that if we didnt get him in here and start it all that by today he would be much worse off. It keeps looking more and more like some sort of reaction of a combination of medications.
So I think that we would have been home by next week before his liver troubles but now I have no idea when we will get there. His 6th birthday is on the 6th of October and I really wanted to be home for that, he spent his 1st B-Day here now it is looking like history will repeat itself. I hope not because he really misses everything about home. We need some extra prayers for our little man.
On a ligher side though he did have a great time at the Yankee's game last week. They treated him like VIP and the president of the yankees and his wife asked us to come back before the end of the season!!!! They really got a kick out of him, and so did the players and coach. He got a ball during practice and then the coach and about 5 players came over to him and signed it and we got some pictures as well. He got to go into George Steinbreners office and sit at his desk and tell some of the "guys" what the plan was for a new stadium!!! Including Roger Clemens agent! They all loved him! He was asked to do the game promotion which meant that between inning 3-4 his picture would be shown on the jumbo-tron!!!! and of course he did it and when his picture came up he waved his Yankee flag and waved to everyone around...so the crowd was cheering right along with him and for him. He really had a great time and we will go back if at all possible. (I know that its the Yankees but Zach has no idea that its his dads team rival...and Dad will just have to grin and bare it one more time)
Well I will write again as soon as we get any news. Our new tn here at the hospital is 212-639-4085 or 4086 either one rings into the room. Our room number is 533. We still have our room at the Ronald House and if you want to send a letter please send it there because with any luck we will not be in the hospital for much longer !
Wednesday, September 10, 2003 1:27 PM CDT Hello to everyone! We just got out of clinic and we will be going back next week. Unless they need to see us sooner! He had a sonogram of his liver today as well. The functions they are watching in his liver were still high on monday so they wanted us back today to do more bloodwork and the sonogram. We havent got the results back yet but I am sure by the end of the day we will. My main concern is that it is GVHD but the doctors are reassuring us that it isnt. They cant say 100% that its not but with all the other counts staying "good" they really can say they highly doubt it at this time. GVHD (graft versus host disease)
Dr.Small said that if his liver wasnt giving them these questions then she would have sent us home today!!!!! Oh well its ok because next week is a busy week for Zach he his IVIG and his Pentamadine so its actually going to be easier staying here and doing it then trying to get things organized in time to do his tranfusions up home. But I know that this liver trouble is going to work itself out and its probably nothing signifigant and we will be home by next weekend. He is looking great and feeling good. He is taking is medicine for his sinus infection...so that has got to be getting better. He is sounding a little less stuffed. Well we need to go get ready for the Yankees game! If you can find it on TV keep an eye peeled for the little baldy! (I know not many of you will want to watch the Yankees but just for a minute and then you can shut it off) ha!ha!
Sunday, September 7, 2003 12:17 AM CDT We went to clinic on Friday to get his CT's done. What a time we had...2 of the 3 machines were not working so it ended up that our 10:30 ct was a 12:00. And they never let us leave the stinking waiting area because they would say "oh we have the machines up and running now so it should only be another 10-15 min. So to make a long story short our 1 hour clinic visit turned into a whole day again. He needed to get some blood work done because his LFT (a liver function) was high and it had been slowly going up over the last few blood draws. Thankfully the blood work that they did on friday showed it starting to go down, but they are just not sure what is or was making it elevate. The only medicine that he has been on that would make it go up is his prilosec (which he takes for his acid reflux) they want us to stop it over the weekend and see what is count looks like monday. So far the acid reflux hasnt bothered him but I hope that we dont have to stop that because it is a big trouble spot for him. The ct did however show that he does have a good case of sinusitis. So he is now on Ceftin. It really taste bad and he hates taking it (whats new the only med that he dosnt mind taking is his singulair oh yes and the claritin both disolve very fast and they dont taste bad either. I have and the doctors have noticed that his hearing seems to be getting worse! They wanted to set him up with a hearing test but we decided rather then him starting to see someone new down here and making him go thru just one more thing we would wait until we got home. We reassured them that we have a GREAT doctor up home that is very very much aware of Zach and all his ear troubles and we have all the faith in the world in him and that he will take care of Zach when we get home....and Zach really adores him too, which makes the whole visiting another doctor that much easier on us all!!! This week his primary doc will be in and we can ask her about how much longer she plans on keeping us. We are all so ready to go back home.
Lloyd got our new pool liner in while he was home. He says that it is beautiful. I dont think we will be using it this year by the way the weather sounds up there. I guess that the make a wish foundation is going to take Zachs camper and get it to the dealership and fix the leak. I am glad because I really want to be able to take Zach up north for a little camping visit this fall.
I will talk agian after clinic on Monday.....hopefulley as I said about 2 weeks ago, with a date for coming home!
