Update

Hello everyone!

Zach is doing well with no infections or complications at this time. He continues with no counts....but we are past the 21st day of a chemo cycle so any day now......He had a great Christmas and all the new toys are wonderful as he has been in isolation now for over 2 weeks. The staff here is wonderful and with family visiting they let us open the glass door between our room and the next room over since there really isn't a lot of kids on the floor right now....so we have doubled are space which is GREAT!! We put his videos games over in that room...so he can have more room to play Wii and they also provided us with a bigger table so we can all eat together when family comes. Uncle Bob, Aunt Karen and cousins Emily and Selena came on Dec 23rd for the afternoon and Uncle Bob and Aunt Yvette came to see us the day after Christmas and we had a great time, as always, seeing everyone.

Zach's hair is starting to grow back and he has his first loose tooth! He is very excited. He is looking forward to going to church and starting sunday school and joining scouts. And he was given some hockey skates with a stick and gear and is excited to learn to skate on Joes Pond.

Thats all for now. Hope everyone had a wonderful Christmas and we wish all a Happy New Year! Thank you for all the prayers and we continue to ask for them for Zachs healing, protection and that no cancer of any kind ever returns

I'll write more soon!
Steph

recent photos

All is well. Zachs counts are zero so now we wait. Enjoy the pictures!

Zach officially completed chemo!!!!

Last night at 10pm was Zachs last dose of chemo. He has completed the 5 intense treatments of chemo that are given for AML. This round has gone very well. The first 3 days of treatment he was feeling really crummy but the next 3 days he was fine. So last night we blew party horns and child life made banners for his room to celebrate the last dose of chemo. Today we are having a celebration with cake and balloons (Zacharys idea) to celebrate. He woke up this morning stating that he thinks his hair is starting to grow back!

S0o......this is where we are now. We have to stay during the "no counts" time period which should start to come up or show signs that it may come up on Dec 24....so anywhere between Dec 29 and Jan 4 is when he should be discharged from the hospital. They have started him on antibiotics to hopefully keep the strep infection from entering his blood stream and he is taking a medication to keep the virus that causes cold sores at bay as well. Everytime his counts drop, he gets cold sores on his lips and we all know that is miserable. So we still continue to pray and ask for prayers for Zachs protection from infections or complications as well as healing from all the effects of chemo. AND most of all.....that the leukemia does not come back.

Aunt Karen from Florida has been here since Wed. She almost didn't make it in as the weather was not so good Wed and they cancelled all fights from PA after hers from coming into Burlington. She brought a wonderful craft, snowmen, made from socks, rice, stuffing fluff and yarn. I will post a picture next time. She has been very helpful in helping Zach take some medicaitons and well as keep me company... we have taken Zach out in the snow a few times and she gave him a piggy back ride when we got outside and realized the snow was too deep for Zach to walk in with his slippers! Zach enjoys having her here and looks forward to the whole family coming back during Chrismtas. Karen and family will be going to Mass. to see her husbands family and will come back up with cousins, Emily and Selena, in tow! He is excitd!!

So thats it for now.....Merry Christmas!!!!

Steph

Treatment 5....the last one!

Zachary was readmitted yesterday for his last and final chemo treatment. Drs tell you that treatment takes 6-8 months to allow for setbacks etc.....Zachary is completing his 5th treatment in the 5 month! Again.....amazing. He makes his own rules. It was hard for him to come back this time as he was so sick last stay. But...he seems to have settled in. He started chemo yesterday at 4pm...an increased dose of one he has been getting all along and he will get this 4 times over 2 days. Then they will have to give him a "shot" in the leg of a chemo agent and its quiet uncomfortable from what I'm told. He will do this cycle of 2 days and a shot again starting next Thursday and then thats it. We will most likely be here through Christmas, but.....we have a tree and all the decorations necessary to transform his room into a winter/Christmas wonderland and we are told that Christmas on the kids floor is like no other...apparently Santa is brought here to visit the kids in a Black Hawk helicopter!!!

Zach is still loving Star Wars, Spongebob, and video games and is now going on about snowboarding. We went to a wonderful store in St Johnsbury, North Kingdom Outfitters, because Zach saw snowboards and skateboards in their display windows. He loves, in his mind, skateboarding and hopes to master it. He again, in his mind, is a wicked good snowboarder and wanted us to buy him a snowboard there at the store. The prices were great there, however, we told Zach that he first has to have a lesson and for that he can rent equipment. He said "I don't need lessons! I can teach myself!"....again, in his mind....one of the wonderful staff members here at the hospital, Stirling, teaches snowboarding and has offered to teach Zach after this last treatment, so we will take her up on it and see how it goes....He continues to add to his Christmas list, which is 19 items long....now we have to work on which one is the one he wants the most.

Josh moved back to Florida this past week. We hope things will work better for him down there....he wants to go and get his EMT certificate and then go from there. Here in Vermont he had to bes sponsered by a firestation or some other place which made it difficult for him. Zach is bummed.

Ashley continues with nursing school and is doing well. She is enjoying her life living with her boyfriend and his family in Florida and is going to Michigan to visit his family this winter.

Next week Jims sister, Aunt Karen, is coming for a visit. We are very excited and we hope it snows for her! The day after she leaves to go back to Florida, my sister/best friend/partner in crime...Sharon...is coming to see us! Zach says that we will be too silly. THEN....my other best friend/family/partner in crime....Kristine is coming to visit Dec 30th-Jan 5th!!!! Zach is concerned about that one.....Aunt Kristine is always getting her hands ready to give him a "spankin". Its a little thing they have been doing since Zach was a baby....he says we will be too silly as well.

