Big Family Moments

It has been too long since my last post.  I have wanted to post, but time doesn't allow for it with all the new changes that have entered our life.  But, for now, I have a moment and want to share what we have been up to in the last 4 months.

First, Maggie had her last clinic appointment to see Dr. French almost 2 weeks ago.  Andy and she made the trek down to Dayton together.  Her blood counts looked great (Andy didn't ask for the numbers and they didn't give them so even though it was very hard for me not to know the numbers, I am moving forward knowing she is good).  Maggie told me she talked to Dr. French for the first time.  She is really opening up to others and while her talking was probably a few words, it was an improvement.  Maggie is now 2 1/2 years off treatment- another little milestone.

A big moment in our family's life was the introduction of Grant Sebastian on August 13.  He weighed in at 9 lbs. 6 1/2 ounces.  Another big baby for us!  I was worried about how Colin would welcome him and handle the change, but he has shown us that he is very flexible and ready to be a big brother.  Maggie has been wonderful.  She loves on Grant and wants to hold him all the time.  She is a big help, getting diapers, burp cloths, giving him baths, and calming his fussiness.  Even Colin has joined in the help of trying to change his diaper, not necessarily something I'm ready for, but he is trying to be helpful.  Grant has been a very good baby, sleeping much of the day, and getting up every 2-3 hours during the night.  He seems to be pretty laid back, which is a good quality considering the crazy family he has been born into.  He is able to sleep through the screaming and yelling of children playing (for the most part).  Not to say though that Andy and I aren't really tired and back to the old sleep deprivation that we remember so well with the other two children.

We have struggled for the last almost 4 weeks of illness, which has been very frustrating.  Colin started with the stomach bug for 5 days, gave it to Andy and Maggie, and now we are dealing with colds in our family.  So much so, that we had to take Colin to the ER this morning due to retraction in his ribs, fast breathing, and grunting.  Thankfully he doesn't have pneumonia, but it's just one more thing.  Everyone is sick except for Grant, and I pray it stays that way.  We can't afford to have Grant sick.  So, I am very ready to have some normalcy in life- life that doesn't consist of illness.

Another big moment in our life was Maggie's first day of preschool!  She is going twice a week in the afternoons and was to begin on September 11, however, do to the stomach bug, she missed her first week.  Andy and I were so disappointed, but Maggie didn't seem to mind too much.  She started this Tuesday and loves it!  I was very worried there would be tears, but she left my side and didn't even turn back.  She has really matured in the last year and we are so proud of her.  Four years ago, we weren't sure she would ever see this moment, but here she is and we have met another HUGE milestone!

Maggie's first day of school- 9/18/12

Grant- 5 weeks old

Colin being Colin- 9/16/12

Mickeyland!

I apologize that it has taken me so long to share our Special Wish trip with you.  We have been so busy with moving and unpacking, as well as life.  Below are some stories, pictures, and memories from the most amazing trip anyone could ever take.  We are so appreciative of the organization A Special Wish for providing us with so many wonderful memories.

Our trip started out a bit rocky, as we were rushing to get our house packed up (we were closing on our house a couple of days after our trip) and the kids had been sick with colds.  Maggie had a temperature the day before our flight was to leave, which caused me some worry and stress.  However, amazingly so, she showed no sign of temperature the next day or throughout the trip.

We were picked up by limo very early in the morning.  We woke 

the kids (Maggie had told Andy she wanted to be tickled awake)

and rode the limo to the airport.  From the moment we entered the limo, 

Maggie never stopped talking.  She loved every minute of it. 

 The kids first airplane trip.  They both did very well (Colin slept

much of the trip).

 We stayed at the resort Give Kids the World.  It was an amazing place, basically a big playground.  They had a carousel, swimming pool, playground, arcade, all you can eat ice cream and buffet, pizza sent to your villa, putt-putt golf, and so much more.  Unfortunately, we didn't get to enjoy all the amenities because we also received passes to Disney, Universal Studios, and Sea World, and we spent as much time as possible at each park.

