Wednesday, September 8, 2010

Consolidation and Interim Maintenance: The 2nd and 3rd phases of treatment

Ok, so you got your port placed on June 24th and all went well. Your recovery was a little more bumpy than I expected.  All the docs and surgeons made it sound like no big deal, but I guess compared to some of the other surgeries they have to do, it was no big deal to them.  You were funny because you had a small incision on your neck, and a larger one on your right side over your ribs, and the one that bothered you most was the one on your neck.  You would walk around with your head cocked to the right side constantly. We had to help you straighten your head up and it would hurt because you had a kink in it form always leaning it to the right.  You would say, "Im ok, Im ok". Which was actually something you said a lot.  The nurses were always amazed at your incredibly advanced coping skills for someone your age.  You would be nervous about a procedure but you would hold perfectly still and say, "Im ok, Im ok." It was amazing how well you dealt with all the pokes and prods and tests and treatments.

The port surgery marked the end of Induction phase and we were looking forward to a less intensive phase of treatment called Consolidation.  You still weren't feeling great, but Grandma and Grandpa were coming to visit and that proved to be a welcome distraction. It also proved to be the beginning of your "return to self" which was a wonderful time.

Silly grammy! You actually took this picture. (Sorry mom, had to post it)

The first real milestone was when you got to take your first shower.  We had to wait a week after the surgery for your stitches to heal but the day finally came.  We were both so excited...you couldnt wait to get "all the way wet".  When it was all over you said, "Oh...it feels soooo good to be all the way clean mom!" with a big heavy sigh and smile. 
Yea for showers!
All the way wet...
Feels soooo good to be clean!
The next milestone is one that brought tears to my eyes. It was when you started to "try" to do thing you used to. Things like jumping on the tramp with friends...
video


The next milestone was that you were actually up to participating in the 4th of July festvities.  I was so glad.  The 4th has always been a favorite holiday of our families so I was grateful you were up for it.  We went to the parade in the morning, and then the activities at the park, and then you even stayed up for the fireworks which we watched in the backyard.  It was so exciting to watch you attempt, and then be successful at all your favorite activities.  It was like watching you take your first steps or say your first words.  It was a relief and a joy to watch you return to your old self.
Watching the parade...
Activties at the park...
 Another fun thing to watch was how much your puffiness went down each day...it was amazing!

Picture taken June 18th




Picture taken July 25th


Picture taken around Aug. 13th


















Every day you seemed to get stronger and have more energy. We had a few minor bumps in the road with fevers in June.  Every time you'd get a fever of 100.4 degrees that lasted at least and hour, or any temp of 101 degrees or higher, we had to take you to Primary Childrens emergency room. They would run blood tests to check for a bacterial infection and then immediately start you on IV antibiotics. If your counts were good (above 500) then we would get to take you home. If they were bad (below 500) then you'd have to be admitted to the hospital.  Luckily your counts were always good enough that we only had to spend a few hours in the hospital getting the IV antibiotics and some IV fluids then we got to take you home.  The only catch was that if you still had a fever after 24hours ( the antibiotics only lasted 24 hrs) then we had to bring you back for another dose of antibiotics. Which only happened once.  You were always a trooper too.  You were upset to have to go, but you dealt with it really well and just kinda hung out and waited patiently. 

Over the course of July and August you gradually got better every day.  We tried to soak in as many fun activities as we could while you were feeling well...never knowing what was around the corner.  We went to Pineview Resevoir (the beach, you called it) with some friends, and we went to a couple of movies, and to the park.  We also participated in a few Hope Kids activities. Hope Kids is an awesome organization for families of chronicall ill children.  It provides activites for the whole family at no cost.  We went ice skating at the Ice Sheet in Ogden.  We also went to a quarterly birthday bash for all the Hope Kids who had b days in July, August, or September.  You even got very nice gift (American Girl doll clothes) from the volunteers.  The B day bash was at a Classic Fun Center in Sandy and our whole family had a blast!
What a doll face you are!

 At the B day bash...Thanks HopeKids!











Tea party with your BFF Ryan


In f ront of the temple...












We got a little nervous when you started Interim Maintenance because the docs told us that as long as your counts were good they were going to escalate one of your chemo doses each time.  They said that its pretty common to get sick from that chemo (so common that they give the chemo with a dose of 24 hr anti-nausea medicine), and that most of the time it gets worse as the dose increases.  I was heartbroken because I DID NOT want to see you get sick again after so may weeks of improvement.  Little did I know how tough and strong your little body was!  Each week we would go and they were able to increase your dose each time and I would bring you home and worry that you were gonna be sick, but nope....you came home and hopped on your bike and rode around with your friends!! Even on the days you were put under with anesthesia for your Back Pokes! It was amazing to watch.  You werent gonna let a little thing like surgery stand in your way of having a good time. I just kept waiting for you to start struggling, but you continued to amaze me.  You had only a few of the side effects.  Your legs became gradually weaker, and you got more and more tired.  The legs never slowed you down, and the tireds were nothing a nap (or quiet time) couldnt cure. 

I am so blessed to have such a faithful kid! It has been so amazing to watch you endure the hardships that have come, and deal with them so bravely, Then at the same time be able to humbly and faithfully ask for a blessing in the middle of the night when you dont feel well.  I have held you in my arms during those night time blessings and felt your body literally melt into my arms as daddy blessed you with peace and comfort.  Your whole body would relax and you would fall asleep and stay that way till morning.

McKall is back!

6 comments:

  1. We love you McKall!!!!! You are so brave and tough! When you feel better, you are going to need to come and visit Aunt Amy and "get all the way wet" in our lake. Luv U!

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  2. Lea...Awesome blog. It brought tears to my eyes. McKall, you are definately one tough chick. I love you so much and you seem wise beyond your years. Thanks for being an inspiration to me and my family.

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  3. Ahh Lea! I don't know how you and McKall do it! I sit here bawling like a baby while I read this, you have been truly blessed, but it hasn't come without hard times. I am so glad things are going well. You are always in our prayers.xoxo

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  4. Tears in my eyes. You guys are an amazing family and McKall is obviously such a strong a brave little girl. We love you guys so much and our thoughts and prayers are always with you. I'm so glad you're keeping this blog.

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  5. My 3 year old son is at the end of Consolidation and about to start his Interim maintenance HD methotrexate. I am so happy to have read your blog and I pray to God the my baby boy will feel well through all this. Thank you for sharing.

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    1. I am just now seeing your comment! I haven't been on this blog for so long! I hope all is well and your son is responding to treatments! By now you should be in Maintenance right?

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