Tuesday, September 2, 2003 3:18 PM CDT We went to clinic today and counts are looking great! He had pentamadine today (every 2 weeks). His doctor will be in next week and she is the one that we have to ask about coming home! Zach has a chest and sinus ct on thursday. They have changed his nebulizer med to a medicine that has less of a stimulant and wont make him so anxcious and cranky. He is also starting a allergy medicine,hopefully the ct will just show that its all allergy andnothing any worse. The weather here has been cold and rainy for the last few days. SUMMERS OVER!
I will be back after clinic on thursday.
Wednesday, August 27, 2003 10:36 AM CDT Zach is doing very well. We went to clinic on monday and the doctors dont need to see us until tuesday! He had a nasal swab only because he is still coughing and his nose started to run.....I still believe that its his reactive airway disease. But if it helps clear Zachs "bill of health" then let them do it. I havent heard anything back from the doctors about the results (no news is usually good news) Nobody wanted to give us the ok to head for home....but if next week they again say dont need to see him for another week then I am going to again ask (pleed) with them to let us go home. I dont know what good it will do I really think that we will go when they bring it up and no sooner. Today Zachs cousin started school. Zach was suppose to start right along side of him....I havent told Zach that school has started because we talked about school a couple of weeks ago and he got so upset that Blake was getting ready and he wasnt and he said that Blake cant start without him. It breaks our hearts that he isnt going to start today. I hope to get him a tutor when we get home so when we get the green light that he can start he will be up to speed with everyone else. Lloyd is home and said that the weather has already turned to FALL. I cant wait to be there. Even though we missed the whole summer I am looking forward to what ever season in Maine. Well Zach is hungry so I better run while he is requesting food....it is very rare that he does.... Bye till next time.
Thursday, August 21, 2003 1:15 PM CDT We went to Clinic yesterday and we dont have to go back until next Monday! Things went good. It was a very very long day because he had 2 different transfusions and also regular stuff they always do at clinic. We got there at 8:30 and left around 4pm. He was able to get off one of his oral medications....which is a very good thing because he hates taking any of them. He is though now on his nebulizer 3-4 times aday because his asthma has really started to bother him. We know its because of the pollution down here plus the regular muggy weather. Just one more reason we would like to be able to take him home. I know its been muggy up there too but there is no pollution in good ol' East Corinth!
He got the package from Greg and Bev! He loves the rug he has been playing with his match boxes on it since it arrived. I know that they are headed to see a Nascar race this weekend....we cant wait to hear all about it.
Zach still hasent started growing any hair but the ones that didnt fall out have grown some so I had to cut them last night. He wanted to take the clippers to mine. I will tell ya the way I feel I almost let him! We are all getting pretty home sick. I am going to run this question by the doctors when we are in clinic on Monday....About how much longer are we looking at before we can head for home? I know they will probably be as vague as possible because they hate to say anything until they bring it up...but its worth a shot.
I will close for now and hopefully the next entry I will have a road trip planned. BYE
Monday, August 18, 2003 3:38 PM CDT Well we had a very interesting weekend! We lost power on Thursday around 5pm, and that was just about the time our "company" was supposed to be arriving at Port Authority here in NYC. Well they never made it to Port Authority because the bus driver got so stuck in traffic (because of the blackout) that he basically told everyone OUT and YOUR ON YOUR OWN!!!! So there they were on the opposite side of the city and no idea how to get over to us, but they luckily found someone to get them headed in the right direction but never did make it here until around 10pm. I was so relieved to see them. The power came back on around 10am Friday. Thank God. We did alot of fun things while they were here, it was so good for Zach and Blake to be together. We spent all of Friday at Central Park and then on Saturday we went to Ground Zero and then to the Empire State Building (although it was closed because of the computer that runs the elevator still hadnt come back up after the black-out) We also saw the Statue of Liberty, it was so nice out by the water there was an actual breeze and nice green clean grass that you didnt mind sitting on. The city was very empty this past weekend and its because of the black out alot of the stores couldnt open up and the grocery markets all lost all there food so people had to travel either to NJ or other parts of the state to shop. So in a way it was a good time to come visit (we didnt fight crowds and it was better for Zach with less crowds) but on the other hand they didnt really see how crazy this town is (OR DID YA)
We had clinic today....and what a circus that was. Everyone that had an apt on friday was there plus all of us that were suppose to be there today. Zach is back on a nebulizer and puffer now. He started coughing quite a bit on Sunday and i have been worried that it was the respitory virus that we had been told about on thursday. The doctor is pretty sure that it isnt and that we are now doing the nebulizer with Zopanex (?) 4 times a day. He really thinks that its just his airway disease flareing up because of the smog, heat, muggy air....etc.etc.. here in good ol'NYC. We will be going back in a couple of days to be rechecked on that if he hasnt improved then the cat-scans start. He also has his IVIG and pentamadine this week...so we have a couple of long long days in clinic this week. But its better then needing to be back in the hospital inpatient!
God Bless
Thursday, August 14, 2003 1:44 PM CDT Hello Once again..
