The Plan

Andy gave me a "break" yesterday by taking Maggie to her monthly clinic visit.  You would think with each month, it would get easier, but it has not.  I still awaited anxiously for Maggie's counts and once I found out that "they looked great," I felt like a weight had been taken off of my shoulders.  This will most likely occur again next month, as there is no guarantee, but for this week we can feel relief.

Unfortunately for us, it doesn't take much to get our minds wandering/wondering.  A spot here, a bump there, a change of behavior...  It is a process that we are continually working through.  We will be doing so well and then we have a weak moment where fear creeps back in.  Will it ever get easier?

Dr. French came into the room yesterday with another plan.  Maggie had her last infusion of the anti-pneumonia drug, Pentamadine, yesterday.  She will continue through the month of April with IVIG's to help give her body time to continue healing from her critical illness.  They will give her a break in the month of May and then check her IGG level (immune system function) in June.  If her levels look good, they will take her port out in June.  Of course with her port coming out, she will also have a scope to check her stomach and a CT scan to check her lungs.  That's the plan for now, but we know it can always change, as it has so many times already.

Another remarkable number we received yesterday was Maggie's weight.  She weighed 31 lbs. 1 oz. last month and this month she weighs 32 lbs. 10 oz.-- a pound and a half in a month and 6 pounds since her critical illness began.  Throughout treatment we struggled so much with getting Maggie to eat and gain weight.  I'm so happy to say that she is such a good eater (though she does tend to wander around the room eating during the second half of the meal).  Her foot has also grown 4 sizes since February.  She is making up for all the lack of growing that she did during treatment.  She's a healthy little girl!

Like I said in the previous post, the end of this month marks 11 months off treatment.  Next month will be a milestone in the cancer world, including our own.  We hope to meet every milestone possible in this cancer journey.

Last week we had our first big snow storm.  Maggie got snow clothes for Christmas and had the chance to use them with Andy.  This was her first real snow experience--being able to walk in the snow (though challenging at first) and pull her new sled.  She had such fun that she didn't want to come in.

Merry Belated Christmas

Merry Belated Christmas! We hope you all had a very Merry Christmas and a Happy New Year. We had an abridged Christmas celebrating with some of our family members. While we are still very cautious with Maggie and her health, we really wanted to spend the holiday with family, since we decided to stay isolated for Thanksgiving. We spent five days with the family, trying to stay away from illness, and I'm happy to say that we all remained healthy. This is something I will always stress about given the horrific journey we experienced, but we are also aware that we can't keep Maggie isolated forever (as Dr. French has told us) and Maggie needs to socialize with other little children.

We continue with our "normal" life. We haven't taken this for granted, nor will we ever. Lately, Maggie has loved putting puzzles together. She has a 24 piece Dora puzzle that she puts together all by herself. Her other big interest for over a month now is Toy Story. She managed to collect Buzz and Woody for Christmas from Santa. We are currently in a transition with going to no naps. Maggie had been going to sleep at night between 11-12. Andy would lay with her in bed and he actually fell asleep before she did. For that reason, we decided maybe we would try no nap and with this new schedule, she goes to sleep within minutes at a bedtime like other kids her age, and Andy and I have some downtime in the evening. While this new schedule is not perfect (she has fallen asleep around 6 pm several times and I have lost my nap as well), it is something we are moving towards.

Maggie continues to love on her little brother, Colin. When she comes into the room, his eyes will brighten with a smile. There are times when she has a tendency to become jealous, telling me that he doesn't need to eat and is fine, but for the most part she dotes on him. Colin is a growing boy, almost 3 months old. He is wearing 6-9 month clothes, as he is such a big boy. He is a much easier baby than what Maggie was, which is a blessing now having two.

Though we are much slower in posting on the blog, we thank you all for continuing to follow along in our lives. Next week Maggie goes back in for her monthly clinic appointment. Please keep her in your prayers that she continues to be healthy. At the end of the month, she will have been off chemo for 11 months. We continue to pray daily that the cancer will never return.

Our annual Christmas tree picture with 4!

Colin's first Christmas

Maggie was clapping when she saw she had opened Buzz Lightyear.

She received some princess dress-up clothes and had to try them on.

Sporting her new slippers.

Monthly Clinic Visit

Maggie had her monthly clinic appointment yesterday morning. It ended up that one of the machines that runs her IGG level (immune system response) was broken, but we were not told that until after almost 2 hours of waiting for the number. Therefore, the appointment took much longer than necessary and we had to wait for a call back from the nurse to determine whether she would need an IVIG due to her number being too low. We got that call back this morning and Maggie does in fact need an IVIG as her number was 475. She needed to be above 500 to not be infused. This means that we must go back for Maggie to be accessed again (another poke on her port) on Friday for the 2+ hour infusion. This also means that Maggie's immune system has still not recovered. I am a bummed about both of these things. It has been almost 10 months since Maggie's last chemo treatment and they say that normally your immune system recovers within 6 months. This goes to show what a toll her body took with the chemotherapy, but more so the 3 month illness she endured. Dr. French was discussing taking Maggie's port out sooner than originally planned (perhaps in 2 months), but now with this knowledge that her immune system isn't healed, this may push things back again. We will see what he has to say.

As for the rest of Maggie's counts, Dr. French said they looked good. Though I was not especially happy to see an ANC of 1600 (normal is 1500 and above), they were not worried about it. We keep plugging away and Maggie continues to physically grow (she gained a half pound in a month to 31.1 lbs.) and blossom in her language and gross motor skills, though Andy and I both say she is quite a clumsy girl falling over quite a bit. She is very fun and funny and we laugh with her quite a bit. She is a typical 3 year old, climbing onto things, coming out of her bedroom with multiple excuses after being put to bed, leaving the table after eating half her meal and insisting I feed her while she walks around the house...

