MaryKate was admitted to the hospital early this morning. Her last round of chemo went really well. She felt good and didn't really have any problems until last night. She ended up with a fever and a few other small problems. This is concerning because her white blood count is really low - hers is 200, normal is about 5000. She is getting antibiotics and they are running a few tests. She feels pretty crummy. Thank you for your prayers.
Thursday, June 25, 2009
Wednesday, June 17, 2009
June 17,2009
MaryKate started her fourth round of chemo on Monday, and we will go home late Thursday or on Friday. This will most likely be the last round as there really is not any evidence that these drugs are effective on synovial sarcoma. Her doctor has been very helpful, has consulted with multiple other doctors and just returned from a seminar in Atlanta where this topic was addressed. All of the studies that have been done regarding the effect of chemo on this type of cancer have not shown a difference in outcome between those who receive chemo and those who don't. It's not clear that it is NOT working either though... so it has been a tough decision to decide whether to continue or not. We are really thankful for the great team of doctors that we have had both in Texas and at Doernbecher. They have been humble and honest in trying to give the best advice they can in a case that does not have easy answers.
The nurses here are wonderful!!! We have become friends with many of them. We have also met quite a few families that we have connected with over the past four months. One teen, Ian - 16 years old, passed away last night. That was really rough on our "group" up here. Ian played the violin and was a really nice kid. He played cards with the group of teens that first night we were up here for MaryKate's first round of chemo. Keep praying for ALL the kids and families up here. There are so many stories, new diagnosis, kids in all levels of treatment, kids finishing their treatment and ready to hopefully move on with their life - but with a forever different outlook. So many people's lives changed forever, and many who don't know the Lord. Thank you for your continued support and prayers.
We are so encouraged by all of you. You have held us up in prayer and we have felt it. God has been faithful and shown himself to us in the middle of suffering. He is there, He sees our suffering and walks with us. He gives us joy, and strength in the middle of uncertainty. We have felt loved and taken care of each step of the way. Our faith has grown by leaps and bounds and our confidence in Him has grown. We want MaryKate to be well and continue to pray for that, but even more that our faith grows and that our outlook is forever changed to reflect Christ more. That we can see and reach out to so many hurting people around us. THANK YOU for caring for us and reaching out to us. It has meant so much to all of us. Julie
Wednesday, June 10, 2009
life after surgery
Lately, I have been adjusting to using one arm, it's really amazing all of the things that you can compensate for using teeth, body weight, etc...! Right now, I'm focusing on catching up on school that I've missed, and getting healthy as soon as possible. I also started an art class this last week, and I really excited,it should be a lot of fun (even if it's awkward for a little while.
Also, we're trying to decide on prosthetic options, chemo, and a couple other things that we're not sure about quite yet. Anyway, thank you so much for all of your prayers and support, it really means a lot, and I thank God every time I think about it.
Also, we're trying to decide on prosthetic options, chemo, and a couple other things that we're not sure about quite yet. Anyway, thank you so much for all of your prayers and support, it really means a lot, and I thank God every time I think about it.