During our break we were able to visit with Aunt Doris. We can't thank her enough for the help that she and her daughter Evelyn...have given us in the area of education for Zach. The history of Joes Pond and Injun Joe and the indians has been facinating not only for Zach but for me as well as I don't know all these things about Vermont. The book that they put together is wonderful. Thanks guys! We were also able to visit with Ray and Evelyn a few times at Joes Pond. Thanks for the Thanksgiving rolls Evelyn!! Aunt Louise, who has so graciously given us her home to live in during the winter, sent Zach a beautiful autumn blanket and pillow for Thanksgiving.Thanks Aunt Louise for everything! We were able to meet Aunt Louise and her husand last break...wonderful people. Uncle Bob and Aunt Yvette (Aunt MiMi) came over for a visit as well during our break...which is always enjoyable. Uncle Bob razz's Zach....Zach razz's him back...its a happy little cycle. Zach said he is getting Uncle Bob a 'Barbie" for Christmas. We were able to visit a bit with "Grammie Ann" and Dave Rodgers....Zach is going to help Ann dust off "the cars" in the display cabinet (Nascar collectibles) when he gets back....he told her to wait for him. She keeps him supplied with all thats Tony Stewart! Zach also spied an excellent sliding hill behind their home....so I'm sure he will try it out....but Ann made sure to tell him that he circular sledes are not to be used as you can't steer them.....again...good info for me as I am not savvy in the snow/sledding department. Thanks for the tips Ann!

So...on that note. Zach is so close to being done and we just ask for prayers that he has no complications, minimal side effects and that this strep infection in his blood does not come back. The drs said that they will start the broad spectrum antibiotic when his counts start to go down in hopes that will keep the strep from entering his blood stream this time. He is still not out of the woods until the chemo is done and his counts begin to come up. We really get scared sometimes because although the cancer is not life threatning at this time, the chemo and complications of chemo are and we are soooooo close.......So if everyone could please continue to include him in your prayers .....God has taken such good care of him and I know all the prayers have been heard and are working......Just one more treatment and then we pray for that the leukemia does not return.....God is good.....

Merry Christmas!!!!
Steph and Zach

update

Hello everyone!

Zach was discharged on Monday, 11-24. The wonderful thing about that is that his counts during this round were not expected to be going up for another week or more and on the 24th day, they started the upward trend. God is good!!!

His blood infection was taken care of with the antibiotics and they are going to treat him with IV antibiotics prior to his counts going to zero next round. We are going back to the hospital Monday Dec 1 for blood work and if his counts are high enough, he will admitted for his last round of chemo. If they aren't high enough we come home and check in a few more days. We were extremely lucky to be home for Thanksgiving but I don't think we will be out for Christmas......but it doesn't matter where we are.....as long as we are together and he is ok.....who cares....Life is good. I have become quite good at decorating his room and plan on putting a xmas tree up when we go back. The way I look at it...the more homey and comfy I make it, the better it is for him.

Since coming home he is eating as usual...in fact making up. We have been playing in the snow for 2 days and just having a wonderful time outside and being together. Jim has had since Tuesday off and Josh came home today.

Josh is home for Thanksgiving and then he heads back to Florida as housing was just too expensive for him in the Burlington area. He leaves Dec 1.

I've included some pictures from the past few days of fun!

Thanks for everyones prayers and support. Please know that we appreciate everything everyone has done for Zach and for us and we are so grateful. One day I hope to write everyone individually as I have kept a list of things...but for now I hope that when you read this you know that we are very thankful and appreciate each and every thing.

Happy Thanksgiving to everyone......I know we will have a wonderful day..we have sooooo much to be thankful for!


November 25:

Update

Just a quick note....Zachary has had a tough time and still isn't "back to himself" but he is headed in the right direction. The blood infection is treated, the blood in his urine is gone, his fever is low grade at times and he is still very tired. His appetite has not come back yet and he is still receiving TPN and Lipids (IV nutrition). He has eaten 4 pieces of bread in the past 10 days. So....progress is in the right direction but like the Dr said, not only was this round of chemo the hardest, but the blood infection in itself can knock you down for awhile. So, all the above has just taken a toll on his little body and it will take time to heal. One day at a time as long as its in the right direction

The most exciting thing is.....his counts are officially starting to kick in...little bits but his bone marrow is starting to come to life!!!! This is earlier than anticipated but who the heck cares...thats a great wonderful thing.

Yesterday it snowed like crazy and that made him pop out of bed a few times to go to the window. It was so exciting to see...as you all know....this is why we moved here...cold weather (of course all the other things as well) but there is nothing like watching the snow come down. Zach was so excited.

so....I have to get back to the room. Noni....Jims mom Lorraine, has been here for a few weeks and has been a wonderful help, has to go back to Florida today. She has cooked food for us...so we won't go hungry as its all in the freezer!!!

I'll write more later
Steph

quick note

I justed wanted to tell everyone thanks for the prayers! Zach turned around at about 1130am today, after the infectious disease dr saw him. His fever broke, he actually was awake all afternoon, took a shower, ate 1/2 of chicken noodle soup, played a bit of video games. He was without any fever until around 7pm and then a small one came on, but he is doing soooo much better.

I'll write more later....I think we will get some sleep tonight!

God Bless
Steph

zach update

Today was a little better at times and the same at others. He woke up without a fever and we were so excited, then by 10am, he was running another high fever that tylenol did not touch. Then, at the 2pm mark, he was again very high with his fever and an hour later, he was a normal temp. He actually was awake for about 2 hours today, managed to walk to the bathroom and back, but that was it and it wiped him out.

So...the cultures came back strep A again, which is what he had last round but this time, the strep A just was more full blown in his blood stream. The infectious disease dr states it will take longer to get rid of and that he has been on the right antibiotic from the get go. So, that dr was not worried or alarmed that Zach was still feeling awful and very febrile 48 hours into this and stated that Zach was just very sick. I was beginning to think, as well as the oncology dr, that he may have something else going on as well.....with no immune system things go wrong quickly.
But....at this time.....they are attributing all his symptoms to the strep A.

So...hopefully tomorrow Zach will be doing even better for longer periods of time and maybe want to eat something. One step at a time though.

Thank you for the prayers......you know Zach could have been in the pediatic icu with this, but....he is not and he is slowly improving. God is watching over Him....what else can you say. Please continue to pray for his healing and that all the other threats to him during this time are kept in check.

Thanks and I'll write more tomorrow.

