Happy New Year!

We hope everyone had a Merry Christmas.  We sure did!  We were able to spend time with family and friends over the Christmas weekend.  On Christmas Eve, we celebrated with Russ's mom side of the family.  Korene, Russ's cousin, and her husband, Al, decided to have a raffle to raise money for ABC 4 Maddy.  All of our family members bought tickets for a chance to win a high chair and a child's table and chair set that Al had built.  After all was said and done, we raised $1020.00 for Relay for Life.  It also reminded us of what Christmas is really all about.

On Christmas day, Santa was good to us.  He brought Maddy an electric scooter and the video was taken Christmas morning.  We just had to share.  As you can see on the video, Maddy had a little difficulty remembering to let go of the throttle before trying to get off the scooter and she sacrificed her body to save Andre's car.  Good thing her platelet count was up on Christmas-  not too many bruises!  After that first ride, Maddy kept saying that Santa brought her a dangerous toy.  Shame on you Santa!  Since then though, she has gotten used to the scooter and loves it!

We are now looking forward to celebrating the new year.  Maddy had counts twice this week, and she still isn't where she needs to be to start her next treatment.  We are now looking at next week.  On one hand, we are glad that she has been able to enjoy the holidays.  On the other hand though, these delays just prolong this whole process.  It just reminds us that we have to enjoy each day and not waste time trying to control  things that are beyond our control.  This of course is often easier said than done!


Happy New Year!

Update

Maddy has had a rough couple of weeks since she started the Intesification 2 phase. Maddy did not respond well to the chemo that she got at the start of this phase. She spiked fevers and had to stay a couple extra days in the hospital than expected. Her counts dropped dramatically and quickly. She has now had to get three pints of blood and three platelet transfusions. She has also had some stomach pain and vomiting. We are also still having to give her daily shots to try to generate white blood cells. Since her counts are not yet recovering, her next chemo treatment that was supposed to start on Monday is going to be delayed. We hope to avoid the hospital for the holidays. It looks like she may start the next treatment the week after Christmas. The worst part of all this is the fact that she has to do this three more times!

On top of all of this, we have also been busy getting ready for Christmas. Maddy is so excited and has been trying to get me to let her open presents early. Her sister Julia is busy with school and basketball. We are all ready for a little break to rest up.

We hope everyone is able to enjoy time with family and friends over the holidays. We wish you all a very Merry Christmas and a Happy New Year!

Intensification 2

We hope everyone was able to have a wonderful Thanksgiving holiday.  We were blessed to be able to spend some time with family, and of course, we ate way too much!

Maddy had Thanksgiving "off", but she had to go to the hospital today to start her next phase of treatment. This phase, Intensification 2, consists of 4 six week cycles.  She will be in the hospital for a few days this week and then again in three weeks.  Hopefully, she stays healthy and her counts  stay reasonable so she doesn't get stuck in the hospital longer.  We will be cutting it close around Christmas as it is.

We all try to stay strong each day, but sometimes there are events that make it difficult.  One such event was the recent passing of Tiana.  Tiana was 12 years old and fought cancer for two and a half years.  She passed away on November 20th.  We met Tiana and her family through "cancer" events and followed her blog.  Though we did not know her well, we felt a connection to her and she was truly an inspiration to our family.  When we told Maddy that Tiana had passed away, she sobbed out of sadness for Tiana and out of fear of what she thought could happen to her.  This was the second time we had to tell Maddy that a "friend" had lost their battle with cancer.  It is something we don't wish to have to do again!  Please keep Tiana and her family in your thoughts and prayers, and continue to pray that we find a cure for this terrible disease.   

Two Years

Saturday marked the two year anniversary of Maddy's diagnosis.  Sitting back and reflecting on the last two years, it seems time has gone by so quickly on one hand but on the other, it is almost impossible to remember what life was like B.C.  (Before Cancer).  So much seems to have changed in our lives these past two years, but as you can see by the pictures below, it sometimes doesn't feel like we haven't gotten very far in this journey and the end is still not as near as we would like it.   However, we continue to feel blessed to be surrounded by so many family and friends who continue to support us and pray for us!  You are ALL mighty prayer warriors and you have stuck with us, and for this, we are forever grateful!  While our party has been postponed, we remain faithful that by November 2013, we will have reason to celebrate and you will all be invited!!!!

November 2009

                                        

November 2011

November Update

It had been a while since our last post, so I thought I would give a quick update. Maddy has been receiving her weekly treatments and she is currently on steroids again. She is doing well, but the treatments are taking their toll on her. She is sooooo tired! She has another treatment on Thursday and then she will have a little break until after Thanksgiving. Looking forward to this...

ABC 4 Maddy

While it seems a long time from now, believe it or not, it is time to start thinking about the 2012 Relay For Life which will be held on June 8, 2012.  Deb, Cindy, and Jen are again co-chairing the ABC 4 Maddy team.  The team is registered and everyone is welcome to join our team, make a donation, or just join us in June.  To check out our team, make a donation (to the team or a specific member) and/or join our team, go to:

http://main.acsevents.org/site/TR?pg=entry&fr_id=36779


P.S. - Maddy is a little tired and grumpy this week, but otherwise, doing well.  She is due back to the clinic on Friday for another treatment.  

Friday Update

Maddy's fever broke and all the cultures came back negative, so she was able to come home from the hospital Wednesday evening so she could sleep in her own bed (or should I say Mom and Dad's bed) and eat "good" food.  She had to come back to the PICU on Thursday to start the next phase of treatment, and she is back at the clinic today for another treatment.  Maddy started her steroids too.  It is amazing how quickly they change her mood and just make her feel yucky!  She has already asked that we get stocked up on teriyaki wings!


It is tough to see Maddy go through all of this, and this week was especially rough trying to juggle everything.  It is times like this that we look for something to give us the hope and strength to keep going.  Sometimes this hope and strength comes from the littlest things-  Maddy was sleeping next to me (Mom) last night.  I was tossing and turning having trouble sleeping when Maddy rolled over and just started laughing in her sleep.  There is comfort in knowing that Maddy is still able to have happy dreams and this has given us a renewed strength.  God works in mysterious ways...

Jinx

I think I jinxed Maddy- I said we were hoping for no hospital visits during this phase and Maddy woke up this morning with a 102 fever, so... we are at the hospital. Maddy is on antibiotics. So far, her strep test and flu swab came back negative. We are waiting to see if anything grows in the cultures. Hopefully, it's just a little cold. We are staying the night and will see what tomorrow brings. Maddy is also supposed to have treatments on Thursday and Friday of this week. This is turning out to be a pretty stinky week!

Reinduction

Maddy finally finished up the Intestification 1 phase of treatment. She had last week off of treatment and only needed bloodwork, a physical, and an echocardiogram to get prepared for the next phase of treatment. She also had to get her flu shot while her counts were up. Maddy will start the four week Reinduction phase on Thursday. This phase consists of spinals, a couple different chemo drugs, and STEROIDS- time to stock up on teriyaki wings! This phase is outpatient. We hope to avoid any hospital stays and enjoy this time as much as possible. The next phase is going to be long and hard.

Cycle Four

Maddy's counts were good this week so she was able to start the last cycle in this current phase of treatment on Thursday. That means we get to hang out in the hospital all weekend!