We spent a day and a half at the Magic Kingdom.  One of the perks of staying at Give Kids the World was that we didn't have to wait in lines.  It was so nice to go right to the front and hop on the rides.  The first ride we went on was Snow White and this did not go well.  Both kids were crying due to some scary parts (who would think it would be scary?)  After the first ride, we were still unsuccessful with the Winnie the Pooh ride.  We were not redeemed until "It's a Small World."  Both kids loved riding in the boat and watching the children sing.

One of the kid's most favorite things was riding the carousel.  There was a carousel at the resort and after breakfast, we always had to take a couple of rides.  Each park had some type of carousel and Colin always pointed it out and wanted to ride.

We met Dora at Universal Studios.  A rare family picture that turned out okay.

Universal Studios had a play land that the kids loved.  A pit full of balls?  What could

be better?  Maggie also rode her first roller coaster ever.  When she got off, she was

all smiles, but opted not to ride again.  She said it was, "too fast!"

We found Thing 1 and Thing 2 at Universal as well (with Thing 3 on the way).

Maggie enjoyed riding the Dr. Seuss rides.

And yet again, the carousel.

One morning for breakfast, Maggie chose to go looking like this.  It

was a bit funny that a very shy girl who doesn't like attention wanted

to go into public this way.  She gained many stares, smiles, and inquiries.

We thought it was pretty funny.

We visited Epcot.  This was one of our shorter days as Maggie fell asleep around 6-ish and didn't

wake up until the next morning.  We ran these kids (or they ran us) until we were exhausted.

I joked that we needed a vacation from this vacation because we were on the go the

entire week.

We went to Sea World and while the shows were enjoyable for Andy and I, the kids

(or rather Maggie), much preferred the rides.  Who would have thought that the 

little girl who got car sick on the hills of Holmes county would enjoy the twisty,

up and down, and around in circles rides.

Maggie's favorite princess is Snow White, and she is the only princess that

we got a picture with.  Maggie was, of course, super shy and wouldn't

talk, but after the fact, she loved the visit.  

Maggie and Colin both did not do very well meeting the characters.  

She wanted to meet them, but as soon

as we were up close, they both got very shy and scared.

The day we left the resort, they had horse rides.  I thought the kids would be too scared to ride them, but they both loved it.  Maggie was all smiles.  What a wonderful opportunity!

Thank you A Special Wish for a wonderful experience!

And now we have a cowboy and cowgirl.

I think these two final pictures summarize our experience perfectly.  We had an amazing time and we're so happy we were able to go on this trip with our princess!

More Changes

We continue to have busy lives trying to transition from Dayton to eastern Ohio.  While, I haven't gone through the pictures of our Disney trip yet (which was the trip of a lifetime), I will be sharing those pictures and stories very soon.  When we arrived back to Dayton from Disney, we had one day to finish packing up our house.  We signed papers and as of March 15, we no longer have a house in Dayton.  We spent 7 1/2 years in Dayton.  Dayton has many good memories for us, as well as some not so special memories.  We bought our first house, had our two children, received a Master's and Doctorate degree, and watched our daughter fight and beat a horrible disease.  Dayton will forever hold a special place in our heart.  

During all of the packing, moving, and selling of the house, we had Maggie's clinic appointment.  This appointment brought a lot of anxiety for me as this marked her 2 years off treatment (as of February 24).  This is a big mile marker.  It seems like a week or two before we have our clinic appointment, I always start seeing things on Maggie's body that would not normally make me so worried, but given the timing, my mind starts working in bad ways.  However, we had a great appointment.  Maggie actually said a few words to Dr. French (outside his presence, she is very fond of him).  Her numbers looked great and we haven't heard anything about her EKG or echo, so that must have gone fine too.  We have now moved to seeing Dr. French every 3 months (we'll see how I handle the gap).  We are very happy with Maggie's progress.

Within a week of selling our house, we found a house in Medina and as long as all goes well, we'll be moving in the end of April.  We will be very happy to be settled in our own house again.  We have been very grateful to have my grandparents house while they are in Florida, but the kids (and I) will be happy to have our own things again.  And hopefully we'll see Andy more as he will be closer to some of his sites that he counsels.  

And finally, we had an unexpected surprise given to us around Christmas time and are happy to announce that we will be adding to the family in August.  Maggie has said she wants a girl baby because we already have a boy, and if we do have a boy, she will give it to someone else to enjoy.  We'll see how that all works out.  