Monday, May 25, 2009
May 26, 2009
MaryKate had a round of chemo starting last Monday and was released from the hospital on Thursday. It was pretty hard on her and she had a rough weekend. We appreciate your continued prayers for her recovery. The current plan is for three more rounds of chemo (four days in hospital then two weeks recovery = one round). It is not entirely clear that this chemo is effective on her type of tumor. The final pathology results showed that the tumor that was removed was still quite healthy, but there was some evidence that there might have been some effect from the chemo she had before surgery. At this point her doctor feels we should continue with the chemo, to address any cancer cells that might remain, even though the benefit is a little unclear. Thank you for your continued support and prayers - they are encouraging to all of us. Julie
MaryKate had a round of chemo starting last Monday and was released from the hospital on Thursday. It was pretty hard on her and she had a rough weekend. We appreciate your continued prayers for her recovery. The current plan is for three more rounds of chemo (four days in hospital then two weeks recovery = one round). It is not entirely clear that this chemo is effective on her type of tumor. The final pathology results showed that the tumor that was removed was still quite healthy, but there was some evidence that there might have been some effect from the chemo she had before surgery. At this point her doctor feels we should continue with the chemo, to address any cancer cells that might remain, even though the benefit is a little unclear. Thank you for your continued support and prayers - they are encouraging to all of us. Julie
Wednesday, April 22, 2009
April 22, 2009
It is great to be home and have our family around us! Marykate's surgery was April 8th - a Wednesday. She was released from the hospital a week later, on Wednesday the 15th and we flew home on Thursday the 16th. She was feeling good enough to go to the Viennese Ball (a formal - ballroom type dance) on Saturday the 18th!!! We had purchased tickets to this event back in February and did not expect to be back to use them! Ashley, Jessica, Marykate, Jonathon, Mark and I all attended. We had a really fun time, although Marykate slept until 2:30pm the next day. Things have been going quite well, except for phantom pains that have become more troublesome. We are still waiting for final pathology on the tumor, but are expecting to start with chemotherapy again - possibly next week. She will start therapy tomorrow and we have started looking into a prosthetic.
Thank you for all your prayers, comments and posts. They have encouraged us and we've looked forward to reading them.
Wednesday, April 15, 2009
Marykate was discharged from the hospital today around 1 PM. We will actually be able to keep our return flight time that had been randomly picked before we left! This was a real surprise - especially since surgery was delayed a whole week after we arrived here. Overall, things could not have gone better considering what we came here for. We had a great team of doctors and felt that all of the decisions that were made, the actual surgery, the healing and management of the first week etc... all went really well. We all felt calm and confident in our Lord. There were so many "little" things where He showed himself faithful to us during this whole time. We have been so blessed to have all of you - your prayers and support have meant the world to us! We can actually look at this and "Count it all joy" - knowing that God will use this to perfect us in Christ and make us more like Him in the time to come. I know my faith has increased as I have seen Him allow a difficult situation, yet walk with us in it. I would love to be more specific but for lack of time I can't right now. We are so excited to get home and see everybody and GET ON WITH THE WONDERFUL LIFE GOD HAS GIVEN!!! We'll see you all soon. Julie
Monday, April 13, 2009
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.
Sunday, April 12, 2009
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
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
Saturday, April 11, 2009
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.
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.
Thursday, April 9, 2009
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
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
Wednesday, April 8, 2009
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
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
Tuesday, April 7, 2009
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
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
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
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
Saturday, March 14, 2009
Prior to surgery
Fri. March 20, 2009
Marykate's surgery is rescheduled for Thursday, April 2 at MD Andersen Cancer Hospital in Houston. Doctor consultations are set up for the prior Tuesday and Wednesday. We will be working on travel arrangements for Sunday, March 29 or Monday, March 30 as well as getting the rest of the kids set up. She is feeling better today after being pretty sick for the last week.
Mark & Julie
Sat. March 14, 2009
Marykate started her second round of chemotherapy Wednesday night at the children cancer ward at Doernbecher. The medications make her tired and nauseated. We met a 16 yr. old girl, Kim, from Longview that was just diagnosed with leukemia on Wednesday. We knew they were new because she still had her hair! We really felt for them, being newly diagnosed - its such a shock the first few weeks. Kim and Marykate have spent a little time a couple of evenings visiting. We are planning on going home this afternoon. Marykate's surgery is scheduled for April 13 or 20.
Mark 7 Julie
Fri. March 6, 2009
Marykate lost her hair today. It ALL came out in one day! I thought it might happen over a week or two, but by Friday night it was all gone. Marykate made the best of it and wadded up hairballs and threw them at her brothers and sisters. She made one especially large one for the cat, commenting that it was the biggest fur ball he had ever hacked up. We laughed until we cried.