Cycle Four Delayed

It seems like it has been a while since I have posted an update.  That's because we seem to have gotten back into a "normal" routine- atleast our version of normal.  School is in full swing.  Russ and I are busy with work, sporting events, etc.  In between, we run back and forth to Toledo with Maddy for treatments weekly.  Maddy is getting some help from a tutor at home and Skypes with her classmates to stay in touch.  She was due to start the fourth cycle of chemo in her current phase of treatment tomorrow, but her counts aren't quite where they need to be.  We will try again next week!

Childhood Cancer Awareness Month

September is Childhood Cancer Awareness month.  Below is a link to the Cure Search web-site with a lot of resources and facts about childhood cancer.  It is also where you can make a donation for childhood cancer research.  Their mission:

To fund and support children’s cancer research and to provide information and resources to all those affected by children’s cancer.

http://www.curesearch.org/ArticleView2.aspx?id=9699&r=9700


Please keep all the children battling cancer in your thoughts and prayers this month!  Below is a link to a video that reminds us of the need to continue to pray and to continue to fight to find a cure:

http://www.youtube.com/watch?v=AGS4yE5v9rM&feature=player_embedded

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Maddy continues her battle.  She was able to come home Friday from the hospital.  She is doing well and her counts are holding out, so she will have another treatment tomorrow (Wednesday).  This is just a one day clinic visit.  Fortunately, Maddy has wonderful grandparents who have been helping us out again this school year taking turns at our house and at the hospital so Russ and I do not need to miss as much school. It is just a very busy time of the year with school, Cross Country, and now Julia is playing volleyball-  can't believe she is in seventh grade already.  We are getting good at juggling...

Cycle 3 Started

Maddy's counts were good on Monday, so we headed to the hospital on Tuesday morning to get started with the third chemo cycle of this phase of treatment.  Of course it took all day to get Maddy ready for the chemo (hydration, pH levels, etc.).  Maddy was bored so went for a walk to bug the nurses while waiting.  I told them to put her to work, so Maddy helped one of the nursing assistants fill out an environmental survey.  She had her clipboard and had to inspect the whole sixth floor of the hospital.  At one point, I went to check on her and found her behind the nurses station filling out the survey!  I'm trying to figure out if it is a good thing or a bad thing that Maddy feels right at home at the hospital...  Finally at around 8:30 PM last night, Maddy was ready to start the chemo.  Twenty-four hours of chemo and then we wait for her to recover.  We hope she can be home for the long weekend.

Exhaustion is setting in already!

New School Year

Well, the new school year started off well.  Maddy snuck into school during the day on Monday to meet her teacher and look around the classroom.  She also had blood work done, but her counts were too low to start the next cycle of treatments.  Fortunately, this allowed her to Skype in during the first two days of school to participate in some of the "get to know you" activities with her class.  She had blood work done again today in hopes that she could start treatment, but her counts actually dropped from earlier in the week.  Now we are on hold until Monday again.  On one hand, we are glad we were able to make it through the first week of school without a hospital stay.  On the other hand, the delays just prolong this whole journey, so we tend to want to rush it along.  These are the times we have to remind ourselves to take it day by day and make the most of each of those days.  The future will be here soon enough!

Moving Forward

Maddy was finally able to have her chemo treatment on Monday.  She also had to get her Broviac catheter repaired- one of the lumens (lines) was damaged.  Fortunately, the repair just consisted of cutting off the damaged portion of the line and gluing the new line on.  We are hoping this repair lasts as we really don't want Maddy to have to go through another surgery to have a new catheter put in.

She will hopefully finish Cycle 2 next week when she has her spinal chemo treatment.  Unfortunately, with all the delays, this puts her starting Cycle 3 with a four day hospital stay during the first week of school.  Russ and I will have to figure out what to do with this, but there is always a chance that her counts won't be high enough and we will have another delay.  This is what drives us CRAZY!

We just loaded a bunch of pictures from over the summer.  I thought I would share some of the highlights.

Cycle 2 Delays

It is hard to believe that August is here! July just flew by. We spent a lot of time at softball games and visiting with family and friends in between treatments. The month ended with The Cure Search Walk this past Saturday. The walk went well. We saw some friends we have made through our clinic and hospital visits. We also had some family join our team to walk. All the children were honored- those battling cancer and those who have lost the battle. The walk raised close to $30,000. Not bad for the first time walk! Thanks to everyone who donated to this great cause. While a lot of advances in the treatment of childhood cancer have been made, many more are needed!

Maddy is still trying to get through the second cycle in this first phase of treatment. Her counts were not high enough last week to have her week 2 treatment so she had bloodwork again today. Her counts are still not high enough so we will try again next Monday. Having time off this summer has been nice. While our world still revolved around Maddy's treatments, we at least didn't have as many other schedules and commitments to work around. Now that August is here, it is going to start to get hectic again! We are not looking forward to this.

Maddy is excited about school starting even though she is not going to be able to actually go to school at the start of the year. She has already gotten her school supplies and had her dad and I rearrange the office at home- she was tired of how her "classroom" was arranged and needed a change! : )

Cycle #2

Maddy got her wish and her counts were not high enough to start her chemo treatment last week, so she was able to spend time with family that is visiting from New Jersey and she was able to see her cousin Casen from Findlay. This made Maddy happy!

She had her blood work done again yesterday and her counts had come up. Her doctor was going to be out on Thursday so they went ahead and started her treatment yesterday too. If all goes well, we hope to be out by Saturday evening.

We are now looking forward to the Cure Search walk in Toledo coming up on July 30, 2011. We are members of the DreamMakers team from Mercy Children's Hospital.  We would love to have some family and friends join us if possible. You can check out all the details at: http://www.curesearchwalk.org/toledo

The money that this event raises will be used specifically for childhood cancer research. Advances in treatment from this research is essential- a new protocol has already been developed for Maddy's type of leukemia since she was first diagnosed that has lessened relapse rates. While we wish these research results would have been available sooner for Maddy's sake, we are encouraged that advances are made almost continuously that improve survival rates for all of our children fighting this battle.

One Cycle Down- Three To Go

We hope everyone enjoyed the Fourth of July weekend as much as we did.  The weather was beautiful, and we were able to have a lot of fun with family and friends.  We saw some awesome fireworks as well!

Maddy headed to the hospital today to have a spinal tap with chemo.  Her platelets and red blood cells were low so she had to get transfusions.  This of course meant that what was going to be a quick trip took ALL day.  However, Maddy should be a little perkier now and maybe won't continue to have bruises all over her body.  This marked the end of the first of 4 chemo cycles of the Intensification 1 phase.  She has three more to go before heading into the next phase.  Her hair is starting to grow back darker than ever.  Unfortunately, it won't last for long.

Maddy and Julia are looking forward to their birthdays this weekend.  We are going to go to a Hot Air Balloon Festival in Angola.  We also have some family coming for a visit from New Jersey next week.  Unfortunately, Maddy is supposed to start her next cycle next week which will include a 3-4 day stay in the hospital again.  She cried all afternoon because she is not going to be able to spend a lot of time with them if she is admitted.  It is times like this that just STINK!  It is also times like these that we hope her counts are not good enough so treatment is delayed!

