November 29

So sorry for the lapse in posts.

Today Max was admitted to Helen DeVos Childrens Hospital with a possible blood infection. At list point we are waiting to see if this new culture "grows" anything. We aren't sure how long this stay will be. Just waiting like, always.It is frustrating to be here, but a blood infection isn't something to mess around with.
On the up side the docs aren't going to give him anymore chemo!!!!! Can't believe it, but I am going with it. Even though this journey only began in March it feels like we have been dealing with this for years.

I can't wait to post pics of him! He is doing soooo sooo sooo good (other than this little set back and last months pneumonia)!!!! I had no idea he was sick. He is running around, laughing, singing,...the kid is so resilient. He blows me away.
I will keep you posted with the cultures results.

Thanks for your prayers. We really do feel them. He wouldn't be where he is without the support and love of everyone. Who are we kidding, I would be committed without your prayers and support. =)

October 2

Today was Max's first transplant clinic appointment. So far so good!!! His labs came back great, the liver is "taking" so far! The only thing we need to watch is his fluids. He is having severe severe diarrhea from all the meds. He is a little dehydrated. Which can get pretty serious if not taken care of. Thankfully giving him more fluids is an easy solution. So, poor Max is floating away from LARGE amounts of water. When I walk up to him he says "no moe (more) wawa (water) Mommy, no more wawa." He is so stinkin cute.
He is finally settled into being at home. He is now playing, laughing, and "reading" again. I have such an awesome kid. I know I say that a lot but I really really have an awesome kid(s). Wes is doing so great with all this chaos. I think he misses Grandma though. He keeps asking if its a Dama (Gandma) day. Thankfully we didn't exhaust Grandma to much and she still comes to hang out. =)

September 26

I just realized I never posted that MAX IS HOME!!!!! He came home Monday late afternoon.
We are all adjusting. Max is walking around a little. He is still EXTREMELY clingy to me. Which I completely understand after everything he has been through. We are doing LOTS of rocking in the rocking chair. When I do get a minute I am trying to organize the house and all his new meds. I thought he was on a lot before, Wow was I wrong. Many Many meds and on a VERY VERY strict schedule.
All in all we are doing pretty well. Max has an appointment with his oncologists tomorrow (Thursday) and a follow up in the transplant clinic Tuesday. Its going to be a chaotic fall, but at least I have my little guy on the way to recovery and health (if I dare use that word).

September 21

Max is loving being on a peds floor. He has gotten to take wagon rides (one of his most favorite things to do), play with the Physical Therapists, and play with his toys. I LOVE to see my little man being a kid, not a patient.
He has had a really great couple days. ?The only complication was today. At some point during the day he opened up part of his incision. They aren't quite sure how they are going to fix it yet. This Mama says I don't care how you fix it just give him some meds. He has one BIG case of "white coat syndrome."  Who wouldn't after all the stuff he has been though.
If things continue to go well Max will get to go home Monday! That would be INCREDIBLE!!! Can't wait to have all my guys under one roof with me.

Sept. 16

Max is holding up pretty well. He is still dealing with a lot of pain. He is off CPAP, in an uncuffed trach, no more ART line, and he also got rid of some of his IV's. He is making progress people!
We are still in the PICU. Max isn't quite out of the woods of being put back on the CPAP. It is something they can't do on a peds floor. He also needs to stool/pass gas. He has a very distended tummy from all the gas. It makes thing incredibly painful for the little guys. Lastly, he needs to be eating at a certain rate and digesting the food completely before the trip to peds.
Good news is that the liver seems to be taking! So far the ultrasounds and blood gases look really good. So our main goal is being archived. The rest will hopefully fall into place soon.

It has been difficult to comprehend the gift Max has received. It's so incredibly hard to process that someones child had to pass away on order for mine to live. I can never say thank you enough to that family. I just... there are NO words.
 

Sept. 15

Max is doing fairly well. He is retaining a lot of fluid which is making him VERY puffy. This is in turn pulling on his incision and making things very painful. The fluid is also making it difficult to breathe so his oxygen needs are up. He had a couple times today that they had to medicate him to a point of "stoned" just to get him to calm down.
The good news is that so far there isn't signs of rejection. Blood draws and ultrasounds show good levels and blood flow.

Sept. 12: Max Liver transplant update

Max's transplant is complete. They are currently working on closing him up. Everything went well. The donor liver was a great fit and in great condition.
There was a couple hurdles. The surgeon had a difficult time with the number of veins that formed going to the liver. Also, in a couple places dead cancer cells stuck themselves to other organs.
Overall though he is very pleased with how things went.