Mark & Julie
Tuesday March 3,2009
It seems strange to be in the hospital when she feels fine. We still can't go home because blood count are now 450. Maybe tomorrow. We decided to make the best of it and had Mark bring us some real food and watched a movie. We actually had a nice time in our "suite". Lisa, the 14 year old is back too, but having some problems, her chemo is really hard on her and she is quite sick.
Mark & Julie
Mon. March 2, 2009
Marykate developed a fever at home this evening and had to go to the OHSU ER. She will get antibiotics and go home when that subsides and her white blood count is higher. It was about 550 - normal is 1,000 to 8,000.
Mark & Julie
Feb. 20, 2009
Had surgery to install the port-a-cath at 10 AM. Admitted to room around 1 PM. She had various other MRI and CAT scans, etc. According to nurses there is an unusual number of teens in our ward tonight and more unusual still that they would get together and visit. Marykate joined five of them at the end of the hall for a card game. They sat in a circle, all bald, except for Marykate (obviously the new girl!) and all hooked up to their IV drugs. This was a very unusual, spontaneous event as most people keep to their room and don't feel well. The kids ranged in age from 14 to 19. One guy, Jordan, a 19 years old basketball player, had had his leg amputated a couple of months ago. It was nice to see someone a little further down the road who was doing well. The kids played cards for a little while and then just sat and talked for a very long time. Another girl, Lisa (14) was just diagnosed in January. She had an osteosarcoma in her shoulder, but her cancer had metastasized to her lungs already. The parents of many of these kids started to congregate a little further down the hall and talked for a long time too. It was a really nice time to get to talk to other people in the same situation. We didn't get our chemo started until 1AM.
Mark & Julie
Feb. 19, 2009
Marykate was supposed to get admitted to start chemo today, but they were unable to start a picc-line in her arm. It is sort of like an IV but with a catheter that threads up your vein and sits in a larger vein near the heart. Her vein kept clamping down on the tube and would not allow it to move. We had to go home and will come in tomorrow for early surgery to install a port-a-cath. It is a semi-permanent IV device that is implanted under the skin. A needle can be inserted into it to give chemo and other fluids/meds or draw blood.
Since we were not in the hospital we were able to attended the Woodland girls varsity basketball game at rival Ridgefield High School. Unexpectedly Marykate was called out to the center of the court where the whole Ridgefield team rallied around her wearing her jersey number on their arm. The announcer told Marykate that the whole community was behind her. We found out later that the Mark Morris High School team had her jersey number on their arms the previous game that Marykate missed while in Houston.
Mark & Julie
Feb. 13, 2009
We returned early from Houston without surgery.
Our flight from Portland arrived in Houston at 4:00 pm (CST) Wed. Feb. 11. We drove directly to MD Andersen Cancer Center for check-in. Marykate finished with a MRI at 12:30 am. We didn't get to sleep at the Double Tree Hotel until after 2:00 am.
We were up early Thursday morning for a quick breakfast and 9:00 am appointment with two surgeons and the oncologist. We discussed the pros and cons of repeating the previous limb saving surgery again with hope for a better outcome or removing the known cancer with an arm amputation. The new scans showed a possible separation between the nerve and the tumor which may allow a surgical tumor removal with unknown damage to the nerves. Two rounds of chemotherapy to hopefully shrink the tumor prior to surgery were recommended. The plan is for the surgeon to attempt a limb saving surgery. But if the tumor cannot be totally removed without making the arm useless then an amputation will be performed.
We changed our flights to 9:30 pm and arrived home at midnight Friday.
We will be going to Dornbecher Children's Hospital Wednesday at noon for two appointments and return Thursday to admit Marykate for chemotherapy. It appears that she will be there four days and return home. We are planning to return to Houston in 6-7 weeks for surgery (10 day recovery). She will continue chemotherapy for an additional 18 weeks when she returns home.