Steph

Prayers please

Zachary has an infection in his bloodstream again, this time more serious. Its been narrowed down to in the strep family but have to wait 48 hours until the culture is complete to know which strep it is and what antibiotic it is sensitive to. He has been on 2 very big gun antibiotics for 24 hours now, but his fevers have not started to trend down. The drs like to see a change in the right direction the 24 hour mark, but he has not. They added another antibiotic tonight so I hope that is the ticket and by tomorrow he will be showing an improvement. By tomorrow night we hope to know exactly what strep it is as well. He as done nothing but sleep since yesterday afternoon when this all started.

So...I'm asking for specific prayers for him.

Thanks for all the continued support and prayers and thank you in advance for adding Zach to your prayers tonight

Steph

Round 4 complete!

Today was the final dose of chemo for round 4. It was 7 days. Zach went through it wonderfully with only a few episodes of the pukies. He did have a decrease in appetite, but it came back today when he ate the whole package of roast beef lunchmeat.....7oz total. He had the last dose of the experimental chemo this afternoon without incident. They have to premedicate with benedryl and tylenol so he took at 4 hour nap and yes....we will be up all night.

After speaking to Zachs Dr, it has been said that his prognosis is excellent. The Dr stated he would be surprised if he relapsed within the 5 year period following chemo...but as we all know....there are no guarantees. But....I have to say.....God has been with Zach the whole way and I'm sure he will continue to do so. Dr's continue to say that Zach has done incrediably well given the intensity of the chemo and stated that it's "curious" how his rash disappeared after 2 days of the high dose chemo when it should have worsened with each dose until he was done. All I can say is that "With God, all things are possible."

So....now we wait. His counts will be down for the longest time....could be up to 30 days...So prayers that God protect him from all infections while his counts are down for that long of a time would be much appreciated, as always.

Halloween was fun for Zach given the circumstance. We trick or treated with the child life specialists throughout the hospital and we had our own little party with a few games, music and pizza with his nurse's, Josh and Father Tim.



Thats all for now, will post more soon

Happy Fall
Steph and Zach

Round 4

Hello everyone!

We had our time off and are now back at the hospital since Monday, Oct 27, for round 4.
Zach is doing very well. He came throught the blood infection fine, we finished his antibiotics while at home.
As I said, Zach restarted chemo Monday, continuing the high dose of one and the addition of the new chemo, which he had last night. The last day he also gets his second dose of the experimental chemo. He ran a fever the first day and felt generally awful but it passed and he is now doing well. He started to get a rash as expected, but it also started to go away. The new chemo is blue...smurf blue and it turns his urine green...he thinks its cool.

We will be here longer than we have been this round as this round causes his counts to be lower longer..so we won't be out for Thanksgiving but there are two things: as dr homans said, Zach is Zach...he hasn't done anything as we expected.....and the other thing is we have so much to be thankful for, what better place to celebrate than at the place where he has been getting better.

Halloween is tomorrow and Zach is excited. We have games planned as well as child life planning a fun filled day.

Zach had a great time off. We had some snow, played in fall leaves and carved pumpkins.



Thats it for now. Thanks to all for the prayers!

more later....

Happy Fall
Steph and Zach

Update

Things were going well until Friday night, then we hit a little bump in the road. Zach started with a fever which got higher even with Tylenol and then had a reaction to one of the antiviral iv medications that they started. Protocol for kids with AML is to keep them throught the immunosupressed time as they stay longer in that period then with other cancers and that opens the door to more risks of infections. Friday night was an example. The blood cultures have shown an infection that was just starting, a strep infection which was in his blood. The final has not come back yet, but the dr feels that its probably and alpha strep (I'm not sure what that is") but that is what they watch for and what most AML kids are prone to after receiving the high dose chemo that he had last round. So, they started him within minutes on Vancomycin and Ceftazadine, both broad spectrum antibiotics that cover both gram negative and positive bacteria. So....he has progressivley gotten better and has remained fever free since Sunday. His appetite is back and so is his energy. I'm just glad that we were here because time is so important when an infection starts to invade your blood stream when you have no immune system.

He is getting better and it won't prolong his stay if his counts come up, fever is gone and he is having no issues. He can continue his antibiotics at home. It will be the last time we get to go home before the snow starts!!!

Uncle Bob and Aunt Yvette came up last Friday and visited. Zachs favorite new trick to play on staff is now the chopped off finger gadget that they brought for Zach. Its great....makes staff look twice. Zach had mercy on Uncle Bob and didn't attack him with the silly string we have, but he did drench him with his new squirt gun his new friend Sean got him!!!! Uncle Bob is a good sport and Aunt Yvette is too....they bring goodies when they come!! Thanks again for the goodies!!!!!




The tree's are beautiful here and in Burlington, they are peaking. In St Johnsbury its past peak. Its suppose to be getting colder now and I'm looking forward to it.
Tomorrow is suppose to be 74 and I think that is too warm for this time of year. I want cold!

Tomorrow some of the nurses and I are going to the new Target that just opned in Plattsburg New York which is a ferry ride across Lake Champlain. I'm so excited!!

Josh has an interview at the Williston fire department of Thursday at 5:30. This is for a paid on call position but it would open the door for him to get his EMT and then work in the emergency room and run fire/EMT calls for the fire station. Things are looking up for him.

So, this week his counts should come up and maybe we could get a break before round 4 starts.

Thanks to everyone for the continued support and prayers for Zach. WE can see God working everyday.

Happy Fall!
Steph and Zach

Update

hello everyone!

Zach is doing wonderfully! Thank you God!!!!! We are in the immunosuppressed period at this time, day 15 of the 28 day chemo cycle. His counts should start to recover around day 21. We got to go home last time on day 25 so......we will see.

Zach handled the chemo well and have had no unexpected complications or situations. He has had to receive 1 unit of blood and 1 unit of platelets which is par for the course.





We have plenty of fun while we are here. We have scared Penny (social worker) with various snake pranks, scared Dr Homanz and staff with our sound activated drop down spider, attacked staff with silly string, made cupcakes with child life, played video games with Father Tim and others and of course we try to keep up on school.

Josh comes daily to hang out with us. Yesterday we played cards and had popcorn and soda (Zach thought it was great!) and colored Halloween pictures to decorate the room. Of course, we watched Its the Great Pumpkin Charlie Brown.