Thanks everyone for your prayers and words of encouragement. Please keep them coming. Max has some difficult days ahead of him.

Sept. 12, Max's new Liver

Max and his nurse, Miss Amanda giving thumbs up! He is ready to get his new liver!

Sept. 12

We got "The" call last night that we had a new liver. We got to Ann Arbor around midnight. He went back in to surgery around 5. And now we wait.....at least 8hours. Trying to rest and stay calm.

August 15

Short but important post!

As of yesterday afternoon Max is on the liver transplant list!!!! He is ranked middle to high on the list. We hope to wait 30ish days or less for a new liver.
Hurry up and waiting....

August 8

Today Max and I came home from round 6 of chemo . He walked out of the hospital with his little hat on and sunglasses. What a rock star!

We met with Dr. Lopez last week. Sadly he gave us no new information, nor did he answer any of our questions.  The only new development that came from that visit was Max upsizing his trach. A big time blow to us. We were thinking that it was going to come out. It knocked the wind out of me a little. The trach coming out has been dangled in front of us numerous times, we really thought it was going to happen. Now, not only is it NOT coming out, we have to go through the down sizing process all over again.

We are anxiously waiting for the call that Max is officially on the the transplant list. They tell us it will be any day, but that day hasn't come yet. The sooner the better. 6 rounds of chemo and no real end in sight is terrifying to think about.
As I have said before, I just want this thing out of my son. SOON.

July 29

Last week we took a trip to Ann Arbor with Max. He was sooooo great. He chit chatted with the docs, played with his toys, gave high fives and waves to everyone, and sat still and quiet when needed. Such a trooper.
The consensus is that Max needs a transplant. Not a partial either, a full liver.  The way his tumor is in his body makes it impossible to do anything else but a transplant. Not what I was expecting.
We go back this week Wednesday to meet the rest of the transplant team and to hopefully be put on the list.  We will also get more concrete information on what to expect through this process and life after.
Again we find ourselves in the process of hurry up and waiting.

July 23

Tomorrow is the big day in Ann Arbor. We won't get a lot of info on if he needs the transplant tomorrow. It is more of getting all the tests done to get on the transplant list, and see if he is healthy enough to even be considered.
I will update you on how the day goes and what the tentative plan is.
Please pray for safe travels and positive info on taking out the tumor.

July 18

Max has completed his 5th found of chemo. I can't even describe to you how amazing this kid is. I ask him if he is a Big Brave Boy and he just smiles and says "Yup"!
We have a marathon day set up in Ann Arbor Tuesday. Appointments from 8am until 4 or 5. He will get a liver ultrasound, heart echo, pulmonology appt, cardiology appt, and a couple meetings with the liver transplant surgeons. After all that they will determine what the next step is and we will most likely be on the transplant list.  HOPEFULLY we won't have to go the transplant route but the docs want the option ready if he ends up needing it.
So many thoughts constantly running through my head...so hard to put into words. I am still attempting to be positive but it is hard to manage all the chaos at times.

"Max are you a BIG BRAVE BOY"?
"Yup Mama"
That will help me get through tonight.  =)

July 15

Max's CTscan showed that the tumor(s) are not resectable. So no surgery. This is NOT what I was hoping or expecting.Max's doctor is going to send a referral to a doctor an Mott's in Ann Arbor. He might have a better idea of exactly what the next steps should be. In the meantime Max will have chemo tomorrow (Monday) through Wednesday. His docs want to stay on top of treatment until another plan is determined.
So again its a hurry up and wait situation. I am at a loss. I am trying to stay positive and upbeat for my little guy but I feel like I got the wind knocked out of me. The unknowns are more than terrifying.
As soon as I hear more I will update the blog. Until then I am gonna love on my little guys.  =)

July 11

I know this is late notice ( I really stink at updating the blog) but Max has another CTscan tomorrow. We are hoping that it will show that the tumors have shrunk enough to do surgery. The doctors will call Friday some time to let us know if he is ready for surgery or if he has to do more rounds of chemo.
I am trying my hardest not to work myself up but I am really bad at that. I just really want these tumors out of my son...I know understatement of the year. 
Max is our Big Brave Boy He is so amazing. Its sad that I have learned more from my 3 year old son in the last few months than I have in most of my life.

Sorry for the lapse in blogging. We have been having fun at home and planning for our playroom!