We just got back from a day at Clinic. His counts are very good! The doc today was very impressed to see that we have not needed the "boost"in two weeks. We will have to go back on Monday. There is a respitory virus going around right now so we have to be even more cautious. We can not wait to get back to good ol' clean Maine. We are on day +47 so we are only 3 days till the half way mark. Once we get to day 100 there are a few things that change and a few things that we "shouldnt" have to worry about. Its still going to be a long road but right now its the one thing that keeps us plugging along day by day. I am closing for now. Everyone have a great weekend and we will be back on Monday.
Saturday, August 9, 2003 5:28 PM CDT Just a short entry to let you all know that Zach is still feeling and doing well. We had to go back to clinic yesterday for counts and to adjust one of his medicines...but that was it. It still took 4 hours! We are going to have some other visitors by the end of next week. Zachs cousin Blake and his step-mom Denise. He is so looking forward to seeing his best bud. We got the package from Denise and Karen today. Thanks so much the stuff is great.
The only trouble Zach is having right now is his acid-reflux. It is really bothering him in the morning...so much that he actually gets sick to his stomach. I hope now that we have finally gotten on the dosage that he was on back home he will start feeling some relief.
Just so you know the weather here isnt any nicer then up home.....I think its probably about 100% more humid though down here...there isnt any room for any wind. HAHAHA!
Happy Birthday Barb.
Wednesday, August 6, 2003 3:28 PM CDT We went to clinic and his counts are good! No GCSF! he is holding his own counts pretty well, we will go back to clinic on monday. So that left me with the question again....can we go back to Maine for a few days? Well the answer was a big fat NO. It is still so early in the game which means there are many things that could go wrong. It really looks like we are going to be down here for another couple of months. It brings tears to my eyes right now as I am typing it so you can imagine how well I did (or didnt do) in front of Dr.Small. There are rapid test that can be done here that I guess EMMC just cant do. He is feeling good all in all. His apetite is still about the same (picky as ever) and put restrictions on top of a picky eater and that spells "pickier". His weight is still holding at a whopping 39lbs.
I want to say thanks to Scott, Val, Ryan and Brittany Modery they sent down a signed Home Depot car and a t-shirt for Zach a few weeks ago and I have wanted to let everyone know how excited he was when he got it, then of course it brought up the conversation again about how Tony was in Bangor a few weeks ago and the he wants to meet Tony Stewart....Maybe someday I told him we will be able to go on a family trip to meet him.
We went on another NYC Bus Tour (this time it was with the whole Ronald House) and guess what it started to rain at just about the same place it did on our first trip. Oh well we didnt care at least we were doing something outside.
Bye for now
Monday, August 4, 2003 12:51 AM CDT Well we are back from clinic and things went very well! The results of the marrow aspiration have come back and he is 100% donor!! It will still be a while before we can test his T & B cell function but things are as good as they can be right now. His other counts that they monitor all the time looked good today. We didnt need the boost of gcsf today like we did last monday, although he will probaby need it on Wed. So we will go back to clinic then and see Dr.Small (Zachs primary doctor down here) maybe he will be able to hold his own but they think that he will need a little boost to keep his counts up. Zach knows that it may mean another shot but he is very brave...even when he really hates to be! We havent acsessed his new port since we left the hospital as inpatient, because his skin was so broke down from the chemo and the patch they used to cover it after they put it in, it would have been way to much for him to get it messed with so he has been getting just the regular blood draws when we go in. He is getting very used to them drawing blood still he hates it. (all of you that have been there when he is acsessed you know what I am talking about) but it is getting much easier. maybe by the end of the week they will be able to get to his port (Zach willing) ha! ha!
The (gang) left this morning. Zach was sooo happy to see them. It was very nice to have familiar faces to see and to talk to. I hated to see them go. It made me even more eager to get home and back to normal things.
We stopped up to the 5th floor of the hospital this morning to check if any mail was there and there was.....Zach says thank you to Mimi and Papa and to Chet & Jan Smith for his cards and also to Uncle Greg and B for his new Thomas Puzzle. (another piece to the collection) Thanks to all once again for keeping us in your thoughts. Hope to see you all soon.
Saturday, August 2, 2003 2:34 PM CDT So sorry that it has been so long since our last enry. I havent been able to use the laptop in the room because you need a callingcard to even make local calls from there. So I have had to hit the computer room when its open. Things are going quite well for us. We had outpatient clinic only 2 times last week the first day was monday (the day after we were released) and then again on wednesday. His counts were low on monday so he got a shot of gcsf and then his counts looked much nicer on wed. We have clinic on monday. Ryan, Levi and Marie are on there way down today, they are going to stay here with us until monday! Zach is sooo excited about there visit. Levi has no idea but Dad scored Mets tickets today for the game tomorrow!!!! The Ronald House had 2 tickets given to them and we were the first ones to ask for them this morning. Levi will be very surprised. Being out of the hospital is great but I have to say its more nerve racking then I had expected. I think that if we were home and out of isolation then it wouldnt be so bad....but in this city it is different there are so many people. When we are outside he wears a mask most of the time unless we are somewhere and there isnt many people. Which is very hard to come by.