Josh is going to stay here in Vermont as some doors have opened for him. He wants a job as a firefighter as he just graduated from the fire academy...however....he has to volunteer for a while first. So.....he met up with a firefighter who said to gave him some helpful hints. Josh then read in the paper that the Williston fire department is still recruiting volunteers, so he called the fire chief who wants Josh to attend a meeting this Tuesday evening. If he secures a volunteer position he then can get his EMT and get a job in the ER at the hospital. So....things are looking promising for him and for my own selfishness, I'm glad he is staying because Zach enjoys him being around soooo much. He loves hangin' with his big brother.

Ok...thats it for today! Zach is looking forward to getting out and enjoying the colder weather. So am I!

Thanks again for all the prayers!!

Happy Fall
Steph and Zach

Silly String Fight

Uncle Bob, Aunt Yvette and cousin Riley came to visit today!!!!

Day 5 of chemo

Zach was readmitted on Monday to start his 3rd round of chemo. His bone marrow and his spinal fluid remain clear of leukemia and his cat scan of his lungs is perfectly clear. This round of chemo is called intensification as one of his chemos goes from 92mg every 12 hours to 950mg every 12 hours. I was nervous as I was told all the side effects which are normal to happen and also not knowing how Zach was going respond. He was effected the first couple of days with fatigue, no appetite, some nausea, and fever, but by the 3rd day, his body adjusted and he is back to normal.....he is eating, drinking, not tired and no fever.....and again the dr's are stunned. He does have a rash which is expected and his head looks like he has a sunburn. It itches a lot but the new cream helps. So...tomorrow morning is his last does for this round, then we wait 2 weeks for the "no immune system" time. Prayers that he won't get an infection during that time please. All the prayers are helping!!!!

He made a friend today. There is a boy here who has cancer and is receiving chemo and is 6 also. They are both finishing up chemo and waiting for the no immune system period. SO...they are both still ok to go out from their rooms and play. They sat in the play room and played Star Wars on playstation. Zach also set him up with some silly string to shoot at the drs and staff. Zach is showing him the ropes.

Zach got a clone trooper costume for Halloween and he proudly struts around the unit showing it off. Of course, everyone is so wonderful here they just "ooh and aah" over it and make him feel real cool.

He also had visit from the F16 pilots and received a real flight suit that a woman took from a pilot and modified it to Zach's size. I'll post a picture of that later now that I got my camera.

The slide show pictures are pictures of waxing leaves with Noni on his time off as well as some of the beautiful leaves starting to show up here.

That's it for now. More later.

Love
Mom and Zach

Photos

We remain free until Monday!!!!

Well......as I said.....it would be nice to just get the show on the road and get the 3rd round of chemo started.....its also nice to be out of the hospital for a few extra days. Zach had his blood drawn today and his counts are still not high enough to be readmitted, so we get to be off until Monday!!! The dr's reassure me that this is very normal and expected for his counts to be slow coming up, so its just part of the program.

So....today we went to Lake Willoughby for a picnic and played some football. It was a nice family day with mom, dad, brother Josh. The weather is beautiful. It was 39 this morning but warmed up to a nice 68. We then decided to go to Crow Hill Rd to do some apple picking but as soon as we found it, the sign said "No apples". Oh well.

Thats it for now. Zach is doing very well and tomorrow is another family day with all at home (Dad, Josh, Mom and Zach).

Home for 4 days

Hello everyone!

I'm sorry I didn't post this sooner, but Zach was discharged Friday from the hospital! His complete immunity count was still very low, but the dr said since he never ran a fever and wasn't actively sick, there was no reason for him to stay as we could do the same thing at home.

So Friday was a blur. I had to call Jim at work and he left and of course a million trips to the car with all the "stuff" I take with us.

We have to go back for blood work on Monday and Wed for bone marrow aspiration and cat scan of his chest. Then, if his "counts" are up where the drs can restart chemo, he will stay Wed after the bone marrow and ct of his chest and start chemo Wed. So only 4 days off with 1 trip up on Monday. This type of schedule is more of the norm than getting 10 days off. He has done so well...no fever which is very uncommon. Wed will start with the lumbar puncture and chemo injected in his spine which is what they do at the beginning of every round. They then increase one of the chemo's 10 fold . The dr's were very sure to tell me that "universally"kids will react to the increase with high fevers, body aches and flu like symptoms......so lets pray that Zach handles this as he has done all the others.....out of the box!

So, round 3 of 5 starts Wed if his counts are high enough. We are enjoying our time at home, but its way too short.

The weather here in Vermont is starting to change but has been warm this weekend. Everyone who knows me well knows I didn't move here for the heat.....bring on the crisp fall weather and then the winter. Of course, we have no clothes for this type of weather...oh darn, i will have to shop! The squirrel I names "Bernie" that Zach and I watched all weekend was busy collecting some kind of nut or seed from a tree and burying them in random places in the grass and flower beds.....he must be exhausted tonight as he was a busy squirrel today!

Ok...thats it for now! I will post more on Tuesday when I know what the plan of action is going to be.

Zach has told me to say this " Don' t worry Mrs Mancini, I'm going to send you leaves and some to Sawyer too! My noni says we are going to collect them and wax them and send them in the mail"

Again as always, to everyone who has added Zach to their prayers, to prayer lists at churches, have sent things to Zach (cards. letters, gifts) and to those who have had fund raisers/benefits for Zach.....Thank you for taking the time to do what you do. I haven't sent out individual notes as there are so many, so I hope everyone understands and accepts our gratitude via this blog. Just know that what you all are doing is working, is appreciated and makes us realize how much good there still is in todays world.....Zach is such a lucky little boy in so many ways!

Hope everyone has a good week!
God Bless
Steph, Jim and Zach

Day 21

Hello everyone,

Today is day 21 on the 28 day chemo cycle. He only received 8 days of chemo but the cycle from chemo being given until the effects are seen and then start to resolve is a total of 28 days.
Zachs counts were down a week ago Sunday and they should start to rise now. He has done wonderful!!! Thanks to all the prayers that are being said for him......God has blessed Zach once again with no side effects (other than hair loss) from the chemo, no fevers, no infections thus far,no lack of appetite, and no lack of energy! Again the dr's just scratch there head and smile. God is good!!! I know its not hard to figure out why Zach is doing so well.......I'm so grateful!