Mark & Julie
Feb. 10, 2009
Marykate had a great evening Monday thanks to many in the Woodland community. Jay Foreman posted on his blog at http://nwgirlsbballnews.blogspot.com. We leave for Texas Wednesday.
Since cancer came back the doctors at Dornbecker Children's Hospital in Portland recommended removing her arm and shoulder to hopefully eliminate the cancer all together. We have decided to go to MD Andersen Cancer Hospital in Houston, Texas to have cancer doctors that have had much more experience with this rare synovial sarcoma cancer review her case. If there is a better treatment we believe they will be the best team to decide. The last couple of days we have been frantically organizing this last minute trip. Marykate has appointments all day Thursday with three doctors in addition to scans. I just booked a hotel, plane flights for Wednesday and have yet to reserve a car.
Marykate's surgery is rescheduled for Thursday, April 2 at MD Andersen Cancer Hospital in Houston. Doctor consultations are set up for the prior Tuesday and Wednesday. We will be working on travel arrangements for Sunday, March 29 or Monday, March 30 as well as getting the rest of the kids set up. She is feeling better today after being pretty sick for the last week.
Mark & Julie
Sat. March 14, 2009
Marykate started her second round of chemotherapy Wednesday night at the children cancer ward at Doernbecher. The medications make her tired and nauseated. We met a 16 yr. old girl, Kim, from Longview that was just diagnosed with leukemia on Wednesday. We knew they were new because she still had her hair! We really felt for them, being newly diagnosed - its such a shock the first few weeks. Kim and Marykate have spent a little time a couple of evenings visiting. We are planning on going home this afternoon. Marykate's surgery is scheduled for April 13 or 20.
Mark 7 Julie
Fri. March 6, 2009
Marykate lost her hair today. It ALL came out in one day! I thought it might happen over a week or two, but by Friday night it was all gone. Marykate made the best of it and wadded up hairballs and threw them at her brothers and sisters. She made one especially large one for the cat, commenting that it was the biggest fur ball he had ever hacked up. We laughed until we cried.
Mark & Julie
Tuesday March 3,2009
It seems strange to be in the hospital when she feels fine. We still can't go home because blood count are now 450. Maybe tomorrow. We decided to make the best of it and had Mark bring us some real food and watched a movie. We actually had a nice time in our "suite". Lisa, the 14 year old is back too, but having some problems, her chemo is really hard on her and she is quite sick.
Mark & Julie
Mon. March 2, 2009
Marykate developed a fever at home this evening and had to go to the OHSU ER. She will get antibiotics and go home when that subsides and her white blood count is higher. It was about 550 - normal is 1,000 to 8,000.
Mark & Julie
Feb. 20, 2009
Had surgery to install the port-a-cath at 10 AM. Admitted to room around 1 PM. She had various other MRI and CAT scans, etc. According to nurses there is an unusual number of teens in our ward tonight and more unusual still that they would get together and visit. Marykate joined five of them at the end of the hall for a card game. They sat in a circle, all bald, except for Marykate (obviously the new girl!) and all hooked up to their IV drugs. This was a very unusual, spontaneous event as most people keep to their room and don't feel well. The kids ranged in age from 14 to 19. One guy, Jordan, a 19 years old basketball player, had had his leg amputated a couple of months ago. It was nice to see someone a little further down the road who was doing well. The kids played cards for a little while and then just sat and talked for a very long time. Another girl, Lisa (14) was just diagnosed in January. She had an osteosarcoma in her shoulder, but her cancer had metastasized to her lungs already. The parents of many of these kids started to congregate a little further down the hall and talked for a long time too. It was a really nice time to get to talk to other people in the same situation. We didn't get our chemo started until 1AM.