I am very happy to find out that Dr.Jan is home from her sabatical. We have missed her and so much has gone on in the last year that she will have to clear her schedual for the day for Zachs 1st apt! I have updated the address with our Ronald House info. We will talk to you all soon.
Sunday, July 27, 2003 11:15 AM CDT Hi all,
This is a quick note to say WE ARE OTTA HERE!! We should be at the Ronald House by supper time or sooner. We are waiting for pharmacy and discharge papers and we know how long that can take....but all 3 of us will be sleeping under the same roof tonight. We have to go to outpatient clinic tomorrow and then we may get some sort of "game plan" for the next few weeks or so. We havent got the test results back from the marrow aspiration as of yet, but by the looks of his counts today it looks like there is alot of graft movement going on!!!!
Talk to you soon
Saturday, July 26, 2003 7:00 PM CDT Well hopefully this will be our last journal entry made here in the hospital. We hope to all be back at the Ronald McDonald House tomorrow night. I finally went back to the house today and got the room ready for Zach. He is doing quite well. I dont know how often we will have to be visiting outpatient clinic but how ever much its better then being in here 24/7. Thank you to Andrew Speed and his MeMe, we got your package the other day and he loves it. I set it all up for him at the Ronald House. Also to Uncle Greg and B, he loves his puzzel he said that he wants to glue it together and hang it on his wall.....so when we get home that sounds like a project for someone!!!
Talk to everyone on the outside!
Wednesday, July 23, 2003 1:32 PM CDT Good Afternoon,
We thought we were getting out of here tomorrow but plans have changed a bit and it may be after the weekend. But thats fine I guess. They are trying to get his home meds figured out and also get him off the remainder of iv. He had his new port put in and also the bone marrow aspiration done yesterday so today he is pretty sore. He is getting his IVIG transfusion today so he is taking a good "drug induced" nap. We are going to start bringing things back to the Ronald House today and I will spend the nite there and try to get things semi-organized in our new summer home! The room there isnt really any bigger then the room at the hospital! We got the package from Erin yesterday! He loves it and I am sure that it is going to be one of those toys that we will be walking around (because once he sets it up he isnt going to want to move it). Thank you Erin
We also got the homemade joke book from Wince & Barb today. He hasnt seen it yet because like I said he is sleeping right now but I am so sure that when he wakes up he is going to be crazy about it. I have checked out the websites that you all have sent for him for new "material" and they have been great.
He really is doing good. We are having a hard time trying to get him to take the medications by mouth. One of them is 15cc thats over 2tsp, another is 1/2 tsp, one is 5 pills, and then the other is a mouth swish. They have also said today that they will be adding 2more. He hates doing oral anything so this is going to be a challange because they are all at least 2times a day. Any body got any ideas?
My grandmother sent Zach a card the other day (but it was really from his dog Scooby) he was so excited that Scooby did that, it was really cute. Thanks Gram.
The other nite I had Zach in the tub (which he just started finally feeling like getting into in the last week or so) so he was sitting there and he made the comment that he always makes while getting a bath... mom I dont want you to wash my hair this time! Well I looked at him with a puzzeld look and then he rememberd that he didnt have any hair to wash. We laughed!!!
I will talk to you all soon
Sunday, July 20, 2003 8:12 AM CDT hi!
Zach finally ate something last night for supper!!! He ate pizza! I was so happy I was in tears. He drank some but not much, he may today though. He ate that pizza like he had been eating all along. The nurse gave him some nausea medicine just in case his belly couldnt handle all of that at once, but he did fine! He never complained at all. But thats him. We lost our primary day nurse Tricia, she has gone on vacation for 2 weeks so by the time she gets back we will be gone. I am going to track her down when we go to outpatient clinic so she can come down and see
Zach. I will miss her, she is like having a friend here. Even though we only knew her for a short time 5 years ago and the relationship was just here at the hospital she still left such an impression on me I guess that it felt like finding a longlost friend when I saw her this time. She is such a good nurse and a beautiful person and Zach really loves her and he told her that the other night. It really helps when you have someone that you feel is really there for you and your child during hard times. I hope that I dont ambaress her if she reads this page! His counts yesterday were almost exactly like they were on friday:) They havent come in for today yet. The doctors have dropped 2 more antibiotics 1 has gone to oral and we will try that today. I am not sure how its going to go if he wont drink. He is going in for a new port on tuesday and they are also going to do a marrow test which means they will take out some of Zachs marrow (like how they did Lloyds) to see how he is truley grafting.
Zach got Grammie Raffords card yesterday he laughed so hard when I told him that your puppy rolled in the yellow paint on the road. He also got Aunt Carolyns card and the picures in it are great he didnt recognize Randy in the picture of him at his 10th birthday. Was that picture of the baby in the pool Zach or Blake?? I cant tell.
Zachs rash has started to get a tiny bit better but it is still terriable to try to get at it to take care of it. He has to still have morphine and that worries me because we cant leave her on that I am sure. If the cultures all come back that there is no type of "bug" and he still is having diareha then they will give him something to help stop it, but they dont want to mask any potential bug. I would think tat if there was something "growing" that it would of come back by now. It seems like its been forever since he started having it. I am sure it feels like even longer for him. I have said it before andI will say it again, he is such a trooper!
