I promised some good/fun updates with pictures, and I have not forgotten. But I need Todd’s help with the picture upload, and he is very busy – but hope to add pictures soon. Andrea is home from school today, still asleep. She had an upset stomach over the weekend, making her very tired – so I will let her sleep some more today. She has been doing pretty good, everyday is better. I can tell she is feeling more herself because she is starting to laugh and smile more – but still not back to her 100% self yet. The school Christmas band concert was awesome, Andrew plays in it too. Andrea had a piccolo solo for the first song and sounded great, even though she had to use the schools piccolo – her piccolo is done for. The wet and cold marching band season was too hard on it – and it is now toast. Her CMACB Christmas concert is dec 20th at the Alma College – expecting a great sound from that concert as well. She loves playing her music. After Christmas break she will begin to ramp up for her 2 solos and 1 duet for the February district competition in owasso, her goal is to get an invite to state finals. She will play her flute and piccolo – she does not feel ready for sax, but we think she is. Not much else going on, just keeping up with her sleep and schoolwork is all she can handle for now. She is very excited about new years eve at GWL. GWLinvited her and 5 guests for new years. I had wrote them a letter and told them about her smelling chlorine every time she had a radiation treatment and that it reminded her of GWL. So they responded with an offer to stay two nites of Andreas choice and 5 guests, at no charge. They select families that have had a life changing event/trauma.So Andrea hopes to put 2009 behind her and ring in 2010 in style. Will try and post pictures soon. Oh, and she found her Chevy truck she has been wanting. Now she just needs to wait for April so she has her licence. Another exciting thing for her to look forward to – although she said she wants to get another job, don’t know how she would keep up with everything and a job again.
Archive for 'Andrea'
Neuro Opthamolgist Appt.
Categories: Andrea | November 20th, 2009 | by diane | no comments
Well, as usual the appt was over 3 hours long – with 2 hours of putting Andrea through extensive testing. Only to meet with the doc and find that he had not received any of the reports or MRI’s sense radiation began. So at a bit of a disadvantage, not knowing how things look in her head after the radiation he did his best. From his exam he said she is doing very well, considering, and that he has hope that things may only continue to improve. She now has what is referred to as an optical island. Basically if you cover her healthy eye (left), her other eye (right) can see out the top half of a small hole. Like looking through half a straw – but it takes some doing for her to see the spot and everything is white, black and purple. The neurosurgeon originally said he cut very deep into the optical nerve and there would be no sight. Then just prior to radiation (only 6weeks after surgery) she was seeing this island in purple.Two weeks after radiation her eye went back to seeing nothing. But now is beginning to come back. The neuro opthamologist said no one can say for sure if she will recover any more sight or how long it would take – but that there is something there, that may or may not help her. We have to go back in six months. Therefore in April she will see: Neuro Surgeon, Neuro Oncologist, Endocrinologist, Neuro Opthamologist and Audiologist and get an MRI and blood panel (not on the same day though). So for now she will be free of doctor visits and trips to ann arbor. Just in time to enjoy winter and her new/used truck. So we have decided and the Neuro Oncologist said it was ok, not to do the Audiologist appt next week – it is a baseline for hearing loss due to radiation and can be done in April. So, I plan to still post once a month – but the posts will be of what Andrea is up to and maybe even some pictures, old and new. So if you want to keep checking in, I will try to make it good/fun reading and viewing.Oh, and her bald spots are really starting to grow hair – some are 1/4 inch long already. But she covers them so well with her new hair cut/style anyway. She is very busy with school work, NHS, CMACB, concert band, boy friend (she says he’s not), her horse, her dog, her friends and now her truck. All of this in between still needing alot of rest, but improving every day. She is so strong and a fighter like most kids that are dealt things like this.
Mondays Neuro Surgeon Appt.