If Zach's counts trend upwards this week and he remains in good health, we hope to get our "break" next week...the 28th day is Monday.

Home schooling is going well, however, I'm having to skip through stuff to get where he isn't going to be bored. I'm also having to figure out how to keep him from taking advantage of the fact that "mom" is the teacher. Things to work out.

Zach had a 2 visits from his cousin Jack. He was so excited and kept asking for days after if he was coming again. Jack is 1 year older than Zach and both like to play video games and be silly.

Zachary is very excited about the change in seasons that will be coming soon.....especially the snow. We started a graph which we track the weather on a daily basis with temperature and if its sunny, cloudy etc.......if it is 2 degree's cooler than the day before, he thinks winter is coming....I have to explain that 72 degrees is far from winter here!

Thanks for all the cards and letters that everyone has been sending. Zachary enjoys getting them!

Thats it for now.....time to try and get Zach to do some school......."try" being the word of the day!

Thanks, as always, for all the support and prayers.......we appreciate them very much and we can see them working every day!

Steph

Update

Hello everyone!

Well, the school year has started up here in Vermont and Zach started right along with them! He thought he didn't have to do school, even though I kept telling him he was. Boy, wasn't he surprised when the books showed up! He actually is very excited about it, especially the science. So, we will see how home schooling goes.

Grandma, my mom, left back to California on Wednesday. It was really nice to have her here.....there's nothing like having your mom with you. We took Zach out every day to play outside, which included basketball, break the twigs with the ball, chase the ball and 3 square. Her birthday was Tuesday, so we met outside and Zach presented her with various treasures from the hospital gift shop: Halloween earrings, truffles, a Webkinz, eyeglass holders and a piece of cherry pie. We then played basketball. Unfortunately, she came down with a cold the last few days that she was here.....seems like thats what happens when you fly in airplanes.



Zachary had a surprise visit from the University of Vermont hockey team on Tuesday!! One of the guys gave him his stick, signed by the players, and he received a framed team photo and a signed hat. After the visit, the coach emailed the social worked, Penny, who arranged this meeting, and told her he enjoyed the visit with Zach so much that he wants her to keep in touch with him about Zach and he wants to give him tickets to a game and wants him to come to a practice with the guys, come on the ice, see the locker room etc.....Zach just about fainted!! That visit just made his day!! So, then the next night, he most favorite night nurse in the whole world, Gradin (male), gave him a signed John LeClair hockey puck, one that he had in a box of things he had collected......Zach knows who he is and although he doesn't understand how special it is....he knows its special because a hockey player signed it, he played for the Flyers and Gradin gave it to him.

Lets see.....what else. Zach is on day 10 of the chemo treatment plan. His 8 days of chemo ended yesterday morning and now we are waiting for his counts to drop (the blood, immune system and platelets.) Unfortunately , the only way to get rid of and keep away the leukemia is to wipe out his bone marrow and then let it regenerate. So, once his counts go down, then we wait, stay in isolation and pray that he does not get any infections or have any complications. Like the dr said, the leukemia isn't a problem anymore, its the threat of infections or complications that the chemo brings on.....as necessary as it is. So.....keep the prayers coming that God protect him while he has no immune system.

Again, thank you to everyone!! All the support you show Zach and us is just wonderful and so appreciated. Thanks also for all the prayers!

More again later

Zach and mom

Day 4 of chemo

Hello everyone!

Zach is doing well so far. His counts will start to drop by Sunday and then 2 weeks of no immunity. He has had no side effects this far.....playing, eating and being just as silly as usual.

The social worker, Penny, has set Zach up with a remote control "fart" machine and don't you think that is a hit!! His big brother, Josh, thought it was fabulous as well. Zach walked the hall this afternoon trying to trick everyone. Most people didn't know what to think at first, especially the dr's and residents walking the hall. Zachs continuous belly laugh gave it away though.

So...for now.....we are just making the best of being here.

More later

new pictures

update

Hello everyone!

Zach is doing very well. His pneumonia is clearing up nicely. Nothing grew out in any of the tests/cultures and so they say it was aspiration of stomach, (when he coughed so hard he vomited and than inhaled) and/or partially treated pneumonia (being treated before we left and not quite healed all the way). Either way, its not a huge bacterial or fungal pneumonia, thank God, but one that is easily treated. He is doing well as I said, lungs are just about to normal and the plan is to start chemo on Tuesday.

My mom is here from California. She came in on 8/13 and will be here until 8/27. Its wonderful to have her here.....theres nothing like having your mom by your side. Thanks Mom!!!

Zach is beginning to the expected outbursts and anger issues. He talks in 3rd person alot which the psychologist explained is a way that he disassociates himself from the situation...again normal. He is not happy at all if I pay attention to anyone else......he has a lot of frustration and anger which gets focused on me.....which is normal. Like I said, its expected. The poor thing has had his whole life turned upside down since March really....with selling the only home he knew and moving into our trailer to leaving his best friend then to coming here and within a week being diagnosed. So, he has a lot of feeling and he doesn't understand how to express them. He said to me last night "What made me mean?" We talked and let him know its ok.
Of course, regardless, we have boundaries......name calling, hitting, and being disrespectful is not ok.......We have a wonderful support system here at the hospital and he loves Aaron, the psychologist.

We go outside for an hour or two everyday and play basketball at the UVM campus, which is right outside the lobby doors basically. He loves to run around and we love that he burns of energy!!.....it will be soon enough that we are isolated to the room for 2 weeks....so we go out and try to soak up the fresh air and sun now.

Thank you for all the continued support and prayers. Please know we appreciate everything everyone is doing.