Home

Maddy's "levels" were not good yesterday so she had to stay one more night at the hospital- she was not happy and would not talk to Dr. Kitchen yesterday! However, her levels were where they needed to be this morning so she was able to come home pretty early this morning.

She has to go back on Thursday for another treatment, but that should just be a one day visit to the clinic. We are looking forward for the 4th of July weekend as we will be spending it with family and celebrating birthdays!

Friday

Maddy finally was able to start her treatment at around midnight last night. She is getting the gallon of methotrexate again that runs 24 hours so she will be done at midnight tonight. Our goal is to get out of here by Sunday. Thanks Miss Heckel and Mrs. Beuhrer for the visit. Maddy enjoyed having some company.

Counts Up

Maddy went to the clinic this morning for blood work. Her counts were up today, so she was sent to the hospital to be admitted for treatment- only after stopping at the cafeteria for some BBQ ribs for "lunch" at 11:00 AM. As of 8:00 PM, her treatment hasn't started yet. They are having trouble getting her pH level and specific gravity where it needs to be before they start the chemo. The nurse has a call into the oncologist to see what she wants them to do. Hopefully they figure it out soon so we can get going- the sooner we get started the sooner we can get out of the hospital.

Monday's Doctor Visit

Maddy went to the clinic for bloodwork yesterday and to the PICU for her bone marrow aspirate.  Her bloodwork came back and her platelet count was too low to proceed with the chemo treatment, so we will try again on Thursday.  The doctor looked at the bone marrow and said it looked good to her (no leukemia cells), but it will be sent out for further testing.  This was a relief!

Decision

We have had some friends and family ask, so we thought we would let everyone know that we have decided to have Maddy continue with the chemotherapy protocol instead of going for a bone marrow transplant.  This was a very difficult decision-  one that we put off as long as possible.  Now that the decision has been made, we are looking forward and praying for continued strength.

The decision to continue with chemo is a two year commitment consisting of the following:

Intensification 1 (4 cycles of chemo lasting three weeks each)
Reinduction (1 cycle of chemo lasting five weeks)
Intensification 2 (4 cycles of chemo lasting six weeks each)
Maintenance (5 cycles of chemo lasting 10 weeks each plus radiation)

This should take us to around March 2013.  Maddy is scheduled for a bone marrow aspirate on Monday and if her counts are good, she will start the first cycle of the Intensification 1 phase.


On another note, our family has signed up to walk at a Cure Search event to raise money for childhood cancer research.  The walk is Saturday, July 30,2011 at Pacesetter Park in Sylvania Ohio.  Registration/check in is at 8:30 am and opening ceremony and walk is at 9:30 am.

CureSearch is the ONLY research facility that contributes directly to the protocols and treatments of over 80% of all children that are battling cancer. It is also the only one that is exclusivly researching childhood cancers. 96% of all donations go directly towards research with only 4% administrative.  If interested, you can check out the event at www.curesearchwalk.org/toledo.  Our family joined the "DreamMakers" team with the Mercy Group.  

We hope everyone enjoys this beautiful weekend!  Happy Father's Day to all those dads out there!

Relay For Life 2011

Well, Maddy made it to RFL.  Again, another gift from God!  She was able to get her treatment and get out of the hospital in time.  She felt good.  The storms that the weathermen were calling for Friday evening seemed to just go past us...  need I say more!

The evening started off with Maddy being honored as the Junior Honorary Chair. She was so brave and stood up in front of hundreds of people and read her story, All About Maddy.  It was awesome to see the sea of lime green out in the crowd which gave her courage.  From there, the fun and festivities began.  Maddy had a wonderful time and held out until midnight before retiring to Mrs. D's RV for the night (she refused to go home to sleep).  Words can't express how wonderful the night was. (You just have to be a part of Relay to really understand it.)  Russ and I are so grateful for everything that Deb, Cindy, and Jen did to get the ABC 4 Maddy team up and going.  We are also grateful for the many people who volunteered their time and talents to make the team a success.  As of Saturday at noon, our team had raised $13,000 of the over $140,000 collected in Fulton county.  How AMAZING!!!!  I have included just a few of the many pictures that were taken.  Enjoy!

  

Thursday

MADDY IS HOME!!!!

Tuesday

Maddy finished receiving what amounted to be about a gallon of chemo through her IV over a 24 hour period around 8:30 this evening.  Julia and I went to the hospital this evening with strict orders to stop at the Spaghetti Warehouse to pick up dinner on the way.  We were able to sit down as a family and have dinner and a few laughs.  Maddy then started to get very tired.  After her chemo was finished, we cuddled in bed and she fell sound asleep in a very short time.  As I laid beside her, I noticed that she had lost all of her eyelashes...

Maddy is still determined to get discharged by Friday.  She made Julia and I bring everything she would need for Relay tonight just in case we have to go straight from the hospital on Friday.  I am afraid that the chemo is going to knock her down, but she is tough and usually does what she says she is going to do.   The other day, Maddy was working on a little craft project.  She wrote a little saying on an index card that she was going to use on her project, but decided not to and threw it away.  Russ and I dug it out of the trash and this is what she had written:

I know I'm strong,
I know I can do it,
and I know God is with me!

Treatment Started

After a two week break, Maddy's counts finally got high enough to start her next treatment today.  She was hoping to get one more week off because she really wants to make it to the Fulton County Relay For Life event this coming Friday.   We have already told everyone we can think of at the hospital that Maddy just has to be ready to be discharged by Friday!  Now, we are praying that her body metabolizes the chemo they are going to give her so they will allow her to be discharged  according to OUR plan!  : )

Maddy had her spinal this morning and she has been getting fluids all day in preparation for the chemo.  They are also checking her "specific gravity" to make sure she is ready-  that is a new one for us.  We are not quite sure what that means...  She is in good spirits and hopefully will not have any complications.

We'll let you know how the week goes...

Postponed Again

Maddy had a good week last week.  She even got to go to the park to have lunch with her classmates on Friday.  We also had a busy weekend and enjoyed some time together seeing some family and friends.  Maddy had blood work today and her counts are still not high enough for treatment, so it has been postponed again.  We are hoping that next Tuesday she will be ready.  This is getting close to Relay for Life.  We have decided that we will just tell the doctors that Maddy has to be discharged by Friday.  If not...  there may be another great escape!

Treatment Postponed

Maddy had bloodwork done today.  Her counts actually dropped from Friday, so her next treatment has been postponed until next week.  We will again take advantage of the extra time together at home.

P.S.-  Some pictures of Field Day!

Good Day

Maddy has felt better and been more active everyday since she has been home.  Her counts are not the greatest, but they are climbing right now.  She took this opportunity to join her class for Field Day today at school-  with most events outside, we thought it would be good for her.  It could not have been a more perfect day!  Maddy played and laughed with her friends.  It was good to see her with all of her classmates.  They were excited to see Maddy as well.  In anticipation of having to go back to the hospital next week, we plan to take advantage of the great weekend ahead!

Hoping everyone is able to take a moment to enjoy the little things in life this weekend.