Categories: Andrea | November 11th, 2009 | by diane | one comments
The appointment with Andreas Neurosurgeon went very well today. He said after looking over her MRI from last Monday – he felt the need to check in on Andrea and be sure her followup care was going well. Which we had not had any followup care from the Doctor he passed us on to yet, because they never returned my 3 phone calls for appointments and Andreas Neuro Radiation Oncologist said there would be no need in seeing another doctor besides him for the time she was doing radiation. Anyway, because Andrea really likes her Neurosurgeon and we like his so thorough and really knows his stuff and his office staff is wonderful – we will remain with him as her Neuro maintenance doctor. With all of that said, Andrea will not have to see him again until April of next year. So as it looks right now, after her Neuro Opthamologist appt next week – we should be all done with appts until 2010. Andrea is still trying to resume her normal routine – but finds she is not up to par yet. But the number of days she can go strong before needing a day of rest are improving. She actually went to school all 5 days last week (first time since school began), but is home today sleeping. Not that she needs to add anything to her schedule, but she is joining a talk group that meets once a month at the hospital – called HEAD STRONG. It is people of all ages that have suffered a head injury. It will give her someone in common to talk with and vent, being that she doesn’t seem to want to vent to us. She remains strong willed/tough for us. She will also need to take time to do 8 hours of community service in the next 9 weeks so that she can fulfill her NHS commitment. She is undecided what she wants to do for that this time, she has so many ideas: volunteer at a vet clinic or animal shelter, at the dairy farm she used to work at, at the elementary school or the one I think she may do this 9 weeks is make character pillow cases for the hospital to hand out in the pedsdept in Carson City. So that is all for now – will post next week after the Neuro Opthamologist appt. Also, I have been trying to decide at what point I do not update the Blog any longer. Todd checked the number of hits for October and it was over one thousand, so at this time we will continue the blog and we are all very thankful so many care about Andrea. Have a good week.
tuesday november 3rd
Categories: Andrea | November 3rd, 2009 | by diane | no comments
Received an appt reminder today from Andreas Neuro Surgeon for a followup appt on the 9th of November with him and the Neuro Oncologist. So back to Ann Arbor next week, will post results of appt then.
10-26-09 Tests/Appts….
Categories: Andrea | November 2nd, 2009 | by diane | no comments
Everything went smooth in Ann Arbor – good results and all around positive reports. The MRI went off without a hitch, although from now on they are going to require Andrea be on Steroids 13 hours prior to any contrast IV. But her next MRI is not for 6 months, so we will deal with that then. Her Radiation Oncologist was very positive in Andreas progress (other than the extreme fatigue) and showed us today’s MRI the MRI from the night of her surgery and the MRI from before surgery so we could see the progression and how the space where the tumor was filling in with brain, etc. and explained everything in detail. He said as time goes on they will be able to tell more, but for now everything looks fantastic and is right where they want it. He also wants Andrea to see an Audiologist (another maintenance doctor to add to her list) for a baseline hearing test – although she probably only took about 11 to 15 grey in that area, he said there could be some hearing loss. We do not have to see the Radiation Oncologist/Endocrinologist/Audiologist or have another MRI for 6 months (YAH!!). Andreas next apt will be with the Neuro Opthamologist in November and as long as everything remains constant I will not post again until then. Aside from being tired she is doing great. She and Andrew were sick all last week and at home – fever, sore throat, headache, nose and chest congestion. They were given H1N1 and Tamiflu and seem to be doing pretty good – except for a small dry cough. She got her hair cut again, shorter this time and a more shag look – real cute. But makes her look older and took away most of her blond highlights. She celebrated halloween in style at a Youmacon Convention and loved it. Hoping she will make it to school all this week (it will be a first sense school started). Thanks for continuing to care.
TGIF 10-16-09
Categories: Andrea | October 16th, 2009 | by diane | no comments
Well we will call this past two weeks and the many weeks to follow Phase III. It seems more difficult that Phase I and II – because the doctors don’t know what is wrong. At first they were sure it was the broken hormone chains they have been waiting for to show up problems, which can all be fixed with life time medications and that time will come. But for now her blood work is normal, yah, but it does not explain why her symptoms are worsening. She has no appetite, drags herself through each day and wakes up many times all night long. They now think it could be Somnolence Syndrome which occurs 3 to 12 weeks after the end of cranial radiation treatments (it has been 8 for Andrea). Or it could be unresolved emotions she needs to work through about all she has been through in the past 6 months – so we are arranging a session with a professional at U of M that talks with children that have had medical traumas. Or it could be school work stress, because she was not experiencing sleepless nights or fatigue until school started and we all know how much she loves and puts into her school work to maintain A’s and she is trying to keep up with a full load. Which by the way she will be inducted into the NHS on the 26th and is very excited. The doctors say her body has been through alot and it will take alot for it to heal properly. They want her stress reduced/eliminated, worried that she could bring on seizures. So that is where we are at, she has missed 3 days of school this week – and now has more school work and stress to worry about. I have pulled her from her CMACB practices and weekend horse shows – with out a complaint from her, so I know she is tired. Next Ann Arbor appt will still be 10-26-09, unless they have us come down again for another unplanned appt. She will have a 6:10 am MRI, 9:10 Neuro Radiation Oncologist and 10:15 Neuro appt. Will post again then.