Well I will close for now. I will let you all know of anymore news as soon as the docs make there rounds.
Saturday, July 19, 2003 7:39 AM CDT Hello again,
This week has been a pretty good week for Zach. Although he is fighting a severe case of diarreha and a just as bad bottom rash. The rash has got so bad that before I can even attempt to touch him he needs morphine! Yesterday was the worst day of it, I hope that was the "eye of the storm" His counts are looking good! Yesterday they dropped down the cell stimulator again (he gets this during the day to help him bring his counts up) and eventually it will be stopped altogether. So I am sure that we will see a drop in this counts again but if he comes back up and holds steady on his own.....thats what is all about!!! So there is still no definate date that we will get out of here but I am thinking 7 more days or so. He isnt eating or drinking yet. He needs to at least be drinking for them to let us out.
We recieved the package from the girls at EMMC Peds floor. Thank you guys so much Zach loved going thru it and the Doh-Doh Island is a huge hit. Yeh the nuttybutty bars are a big hit too (for me). He also loves the Thomas lunch box that Uncle Greg and Beverly sent down. I have to say another thanks to everone that keeps in touch one way or another it means so much. Oh yes Zach wanted me to tell Brittany that she did a great job drawing SpongeBob and thanks for the movie. I think that we are going to have to rent a U-Haul when we come home to carry just the goodies that Zach has accumulated down here, between the box from Denise that had stuff from just about everyone on the Beech Grove Rd in it, to the prizes that he wins from Bingo nite here at the hospital!!! and everything in between! You all are great and thanks for being there for all of us. I cant wait to be able to be home and have Zach saying thank you to all in person!
Well Lloyd should be back around supper time tomorrow nite. Wish me luck I am about to order Zach some breakfast!
Tuesday, July 15, 2003 7:06 AM CDT Hello aall
I cant believe that so much time has past since my last entry. Sorry if I have worried anyone. (which I know of 2 people because one called me and the other sent me an email)
Sorry girls!! It is not because things are bad by any means. Things have actually been going very well. His counts are still going up. The doctors have started to take him off some of the antibiotics. He is down to about 6 antibiotics then his pain med (which he is now off the drip but he still has the option to use the "quick fix" if he needed it, but he hasnt) They have said that if he keeps going at this rate we should be looking at getting out of here by the end of this month! Then we would be staying at the Ronald House for a while. I dont know how long they will want us to do that. I havent asked, I dont want to get to far ahead of myself and end up getting let down if something happend. There are things that could go wrong and keep us here longer like a fever, if he dosent start eating, a reaction to being off an antibiotic or if his counts fell drastically or stopped moving at all. I am sure that there are other things but those are the ones that I am aware of right now.
Lloyd has gone back home for a week. I hope that when he comes back Zach will be eating because that may end up keeping us here. I am trying everything that I can think of but he just has no taste for anything. His mouth was so damaged with the sores and mucositis that it could take months for him to get his taste back to normal. I wish that I knew what he was or wasnt tasteing so I could help. I think that salty and sour is better but even his favorite thing salt and vinegar chips dont appeal to him right now. He feels so much better, he still gets tired very easy and he isnt getting out of bed much at all. If I get him to walk to the bathroom once a day then that is alot for him. I am hopeing that this week I can get him interested in the dance therapy that they have here. They just have the kids move even if its just sitting up in bed and waving there arms or something as easy as lifting there legs up and down. I know that it sounds pretty boreing but I believe that it will help us to get out of here I just know it. Well I can hear the docs out front of his door, so I will close for now....if they have anything new to tell us I will be sure to update this asap.
Wednesday, July 9, 2003 4:49 PM CDT Hello to you all once again.
My entry today is good news. His counts have started to come up. He is still in need for platlets because of the mucositis but all in all things are headed in the right direction. He has started talking again. Not alot but something is much better then whats been going on for the last 6 days. He is still not eating anything but the doctors decided that in the next couple of days they want to decrease his TPN (IV NITRITION) FROM 24HRS TO 12. SO HOPEFULLY HE WILL START GETTING AN APPETITE. His throat and mouth are looking alot better right now and hopefully it will just keep getting better. His iv line had broke a stitch 2 days ago and today the other one broke so tomorrow we will have the surgeon come up and take a look and decide what needs to be done. Before we go home he will have it taken out and a port (like the one he had when he was home)will need to go in, but they will probably want just to try and restitch this one back in asap because the 2 stitches are all that holds it inside. His fever finally broke after 5 days. I know that our prayers are being heard! I finally took the advice of (just about everyone) and spent the night at the ronald mcdonald house last night. I guess that i needed it because I fell asleep around 6:30 woke up once, fell asleep again and never woke up til 8:30 this morning. I gave platlets yesterday WOW! that was an experience. About 2 hours of laying in the same position not being able to even scratch your nose on your own. If I could have slept it wouldnt have been so bad but about 30 min into it I had to start sqeezing a ball every 10 seconds to keep my blood flowing. Zach wants to say hello to everyone, and wants to know if anyone knows any good jokes to send them his way! He is a one liner hit here. (but his material is getting a little old) HA!HA!