Home Again

Maddy's white blood cell count was up today and she was feeling better so we were able to talk the doctor into letting us come home. Maddy is scheduled to be admitted next week for her next treatment, so I think the doctor felt sorry for us and wanted to give us a break. Maddy had to get a transfusion of red blood cells and platelets before she could leave and we had to get set up to be able to continue her IV antibiotics at home. Maddy is glad to be home. She actually ate when she got home- the first time since Friday when she went into the hospital. The visiting nurse came by the house to show us how to use the IV pump and get it hooked up to Maddy. Maddy now has a little "fanny pack" to carry around that holds the IV pump and bag of antibiotics. The bag is black- Maddy would have preferred lime green! : )

The best part of this day... When we got home, seeing Maddy and Julia put their arms around each other and walk into the living room smiling and laughing.

Jinx

Well, we did not reach our goal! Maddy continued to not feel well and started to have a lot of pain and discomfort during the night, but she was not running a fever. We finally broke down and called the doctor when Maddy could not even sit up or sleep and at 3:30 AM, Maddy and Russ were headed back to the hospital. I got Julia taken care of and then headed to the hospital later in the morning. Maddy's symptoms are pointing to some kind of infection. They have Maddy on three different antibiotics and morphine for the pain. She had a CT Scan this morning and they are watching for any signs of the infection. Unfortunately, because she has no immune system, those signs don't always show up until the white blood count starts to recover. Maddy is feeling better and her pain is under control. We are now hoping to get things figured out, so we can come home soon!

Down and Out

It seemed like this week was VERY long. It started out pretty good- Maddy felt well and was able to Skype with her class and get a few other things accomplished. We knew her counts would be dropping, so we tried to pack in as much as possible early in the week. By Thursday, she had bloodwork and all her counts were way down. Russ and Maddy took a trip to the hospital for transfusions Thursday evening and didn't get home until 1:00 AM. Maddy felt pretty miserable all day today. She was tired and had lots of aches and pains. She doesn't have much energy at all. Her immune system is wiped out, so we have to watch for infections. Our goal is to stay out of the hospital this weekend!

We're Home!

Maddy had her last treatment this morning and had to get fluids for eight hours afterwards.  The doctor told us we would be able to leave the hospital at 8 PM.  Maddy had her shoes on waiting for the nurse to come in to do vitals and unhook her IV.  She was about to do it all herself when the nurse finally came in around 8:15.   As soon as he was done, we took off before they changed their minds!  : )

I hope all mothers out there have a wonderful Mother's Day!  (I know I will now...)

Update- Day 4

Maddy continues to do well. She had a transfusion on Thursday which has given her a little more energy. Her appetite for hospital food isn't the greatest, but she did eat the Kentucky Fried Chicken, mashed potatoes, and cole slaw she requested for dinner tonight.

She has 4 treatments down and one more to go tomorrow. Our goal is to be home by Saturday night!

Update- Day 2

Maddy is doing well.  She had her spinal yesterday and received her first two chemo treatments.  This chemo can affect the kidneys, so they are monitoring this.   She will continue getting the two chemo treatments each day for a total of five days.  

Last night, Maddy was in a good mood.  We went for a walk and searched out all the little babies in the PICU.  We also scoped out some more rooms.  We found the room we want next time-  it is big enough for two beds and the big reclining chair that we found on a previous visit! :  )   We also convinced the nurses to swap out our TV remote/call button with one that actually has numbered buttons and can go up and down channels.  It was a very productive walk!  : )

Today, Maddy was very tired.  She had to be woken up throughout the night and "tiredness" is one of the side effects of the chemo, but she is as ornery as ever.

Induction 3- Day 1

Maddy had bloodwork today and her counts have "recovered" enough to start the next phase of treatment tomorrow.  She and her Dad will be heading to St. V's in the morning.  This visit will hopefully last for only five days and then Maddy should then be able to come home if there are no other complications.  Unfortunately, we will then have to start up the daily shots again until her white blood cells recover.  On day 22 of this phase, she will return for further treatment and then she will have a recovery period again.  The next step will then depend on what path we take for her extended treatment- something Russ and I are still struggling with.

First Communion

A Picture Is Worth A Thousand Words......

Waiting

Maddy has had a pretty good week. She had bloodwork on Monday and didn't need any transfusions. We were also able to cut back on some of the antibiotics and anti-fungal medications she was taking. Maddy has taken advantage of being home this week to catch up a little on some school work and Skype with her classmates.

Maddy had bloodwork today. Her platelets are still low but they are recovering because they are 38,000 up from 24,000 on Monday. They have to get to 75,000 along with a neutrophil count of 750 before we start her next treatment. Her neutrophil count is only at 500 now. This is low too, but the nurse thinks by Sunday, it will be higher. We are going to count on it!

We realized yesterday that this coming weekend was probably going to be the last weekend in a while that Maddy would be home and have decent counts. This weekend also just so happens to be the weekend when she was supposed to receive her first communion- something we thought she was going to miss. It turns out that she should be able to participate in the ceremony on Sunday, so now we are scrambling to get the dress, the shoes, the meal figured out, etc., but it is worth it! Maddy said yesterday that she hoped her counts were not too high yet because she wants to attend the Relay for Life bake sale that we are having at the Archbold Relays and she wants to attend her First Communion.

We plan to take advantage of this weekend! On Monday, Maddy will have bloodwork again to see if she is "ready" to start her next treatment.

P.S.

P.S.- I forgot to mention that we had a special visitor on Thursday as you can see from the pictures below.  Again, everyone is way too generous!  We hid all the eggs that the Easter Bunny brought for Maddy and Casen to find today.  Maddy, along with her grandmas and aunt, loved reading all the notes inside.

P.S.S.-  Maddy got some awesome new tennis shoes.  Her feet have grown!  They are not the zigs, but they are turquoise and neon yellow nike running shoes!  We did also get a couple pair of flip flops.  Today is a beautiful day to wear them!  We are hoping for many more days like this.

Good Friday

Good Friday turned out to be very good for Maddy.  We went to the hospital to have blood work done this morning.  For some reason, the nurses could not get a blood return from her catheter.  (This has happened before, and they have to inject a certain medicine that sits in her lines for atleast two hours or more and opens them up.)  This wasn't a good start.  Maddy agreed to have them draw blood from her arm to get things going.  Her blood work came back and looked great.  She did not need any transfusions and her white blood cells were high enough that the doctor said we could stop the shots!  WOOHOO!   The nurse put the medicine in her lines and we said we would draw it off at home so we didn't have to wait in the hospital any longer (Russ and I are getting pretty good with all these medical procedures.)  : )

We are having some family over for Easter this weekend.  Maddy is excited about seeing her cousin, Casen, who is 1.  She will have to have blood work done again on Monday and go to the clinic if she needs a transfusion by then, but we are going to take advantage of these next couple of days.

We hope everyone has a wonderful Easter and is able to spend time together enjoying the holiday!


Let the resurrection joy lift us from loneliness and weakness and despair to strength and beauty and happiness.  ~Floyd W. Tomkins

Day # 27 - Free At Last

We're home!!!

Maddy's White Blood Count went up to 700 and her Absolute Neutrophil Count was 420 this morning.  She slept well last night and woke up this morning feeling good, so when the doctor came in to see us, she said we could come home.  Of course it took all day to get ready.  Maddy needed a red blood cell transfusion before she could leave.  We also needed to get many prescriptions filled, our monthly calendar to keep everything straight, and a delivery from Toledo IV with the shots that we have to continue to give Maddy at home for a while longer.  Then, I had to pack the room up and get everything loaded.  Luckily, Maddy's nurse got me a cart to use.  I did get some funny looks as I pushed the cart full of stuff through the halls to the parking garage!  I only had to make three trips!  : )  We pulled into our driveway at 7:15 PM.