October 1st
Categories: Andrea | October 2nd, 2009 | by diane | no comments
Well, its been a month already – time sure does go faster when at home with more to do than we have hours. Andrea has been doing ok, her energy level and appetite have decreased even more sense school has started. She is doing real well with school work, just keeping up with it has been hard to do. She misses most Mondays and Wednesdays because she has to catch up on sleep, so that doesn’t help either. Called endocrinologist Tuesday to tell them about her worsened symptoms and they saw her Wednesday. As we had been told prior to radiation beginning – her putotary gland took 54 grey of radiation and to avoid damage you cannot go over 18 grey. Therefore she has some hormone chains that are showing up broken and they will run tests this Wednesday 7:00 am to find out which ones are broken and will give her meds for it. Then maybe she can sleep alittle less and enjoy Marching Band, school, community band and her horse and dog alittle more. She is currently taking a nap between school getting out and homecoming football game beginning tonite – so she can make it past 8:00pm. Then Saturday she will be at the school by 6:00am to compete in a marching band comp in cedar springs, come home take a nap and then attend the homecoming dance. Sunday she was going to do a horse show, but has decided she will most likely be too tired, has alot of homework and would really like to cheer her 4 H club friends in midland for e team regional comp. That is about all for now – will keep you posted on how the tests turn out next week. Thanks for checking in.
September 1st ALREADY
Categories: Andrea | September 1st, 2009 | by diane | one comments
Gee Andrea and I was just beginning our summer – now its cold and school is starting. Today she is taking her final in Physical Science and will take the final in Health on Thursday – then her 9th grade school work will be complete and on to 10th grade Tuesday. Everything has been going well, time seems to be going faster now that we are at home. She has been keeping very busy, attending horse shows (5th place so far), finishing school work/tests, attending CMACB practice and Marching Band practice. Sunday we had a bit of a scare – we are hoping it was not a seizure. Her left eye giggled back and forth for quite some time, she did not know it was happening. Called her Radiation Oncologist and he wants us to document her behavior, report any other occurrences to him and keep her stress to a minimum. We do not return for any doc visits until October and November if all continues to go well. Her taste buds continue to be off and her appetite is low – but her tiredness gets less and less each day. OH, and she got her hair cut – 8 inches off on the first cut. It is so cute – and she loves it. That is all for now, thanks for checking in on Andrea.
August 24
Categories: Andrea | August 24th, 2009 | by diane | no comments
So sorry for the delay in posting. Everything has been going very well and it is nice to have a break from the tumor/radiation talk. Andrea has been keeping TOO busy. She needs to be resting more than she has been, but is so happy to be resuming her normal life/routine. Medically she does need to sleep alot, everything still tastes off when she eats, which is not often. So between all her activities and not eating the pounds seem to be melting off, that makes her happy (steroid weight came on fast but does not want to go off fast). Now for what she has been up to – I will give you the short version. Returned home late afternoon on Friday the 7th and she of course rode her horse, just alittle because she was quite tired and our sand had not been delivered for the arena yet. Saturday it rained and rained and rained – so she made it at PJ day and relaxed. Sunday was a family reunion day and alittle more riding. Monday she began Marching Band Camp (at the school) and a very long hot week. She pushed herself everyday and by Thursday could not get out of bed, so a day off she earned. Saturday was a day in the boat, with tubing, snorkeling and swimming (felt like the first day of our summer to me). It was a really great day on the water. Sand was delivered and Grandpa G leveled it all out and by evening Andrea and Razzi were tearing it up. The next week was filled with errands and busy work around the barn/house, riding, CMACB practice and school work. Saturday began with Marching with the band in the Maple Parade, then a party at Rex’es then what we have been waiting for all summer – Laurens 16th birthday party and Leukemia remission celebration, it was an event to remember. Then first thing Sunday morning we headed for the first horse show of the season for Andrea and Razzi. It was a great show day and she entered 4 classes, but did not place. She also blew out her patella (an old dance injury) and still rode the last two classes, but in alot of pain. Her grandparents, some of her club members, a neighbor and her family and Lauren and her mom and friend came to cheer her on – she felt very loved. Her and Razzi looked amazing and will hopefully have a good show season next year, with some hours put in on practice – lots of hours. There next show will be the 29th at Triple O and 30th at Ionia Free Fair – it should be alot of fun. Seems like I am leaving some things out – we have been very busy. But I think that brings us all up to date and we hope to continue to have good news as the weeks continue. Thanks for checking in on Andrea.