Zach had a volunteer on monday that is an actress! For all of you that are an As The World Turns fan she was the woman that Holden had an affair with about 4 years ago, I didnt get a chance to talk to her very much (alot was going on with Zach while she was here) but she said that she is coming in next Monday and that she wants to come back to see Zach. So I will get the scoop on the name of her character and also whats she is doing now. I think she mentioned that she is in a show on Broadway right now.
Ok gonna go for now......
Tuesday, July 8, 2003 4:02 AM CDT First off I want to say thanks to all of you that have been sending well wishes our way he has
all the cards up on a bulletinboard by his bed, and for those of you that call I cant tell you how good it is to hear a familiar voice, It means so much to see your notes on the web page or to get a card or phone call from home. Not only does it brighten up Zachs day it does wonders for both LLoyd and I as well. Here we are at Day +11! I cant believe that we are there already. Its amazing how so much can happen and days go by then nothing happens and the days go by just as fast. You know the saying time flys when your having fun. Well I am here to tell you it flys when your not too.
Zach is at his hardest time of transplant (so we have been told) his counts have fallen to a level of 0 and have really remained there for the last four days. So much has gone on since the day his counts fell. His hair started to fall out and within 48 hours it was gone. It drove him crazy. Even though he has always had short short hair it still was all over the place when it started falling out! He did not get upset about it, matter of fact he thought it was cool that now he looks like daddy and papa. I cut off what hadnt fallen out by the end of the 2nd day. That was so much better. I wish that we would of shaved it before we went to transplant but I had no idea that such a small head could make so much hair. I saved the first bunch that he pulled out himself. It really botherd me more then him. I thought that I was prepared to see him loosing it but it was rough. Maybe becuase with all that Zach has been through in the last 5 years most of the time he has looked healthy and what i would hear from anybody that saw him would be "my god I cant belive that he is even sick" and they are right.
you would never know because he is such a trooper never letting anything get him down. Even the stays in the hospital, or the things that he has gone through since his last transplant wouldnt knock him down for that long. But nothing could have ever prepared me for this again. Just by loosing his hair it had made it worse because now he had started to look truley sick. I sit and wonder how in the hell did we get thru it the last time!
He has had a fever now since the 3rd of july. Nothing seems to bring it down. We do tylenol, cool baths and cloths, but in the end its his body that decides if its going to come down or not. The fevers may be his bodys way of saying "where are my counts" or there maybe some sort of infection going on. So far nothing has come back to say infection. He is on 2 antibiotics that they havent been able to get to a therapudic level yet so that is very frustrating because if they could it may help his body take care of the fevers. Zach is on a morphine pca pump which means he is getting a continueous dose of it and when he feels more pain he can give himself an extra boost, the pump is made so it will only give him a certain amount over 1hour so if he pushes the botton more then he should it wont give him anything but it does keep tract so the doctors go by that alot to see just how much pain he is in. The pump is really helping him alot. He has had another blood transfusion and 2 more platlet transfusions. He will be getting them more then we expected because of the sores in his mouth and throat are causing him to spit up blood and sometimes its a pretty large amount and actually it doesnt take a whole lot when your body was down to about 0 wbc and 0platlets and its still not making much on its own yet. To look in his mouth is terrible its full of sores but the thought that those sores go all the way down to his belly is unthinkable to me. THE NEXT SENTENCE IS A LITTLE GRAPHIC SO JUST BE READY I AM SORRY IF THIS IS TOO MUCH INFO BUT ITS WHAT HE IS GOING THRU.
We actually got a first hand look to just how much is going on inside there yesterday afternoon. He was sick to his stomach and was throwing up (as usual these days)
blood and mucos then all at once this "gob" of skin came up, it was some of the sores and skin that had actaully peeled off from inside his gi tract and or throat either one we are not sure exactly where but it was terrible and after that he was in alot of pain. as expected. AGAIN I HOPE THAT ALL THAT JUST READ THAT IS OK, For the most part though Zach is doing pretty well. I know by the sounds of it you wonder how can I say that but the doctors and the nurses are still saying that he is going along this road as well as can be expected. And they have seen things go a little better but also a whole lot worse. They have decided to do a test that is usually done about a month after transplant, it will (hopefully) show us if and how well the graft is coming. Now it may me too soon to see because his body may not be making up enough cells to count but if the test comes back inconclusive it is only because like i said its usally done alot later after then this, i am not sure why they want to check right now (i am going to ask them that ? this morning) There is still really no light at the end of this tunnel to give us an idea of how much longer we will be in the hospital. His counts should start coming up and staying up by the end of the week. I am going to donate platlets today. Again for those who decided to read on I hope that it wasnt to upsetting. i am trying to keep everyone as informed as i feel needed and unfortunatly that isnt always going to be easy.