Thank you for continuing to follow along with us.  Our life is continually changing (all wonderful changes) and we look forward to seeing what comes next!  

Big Events Ahead

We have had a very busy month and the busy-ness will be continuing the next few weeks.  We have been busy the last two weeks packing up our house because it is being sold!  Very soon, the stress of having a house in Dayton will be gone and we will only be dealing with the stress of finding a new house.  We are very thankful to be so close to finally selling our house, especially given the climate of the market.

We are also preparing to take our Special Wish trip next week.  We will be going to Disney World (or Mickeyland, according to Maggie).  It will be so nice to take a vacation as a family, as we haven't done so in several years.  We have heard that the accommodations for Special Wish are so nice.  We will be sure to post pictures and share stories from our trip when we return.

Another big event we just experienced was Maggie's 2 years off chemotherapy.  Dr. French has told us that getting to 2 years is a great accomplishment and the odds of relapse drop.  We have Maggie's appointment on March 12, so once that appointment is successful and done, I will feel a great sense of relief.  Maggie will have a more comprehensive appointment that day with an EKG, echo, and more blood tests looking at her liver.  I look forward to that day being behind us.

Though our posts are not as often as they once were, we do appreciate you following along with us still.  Thank you for your continued thoughts and prayers.

Photo taken 12/6/11

Photo taken 1/22

Making a snow angel

Our family Christmas tree picture

Updates

Life seems to keep us so very busy.  Lately, the busy-ness consists of managing sickness, something we have not been familiar with for a very long time.  Maggie went almost 2 years without getting a cold, but alas, we have been bitten by the cold bug several times over.  Both kids got colds Christmas Eve, and we have been fighting them ever since.  We have had a viral rash and Colin got the stomach bug along with diarrhea from an antibiotic (which caused some dehydration).  It seems like it just keeps on going...

I took Colin to a hematologist at Akron Children's a couple of weeks ago.  The test they do to determine if there is a bleeding disorder (specifically Von Willebrand disease) isn't normally given until a child is over 18 months old.  It's a test that needs to be done with the least amount of stress possible because stress on the child can alter the results.  This is a bit challenging because it's a blood test, requiring 20 mls of blood.  I don't know any children who don't cry giving blood.  It's also a test that you have to run several times because it can show false positives.  So, rather than do this test (we are to come back in 3-6 months), the doctor decided to do another CBC (to rule out leukemia AGAIN),  an epstein barr virus (mono), and an immune system test.  These tests were done because Colin had a cold/cough after 10 days and he has eczema.  I felt that we were asking for more possible "problems" by adding new blood tests.  Not only that, but I had to sit for another hour with the stress of getting another CBC and looking for leukemia.  Another hour of torture.

The tests can back with a normal CBC (no leukemia, again), normal Epstein Barr Virus, however Colin's IGG level (immunoglobulin, or antibodies which fight infection) was a little below normal.  The doctor decided to not do anything for now and have him tested in another 6 months to a year.  So, for now, we will sit and wait to have further testing until Colin is a bit older.

We went to Dayton last Monday for Maggie's clinic appointment to see Dr. French.  Her numbers all looked great, better than we've ever seen them (even given that fact that she was fighting a cold).  In two months, she will have routine tests to evaluate her heart and liver.  They will do an echo and EKG along with more extensive blood tests.  Chemotherapy can hurt these organs so they like to keep watch on them.

As we were at the appointment, I found out that Dr. French is the bleeding disorder expert in the southwest area.  How great is that?  I was able to ask Dr. French all my questions and discuss with him about the process we have gone through with Colin thus far.  It was so great talking with him.  He was able to ease my mind (after working with him for over 3 years, he has a good idea how we handle stressful situations).  Because of our previous relationship with Dr. French, we decided we will have Colin's hematology concerns transferred to Dr. French.  Though the travel is further, we feel more comfortable using Dr. French as his doctor.  Dr. French stated however, that if Colin doesn't show any further signs of a bleeding disorder, he would probably not test him for Von Willebrand's disease.  This was encouraging to me and hopefully we'll not need to look into this further.

So, that, in a nutshell is how our hem/onc issues are going.  I left Dr. French's office feeling much better and hopefully that will continue.  Now all we have to do is get rid of the "normal" viruses that are floating around our family.  I guess we always said we wanted a "normal" life and now we are getting a taste of the "normal" illnesses that most families deal with.

