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