Marykate has been doing really well since the transfusion. She is up walking quite a bit, eating fairly well and her pain has been managed nicely. As some things improve, others have become more of a challenge. Sunday (Easter) was a great day, but last night was a little harder. Phantom pains have become more of an issue as she feels as if her arm is still there. She says it is not exactly painful, but very annoying - sort of like if your arm was asleep and had a prickly, pins and needle feeling but is more intense. We will be leaving the hospital tomorrow and going back to Ronald McDonald house. She has been in good spirits and has been able to enjoy a movie and have a few laughs.

Today, I (Marykate) felt 100% better after the blood transfusion. I'm having a very little bit of phantom "pain", which is more like a numbness that feels like my hand "fell asleep" for a few days. I am walking around quite a bit today, and feel a lot more normal. Also food is starting to taste good again. Especially baked potatoes!!!! Weird, huh?!

Anyway, thank you for all of your comments, support, and prayers. They really mean a lot to me. I"ll write again soon.
Marykate Hughes

Just wanted to update everybody. Last night we had a little bit of a set back as Marykate had been doing really well. She got up and walked around twice yesterday and was feeling relatively good. Last night she was getting really exhausted and sick just standing up and walking a few steps. Turns out her hemoglobin count (red blood cells that carry oxygen) had dropped to 7.3. Normal is between 12 and 18, and they usually give a blood transfusion at 8. So....she will be having a transfusion this afternoon and that should help alot. It's a bit of bummer because she doesn't have the energy to do her physical therapy, so we'll have to put that on hold today. She still cannot eat anything and feels sick from the pain meds. It's kind of a catch-22 because in order to get off the IV meds she needs to be able to keep stuff down but she can't keep stuff down....because of the IV meds!

Overall, things are going very well. She is healing up nicely and we are all encouraged. We talked to a prosthetist today and are encouraged with options that may be available. Because her shoulder blade was preserved, the options are better.

Marykate's surgery started at 9:30 am Wed. April 8th. The staff was really good at updating us every two hours. Things went as well as could be expected, and there were no complications. The total surgery time was about six hours, which was better than we expected. The plastic surgeon did not need to take her quadricep to use in the reconstruction (avoiding a graft) and was able to use muscle and tissue that was already there. This will help substantially in her recovery. However, when the thoracic surgeon removed part of the chest wall, and was able to look at her lung, he felt that a small portion of that should be removed too, as there were some changes in that area. This was most likely due to prior radiation scarring, and hopefully not tumor related. We will find out the results of that a few weeks from now. He felt that since she was already having this amputation, it would be best to remove this area regardless. The orthopaedic surgeon, Dr. Lewis, did the amputation, but was able to leave her shoulder blade which gives a little better form and may help with prosthetic options down the road. Dr. Lewis felt confident she was able to achieve a large margin of tumor free tissue around the area. After the arm was off, they looked at the tumor area and determined that a limb salvage surgery would have been impossible as the tumor had invaded the brachial plexus (nerve, blood vessel bundle in the shoulder).

Overall, everything went very well and Marykate did great. As we were waiting to go back for surgery in the morning, she was very relaxed, calm and confident. She was not afraid and was looking forward to getting this behind her and getting on with her life. After surgery she was kept comfortable and was able to respond well to us. She hasn't been able to eat because she's had quite a bit of nausea and vomiting from the pain meds., but is resting well and reasonably comfortable. Breathing is a bit painful, but manageable. Today, she was able to get up with some help and sit in a chair for about ten minutes. She is drinking water and eating ice chips. She has been very matter-of-fact and hasn't mentioned anything about her arm. So far there have not been any phantom pains and her main concern is breathing and the drain from her chest. Her nurses and doctors have been very pleased with her attitude and progress considering her age and the magnitude of what was done.

Today the goal is to get up and move a few times and hopefully eat something. I (Julie) am staying with her in her room at night and Mark is with us all day, then goes back to Ronald McDonald house at night. We are all, including Marykate, doing well and in good spirits and really looking forward to coming home.

We really appreciate all of you, who have supported us with encouragement and prayer the past two months. Thank you for all the love you have shown us. We feel so blessed to have such great friends and family and we know that has helped us deal with this situation. You really have helped us carry this burden. THANK YOU!