As always thanks for stopping by and God Bless
Thursday, July 3, 2003 9:24 AM CDT we are still here sorry its been so long since i have sent an update. There is some stuff going on now. Zachs counts have fallen to a very low level still not at "0" but they are very low. He is going to get a blood transfusion today and probably he will need platlets by saturday. Lloyd went and donated platlets for him yesterday. It took over 2 hours. For those who dont know how it is done....they draw from one arm it goes thru a seperating process and then right back into the other arm. I have an apointment to give today but I am going to cancel it and give later on next week because they took over 500cc and that should give Zach at least 2 transfusions. He will probably need more then that but i am going to wait because platlets can only be stored for 5 days. He is going to have a blood transfusion today. That will give him some energy because the last couple of days he has been very run down, and his color has been quite pastey. He has developed the mouth sores and the mucositis in his GI tract. So he hasnt been eating to much these days, but he is still eating. The doctors have said even if he only eats 1 cheerio or 1 piece of popcorn or just a bite of anything once a day that is better then nothing at all. He is eating icepops a couple times a day. We love the video that Denise sent us. Everyone was a natural tv star. Zach talks about his scooby-doo often and is sad that she is not with us. He is still in good spirits most of the time and is being very brave with everything that he needs to do, he doesnt like everything but he knows that it is important to his recovery and so he does what needs to get done. Talk to everyone soon.
Sunday, June 29, 2003 7:08 AM CDT Zach got his transplant friday at around 1:30 in the afternoon. They gave him iv benadryl and tylenol so he slept and missed it being pushed in. There was 3 doctors and the nurse in the room (the nurse stayed for 1hr after to monitor his blood pressure, temp & oxygen every 10 min) the transplant itself only took about 15 min. He made it through that and so far so good. Everyone is very happy with the way that Zach is feeling. We have felt very good about it up to this point as well but when the docs and nurses come in and say it too it gives us a little bit of a kick of hope to get us thru that day.
He has really lost his appetite and he has stopped drinking pretty much completely. He will start the TPN today which is an IV nutrition and he will probably stay on it for at least 2-3 weeks, or until he can start eating again.
Now what we do is wait for his counts to come back up which can take 21 days give or take, and pray that he stays fever free. no fever no infection! He hasnt started loosing his hair which suprises me but the nurses say some people hang on to it longer then others.
'till next time...
Friday, June 27, 2003 9:22 AM CDT Hello all'
I havent been on for a couple of days because AOL had a freeze on my acct (someone was sending out alot of junk mail under my screen name) So here we go with the latest..
Lloyd had the harvest yesterday morning he went in at 7:30 and it took about 1.5 hrs to get the marrow and then it was about another 3hrs in the recovery. He is feeling pretty good, quite stiff but he is tough (so he says) ha!ha! Zach is still doing well. He sleeps well at night. He still has all his hair. That will probably change in the next few days. He is ok with that, he knows that his will grow back (not like daddys) The next couple of weeks are going to be very critical. We are now in the full gown gloves and mask. Anything that comes in to him has to be new or washed off. anything that hits the floor we need to alchol off or wash if possible. He also now has a list of foods he can and cant eat until his counts come back up to normal. I told him to try and hang on to his white blanket as much as he can because i dont know how many more washes that that blanket can take. He has had it since he was born, it is his security in every way. He has started getting sick to his stomach, they have a medicine that he can take that helps out but it also has a sedative in it so he makes him pretty sleepy but it does help. Zacks Mimi sent him some homemade bread and whoopie pies. He was very happy to get that package. I called the cafateria the other night and they have never heard of a whoopie pie, and the bread just isnt the same as mimi's.