More later
Steph

Back at the hospital

We had a wonderful 10 days off with no complications other than his cough, but now its time to get back to business at the hospital. Zach had his bronchoscopy today and was sooooo brave. He didn't fight, argue or cry when we went into the treatment room. Last time we had to hold him down to give him his sleepy medicine as he would not give his "tubey" lines up willingly (his central line ports). I just held him and he watched the movie and they gave him the sleepy medicine and that was it. We got pictures of his lungs, which Zach thought was cool. The lung dr said both lungs were full of secretions, but there was no inflammation or irritation, just secretions. He was surprised that Zach was doing as well has he is with the amount he had. He said he didn't feel it was fungal, but its definitely pneumonia, just not sure what kind. So they are testing the secretions for everything. Zach is still doing fabulous. Breathing fine, no fever.....just doing great! His throat is sore and Zach says "I hate that stupid lung Dr!!!! He made my throat sore." He is entitled to vent his feelings. Today, in his view, stinks as we had to come back to the hospital. He is right, but it is the best thing and I tried to tell him all the positives.

Favorite Bible Stories. We have read several about God healing people and children and performing miracles. Last night while we were having snacks, Zach says " I don't want to go back to the stupid hospital. God can heal me and when the As we go through this, we talk a lot about God and I have started reading him Children'sdr's come to bother me I'm going to say....Nope, You can't touch me, sorry, I'm healed now. God healed me." I told him God had healed him and is caring for him and that God also gave knowledge to those dr's and nurses to continue to heal him and make sure the leukemia stays away.

So, we are back. Room 588. Its not as big but is nice. Zach said there was a problem with the room, and pointed to the window.....sure enough there were Cinderella window stickers on the window. So thanks to Aunt Yvette, we took Spongebob window stickers and put Spongebob over one Cinderella's head and Patrick on the the other Cinderella head! Everything looks perfect now!!!

Thank you for the continued prayer and support. We all appreciate it very much

Love
Zach and mom

CT results

Well, the results are that he has "stuff", infiltrates (small) in both lungs, not just the left upper lobe like 2 weeks ago. So, he isn't running a fever, he is playing, eating and acting wonderfully, but, the Dr called and said that after reviewing this with the lung doctor, it has been decided that he won't start chemo on Monday but with have a bronchoscopy so they can find out what exactly this "stuff" is in his lungs and treat it. So, they have to deal with that first and then he can start the 2nd round of chemo. We still go Monday to be admitted and will actually end up staying longer because of the lung thing. So, 5-6 weeks probably this round as long as nothing else occurs.

So, prayer requests for Monday, that the bronchoscopy is uneventful and what they find is nothing serious and can be easily treated so we can go on with the chemo.

His labs from yesterday were awesome! His ANC is over 1500 (his immune system). When we left last Friday it was 740. The Dr states his ANC is above average and that's great. All the other labs were great. His hemoglobin and platelets are normal. So, his bone marrow came back beautifully!

Ok...have to go. Hope you enjoyed the baseball pictures of slugger Zach!

Time for bed

Take Care
Steph

Thursdays checkup

We headed back up to Fletcher Allen today for the scheduled checkup and lab work. Everything is great but they want to do another Cat Scan of his chest as he is has a productive cough and his right lower lobe sounds like its got some sounds in it. They want to compare it to the one they did about 2 1/2 weeks ago and of course, see what is really going on before he starts chemo again on Monday. They feel its a resolving thing as he is productively coughing, he isn't running a temp and he acts fine. So I pray that after today's soccer match with dad, brother and mom, he will have done enough running around to expand his lungs all the way to his toes and get whatever else was in there out!!

Zach is enjoying having his big brother Josh here. Josh is really good about spending time with him. They play video games, watch tv together and play outside together (we all play baseball, soccer, basketball.....)

Again, the house that Aunt Louise Tipton has allowed us to stay in while going through this has been a huge blessing. The house is wonderful and has given us a feeling of peace and normalcy. Its a wonderful retreat.

We have continued to receive so many wonderful words of support and encouragement, via cards, letters and gifts (for Zach) and comments on the blog. Words can never express how appreciative and touched we are. Please know that every card, letter and blog is read to Zach and means so much.

Doris Demick continue to lead the way in Zachs education. She has been so helpful in gathering information on home schooling and putting so much time into researching and developing plans for Zachary's education. Zachary stated today "I don't have to go to school this year because I have to be in the hospital" to which I replied..."Oh yes you do....Aunt Doris and mommy have seen to that and you will attend 1st grade in a different way...but you are having school!". We have decided to buy a home school curriculim through Calvert.....it comes with everything you need to teach for the school year (books, tests, quizes, cd's etc...) Doris states she will be my mentor and I'll be the teacher.....I think she should be the principle!!!!

Ok...time to get us to bed. We have to be up early tomorrow to be to the hospital for the CT by 7:30 am.

God Bless
Zach and Mom

Zach the slugger

Our time off has been wonderful so far. Zach is doing very well. He is feeling great with the exception of a cough which he has had for the past few weeks, but the dr said that now that his immune system has kicked back in, his congestion and cough will get worse before it gets better. He is playing outside a lot, eating great, sleeping well and even taking his medicine without problem!!!!

Zachs favorite thing to do is go outside and play baseball. We have gone to Danville School twice just to use their baseball diamond. He has got quiet good at hitting. The more he runs around to all the bases and then starts coughing, which is good as he is getting all the yuck out of his chest. The weather has been great, regardless of what other people may say. We are just happy to go outside!!

He is enjoying is puppies....snuggles them whenever he can. He is excited that his older brother, Josh, and his dog is arriving tonight. Josh is moving up here to Vermont and is looking for a job at fire stations in the Burlington area. He just graduated from the fire academy in Florida.

So.....thats it for now....time to get slugger to bed.

Thanks for all the prayers and support.

Zach and mom

Bone Marrow Results

Zach s officially in remission after the first round of chemo.....which is where he needed to be. Dr Schuller said there were "no" leukemia cells, only tons of healthy cells. His ANC (total of all immune cells) went from 250 to 740 on the day of discharge. They said he is doing incredibly well. We have 10 days off now. The new house is absolutely wonderful!!! We are so grateful!!!!

We still have months of chemo, with up to 30 days in the hospital each time, and that is to keep the leukemia cells away.

God is good......miracles are everywhere. I have seen Him work......He is amazing.'