We had professional pictures taken of Maggie and Colin a couple weeks ago. I will try to post those soon. Thank you all for your continued prayers. Though our road is less rocky, we are still on the road to recovery.

These pictures were taken at Thanksgiving. Maggie is dancing in the first two. She loves to dance!

We were practicing our posing for when she was going to have professional pictures.

That is a phone next to Colin's head. Maggie had given Colin the phone to talk to someone.

Happy Thanksgiving

We have had a wonderful couple of weeks. Maggie has been doing great. She had her monthly clinic visit last week and her counts continue to be great. Dr. French lowered the threshold on her IGG levels (from 700 to 500) and for that reason, we did not have to have an infusion (this helps with immune functioning). They had only good things to say and for that we are thankful.

We also went for a pulmonary visit as well. Her doctor again had great things to say. They will continue with the plan to do a scope, CT scan, and take out her port all at the same time sometime in the spring. We asked about isolation, as we have stayed pretty isolated since coming home from the hospital in May and especially with the holidays coming up. The doctor felt it was still important to do so, saying the longer Maggie can go without a cold, the better she will be at fighting it. For that reason, we will be celebrating Thanksgiving as a family of four rather than with our extended family. This will be a first for us as we've always spent the holidays with our parents, siblings and extended family. Andy is quite excited to make our turkey and fixings, so we'll see how things turn out. While I am sad not to spend the holiday with our family, I have been reminded of how much we have to be thankful for, given that 9 months ago we weren't sure if we'd have Maggie to celebrate with. And now we have another little one, another wonderful blessing.

Have a Happy Thanksgiving!

Halloween

Never did I realize how hard it would be to do much of anything with two little ones. To survive, I find that I need to nap during nap time as our nights are so broken up and sleep is often hard to come by. For this reason, free time is limited and I apologize for a lack of update.

We are all doing very well. Maggie continues to be a good helper. The biggest challenge for us is working with discipline issues with a little girl who has a stubborn, independent personality. We have found that the fight that was within her to live is now an everyday thing. Though it is frustrating, we appreciate her spirit.

Below are pictures from our trick-or-treat night. Maggie walked some, but Andy would carry her to keep up with her friend Jay. She would not speak to anyone, but as soon as she got her candy, she would turn around and say, "Look Mom!" She was pretty happy to get the candy. We went up and down one street and then she was finished. All in all, we had a great night and were so happy to see her walking and having a good time.

Here we are coming back from a house after getting candy. It's too bad so many people had stairs. We are still working on walking up and down stairs.

Our happy little dinosaur walking.

Life Update

These photos of pumpkin carving were taken prior to Colin's birth, but I am only now getting them posted. Needless to say, it has been a busy 2 weeks.

Morgan and Parker came on Monday before Colin was born to help out. I was quite uncomfortable at the end of this pregnancy and having some labor signs. It eased my anxiety knowing that someone was here if we had to go in before our scheduled c-section on the 17th (which we did end up going early). Here she is with Parker posing for the camera with the pumpkin we had picked at Young's Dairy.

Daddy and Maggie are preparing the pumpkin carving by drawing on it first.

Life Update:
Maggie is making a remarkable adjustment to having a little brother in the house. I am continually amazed at how she has been doing. I was very worried that Maggie would have a hard time while we were in the hospital, being as this was the first time that we had been apart (it was definitely hard on me). Her aunt Morgan and my mom stayed with her and she did very well. She came to visit us at the hospital the day after Colin was born (again, I was very hesitant to do this as I thought she would not want to leave), but again, she proved me wrong. She was so happy to come to the hospital and walked in carrying 2 white carnations for us. She went around the room talking and taking pictures. It was a joy to see.

Since being home, Maggie has been a great help by getting diapers, burp cloths, blankets, and whatever we ask for. She has become even more independent and is just the happiest little girl. Though we have reverted back to wanting me to lay in bed with her for nap, she is doing wonderfully. Colin is a very good baby who sleeps most of the time. We're not quite used to that as Maggie from the beginning was never a good sleeper. Though we are still sleep deprived, we are enjoying our new little family.

Maggie had her monthly clinic visit a week ago, which of course created anxiety in me once again. Her numbers looked great and she actually didn't have to get an IVIG (antibody infusion), as she was within the normal threshold. Andy took her to the appointment and they were back home within 2 1/2 hours. This was a record for her. With this appointment being so positive, we feel like we can breathe once again for another month.

This past week, Andy had taken Maggie outside since it was so nice out. As I looked out the window, I felt that my world was perfect at that moment. Maggie was walking outside by herself, carrying a watering can and watering our dead flowers. Andy was helping her fill up the can and I stood watching it all unfold while holding our newborn son. At that moment, all was forgotten about where we have been and what we have endured. Instead, all I could think about was that this family of four has so much joy ahead of us. It's a new beginning that I am ready for and look forward to.

The day we got home from the hospital, Maggie came into the house asking, "Where is my little brother?" She was ready to hold him and hasn't let him go since.

Maggie enjoys sharing her bed with Colin.

I foresee a beautiful friendship.

She loves to hold her little brother. She asks constantly to hold him and does a good job doing so. She doesn't seem to mind his crying at all. She tells him "it's okay," and "calm down."

Maggie has become a good mommy to all of her babies. She was even pushing 2 strollers with babies in them last night.

Maggie meets her little brother

Maggie is a very happy big sister, as you can see. Colin Gabriel was born yesterday at 6:50 PM. He weighed 8 lbs., 11 oz and was 21 1/4 inches long.