Monday 8-10-09
Categories: Andrea | August 10th, 2009 | by diane | 3 comments
Not much to tell, last treatment was Friday and it is good to be home – although it has not stopped raining. Andrea is doing well, she has times when she cannot eat and times when she is very tired – but all in all doing very good. She is happy to be home and is at band camp (just at the school) this week. She hopes the ground dries soon so she can ride her horse and will be in her first show of the year the 23rd of august. She will return to U of M for many appts each year, but right now she gets a break until the Oct 26th appt and MRI. Thanks for your continued concern and support.
Comment feature is now on:
Categories: Andrea | August 6th, 2009 | by todd | one comments
Please feel free to use the comment feature on the blog to post comments/questions or communicate with us. Thank you
AUGUST 7th
Categories: Andrea | August 6th, 2009 | by diane | no comments
LAST TREATMENT – YAH!!!!!!!!!!!!!!!!!!!!!!!!!!
also, due to request (you know who you are) – I will have Todd add on the comment feature to the blog. Thank you
August 3
Categories: Andrea | August 3rd, 2009 | by diane | no comments
Andreas last week, only 4 more treatments. She had a friend stay last week, and they had a good time together. Andreas symtoms have not gotten any worse and she is dealing with the hair loss. This week she will meet with her U of M student for Science and her sax instructor one last time. Grandma Jo comes wednesday, we will see the radiation oncologist that day for final instructions and she will also be designing/making/painting a clay tile that will be put in the wall at the new Mott Childrens Hospital (to be completed in 2013 now). 1500 tiles will be placed in the new hospital – they have been made by patients and employees. Thursday nite she will attend the pizza party on the 8th floor and Bob (the guitarist) has asked her to bring her flute and they will play a song together. Then Friday we will be out of here, and only have to return for appts and MRI’s. Will most likely continue to update the blog every monday – as long as there are people reading it. Take Care
July 27th
Categories: Andrea | July 27th, 2009 | by diane | no comments
Only 2 more weeks, 9 more treatments. Meet with her Radiation Oncologist doc today and he said everything seems to be right on track and the MRI she will have on Oct 26th will give them an idea of if she will need additional radiation treatments and that after her last treatment on the 7th of August we are to set up appts with an endo doc, neuro opth doc and ped rad onco doc. Then to follow up with him 3 times a year and have MRI’s each time. Andrea is feeling very tired most of every day and has lost 3more pounds this past week – she just cannot eat. But her spirits are up with all the continued emails, cards, prayers and support – we really appreciate it. Andrea, Andrew and I enjoyed the tiger game very much, even though they lost – for sure a once in a life time experience. Today Andrew went home so he could go back to work and now Andrea will rest until her 3:00 with Rohan (bio chem grad helping her with science). Then at 7:00 her friend will be joining us for the week, she is really looking forward to it – mom just doesn’t cut it, friends are much cooler. Will update progress again next monday.
July 20th
Categories: Andrea | July 20th, 2009 | by diane | no comments
Well we are more than half way now – 16 down and 14 to go. As usual the radiaiton oncologist know what they are talking about – on thursday (treatment 14) Andrea started experiencing hair loss, loss of appetite and everything she does eat tastes burnt. But that did not let it stop her from enjoying a visit from Grandma Jo, having dinner with her band director or going home to surprize her 4H club at the fair. She went from a busy weekend to a busy monday – shopping and a birthday lunch with Grandma Jo before she had to go home, a 2 hour meeting with the U of M student (who just wrote his medical entrance exam) and now reading some mail and answering emails. We also were lucky to score 3 box seat tickets to the Tigers game this sunday. The pitcher (his name escapes me) that just injured his arm and has the next 15 days off – gave Ronald McDonald House 3 tickets for thurs, sat and sundays game – a parking pass too. So we are both looking forward to attending the game on sunday and hoping brother will be able to join us. Wish everyone could come to the game with us. So hope to have such good news for you all next monday and thank you to everyone for your continued support and reading the blog. Take care.