7/17/14: Here is Susan's latest update:Share This Update!
Smoothie day again at the Jimmy Fund Clinic! Amy has a special recipe that is quite delicious and she was pleased with the tiny umbrellas they had for us today. :) Amy's feeling great. She has gained more weight - she's just a couple of pounds under her pre-diagnosis weight. She had a brain scan this morning and tomorrow we will meet with the neurosurgeon to discuss the plan for surgery and the results of the scan (which will hopefully help her classify the 'spots'). Amy has five days of chemo starting today. Please continue to pray for wisdom for the doctors as they develop her treatment plan.
Tuesday, July 1, 2014: Here is Susan's latest update:Share This Update!
Amy's done with her five days of chemo and hopefully home for a bit. Amy's oncologist was presenting her case at a conference at Dana Farber yesterday and was also consulting with the PPB experts in Minnesota. Most likely she will have another brain surgery the week of July 14th as we need to wait for her blood counts to rise again from this chemo cycle. Please continue to pray for the doctors as they try to determine the best course of treatment. We still have not received the final pathology from last week's biopsy.
Monday, 6/23/14: Here is Susan's update for today:Share This Update!
We just met with the neurosurgeon and she is "guardedly optimistic" but not 100% certain about what was found today. She had to take four biopsies from the 2cm spot on Amy's cerebellum because each time she took a sample it was tested and found to be normal tissue! Amy will have another MRI tomorrow to confirm that the samples came from the area that looked suspect. If the MRI confirms it was the correct area she believes it was just a vascular defect that has always been there and no treatment will be needed. In this case she will (in a month or so) remove the other two 2mm spots (which are very small and close to each other and therefore one surgery). The surgeon is stressing that she is guardedly optimistic as the 2cm spot had the appearnance of a tumor on the MRI. The final pathology of today's biopsy will come next week - which will provide additional confirmation. Amy will be heading to ICU shortly. Thanking God for bringing Amy safely through this procedure and for this amazing finding! Please pray that the MRI and final pathology are able to conclusively confirm that the spot is not a tumor!
Thursday, 6/19/14: Here is today's update:Share This Update!
She made it to the last two days of school! We spent this afternoon swimming in our neighbor's pool and bike riding. You would never know she is so 'sick.' Tomorrow we head to Boston to meet with the neurosurgeon. Amy will have the larger of the three spots biopsied on Monday. Two of the spots are 2mm and one is 2cm. The 2mm spots are close to each other and in a location that makes them 'easy' to remove, however they close enough to the larger spot to remove during the same procedure. The 2cm spot is in a slightly more challenging location but also has a 'different' look to it. They want to biopsy it first before removing it to be sure it is a malignancy rather than an area altered by chemo or a vascular defect that has always been there. Tomorrow we will get more details about the procedure and recovery. Amy will have another pre-op MRI. Thank you for keeping us in prayer!
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Friday, 6/13/14: This is Susan's update for today:
Amy's oncology team came by after her transfusion this afternoon to go over the results of this morning's MRI. I knew it was probably not a simple good report when our team psychologist was with them. It's actually a long story that begins a couple of weeks ago with the pathology report following Amy's surgery. There are still more questions than answers, but here is what we know.
Amy's tumor, when completely resected, was reclassified as a cancer called Pleuropulminary Blastoma (PPB). This type of cancer is exceedingly rare with only 300 cases worldwide ever diagnosed. Her original diagnosis was not a misdiagnosis and still stands as well. Her doctor explains it as the PPB 'transitioned' into a Anaplastic Embryonal Rhabdomyosarcoma tumor. The pathology is the same at a cellular level but when the whole tumor was examined it was found to be PPB. Confusing, I know. This reclassification did not change her chemo protocol. Last week we had her tumor sent to Minnesota Children's Hospital which is home to the international experts on PPB, for a second opinion concerning treatment and to confirm the diagnosis. We were waiting for this confirmation before we told Amy and all of you.