Mark & Julie
Feb. 19, 2009
Marykate was supposed to get admitted to start chemo today, but they were unable to start a picc-line in her arm. It is sort of like an IV but with a catheter that threads up your vein and sits in a larger vein near the heart. Her vein kept clamping down on the tube and would not allow it to move. We had to go home and will come in tomorrow for early surgery to install a port-a-cath. It is a semi-permanent IV device that is implanted under the skin. A needle can be inserted into it to give chemo and other fluids/meds or draw blood.
Since we were not in the hospital we were able to attended the Woodland girls varsity basketball game at rival Ridgefield High School. Unexpectedly Marykate was called out to the center of the court where the whole Ridgefield team rallied around her wearing her jersey number on their arm. The announcer told Marykate that the whole community was behind her. We found out later that the Mark Morris High School team had her jersey number on their arms the previous game that Marykate missed while in Houston.
Mark & Julie
Feb. 13, 2009
We returned early from Houston without surgery.
Our flight from Portland arrived in Houston at 4:00 pm (CST) Wed. Feb. 11. We drove directly to MD Andersen Cancer Center for check-in. Marykate finished with a MRI at 12:30 am. We didn't get to sleep at the Double Tree Hotel until after 2:00 am.
We were up early Thursday morning for a quick breakfast and 9:00 am appointment with two surgeons and the oncologist. We discussed the pros and cons of repeating the previous limb saving surgery again with hope for a better outcome or removing the known cancer with an arm amputation. The new scans showed a possible separation between the nerve and the tumor which may allow a surgical tumor removal with unknown damage to the nerves. Two rounds of chemotherapy to hopefully shrink the tumor prior to surgery were recommended. The plan is for the surgeon to attempt a limb saving surgery. But if the tumor cannot be totally removed without making the arm useless then an amputation will be performed.
We changed our flights to 9:30 pm and arrived home at midnight Friday.
We will be going to Dornbecher Children's Hospital Wednesday at noon for two appointments and return Thursday to admit Marykate for chemotherapy. It appears that she will be there four days and return home. We are planning to return to Houston in 6-7 weeks for surgery (10 day recovery). She will continue chemotherapy for an additional 18 weeks when she returns home.
Mark & Julie
Feb. 10, 2009
Marykate had a great evening Monday thanks to many in the Woodland community. Jay Foreman posted on his blog at http://nwgirlsbballnews.blogspot.com. We leave for Texas Wednesday.
Northwest Girl's Basketball News & Scores (SW Washington - Vancouver area)
It was Mary Kate's Night
What a community, what a school, what a team, what a coach... Wow... Woodland High School's gym was packed for the J.V. game Monday night. A lot of the students, a lot of the administration, varsity team parents and boosters, the press, and just basketball fans came to show their support to Mary Kate Hughes. And she was just smiling and having fun, as if she wasn't aware of what was going on.
When I came in the gym, she stopped her warm ups and came over and gave me a hug, spoke for a minute, and went back to warming up. I had to go outside and fight my tears back. I got back in to see the start of the game though. Mary Kate was to play two quarters in the J.V. game and then be a surprise starter and play two quarters of the varsity game.
In the J.V. game she took 4 shots in the 1st quarter, the fans hanging on every shot but she miss them all. Then in the 3rd quarter she pulled up from the top of the key and hit a 3 pointer. The gym erupted. I don't even know what happen after that. All of a sudden the game was over and the varsity team was coming out to warm up.
In the varsity game warm ups, you could see Mary Kate beginning to be a little nervous. During one of the warm up drills she stumbled and fell, but laughing it off she got up and continued to get ready. Then came the pre-game ceremony, it was senior night and the team manager along with Jessica Hughes, Mary Kate's older sister were honored. Then came the poem. A poem for Mary Kate from her teammates. That was a tough one, keeping dry eyes. Then they did the starting line up, and the announcer says "at guard, a sophomore, #11 Mary Kate Hughes" and again the gym exploded. A dream come true, starting a varsity game along side her sister Jessica.