We are definitely happy to be home, but it is a little overwhelming too.  Russ and I sorted through the seven prescriptions we came home with and got the BIG pill case out again.  We have a visiting nurse coming tomorrow to show us how to give Maddy her shots.  We have to go back to the hospital on Friday for blood work and possibly transfusions if they are needed.  Depending on how Maddy is doing next week, we may need to go back to the clinic on Monday and Thursday or have the visiting nurse come to draw blood.  Then, as soon as Maddy's counts reach a certain point, she will be back in the hospital to start the next induction phase.  Then, we have to make "the decision"...

We have been taking it day by day lately just to get through all of this, but now we are being forced to look ahead and it makes it a lot more difficult.  We have to remind ourselves to take advantage of every good moment.

A quote that a friend who has gone through a similar situation shared with us comes to mind:

Anticipating how the story might go only keeps us from enjoying how the story is going.     

So we will enjoy being home and celebrating Easter together and face the next challenge as it comes!

Day #26

Finally, Maddy's white blood cell count got up to 500 today with a neutrophil count of 320 (if you looked out your window this morning, you might have seen the "white fairies" falling from the sky- they all landed in Maddy's room). : ) If we can get a couple of days at this rate and get the C. Diff under control, we should be able to get Maddy home soon. Hopefully, the U-Haul will be available when it is time to pack up Maddy's room!

Thanks again for the continued thoughts and prayers!

Day # 25

Total White Blood Cell Count = 400

We hope to be home for Easter!!!!

Day #24

Total White Blood Cell Count= 300

Maddy's counts seem to be moving in the right direction finally. We hope this means we will be home soon. Maddy is still not feeling the best- tummy ache, headache, high blood pressure, runny nose and cough. Hopefully, everything will start to get better soon. Maddy so wants to be home!

Day #23

Total White Blood Cell Count = 200  (Yea! -  3 days in a row)

Maddy tested positive for a bacterial infection of the gut-  C. Diff.  They now think this may be what is causing her vomiting, diarrhea, fevers, lack of appetite, etc.  They are treating her specifically for this now.  If her fever stays away, then they won't have to continue looking for other causes.  Her CAT scan looked clear.  We are hoping she is on the mend.  She now has a cough and runny nose that is annoying though.

Maddy had to have another red blood cell transfusion today.  The doctors say these are the last cells to come back.  Her platelets though are hanging in there, so they think she is starting to produce these on her own now and hopefully, her white blood cells are coming along since we have gone three days at 200.

This week was "Maddy Week" at the elementary school.  The students had the opportunity to play games in the gym during noon recess for a donation to the ABC 4 Maddy Relay for Life Team.  It was good seeing all the lime green t-shirts and all the kids having fun all week.  It was also wonderful seeing all the volunteers who showed up to help make this event successful.  Again, we feel truly blessed!  Mrs. Buehrer gave me a DVD that they made of the event to show Maddy.  We watched it tonight and Maddy enjoyed every minute of it.  Thanks to everyone!

    

Day #22

Total White Blood Cell Count = 200  (Two days in a row!)

Maddy's day:

Headache
Fever
Daily Shot
Puking
CAT Scan (to look for fungal infections)
Cough and Runny Nose
Being Ornery with Mom



Maddy did enjoy the heart from Mrs. Shield's second graders and the notes, paintings, and goodies from Mrs. Boulton's third graders.  She read all the notes and we hung the heart and paintings in her room.  Thanks for all the kind words!

Day #21

Total White Blood Cell Count = 200  : )

Maddy continues to have fevers during the night.  Right now, the doctors still have her on two different types of broad range antibiotics.  Maddy's spirits were a little down today along with her Dad's.  Now the doctors are saying it could take 29-35 days from her first treatment on March 17th for her counts to recover (up from the 20-29 days they told us originally).  That puts us at the hospital until some time next week.  I hope today is the start of the upward trend.

Day #20

Total White Blood Cell Count= 100

Maddy spiked another fever last night, so she is getting a second antibiotic now. Hopefully, this will take care of what ever is causing her fevers. If not, she is going to have to have further tests done. Maddy's platelets also dropped, so she had to have a platelet transfusion today. She actually had to wait while someone donated platelets this morning before she could get the transfusion! This reminded us of how thankful we are to everyone who donates blood products. Maddy has benefited many times from your generosity.

It is beginning to feel like Maddy is never going to get out of the hospital. I think we are going to need a moving truck once we do get to leave. It seems like we keep bringing a little more stuff each day. Once Maddy does get home and her counts get to a certain level, she will have to turn around and start the next induction phase which will land her back in the hospital again. During this last induction phase which will last about a month, we have to decide which treatment option to take from that point on- continued chemo or a bone marrow transplant. As I said before, Maddy is in a gray area. We have talked to the bone marrow transplant team and to Maddy's current doctors and we have been told that the decision is up to us. Russ and I are struggling right now and could use all the prayers we can get. We are asking for the strength and wisdom to make this decision.

Day #19

We found a great BBQ place near the hospital today- Tom's BBQ and Grill...

Maddy had not been feeling the best over the weekend and has not been eating much.  She then spiked a fever in the middle of the night last night.  As a result, she had to be hooked backed up to her IV fluids and started getting IV antibiotics.  The nurse also tried to draw blood to start cultures (the protocol when Maddy gets a fever).  However, her catheter was clogged and the nurse could not draw the blood, so they had to inject a drug into Maddy's catheter to break up the clog.  After about two hours this morning, the clog finally broke up and the nurse was able to draw blood.  Her bloodwork showed that those darn white blood cells were still hanging out at 100 and her red blood cells had also dropped, so Maddy needed another transfusion.  Because she had an allergic reaction to blood products, they had to pre-medicate her with Benadryl and Tylenol before giving her the transfusion.  Then she had her transfusion.  Because her blood pressure seems to go up every time she receives blood products, she had to have lasix after the transfusion.  The lasix combined with the IV fluids caused her to have to go to the bathroom every 10 minutes.  On one of her many trips to the bathroom, she rammed the base of the IV pole into her heel  tearing off a chunk of skin-  not good to have open wounds with no immune system!   By the time Julia and I arrived at the hospital, Maddy and Dad were whipped.  We then talked to the doctor who is concerned that Maddy is not eating enough and getting enough nutrients (which we all know is not like Maddy).  She said she needed to start eating more or she would have to start giving her nutrients through her IV.  To try to prevent this, we started listing every food we could think of that might appeal to Maddy for supper tonight.  She picked BBQ ribs, so Russ and I ventured out to find the BBQ place that a friend had told us about- Tom's BBQ and Grill right across the river.

We highly recommend the ribs at Tom's!  