Zach says he is so happy to be home. He is doing very well. He loves the stairs. He is reunited with his dogs....they were so happy to see him!!!!

More later.........Thank you to everyone who prays for Zach and sends him so much support! You are all awesome!

Praise God!!
Stephanie

Bit of good news

The dr said that after Zachs bone marrow tomorrow we get to go home for 10 days!!!!!!!

Prayers for Friday

Hello!

Zach's "soldiers", as he calls them, are coming back. So.....now its time to recheck his bone marrow to make sure the first blast of chemo got rid of the leukemia. Tomorrow is the day they will recheck his marrow.......if there are 15% or less blasts (leukemia cells) he continues with chemotherapy for the next 6 months. If there are more than 15%, he goes for bone marrow transplant. So tomorrow is the big day that determines the course. Dr's feel that he will have less than 15% based on many things including the chromosome type the leukemia cells are and that the blasts in his blood cleared so quickly once chemo started. I feel very confident that he will meet the criteria to continue chemo.

We also found out that we "may" get to leave the hospital for 1-2 days next week before starting the next 8 day cycle of chemotherapy followed by another 2-3 weeks in the hospital. Zachs response was "yeeessss". He never complains.

Gotta go for now....the boss is wanting to get busy with playing for the day.

His rash is just about gone and he has been fever free for 3 days. Thank you God!!

Zachs says "If anyone wants a haircut, I'll give them the bald one!"

more later

Zach and steph

Dads turn!!!

Day 5 of rash....its resolving

Well, Zachary's rash has started to decrease and he has gone all day without a fever!!!! Its right on schedule with what the dr had said. The medication peaks on day 4-5 after taking it, so today is day 5. Thank the Lord. His counts are coming up. He actually has white blood cells and some other important cells that fight infections. His platlets should be next to come up and then his blood level. He has had 6 units of blood and at least 6 of platlets since this all began, but that is par for the course.

So....the next big hurdle with come at the end of this week or beginning of next week, which is another bone marrow. The "blast" cells have to be less than 15% to continue with chemo. The all the other tests they have done, including looking at the chromosomes of the leukemia cells themselves, there should be no problem with obtaining that number. But, none the less, we ask for prayers prayers prayers. This past 2 weeks with Zach not having any immunity has been very stressful. He has flown through wondefully and I'm thankful the only complication was a drug reaction. We still have many months left, but God is with him.

His Krabby Patty Restaraunt has been closed due to rash the past few days, but he informed me with have to get back to work!!

To everyone who sends him cards, pictures and gifts, thank you. He loves seeing pictures of the kids who he will know at Danville school. He also has received many cards and pictures from VA from Sharons church, which included pictures of the kids as well. He loves it!!

Zach decided last night he was tired of his hair ending up in his mouth, eyes and all over his bed...now that he is losing it. I had clippers from home here, so he sat in the chair and shaved his head himself!! i told him he looks like a marine or army man. He says he loves it and when dad gets here tonight, he is going to shave his head too! (Jim is not aware of this, but would have no trouble going along with it)

More later
God is in control
Steph

double click and it will open bigger

update on Zachs drug reaction

Drs now feel Zachs rash all over his body and his fever are all drug reaction related. It will take until Sunday-Monday for the drug to work its way out of his system. He is still running a fever and the rash hasn't spread more, but now that we know he isn't running a fever from infection, we are ok. We will just treat the itching and the fever. I" m glad it isn't something serious, like an infection, because that is a real concern when he has no immune system. He still is coughing, lungs are clear, so must be postnasal drip. He is taking his first shower today. I've been washing him down these past 3 weeks as he was scared of the aqua barrier they apply to keep his central line covered because it had "tape". He associates anything with tape to hurting as his central line dressing changes hurt when the tape comes off. But he woke up today with a desire to shower...he has been in there for 20 minutes so far.

The dr states that his counts look like they are trying to rev up and once they continue an upward trend for 2-3 days, they will deem him with improving counts for real. Then.....once his counts are up enough, he will again have an immunity and we may be able to leave for a week before the next round of chemo. Please keep your fingers crossed.

Ok..thats it for now, Zach is calling to get out of the shower!!

Love
Steph

I'm a fry cook!

HI to everyone::

Well, I have been dreaming of becoming a fry cook at the Krusty Krab in Bikini Bottom. Its all I could think about the last few days. So, my dad got me all the fixins to set up my own Crabby Patty restaurant right in my room. I even have a line to attach all my orders too. The nurse printed out my own menu which features seaweed salad and peanut butter and jellyfish sandwiches. I have a fry pan and a spatula too.

I had my first cat scan yesterday. I was pretty afraid. I have been coughing and they wanted to see what was going on in my lungs. (They found some patchy spots which could represent fungal stuff or resolving pneumonia). They started me on an anti fungal, which is extremely normal for people like me. I get it in my IV. I had to go for another cat scan to look for stuff in my abdomen and in my sinuses but they didn't find in fungal infection or anything weird. Before the cat scan today,I had to drink some "sour lemonade stuff", which was contrast for the cat scan but then I started having a rash . So I stopped drinking it. Then this afternoon, I ran a small fever when I was getting blood, but they usually give me tylenol and they didn't. Come to find out, the new IV antifungal medicine has side effects of rash and fever. So maybe it wasn't the contrast. THEN.....my tubey (my central line in my chest) stopped working and they can't flush it or draw blood. I couldn't finish getting my blood and I'm waiting for the IV nurse to come and put special stuff in it to dissolve the clot thats blocking it ( again......not uncommon.)

Mom says its been quite a day.

My Dad is here for tonight and Thursday night. I'm having fun playing Wii and my new Tony Hawk video game. My noni was here for the past few days.

So, thats about it. I still can't go out of my room, but my mom keeps me very busy.

Thanks for all the notes on my blog. I love for my mom to read them to me.......She is a cry baby!

Zach

(From Mom: Thanks for all the prayers and keep them coming.....the past 24 hours has been one glitch or another. Hopefully his central line starts working again, no fevers and no rash. Any little thing makes me panic it seems. I will post some picks tomorrow. Thanks for all the notes...he loves them!!)