When i told him that Mimi sent some bread to him he said Hey I didnt even see here come here!!!! Ok I will close for now until I have more news.... I have tried to send a few emails Elizabeth have you changed your address? When i think of the others i will let you know. Take Care
Sunday, June 22, 2003 7:52 AM CDT Hello again,
Yesturday Zach started his 2nd round of chemo. He only gets this one once a day for 4 days. so that means that this chemo will be over on tuesday he will have a day of rest (no chemo) on wednesday, thursday he will have the transplant. Depending on the time that Lloyds marrow is harvested on thursday will set the time of transplant. Once the marrow is harvested it goes to the lab and is T-Cell depleated which means that it needs to be "spun" for 18 hrs straight which also also means that the lab tech that starts the procsess is the one that finishes it! Somebody is going to be working a little overtime !! Right now Lloyd and I still are not needing to gown or mask only because we are the "familiar germs" but that is all going to change as soon as his counts drop. I am thinking the docs will be telling us within the next couple of days that we are going to need to gown up. Right now I am staying in the hospital pretty much 24-7 and Lloyd is here from 9-9 and only goes back to the ronald house to eat and sleep. I know that we are going to need to start doing shifts so we can get some good sleep because the hard times havent even begun yet. Zach is still a ball of energy. He isnt drinking much of anything now but he is still eating. He got a copy of the new Harry Potter book yesturday. The floor had a big Harry Potter party for all the kids to celebrate the book. I think that I am going to start reading it to him tonight. Zachery has been asking about everyone back home. He has a hard time remebmering that we are very far away from home and family just cant come over for a visit like back in EMMC. I read all of the entrys to him from his page and he likes hearing from you all, thank you all again. Oh yes we have moved rooms at the hospital. It is a much nicer room. I have updated the info at the bottom of this page. Bye Bye
Thursday, June 19, 2003 12:52 AM CDT Hello All
Well its another rainy day in NYC. Zach has had a pretty fun day so far. He has had a volunteer come in and play N64
with him and right now he has his teacher with him doing some math work. Later he is going to have some medical play (this is going to help him be more comfortable with the things that he has to do that he really dosnt like doing. The biggest thing is his dressing changes over his new acsess site. Right now it is every other day but the closer we get to transplant (when his counts get closer to 0) they will need to change it every day! He has never ever liked anyone coming at his (boo-boo) There is someother things that the childlife girls will be doing with him to help him get through this, at least 2 times a day they come in and have something else they have come up with to try. They want to make a sticker chart with him so he gets a sticker when he does the daily things like taking his oral meds, his bath time, brushing his teeth, school work, and any other procedures they may come up he will get a sticker every time he finishes them and the end of the week he will get a reward. I hope it helps. Zach is feeling pretty good today there hasnt been any shows of the chemo as of yet but that was what we was told anyways, that he will not start showing physically any signs at least a week into treatment. Hopefully when he does it wont be much and for very long. He has such a great upbeat attitude and I am sure that that is going to help him every step of this journey. Closing for now God Bless
Wednesday, June 18, 2003 11:48 AM CDT well we have been in the hospital since sunday (fathers day) He started his first round of chemo yesterday the 17th. He will be getting it 4 times a day for the next 4 days. This chemo shouldnt make him feel sick to his stomach or too run down, but it will make him loose hair and there is a risk of seziers. There is nothing we can do about the hair loss but he is on an anti-convulsion medication 4x a day. He is still in pretty good spirits most of the time. He gets upset when he wants to go to the play room and is reminded that he has to stay in his room in isolation, but the staff for the child life specialist are doing a great job in bringing the play room to him. We took Zach to the Pokemon Extreme Opening at Rockerfeller Plaza on Saturday and he was interviewed by Entertainment Tonight!so he should be on Friday nites show also we are hoping that the Bangor news will pick it up. We were told that they pitch the video nation wide so hopefully Bangor will grab it. We also took a city tour bus ride after the Pokemon show. The bus was the type you can sit on the top, well about 2 hrs into the 3hr tour it started raining so hard that within 2 min we were all soaked!! but the sun came right back out with in 1/2 hr. The tour was all around downtown NYC. We saw ground zero, it is a very huge hole, it really is a sad site. We are going to go back to it when Zach is out of the hospital and the weather is better. Lloyd saw his first "super star" I cant tell you his name but he is a sports star and he is a twin!!!sorry i will find out who it was and let you all know. (and i always say Lloyd is the one bad with name) Well thats all for now, although I just want to say thank you all so much for your thoughts and prayers, it is so nice to check this web page and see your entries. It helps break up and brighten up our days. Thank you all again.
Friday, June 13, 2003 4:28 PM CDT Today Zach had his 1st doctors apt. We now have a schedual. He will be admitted to the hospital this Sunday and we will use that day and the next getting him settled and prepare him for his first round of chemo (busalfan) to start on tuesday. The child life specialist have met Zach and they are very sweet and i believe they are going to be a huge part of Zachs stay. We are going to make Zach a memory box in the hospital because he has voiced a few times that when he thinks about loosing his hair it makes him sad,and the child life girls have had very good results in making these boxes with the kids so they can put things in them that they are going to miss while going thru transplant. Well I will end now and say so far so good.
Thursday, June 12, 2003 12:21 AM CDT well hello everyone! We finally made it :) The trip was not bad at all we left newport finally at 11:30 tuesday morning and we walked into the Ronald McDonald house at 9:15. We stopped 2 times once for just a rest stop and the other was for dinner around 6pm. Zach was fine the whole trip. His jaw never stopped HA! HA! Things have been kind of put on a stand still for the moment. Lloyd has come down with a bit of a cold and so he has been back and forth to the hospital for blood work and check ups but Zach hasnt as of yet. The docs want to make sure that Lloyd is without any type of "sickness" before they put a new line in zach and admit him to the hospital. because a cold is nothing for Lloyd but it would complicate things for Zach. and also the docs want to make sure it is only a cold.....i am sure it is but better being safe now then sorry down the road. ***what a time for a cold huh**** Right now Lloyd is at the hospital having another check up and Zach is in the play room at the Ronald McDonald House.
Tuesday, June 3, 2003 11:00 AM CDT This page has just been created. Please check back for additional updates.
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