Day #18- The Great Escape

Once upon a time, there was a family named the Lamberts.  There was Mom and Dad and two girls, Julia and Maddy, who loved each other very much.  Unfortunately, Maddy had been put under a spell by the evil villain ALL and his sidekick, Chemo, and the whole family was being held against their will in a tall brick tower far from home.  They had been held captive for what felt like 18 years.  The only way to break the spell and get out was for Maddy to find the 500 White Fairies who were being held deep inside tunnels of the tower.  Once found, they would be able to help set Maddy and her family free.  Maddy searched for them day and night.  When she found them, she would try to keep them altogether in her room, but they somehow kept escaping.  She had found 300 of them at one time, but lost 100 of them and then another 100 escaped.  She was back to only having captured 100 of the White Fairies.  The Lamberts were getting frustrated.  They just wanted to escape from the evil clutches of ALL and his sidekick Chemo and find their way home together.  So...  they devised a plan for a great escape without the help of the White Fairies.  Dad snuck out of the room where the Lamberts were being held and found a chair with wheels to help make for a quick get-away.  Mom prepared Maddy, who had grown weary from searching for the White Fairies.  Julia stood watch for the Nurses, the villain's slaves who were forced to do his bidding.  As soon as they heard the signal from Dad, they would make their move.  Finally, they heard the secret knock at the door.  With no time to spare, they dashed out of their room.  Dad was waiting with the chair for Maddy.  The Lamberts then ran as fast as they could through the tunnels of the tower.  Then, much to their delight, they saw a bright light at the end of one of the tunnels.  They began to run faster and faster until they came to the end of the tunnel where they were faced with a huge wall of rotating glass.  The Lamberts knew that their only chance to escape was to squeeze through the panels of glass, so they all held hands, closed their eyes, and made a leap of faith...  when they opened their eyes, they realized that they had done it!  They were free, but they had no time to celebrate.  They still had to make it home.  They saw the miles and miles ahead of them and began to make a run for it.  Meanwhile, one of the Nurses noticed that the Lamberts were gone and notified the guards.  Unfortunately, the guards caught up with the Lamberts and surrounded them.  They put up a good fight, but there were just too many guards, and the Lamberts were taken back to the tower to live out their days!

It has been said that if you go past the tower of the evil villain ALL and his sidekick Chemo late at night, you can still see Maddy searching for the 500 White Fairies in hopes of setting her family free!

The End

Day #17

Total White Blood Cell Count= 100

No convincing the doctor to let us come home!

Day #16

Total White Blood Cell Count = 200

The roller coaster continues! The good thing though is that Maddy is feeling well. She was able to do some school work and watch some movies today. She was even able to Skype this afternoon with her class using the iPad.

It is getting very exhausting though trying to keep up with everything! We appreciate all the help and support we have received from our family and friends. The meals, gas cards, gifts, and encouraging words are very much appreciated as well! We know we have said this before, but we feel truly blessed each and every day.

Day #15

Total White Blood Cell Count = 100

Red Blood Cell and Platelet transfusion needed

BOO!!!!!!!

Day #14

Total White Blood Cell Count = 300

YEA!

Day #13

Still waiting...with a smile today. Total White Blood Cell Count= 200

On a positive note, the doctors allowed Maddy to get disconnected from the IVs today. All the medication that she is currently getting is in pill form. This makes getting around a little easier. Maddy was also able to Skype for a short time today. She was glad to see all of her classmates. Dad is now the meanie making her do school work!

Spring Break Extended (Day # 12)

Still waiting...  Total White Blood Cell Count = 200

To get specific,  Maddy's total white blood cell count has been going back and forth between 100 and 200 since her last chemo treatment.  Neutrophils are a type of white blood cell that make up 50%-70% of your total white blood cells and they are the infection fighters.  In order for the doctors to even consider letting Maddy come home, her neutrophil count has to be atleast 200 alone.  They don't even start counting the neutrophils until the total number of white blood cells in the body reaches a minimum of 500.  Today the doctor told Russ that this typically happens 20-29 days after the initial chemo treatment Maddy had 19 days ago, so  she could come home tomorrow or 10 days from now...

Spring Break (Day#11)

Today was another good day for Maddy.  No aches or pains.  Unfortunately, this makes it even harder on Maddy being in the hospital.  She so wants to come home!  Russ and I did the changing of the guard this evening.   Even though it is nice to be home, it just doesn't feel right without all of us here.  Of course it didn't help that Maddy was crying when I left the hospital with Julia.

We could use a few extra prayers for Maddy's white blood cell count to come up quickly so we can all be together again at home soon!!!

Spring Break (Day #10)

Today was mostly uneventful which was a nice change. No transfusions, no hives, no painful eyes... just waiting for the white blood cells to recover so we can come home!

There is definitely truth to the saying, "There's no place like home!"

Spring Break (Day #9)

Today started out as another good day. Maddy's eyes continued to feel better today. (The eye doctor did finally stop by this evening and checked out her eyes. He said that they just needed time to heal from the affects of the chemo.) Maddy was also up and active today. She was determined to learn how to French Braid her doll's hair this morning. We watched some videos on You Tube, and Pam (one of the oncology nurses) showed her how to do it. She practiced all morning. Then we had Subway for lunch thanks to Miss Heckel and Mrs. Buehrer. (Maddy is definitely getting tired of the hospital food.) In the afternoon, Maddy played on her iPad and did some school work (meanie Mom). Then Dad and Julia showed up to visit.

The day didn't end as well though. Maddy's hemoglobin and platelet counts dropped significantly overnight, so she had to get a red blood cell and platelet transfusion today. They started with the red blood cells. After this transfusion, her blood pressure shot up, so they had to give her blood pressure medicine and lasix. Then they gave her the platelets and just as the transfusion was completed, Maddy mentioned her head was itchy. We looked and she had hives starting to appear. This is the first time she has had an allergic reaction to a transfusion before. So... They had to give her Benadryl and monitor her breathing. Needless to say, the Benadryl knocked her out. She is now sleeping peacefully.

Never a dull moment!

P.S.- Maddy received a card from a friend of a friend today. In the card, the friend mentioned a song that she said reminded her of Maddy. We listened to it and we agree. It was a good day to hear this song and remind us that we are not alone- that God is watching over us. We thought we would share:

http://www.dailymotion.com/video/xgojag_mandisa-stronger-slideshow-with-lyrics_music

Spring Break (Day #8)

God is good ALL the time, ALL the time God is good!
Today was a GOOD day...

Maddy was finally able to open her eyes today and keep them open without pain. They are still watering, but we can handle that. An eye doctor is going to come tomorrow just to check her out, but hopefully she is on the road to recovery.

Maddy was due for a dressing change so she took a nice long shower today. (A reminder that we often take the little things in life for granted until they are taken away.)

Maddy's blood pressure has been holding steady so they have decided to back off of the medication to see how she does on her own.


Dad and Julia, armed with hand sanitizer and masks, came to visit this evening. It was so good to see Maddy and Julia together. They were huddled around the iPad playing games together. (Thanks to everyone who made this possible!)



Thanks to everyone for continued thoughts and prayers! They truly do help us get through each day.

P.S.- Maddy wanted me to let Mrs. Hurst know that Dad did share the cookies. Also, she wanted to let Megan know that the monkey has slept with her every night since we got to the hospital.

Spring Break (Day #7)

Besides her eyes still hurting, Maddy had a fairly good day. She actually woke up and was hungry. Of course she wanted her left-over Spicy Italian sub for breakfast! Our old Maddy coming through... She also ate a little lunch and supper- the first time she has eaten all three meals since we got here.