Thank you for your continued prayers for our family.  We greatly appreciate them as this journey veers off the road every now and again.

Photo taken 10/16/11 by Luke Lehman

Colin

Just a little update on Colin.  We took him to the pediatrician to follow up from our ER visit and the pediatrician ordered more blood tests to determine what might be causing petechiae.  It took 3 different visits and 8 pokes before the tests finally worked.  His blood kept clotting before they could get it in the test tube (which is kind of ironic because that is essentially what is wrong with him).  Finally, on Friday the test came back that his platelets (the clotting cells in your blood) are not functioning correctly.  Therefore, we have been referred to a hematologist for more testing to determine what exactly is wrong and how we will treat it.

It was a difficult 3 days of testing to get to where we are, and we will be doing more of it.  Please pray for Colin (and us) as we go through these tests and pray that it is something easily treatable.

We hope you all had a Merry Christmas and have a Happy New Year!

Deja Vu

It has been awhile since my last post and I apologize for that.  We have been in transition this past month and we are still trying to find our way.  Andy started his new job in northeast Ohio at the beginning of November and we followed him up.  My very generous maternal grandparents have opened up their home to us while they are living in Florida for the winter, so we are splitting our time between there and our house.

Last night, we experienced a moment in our lives that we hoped to never have to repeat.  For the last two months, Colin has had petechiae-like spots on the trunk of his body (petechiae are broken capillaries under the skin that look like mild pin pricks or purple or red spots.  They are commonly caused by a low platelet count, something that is often associated with leukemia).  We showed them to his pediatrician at his 12 month visit and she offered to do a CBC.  We didn't think it was a big problem at that point in time, so we declined.

During the past week, we had noticed an increased amount of spotting on his trunk.  I think any other parent might have taken it for a rash, but given our history, we recognized it as something possibly more concerning.  Andy had a peace about the situation, however, I could not get over the possibility that we might be going down the same road that we had taken with Maggie 3 1/2 years ago.  Andy insisted that we get the spots looked at in Akron at the Children's Hospital--to ease our minds and hopefully rule out leukemia.

So, last night we took Colin to the ER to get him checked out.  The hospital nurses and doctors confirmed our suspicions; the spots were petechiae and we were immediately rushed to a room to be examined.  The doctors wanted to do blood work to determine the cause.  All of a sudden, leukemia was back on the table as a possibility for our "healthy" child.  A whole rush of feelings came back to us as they prepped him for an IV and struggled to find a vein as he fought (just like Maggie).  After about 30 minutes, they were able to get their blood samples and we were told to wait an hour for the results.  During that hour, we tried to comfort Colin who was upset by the situation and we prayed desperately that our fears would be taken away.

Ultimately, the doctor came in saying "Do you want to hear the good news or the good news?"  Can I just say that a wave of relief washed over me with that question.  Colin's blood counts all looked great.  His white count was normal, which we were very relieved to hear.  His platelets were normal, so now we may have to explore further why he is getting petechiae.  But, it is not leukemia.  We later heard from our nurse that after they had drawn Colin's blood (and before the results were in) they were all praying for us.  They were concerned about Colin's presentation, as well as sympathetic to our history and emotions.

It's difficult being a parent of a child who had cancer.  We are forever traumatized by Maggie's initial diagnosis, treatment, and recovery from complications of her treatment.  I have found it very difficult to forget and the past week (and especially yesterday) we relived many of those emotions that we hoped to never have again.  I find it to be a curse to live with these memories and emotions.  When talking with our oncology nurse about Colin this week, she told me that for Colin to have leukemia would mean we have really bad luck.  I started to question that luck as we waited in the hospital last night.  I began to picture all that we had done with Maggie during her treatment and thought there is no way we could do this ever again. I was so scared, and maybe more so because we're not naive to how hard it is.

With the good news from the doctor, came such relief and joy.  Our joy is back.  Our happiness knowing we have two healthy children is here and I pray that we never have to experience the questioning of that health ever again.  We can celebrate Christmas knowing that God has shown us His faithfulness, once again. And we hope that you, too, have a healthy and blessed Christmas season.