This brings us to today... PPB frequently spreads to the brain. 'Regular' Rhabdomyosarcoma rarely does. When the possibility of PPB arose a couple of weeks ago I immediately asked for an MRI to check her brain. She had not had one yet so we have nothing to compare today's MRI to. This afternoon we found out that Amy has three "spots" on her brain. There are a lot of uncertainties still about the significance of this finding. Are the spots cancer or something else (ie a side effect of chemo)? If the spots are malignant are they active or dead? If they are cancer did they spread before treatment or during? Once these questions are answered we will know more what this finding means. We know the spots are not in a place that puts her in any immediate danger. They are not causing her any problems functioning or pain - both of which are encouraging signs. Amy's oncologists are very encouraged by how well she is doing overall especially in light of this new finding. She is very strong physically and continues to gain weight and be much more active than they would expect - again encouraging signs in light of today's findings. Amy's team will conference with the neurosurgeons about what the best plan will be over the next couple of days.
We made the decision to tell Amy about the 'spots' and she is understandingly confused and angry (angry she said that she might have more cancer). Overall she is handling the news remarkably well. Please pray for peace and wisdom as we go down this new road. Please pray for wisdom as her doctors make a plan for treatment. Please pray that Amy can take part in the last week of school next week. She will be so disappointed if she has to miss it. Today she said she just wants to be a normal kid again and normal kids don't have to miss the last day of school.
We are thankful to be going through this at the #1 rated Pediatric Cancer Hospital in the country (per US News &World Report this week - thank you God for this timely confirmation that we are getting the best possible medical care for our little girl!). God is faithful and we trust Him to lead us through this time of uncertainty.
For more information on PPB visit www.ppbregistry.org
Thank you for your continued prayers and support!
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Thursday, 6/12/14: This is Susan's update for today:
It's been a long day for Amy... We started early with an MRI (which lasted 1.5 hours - she was very annoyed to have to be perfectly still for that long). Then her clinic visit and blood work. Next chemo and a transfusion (her platelet levels were low). Her white blood cell count is also very low, so we're back to being super cautious about illness. We're hoping to be heading home by 4:00 - just in time for rush hour traffic...
Sunday, 6/1/14: Here is Susan's latest update:Share This Update!
Amy was very tired and not feeling well this morning - indicators that her hemoglobin had dipped even lower. She's at Portsmouth Hospital now having a transfusion. Her white blood cell count is also dangerously low (not fixed by a transfusion), leaving her susceptible to infection. So once again, please stay clear if you have been sick. Hunter has a slight cold so we're going to be extra vigilant with hand sanitizer and have Amy wear a mask at home. Please pray that his cold does not last long, does not spread to anyone else and especially that Amy stays well. A cold or simple illness could land her in the hospital...
Friday, June 30, 2014: Here is Susan's latest update:Share This Update!
Amy has been feeling great this week! No ill effects yet from last weekends five days of chemo. We have finally figured out a perfect combination of anti nausea medicines for her. She had a great time at field day today at school (even though she had to sit out a few events because she's only four weeks post-op). She's been eating well and her weight is up to where it was just before surgery. No chemo this week. We were supposed to have an MRI today but after arriving they had to reschedule it for when she is six weeks post-op. Amy was annoyed that she missed half a day of school for nothing. Next week we go for an echocardiogram Wednesday (the chemo she had last weekend can cause heart damage so they need to monitor her heart closely) and then a two day chemo course Thursday and Friday. Thank you for continuing to keep her in prayer. God is good!
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Friday, May 16, 2014: This is Susan's latest update:
I just returned from a field trip with Amy and her class. She's tired but all in all feeling pretty good physically this week. She has been struggling with insomnia as the result of the appetite stimulants she was on, which leaves her pretty groggy during the day. She is neutropenic right now (meaning her white blood cell count is dangerously low and she has no immunity) so please no sick visitors. Two trips to Boston this past week - Tuesday to see her surgeon for a post-op visit and Thursday to see her oncology team and have chemo. Next week is a five day chemo course so we're hoping for a nice, relaxing weekend hopefully without any complications from low blood counts. Thank you for continuing to keep her in prayer!
Wednesday, 5/7/14: Here is Susan's latest update:Share This Update!
Looks like Amy will come home Friday. The chest tube came out today. Now she'll have chemo tomorrow and Friday, then home! She got to go out to the garden this afternoon.