She continues to worry about her shot every day. She pointed out today that the doctors lied to her about it being a "small" shot that would't hurt. She also noticed that her white blood cell count has not gone up at all yet, so she has concluded that the shots aren't working. The doctor tried to explain the process to her, but she later told me she didn't listen to him! :)

We are hoping each day continues to get a little better for Maddy. Now if she could just keep her eyes open for more than a minute without watering and pain. That's the goal for tomorrow.

Spring Break (Day #6)

We are definitely going to need a vacation after this "vacation". We are getting very tired! Maddy is counting the days. She asked me what day it was this morning. I told her it was Tuesday (after double checking). A while later, she informed me that if she had to be in the hospital for 10 days, she only had 4 days left. She told me, "I figured it out!". I guess her second grade education is paying off!

Maddy's eyes are still bothering her. She was up all night with pain. The doctors still think it is a side affect of the chemo. We are continuing with eye drops. Maddy layed around all day with her eyes closed again. It makes trips to the bathroom very interesting- IV pole, tubes, and "no eyes"!


Still looking for the pool...

Spring Break (Day #5)

Today had it's ups and downs! I think I will start with the ups:

With the help of the blood pressure medicine, Maddy's blood pressure came down. She had a good night of sleep. She woke up and had her ultra-sound of her kidneys. (I didn't realize how nervous I was until I was in the room with her watching the screen as the technician did the test. I instantly got sick to my stomach just thinking about the idea that there could be something wrong with Maddy's kidneys). Fortunately, we did not have to wait long to find out that her kidneys are functioning properly. They are attributing her high blood pressure to the variety of other "stuff" going on with her and they feel that it will eventually correct itself. Until then, they will control it with medication.

Another up- My friends Deb and Cindy rescued me for a couple of hours and took me to lunch. It was good to get out of the hospital for a little while. Thanks Deb and Cindy! I did have strict instructions from Maddy to come back though. Her dad took a little offense to this... : )

The sun was also shining today. It just makes me feel better to have the sun out even if it is still cold.

Now for the downs:

Maddy woke up saying her eyes hurt when she tried to open them. As a result, Maddy basically kept her eyes closed ALL day- most of the time sleeping with her blankets pulled up over her head. Every once in awhile, she would wake up and scream that her eyes hurt and we would put a wet wash cloth over them. We haven't figured out what is going on. If it is not better tomorrow, I will be a little more persistent to figure it out.

Maddy also got her daily shot and again was not happy about it. She worried all morning until she got the shot and then worried all day about getting another one tomorrow! (They did use a much smaller needle today though, but Maddy still said it hurt.)

Julia has a cold so can't come visit her sister. I think they miss each other. I will remind them of how much they really do love each other the next time they start fighting! : )


That's about it for today. Maddy just woke up screaming for the washcloth for her eyes...

Spring Break (Day #4)

Today was a better day. The worst part for Maddy was "the shot". The needle the nurse used was quite a bit larger than what the doctor had told us it would be. Mom made sure that the next time, the right needle would be used. Hopefully, this will help. Other than that, Maddy is just tired. Her blood pressure has been running really high so they are trying to figure out what is causing this. They have reduced the IV fluids they are giving her, running some tests, giving her two different blood pressure medicines, and they are going to do an ultrasound of her kidneys tomorrow. They want to make sure her kidneys are functioning properly- kidney issues can cause high blood pressure.

We'll see what tomorrow will bring...

Spring Break (Day #3)

What a day... Russ started getting a scratchy throat last night, so he left the hospital last night to get away from Maddy.  He made a doctor's appointment today to make sure he didn't have strep or something.  (He doesn't have strep, but probably has a little virus which still isn't good when your child has no immune system.)

Maddy finished up her last dose of chemo early in the morning.  She woke up with a belly ache and was worrying about the shot she was going to have to have.  After all the worrying-  a little numbing cream, a little ice, and a very loud scream later and it was done.  Maddy was brave as usual.   We just wish she didn't have so much to worry about.  It is so hard not knowing what to say to her or how to make her feel better.  As parents, we feel so helpless!

Maddy felt a little better after her shot was over.  We were able to do some crafts and her mean mom made her do some math homework.  She then started to get tired, so she got snuggled in bed.  I put the call button by her so I could step out to get a drink from the lounge down the hall.  One minute later, when I got back to the room, Maddy was laying in bed covered in puke.  She just looked at me and said, "I couldn't get to the call button."  After a little chaos, the nurse cleaned up the bed while I cleaned up Maddy.  The only good thing about the whole ordeal was that Maddy got to take a nice warm shower since we were going to have to change her dressing anyway.  (We then bagged up her "chunky" clothes and blankets for Dad to take care of when he got to the hospital : )

The doctor then stopped in to see Maddy right after the puking episode.  She told us that Maddy's platelets were so low that she needed a platelet transfusion.  She then reminded us that she would need to stay in the hospital until her counts rebounded- about 14 days!  What happened to 10 days??????  The number keeps going up!

The rest of the day was a little better.  Maddy was finally able to take a nap.  Dad and Julia made it to the hospital and did a load of clothes and blankets.  Maddy woke up and played a little with her sister and ate a little supper.  Maddy then started to get a little anxious and uncomfortable, so the nurse gave her a little "happy juice" and she is now sleeping peacefully.

P.S.- I forgot to tell you the topper of the day. Our friends made us a pie. Russ brought it to the hospital for us to eat and put it in the refrigerator in the Family Lounge along with some of our pop and other food labeled with our name and room number. A couple of hours later, I went to get the pie to have it with supper and it was gone along with our pop! Someone took our pie! : ( No pie for us!!!! A perfect ending to a perfect day!


 

 

Spring Break (Day #2)

Maddy had a pretty good day today. She slept a lot of the morning. Her blood counts are so low that she does not have a lot of stamina. She received another blood transfusion this afternoon and it seemed to give her a little energy- she was able to do a little school work, read, and paint a picture frame from the playroom. The chemo is starting to affect her eyes (dark red circles around them)- she might need to borrow some of Mom's concealer! Maddy is getting a little stir crazy already. It's hard to not get bored being stuck in a 10x15 room. Her third chemo treatment is just about done. One more to go and then Maddy has to get a deep muscle shot followed by daily shots to beef up her white blood cells. Maddy is not looking forward to the shots- we may need some more of that "happy medicine". Then we just have to wait for her counts to recover so we can come home. We are praying for no fevers or infections during this time!

P.S. We didn't find the pool today, but we will keep looking!

Spring Break at St. V's (Day #1)

Maddy and Mom arrived at our Spring Break destination at 10 AM today.  After getting "checked in" to our room at the St. Vincent's Resort, we waited and waited for blood work to come back.  Maddy slept most of the day with only the occasional outburst.  Finally, around 5 PM, the nurse started her chemo treatment.  Maddy continued to sleep most of the time (must be the jet lag), but would wake up very unhappy and would let us know it.  Dad and Julia arrived in time to witness this.   At one point, we had two residents at our door peaking in to see if everything was okay.  They looked scared!!!  : )  With a little help from what we will call her "happy medicine",  Maddy is now resting peacefully and isn't quite so agitated.  We have one out of four treatments done!  Maddy's immune system is way low and getting lower.  As a result, we have a lovely 3 ft. tall Heppa Filter system in our room (we had to pay extra for that) to clean the air and a "Protective Isolation" sign on the door (St. V's version of "Do Not Disturb").