Max is currently in his 4th round of chemo. Things got changed around this time. He is getting a different chemo. Max was having a hard time recovering from cisplatin. They were concerned that it was taking so long for his labs to normalize. So we are now in clinic (out patient) for 5 days getting a different chemo. I am not even going to attempt to try and spell it. So far he is doing great! They said that it will mostlikley start to affect him Thursday. So, we will see what happens then. But until then we are enjoying our happy boy.

May 29

Today was a rough day. Max had a restless night and today didn't get much better. He is incredibly achy from his neupogen shots, I think he is constipated, and the 2 together have given him a fever. I was not a lot of help today. I hadn't slept well at all and have felt "off" all day. Thankfully my fabulous Mother-in-law came over and hung out with the boys so I could take it easy.

Please pray that Max has a better night and that his fever goes away. That I get some sleep and feel refreshed for a new day. And that we all stay healthy in the coming days. Mark is going out of town this weekend and I know he is worried about leaving now.

May 26

Max came home today! He got chemo Friday and this morning. So far he is handling things better than ever. He walked around the house today, played, talked up a storm and laughed a ton. It was so fun to see him feeling so good!

I did have a little cry session yesterday. Mark noticed Max was loosing his eyelashes. I love his lashes. They were so full and long. I know it is a tiny petty thing but...I don't know, it was just another reminder that he is sick. My poor little guy.

May 24

Sorry for hte delay in blogging. I was without a computer for a while.

Max is doing superb!!! The last 10 days have been excellent. He is taking, laughing, playing...all the things he used to do. It has been so much fun to have him back!
Today we checked into the hemoc clinic for chemo weekend. So far his labs have looked great and to my knowledge we are going to be getting a room and starting chemo sometime tonight.
Max has been the hit of clinic today. Saying hi to all the people that walk by and saying the doctors names when they come in, it makes for smiles all around. I know I am biased but he is absolutely amazing.

May 8

All four of us are together again! Max and I came home yesterday around 3:00. He had a great night and so far a really good day. I wish I could say his brother is adjusting well. Wes is just plain naughty.
Max woke up today and walked around! He hasn't done that in over a month. He is talking a lot more to which is so nice to hear. All together so far so....GREAT!!!

May 7

We are still in the hospital but HOPE to go home today! Max started his second round of chemo late Friday night and Saturday. So far he is doing great!!! He is also off oxygen for the first time in in 7 weeks.
When we get home he will be on his numerous meds and we will also need to give him his nupagin shots (90% sure I spelled that wrong). The shots help his bone marrow make white blood cells. They tend to be what makes Max the most uncomfortable.  They targets the marrow they make all his bones extremely achy. It is hard for Max to describe when and where he doesn't feel good. Thankfully we have a couple different options to make him as comfortable as possible.
Gotta go. Docs are rounding.

May 2

We are still in PICU. Max is slowly but surely on the mend. We hope to move back down to a peds floor sometime this week yet. And, maybe if he continues to progress they might consider giving him his chemo this weekend.
I was able to get home for a couple hours tonight and see Wes. He is also feeling better.  He is up to his oh so spunky self.

One day at a time sweet Jesus, one day at time.

April 30

Well we finally have a diagnosis. After 6 long days we are finally getting some where. He has metapneumovirus. I guess that its like/similar to RSV. So we are in the holding pattern. It is now just up to his lungs to heal. There is not a ton that they can give him to "heal" it. He will stay on his his steriod, zithromax (med) and his nebulizers. We are still on the 8th floor (PICU) but I hoping to be back on a peds floor in the next couple days.

Wes is still really struggling at home. Very out of it and sleeping in small increments. His cough is better and today was the first day without a fever. But it is till gonna be a while til I can go home or have Mark up here.

April 29

Today is the 3 year anniversary of my Moms death. I think of her so often. Especially now with all the new stuff going one with Max. It would have broken her heart to see her grandson going some of the things she went though. But she would have been filled with wisdom, strength, encouragement, and Max cuddles...me cuddles  =).
I am thankful that she got to meet her grandsons. To hold their hands, sing with them, and pray over them. She was an amazing woman, I was so very blessed to have her as a Mother.

I am trying to get some of the pics from a couple of her NICU visits but I can't get them to upload. I'll try again a little later.

April 27- Second post

This evening we were moved to PICU. So far NOTHING has changed; NO settings, NO venting, NO meds, NO nebs (nebulizers), No NOTHING. I am more than frustrated at this point. Not sure why in the world they made us move. Not sure why they haven't changed anything. Not sure why no one seems to be listening to me.

I asked the nurse if I could go up to the roof and scream. She just laughed and said that if she knew how to get up there she would have done it more than once in her nursing career. That was one of the brief smiles today. The other was when my son who I thought was sleeping called out to me and said "kiss Mama kiss." Thank Heaven for that little Man."