In the first quarter the ball went straight to Mary Kate, she took the first shot, it was short. She went down on defense, one of the Washougal players took a shot, missed it, the rebound came long, Mary Kate tracked it down, lead the fast break and sent a great pass to a team mate for the first two points of the game. Not much happen after that, and shortly afterwards Mary Kate came out of the game, and didn't re-enter until the 4th quarter.
In the forth quarter, she caught the ball on the wing, drove to the hoop, throw it up, and scored. The gym erupted again. Her first varsity points. Then with her sister Jessica feeding her the ball, she hit a short jumper. 4 points, 3 rebounds, 2 assist and a night she and many won't forget.
When I came in the gym, she stopped her warm ups and came over and gave me a hug, spoke for a minute, and went back to warming up. I had to go outside and fight my tears back. I got back in to see the start of the game though. Mary Kate was to play two quarters in the J.V. game and then be a surprise starter and play two quarters of the varsity game.
In the J.V. game she took 4 shots in the 1st quarter, the fans hanging on every shot but she miss them all. Then in the 3rd quarter she pulled up from the top of the key and hit a 3 pointer. The gym erupted. I don't even know what happen after that. All of a sudden the game was over and the varsity team was coming out to warm up.
In the varsity game warm ups, you could see Mary Kate beginning to be a little nervous. During one of the warm up drills she stumbled and fell, but laughing it off she got up and continued to get ready. Then came the pre-game ceremony, it was senior night and the team manager along with Jessica Hughes, Mary Kate's older sister were honored. Then came the poem. A poem for Mary Kate from her teammates. That was a tough one, keeping dry eyes. Then they did the starting line up, and the announcer says "at guard, a sophomore, #11 Mary Kate Hughes" and again the gym exploded. A dream come true, starting a varsity game along side her sister Jessica.
In the first quarter the ball went straight to Mary Kate, she took the first shot, it was short. She went down on defense, one of the Washougal players took a shot, missed it, the rebound came long, Mary Kate tracked it down, lead the fast break and sent a great pass to a team mate for the first two points of the game. Not much happen after that, and shortly afterwards Mary Kate came out of the game, and didn't re-enter until the 4th quarter.
In the forth quarter, she caught the ball on the wing, drove to the hoop, throw it up, and scored. The gym erupted again. Her first varsity points. Then with her sister Jessica feeding her the ball, she hit a short jumper. 4 points, 3 rebounds, 2 assist and a night she and many won't forget.
A LETTER FROM A COACH THAT CARES
This letter is in response to an email I sent to coach Glenn Flanagan of Woodland HS. I recently received information from a family at the school that one of his players had been diagnosed with cancer. This was his response.
Hey Jay,
Marykate Hughes, a sophomore, for us has been diagnosed with cancer for the second time. She comes from a wonderful family of 10 kids. They are definitely a basketball family as well. Her oldest sister Ashley Hughes was first team all GSHL for Woodland last year and sister Jessica is currently the point guard for Woodland's varsity. You may remember Marykate worked out with you in the fall here at Woodland. For me as her coach, she is a wonderful inspiration to me.
Here's a little of her story, sometime around her being in the fifth or sixth grade, Marykate was diagnosed with cancer in her right arm. They caught the cancer, but it left her with some limited mobility in her right arm. Not to be deterred, Marykate wasn't going to give up playing basketball, so she switched from playing right handed to left handed and continued playing. She has worked hard and not even her teammates can tell that she was originally right handed. She currently is one of the leading scorers and best players on our junior varsity team.
Recently doctors found out that the cancer has come back in her right arm and the family is now waiting to here as to what their options are. As expected though Marykate came back at practice the day after her examination, with a smile on her face, shagging balls for teammates and doing what she can to be a part of the team.
Jay your thoughts and prayers are appreciated. As Jimmy Valvano said and Marykate is showing us, "cancer may take away your physical abilities, but it cannot touch my mind, it cannot touch my heart, and it cannot touch my soul, those 3 things will carry on forever.