That's it for today.  We are not sure what we are going to do tomorrow-  maybe lay out by the pool!

She's Home

Maddy was able to come home this evening.  Her temperature stayed around 99 without Tylenol this afternoon.  Maddy's persuasion along with the promise that we would return to the hospital immediately if her temperature went up again was enough to convince the doctor to let her come home.  Hopefully she will be able to get some much needed rest to get ready for her next treatment on Thursday!

Thanks for all the prayers!

Sunday Update from St. Vincent's

Maddy came to the hospital on Thursday for a bone marrow aspirate and to start the second month of induction treatments.  She was supposed to have 4 chemo treatments twelve hours apart and then come home.  However, she spiked a fever on Friday night so the doctors ordered cultures and antibiotics.  Maddy has also slept almost continuously and not eaten since Thursday, which is not like her at all.  Maddy is ready to go home, but the doctor was just in and said her counts have already started to drop.  Maddy needs a blood transfusion and we are going to try to get her to drink some Ensure or Boost to get her energy up.  She also still has a fever.  Most likely, we will be spending another night at the hospital.  Unfortunately, she also  has to do this all again on Thursday...

The sun shining through the window this morning reminds us though that there are better days to come.

St. Baldrick Event

The St. Baldrick event today was a huge success thanks to the outpouring of support.  Thanks to everyone who donated or took part in this event!

Our family was able to spend some time at the event.  Russ got his head shaved and as we were getting ready to leave, Julia said she wanted to do it.  Of course, Mom wasn't so sure but she was determined.  Julia wanted to shave her head last year and didn't, so Mom gave in.  Julia grinned from ear to ear as they cut off her pony tails to donate.  She still has not stopped smiling.  Not only did she want to do this for her sister, but she is pretty excited that she can now sleep in longer in the morning!  : )

Our hope is that one day we won't need events like this because a cure for childhood cancer will be found!

University of Michigan Visit

Today we had our appointment at the University of Michigan to meet the Bone Marrow Transplant doctor and discuss this treatment option compared to continued chemotherapy treatments for Maddy.  I can not even begin to describe what Russ and I are feeling right now-  the thought of having to make this decision is almost too much to bear.  PRAYING, PRAYING, PRAYING!!!!


On a more positive note, below are links to the Buckeye and Crescent News articles and pictures from the assembly at the high school on Wednesday.  Enjoy!

http://www.archboldbuckeye.com/news/2011-03-09/Front_Page/AHS_BOYS_BASKETBALL_PLAYERS_GET_THEIR_HAIR_SHAVED.html

http://www.crescent-news.com/news/article/4996681

The Power of Faith, Love, and Hope

We said we would get back to you with who had to buzz their hair at the High School... well, the pictures say it all!

In just three days, the high school raised close to $6000.00 in honor of Maddy. No one was safe from the clippers! Half of the money raised will be going to St. Baldrick's to help fund children's cancer research. The other half will be donated to other cancer organizations and charities of our choice.

It is hard to put into words how truly thankful our family is to be a part of the Archbold school district and community. While we have been through many trials this past 16 months, we have found ourselves continuously saying how lucky we are- lucky to be surrounded by such caring, generous people, lucky that any help we need is always just around the corner, and lucky to have a community praying for us. The events over the last few days have renewed our faith and once again, we find ourselves saying how lucky we are!

Today was a perfect example of what cancer CANNOT do:

Cancer is so limited... It cannot cripple Love. It cannot shatter Hope. It cannot corrode Faith. It cannot destroy Peace. It cannot kill Friendship. It cannot suppress Memories. It cannot silence Courage. It cannot invade the Soul. It cannot steal Eternal Life. It cannot conquer the Spirit!

From the Bottom of Our Hearts We Thank You!!!

The Lamberts

Sunday Update

Maddy had a pretty good week. She was able to Skype most days with her class which was GREAT! The steroids are starting to really kick in. Maddy is hungry all the time and has lots of aches and pains. She is also tired. Getting up and "going to school" really wiped her out each day. Her treatment on Thursday was uneventful which we like. Her immune system has rebounded for the time being, so hopefully she can get "out" a little. She has another treatment this coming Thursday and then on Friday, we go to the University of Michigan to meet with the bone marrow transplant team (this was changed from Monday). We were told to expect a two hour meeting and we have to bring Maddy. We are just trying to mentally prepare for this meeting right now.

On a positive note, there is going to be a St. Baldrick's event in Archbold on March 14th. (http://www.stbaldricks.org/events/mypage/eventid/4276/eventyear/2011)

The ladies organizing the event are honoring Maddy. When the Archbold High School Boys' Basketball team heard about this, they decided they wanted to do something so they are going to have a pledge drive this Monday - Wednesday. On Wednesday, the team will be buzzing their heads. Depending on how much they raise, there may be a couple of other people who have to do the same. We'll let you know... : )

Bald Is Back!

Maddy had her weekly treatment today. We were at the hospital for 7 hours. All went well though except Maddy's hair started falling out in clumps today, so on the way home, we stopped and got another hair cut. We went short last weekend, but it was not short enough to prevent hair from getting everywhere. Thanks to the ladies at Salon Bliss for helping us out through this transition. As you can see in the pictures, it is amazing how things can change in a few short weeks.

We also found out today that Julia is not a transplant match for Maddy. This means we will have some major decisions to make over the next couple of months. For certain types of relapses, there is a lot of data on what treatment option (transplant vs. chemo) has the best overall outcome. However, for Maddy's type of relapse, (Isolated Central Nervous System within the first 15 months), there is no clear cut answers when there is not a sibling ("related") match. We have an appointment in March at the University of Michigan to talk to the transplant doctors and review all of our options since we would be looking at finding an "unrelated" donor if we go the transplant route. I am sure we will then do a lot of talking with Maddy's doctors and try to figure out what our next step will be once we get through these first three months.

Relay For Life

Russ and I had decided that we wanted to start a school Relay for Life team this year. We had just sent out an email to see who was interested in joining us when Maddy relapsed. Luckily for us, we are surrounded by caring and supportive co-workers. Mrs. Deb Buehrer, Miss Cindy Heckel, and Miss Jen Hurst all stepped up and said they would lead the team. The team members also continued to grow. The team has some exciting fundraising ideas and are getting everything in place including registering the team. In honor of Maddy, the team is called "ABC 4 Maddy" (Archbold Bluestreaks Care for Maddy). You can go to the following web site to look up our team, see our members, check our progress, or make a donation to our team:

http://main.acsevents.org/site/TR?fr_id=31518&pg=entry

We're Home!

It was a very long day, but we finally got home around 7:30 PM. Maddy's surgery to remove her old port and replace it with a Broviac catheter went well. Maddy is quite sore, but hopefully will bounce back quickly before her next chemo treatment on Thursday. With this new catheter, Maddy will not have to get anymore needle pokes, but it is a lot more maintenance since it is partially external. Russ and I will get our lesson on how to do dressing changes and take care of the catheter to prevent infection when we go back to the hospital on Thursday.

It has been a long week and it is only Monday! We are glad to be home and hope to get a good night's sleep without the beeping of IV machines...

Thanks to everyone for continuous prayers!