April 27

The last few days have been trying. Max is still on a peds floor, but he is still mostlikely going to be moved to the PICU. He is making progress but not as fast as some of the doctors would like. 

Yesterday we upsized his trach. This is in hopes that if he needs more ventilation that he will be able to receive the amount of pressure that is needed. The smaller trach  was to little to have been able to give him enough support.
After they changed his trach they changed the way they were aiding his breathing. It FAILED. His oxygen skyrocketed. His work of breathing increased and rate of breath increased. After less than an hour they put him back onto the high flow nasal cannula. It took all night but he is back to where he was yesterday. They suspect that some of his lungs collapsed during the change.
I was irate. From the beginning I told them that he doesn't do well on trach collars. They didn't listen, that is what made me so upset. After that episode I packed up all our stuff thinking they would move us to the PICU (that is what they have been pushing on us the whole time), they didn't. Needless to say we are frustrated, confused, and a little upset.
We still have no real answer to what it is. If it is a virus, infection, kind of pneumonia. We just have to wait and see how he responds to meds and neds.

I haven't been able to see Wes or Mark since Tuesday. Wes hasn't been 100% the last few day. Today Wes was diagnosed with pneumonia.  Mark caught it early so he doesn't need to be admitted. But, It means we can't have contact with them. We can't risk exposing Max to any other germs.

I am so sick of this chaos. I am not good with chaos. I like control. This is really getting old. I just want my family together.

April 25

We made an early appearance to the hospital. We were scheduled to go to the clinic at 10:30. Max wanted to come in earlier so we made a trip to the ER at 6am. He was admitted and we are now on a peds floor. He has early pneumonia...or something like it. He is not getting chemo until this new virus is under control. So again we will be here for an undetermined amount of time.

Yesterday was pretty rough. Thankfully Oma Mary (My Aunt and Honorary Oma) came and cuddled for hours. Max slept better on her lap than he has in weeks. Yay Oma Mary! Night time was... interesting. He had a hard time keeping his sats up. So they set up a couple different breathing options until they found one that worked. He also has breathing treatments every 2 hours so that doesn't lend well to a restful night. 
Today was MUCH better.  He breathing is slower, less labored, heart rate lower, all around better! I even had him laughing! We had a visit from Aunt Becky (my sister) and "Auntie" Anne (a good friend of mine). I like that cause it breaks up the day. Plus Anne spoiled me and brought chinese food!

So it is a waiting game. We wait til the virus is gone. Then make sure he is ready for another round of chemo. Like life has been the last month....hurry and wait.

April 18

Change of plans!!!!
We don't have to be admitted tomorrow for "chemo weekend"! They changed our schedule around a little. We now have to go in on Tuesday through Thursday next week. I am so thrilled that he gets a whole week home (God willing) before chemo. It will give him time to get healthier and stronger for the next round.

Everyday he is a little more himself. Today he wasn't real active but he talked more. He walked around a little bit and SMILED!!!  I missed that most of all.

April 17

We are home! Only for 48 hours but we are thrilled to under one roof.
Max will go back to Helen DeVos Thursday for what we call "Chemo Weekend." He will be admitted and get chemo Thursday, have a recovery day Friday, and then Chemo again on Saturday.

Max is very happy to be home. He isn't real playful but I can tell he is less stressed. He just sits on the couch and watches Wes run around. Once in a while Wes will bring him a toy, but it is pretty much just observing.

April 15 (I am just gonna do dates from now on.)

Well, we are still here...the hospital. I am extremely thankful for this place and its location so close to home. However, I would rather be at home with my family all under one roof.
Our quick ER visit has become almost a week long stay. We thought we would be going home tomorrow but Max has had a rough 24 hours. His weight went up a pound in on night. He retained a ton of fluids. His breathing became labored and fast. His heart rate elevated. And, finally his fevers returned.
They gave him lasiks (a diuretic) to make him pee. A chest x-ray for the breathing which determined that his bolis feedings were to much for him right now. So for the time being he is on a feeding pump.

I want to apologize for my "matter of fact" blogging. I am not the best with words. And, to be honest I am still processing all this yet. My heart is aching and my head is still spinning.

Max's Hospital Haircut

Max with Milo before his haircut.

"Auntie" Heather giving Max his haircut. I am trying to get his lip out. He likes to bite his lower lip, its his self soothe.

 

All finished and so handsome!!!