Hello everyone:

We have seen God's hands working in our lives over the past year, very obvious looking back now. We thought we were moving here for "our plans", but God got us here for Zach and His plans and He is continuing to handle this situation with Zach every day. We have been lead to some awesome drs, to a research hospital which networks with Boston Childrens hospital and dana farber cancer hosp in boston and other facilities throughout the united states, collectively called COG- childrens oncology group. (http://www.curesearch.org/)

As devastating as it was at first to hear the news, we are very blessed and thankful that he has leukemia because there are so many other things, worse things, that he could have....without cures. I'm not sure where this journey is leading us, but Jim and I both feel that good will come out of this experience. Our hope is that Zach will do something new and different which will facilitate further research and help other kids. He was caught very early and he was perfectly healthy all his life .

Zach is doing incredibly well. The dr's just shake their heads. Dr Homenz stated yesterday "I've never seen such a health neutropenic kid in my career". He eats, drinks, plays and acts as normal even though he just completed a 10 day course of intense chemotherapy. We pray several times daily that the side effects are minimal, that he is protected from any infection, and that his blood counts recover quicker and better than they expect. He has had no side effects except 2 episodes of dry heaves which last all of 5 secs each and maybe a little more tired than usual (on a few occassions). Otherwise, he acts just like Zach. He has gained weight, eating well, drinking well. He loves to play Wii, which is provided by Child Life services here at the hospital. At his time he isn't allowed to leave his room, so they bring things (bleached and cleaned) right into his room. They expected for him to have sores in his mouth, but he has not. We had one night when he started to spike a fever, which is bad, but they started him on antibiotics immediatley and he hasn't had a fever since. He has psychologically adjusted amazingly well. He is just now starting to lose his hair, but that is expected and he is ok with it. We told him we could use a biker skull cap, knit caps or regular hats if he wants; he says "no, thats ok". We have decorated his room like we would at home. everyone here is wonderful.


We continue to ask for prayers. Zach has 2 further criteria to meet before he continues with chemo vs transplant. We need prayers that his blood counts (which are all manufactured in his bone marrow) come back within or before the time frame they expect and prayers that on the 29th day, when they redraw his bone marrow, the leukemia cells (or blasts) are 15% or less. If those criteria is met, he will continue with chemo. If they are not met, he will have to go for transplant (now that we found out his sister is a match). I'm hoping for the chemo route. And always, prayers that he does not have an infection during this time when he has no immunity. We are waiting for his blood counts to come up and this is the most dangerous time for him as his own bacteria can cause him to become sick. again: we are isolated to his room for now, we can't even go outside with a mask on, but he is amazing. We keep busy and he understands. For a 6 year old, having your whole world changed in a blink of an eye, he is fabulous.

We did find out last week that if needed, Ashley is a match for Zach. They don't feel that we are headed that way. They tested the chromosomes of the leukemia and they know exactly what they are dealing with and it most favorable to continue chemo, as long as the above criteria is met.


JIm comes up when he has time off. He started at home depot 92 miles from here and they haven't worked with him yet on his schedule. He just worked 7 days straight with 2 days off. he wanted work 4 days, 2 off etcc.....to maximize his time here. We hope the scheduler gets it together.

I stay with zach 24/7 , watch everything like a hawk. I have left a few times for an hour, like yesterday (jim was here), to get groceries, but I feel like I have panic attacks when I'm not here. Lorraine has been coming and keeping me company when Jims not here, which I really appreciate. We have had lots of family here in the initial 2 weeks as Josh, Tina and Ashley were here, Aunt Yvette and Uncle Bob came up with Phil and Lorraine and Karen, Bob and girls were here for a week and popped in often. All this is great and keeps things "as normal" as possible. We also are very thankful for all the support from friends and family who are not here but support us by phone calls, prayer and cards/gifts. Sharon, my sister, thanks for the zeal and zest you give when you are on a mission. Evelyn Richer's mom already knew about Zach before Evelyn told her of us as she had seen Sharons name on the church prayer list( Sharon had called the church's in our area here in vermont to make them aware of Zachary and have him added to all the prayer lists). Thanks for all the prayers.....keep them coming!!

They have been wonderful with providing us with a refridgerator in our room. There is also a Ronald McDonald Family Room on this floor where I can do laundry and cook food. There is a Ronald McDonald House 1mile from here and thats were josh and tina stay. We have a room for whenever family or friends come. I make all of Zachs food. I don't know who touches it in the hosp kitchen or if the plates/utensils are clean. So we are self sufficient with food, plates and utensils

Ray and Evelyn Richer have been a blessing in the midst of this. The Richer's are Jims parents neighbors. We always knew they were special people. The Richer's are planning a benefit on August 14th at Danville School where Zach is to go to school. All money raised will go to Zach. Ray is a wildlife photographer and is an expert on Loons. He will give a presentation on Loons complete with rare photos of these wonderful birds during nesting season. ( The Richers email: rloonnest@fairpoint.net and their website is: http://www.photosbyrayricher.com/ )
So, not only have they organized the benefit, they have prayed, let us store our stuff in their garage,and NOW they have found a home for us to stay in. Evelyn's Aunt Louise has a home in St Johnsbury that she has totally renovated, however, she is not living there. She currently lives in West Virginia. Aunt Louise has offered to have us stay in her home, rent free, for Zach. She states we have answered her prayers. Not only is it exactly what we need for Zachs sake, its only 1 mile (3 minutes) from the hospital, so when we bring Zach home, if he develops a fever we are very close to the hospital where the blood cultures and antibiotic could be given to Zach ASAP and we would be off to Burlington. Evelyns mom, Doris Demick, has also jumped right in and has been wonderful in showing the house and taking the time to clean and move things along with Ray, Evelyn and neighbors. Doris is a retired school teacher and realizes Zach will have to be home schooled/tutored for some of the 1st grade and is gathering the information for us. Thank you Ray,Evelyn, Doris and Aunt Louise.....God is good!

Thats the update for today. Feel free to email or make comments on this site for Zach to read. Today he wants me to tell everyone that he feels good and that he is having a great time beating his Dad at hockey on playstation 2!!

With God all things are possible