From me, I would just encourage everyone to step back, take a deep breath give your coach a hug, your teammates a hug, your daughters a hug and lets not take for granted this great sport that we are allowed to play.
Coach Glenn Flanagan (father of 3) Woodland High School Girl's Basketball
To the Hughes family, my thoughts and prayers are with you.
To the readers of this blog, feel free to express your thoughts via comments or email me. We will rally behind this young lady Marykate Hughes and make a difference.
Hey Jay,
Marykate Hughes, a sophomore, for us has been diagnosed with cancer for the second time. She comes from a wonderful family of 10 kids. They are definitely a basketball family as well. Her oldest sister Ashley Hughes was first team all GSHL for Woodland last year and sister Jessica is currently the point guard for Woodland's varsity. You may remember Marykate worked out with you in the fall here at Woodland. For me as her coach, she is a wonderful inspiration to me.
Here's a little of her story, sometime around her being in the fifth or sixth grade, Marykate was diagnosed with cancer in her right arm. They caught the cancer, but it left her with some limited mobility in her right arm. Not to be deterred, Marykate wasn't going to give up playing basketball, so she switched from playing right handed to left handed and continued playing. She has worked hard and not even her teammates can tell that she was originally right handed. She currently is one of the leading scorers and best players on our junior varsity team.
Recently doctors found out that the cancer has come back in her right arm and the family is now waiting to here as to what their options are. As expected though Marykate came back at practice the day after her examination, with a smile on her face, shagging balls for teammates and doing what she can to be a part of the team.
Jay your thoughts and prayers are appreciated. As Jimmy Valvano said and Marykate is showing us, "cancer may take away your physical abilities, but it cannot touch my mind, it cannot touch my heart, and it cannot touch my soul, those 3 things will carry on forever.
From me, I would just encourage everyone to step back, take a deep breath give your coach a hug, your teammates a hug, your daughters a hug and lets not take for granted this great sport that we are allowed to play.
Coach Glenn Flanagan (father of 3) Woodland High School Girl's Basketball
To the Hughes family, my thoughts and prayers are with you.
To the readers of this blog, feel free to express your thoughts via comments or email me. We will rally behind this young lady Marykate Hughes and make a difference.
Feb. 8, 2009
Marykate noticed tingling in her fingers of her right hand in December. Pain in her arm then became progessively stronger to the point of not being able to sleep. We contacted her oncologist at Doernbecher Children's Hospital for an appointment.
An MRI revealed that the cancer Marykate was treated for over five years ago had survived surgery and radiation. The tumor was about an inch diameter. It came back in the same spot on her right shoulder adjacent to the nerves and veins that supply her right arm. The original surgery cut out the tumor but could not remove a margin beyond that without cutting the nerves and making the arm useless.
Marykate noticed tingling in her fingers of her right hand in December. Pain in her arm then became progessively stronger to the point of not being able to sleep. We contacted her oncologist at Doernbecher Children's Hospital for an appointment.
An MRI revealed that the cancer Marykate was treated for over five years ago had survived surgery and radiation. The tumor was about an inch diameter. It came back in the same spot on her right shoulder adjacent to the nerves and veins that supply her right arm. The original surgery cut out the tumor but could not remove a margin beyond that without cutting the nerves and making the arm useless.
Since cancer came back the doctors at Dornbecker Children's Hospital in Portland recommended removing her arm and shoulder to hopefully eliminate the cancer all together. We have decided to go to MD Andersen Cancer Hospital in Houston, Texas to have cancer doctors that have had much more experience with this rare synovial sarcoma cancer review her case. If there is a better treatment we believe they will be the best team to decide. The last couple of days we have been frantically organizing this last minute trip. Marykate has appointments all day Thursday with three doctors in addition to scans. I just booked a hotel, plane flights for Wednesday and have yet to reserve a car.
Mark & Julie
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