 

Hospital Visit

Yesterday Max had his on again off again fevers. But at 7:00 they got to high and we had to take him in. He counts had plummeted since the day before. So we were admitted. We will be here til at least Friday, but most likely through the weekend.
They are monitoring his fevers, giving him a couple different antibiotics, blood transfusion, and shot of some kind that boosts white blood cell growth. I am praying that we can get on top of these fevers. The poor little guy has been dealing with them for over 2 weeks now.

I'll post more later, Max is awake and wants to rock....again.

First Monday Chemo

Today was Max's first Monday chemo. It went surprisingly well and it was quick. My Dad came with and hung out. Max sat on Papa's lap and cuddled the whole time. Wes got to go to "school" and hang out with Grandma; who is one of his most favorite people so I know he had a good time at home.

Cuddles with Papa...and Milo of course.

They told us to expect that low grade fevers (which he has had for the last week), jaw pain, and his hair to start falling out in the next few weeks. So far he just still wants constant cuddles and to rock in the rocking chair. The doctors also finally okayed me to give him some tylenol so maybe, just maybe he will sleep tonight - Fingers crossed.

Good night All. We are going to bed early here.  =)

Unexpected Long Day

Today Max had his first appointment at the oncology clinic. His blood work looked great other than he was anemic. So he needed a blood transfusion. So, our 60 minute appointment turned into almost 7 hours. We sat in a room for 2 hours waiting for labs, then waited 2 hours for blood, then the transfusions lasted 2 hours. It was a LONG day. Max was a trooper. He sat on my lap the whole time. He'd fall asleep randomly and cuddle Milo (his stuffed duck). He is so stinkin cute!
Slowly the color is returning to his face and his eyes look a little brighter. Hopefully he will actually sleep tonight and not have anymore fevers.

Cancer stinks. That is all I have to say about that.

Max, chemo or sick????

The last couple day have been trying. I am having a hard time figuring out if Max isn't feeling good because of the chemo or if something else is going on. It is so difficult watching your child struggle and there is nothing you can do to comfort them. Thankfully we have an appointment tomorrow.  However I am a little scared that they will admit him. Which to Max is the worst thing in the whole world. This is already more difficult than I anticipated.
Please pray that Max can get a good night of sleep and no more fevers. 

Max is home!

Max came home from the hospital today! He is feeling pretty good. He is pretty cuddly but I can handle that.
He has had a couple rough nights but we are hoping that the severe nausea has subsided. He has really handled everything very well. He is such a trooper.

Thanks to our amazing church Max came home to a clean house! Not only a clean house but disinfected toys as well. Hopefully this will cut down on germs. We need a healthy Max Man.
Thanks Haven ladies!!!

A few pics of this week.

Max getting ready for surgery Tuesday.

Gowned up, Elmo hat on, Milo (his duck) in his arms; He is ready to go.

Max took a walk around the hospital tonight (Saturday). He cried when we came back to the room.

Another journey has begun...

Today we received the the pathology results. They are exactly what we had expected. Max has cancer.
It feels weird to say, "My son has cancer." Wow, never in a million years did I EVER expect to say that.

He started chemo tonight. Tomorrow he has off and then another chemo cocktail Sunday. He will need to come back Mondays and go the the outpatient clinic, and every 3 weeks he will be back inpatient for a couple days.

Sorry for being so short. I am tired and anxious of what tonight is going to bring.

Max and Wes are 3!!!! -and- MAX 3.0

This is gonna be short and sweet...

Max and Wes and 3!!!

Our Miracle Men turned 3 yesterday. Still can't believe it! We had a fun impromptu party Monday night. The boys had a blast being the center of attention. Nothing like presents and balloons to make a kids day!

MAX 3.0

I am calling yesterday MAX 3.0 for Max Man. He turned 3 and had 3 procedures.
The surgeons first put in his broviac. It is the "port" he will use for chemo and labs. It is smaller than I thought and I think it will be easy to take care of. He also had a biopsy of his liver. The surgeon said the tumor looked "angry." My friend (Our amazing nurse Ashley tuned fantastic friend) pointed out, "what tumor isn't angry???" We are very glad we found it now. It hasn't spread to any other parts of the body. The third procedure was a specialized hearing test. This was done to get a baseline of his hearing. This was done because one of the chemos they would like to use affects hearing.

Chemo will start later this week. We are waiting for the pathology reports to come back to know the exact chemos and how often the cycles will be.
He has a good prognosis. The specialists used the word remission and cure several times. So we wait for the biopsy results and make a plan after that.

Tired.

Sorry I will update tomorrow. I am exhausted.
Surgery went well. We are just working on pain management. I will have a more detailed post tomorrow.

Kate