Please continue to pray for swift healing, pain and nausea management and a clear perspective mentally and spiritually on dealing with this in the weeks to come.

Julie

Surgery Day

"Though I walk in the midst of trouble, thou wilt revive me." Psalm 138:7

We happened to read this poem in a devotional at about midnight last night and thought it was encouraging. Thank you all for your prayers today - we will update you as soon as we can.

The Eye of the Storm

Fear not that the whirlwind shall carry thee hence,
Nor wait for onslaught in breathless suspense,
Nor shrink from from the whips of the terrible hail,
That pass through the edge through the heart of the gale,
For there is a shelter sunlighted and warm,
And Faith sees her God through the eye of the storm.

Passionate tempest with rush and wild roar,
And threatenings of evil may be on the shore,
The waves may be mountains, the fields battle plains,
And the earth may be immersed in a deluge of rains,
Yet, the soul, stayed on God, may sing bravely in song,
For the heart of the storm is the center of calm.

Let hope not be quenched in the blackness of night,
Though the cyclone awhile may have blotted the light,
For behind the great darkness the stars ever shine,
And the light of God's heavens, his love shall make thine.
Let no gloom dim thine eyes, but lift them on high,
To the face of thy God and the blue of His sky.

The storm is thy shelter from danger and sin,
And God himself takes thee for safety within;
And the roar of the wind is a sound of a psalm,
He glad and serene when the tempest clouds form;
God smiles on His child in the eye of the storm.

Mark & Julie

After finding out that surgery was canceled, we went back to Ronald McDonald House to wait for when the next surgery date was. Several hours later, they called and told us that it was scheduled for the following Wednesday. It was kind of a bummer because we were already ready for surgery and now we had to wait ANOTHER week. But there was nothing we could do about that, so we decided to go to San Antonio for a few days and have a little fun.

After a three and a half hour drive, we arrived in San Antonio, at the Westin. The hotel heard about our "vacation" and fifteen minutes after showing us our room, they called up and said that they wanted to do something. As it turned out, that "something", was a limo that was at our disposal for five hours!!!!! They had also made reservations for us at The Palm, a nice restaurant on the Riverwalk. After walking on the Riverwalk and having a delicious dinner, our driver picked us up, and drove us around to some of the popular spots in San Antonio. At about 10 p.m., he drove us back to our hotel.

We also found out that the hotel had given us free tickets to Six Flags!!!!!!!!!! So on Saturday, we went and spent a good part of the day there. It was a lot of fun and we had a blast, but it would have been even funner if the rest of the kids were there as well. Later, after several hours at Six Flags, we came back to the hotel and sat by the pool for a while. The pool, or pools, was amazing, they set it up so that instead of one big oval pool, they had smaller irregular-shaped pools that were all connected in a seemingly haphazardly way. There was a waterfall that fed into one of the pools, and overall, it was one of the coolest pool(s) I have seen! While we were down there it was around ninety degrees with 20-30 mph winds (sometimes). And then on Sunday, before driving back to Huston, we went shopping at an outdoor mall and went to a movie, Monsters vs. Aliens, which was funny and entertaining.

So now we are back in Houston, and we have to be at the hospital at 6 a.m. tomorrow. I really appreciate all of your prayers and support (especially tomorrow).

Marykate Hughes

Thursday, April 2, 2009



We reported to surgery at 5:15 am today. After getting all prepped, meeting all the doctors, anesthesiologists, nurses, etc. we met with Marykate's main surgeon about 7:30 am for final consultation. She immediately told us of new developments that showed up on the scans taken the night before. First, the tumor did not shrink with chemo, and seemed to be invading the brachial plexus (middle of the shoulder where the nerves and arteries are). This means that a limb salvage surgery will not happen, and she will have the amputation. Also, the area where the original tumor was radiated, on the chest wall, appeared to have changed from previous scans. After consultation with a few other doctors, they decided that that area should be removed as well. In order to do this, a thorasic (chest) surgeon would need to be involved as well, and the operation would have to be postponed until the main surgeon, the thorasic surgeon and the plastic surgeon could reschedule to a common date. We are waiting to see when Marykate's surgery will be rescheduled.

Mark & Julie