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Tuesday, 5/6/14: This is Susan's latest update:
Still fluid and air in Amy's chest so the drain stays another day. They will X-ray again tomorrow. Her doctors also decided that they'll just keep her inpatient for her next round of chemo which is two days starting Wednesday assuming the chest tube can come out tomorrow. Hoping she'll be home later in the week! Please continue to pray for her as she continues to heal and now starts up chemo again.
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5/4/13: Here is Susan's update for today, as well as her update regarding Amy's surgery (I am sorry I have not been updating the last several days, I was out of town and away from my computer):
Seven hours later and surgery is done. The surgeon said it went "perfectly"! Amy is already awake but very groggy (they were planning on keeping her sedated tonight but they were able to control her pain with an epidural along with pain meds allowing her to be awake and without a breathing tube). The surgeon believes he removed 99% of the tumor. Although it had adhered to her heart he did NOT have to remove the covering of her heart or any part of her lung. The nerve that controls her voice box was very close but not damaged (I can confirm that she can still talk!). There may have been a slight "sprain" to the nerve that controls her diaphragm but he does not feel it was severely injured. He removed half of her thymus gland and some lymph nodes but he does not feel this will cause her any long term problems. This is all very good news - thank you God for the skilled surgeon and for protecting our little girl during surgery!
Today's(5/4/14) X-ray shows the fluid has improved but there is still some as well as a pocket of air that requires the chest tube to stay in at least another day. Amy may get a feeding tube today as well. Eating has been very difficult for her and she finally decided that the feeding tube might make life easier. Although she really doesn't like the idea of it and she's very nervous to go to school with it. We're told she would definitely need one during radiation so we're just a few weeks early. Thatch heads back to NH today which will be tough for Amy as well. He's been in Boston all week during his school vacation.
Tuesday, 4/21/14: Here is Susan's update for today:Share This Update!
At Children's Hospital for Amy's pre-op appointments today. Her surgery will be Monday April 28th. The doctor's scan shown on Facebook shows Amy's tumor in January and after three months of chemo on the left. There are a lot of unknowns going into her surgery, namely where the tumor originated and what it is attached to currently. It is much smaller but still in contact with her heart and lungs. Please pray for a peaceful weekend as Amy is now a bit nervous especially after hearing all the details today - that she will have a chest drain after surgery (this was very painful when she had it in January), the details on the incision and recovery.
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Friday, 4/18/14: Here is Susan's update for thie Good Friday:
The chemo break has been so nice this week. Amy has been eating well and enjoying school. Too bad we have to return to chemo after surgery... She had a pre-op CT scan which showed continued "dying" of the tumor and a small amount of additional shrinking. Her doctor was very pleased with the scan and says the tumor likely can't get any smaller because there is a certain amount of mass in the tissue. Amy is looking forward to celebrating Easter Sunday and then travelling to the Boston Marathon to cheer for Mrs. Hanna on Monday! Thank you God for continuing to hear our prayers!
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Tuesday, 4/15/14: Here is a message from Susan regarding the amazing Fundraiser and Silent Auction held at the Community Oven last night:
Thank you so much to everyone who helped with this special night for Amy. A special thank you to Jane Lawrence Wade, Amy Ferguson Thibodeau and Jessica Huskey, Amy loved being your assistant. It was great to see her running around and being goofy with her friends. Thatcher asked if we could do it again next Monday. We really appreciate all your support and it was really nice to catch up with so many of you in person. Thank you from the Kindstedt family!
Tuesday, 4/8/14: Here is Susan's update for today:Share This Update!
Just found out that Amy's oncologist and the surgeon have decided to hold off on chemo until after surgery. They want her strong and healthy for surgery. It will be a nice break but it will add weeks at the other end...kind of like a snow day! Amy stayed home from school today. She's still feeling quite nauseous. She's working away on her project at home and looking forward to being at school for the next few weeks!
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Monday, 4/7/14: This is Susan's update for today:
It was a tough five days for Amy but she's done and home. She's asleep right now. Some nausea and vomiting, tired and discouraged that she had to wear her IV backpack home today. She missed the Red Sox game Saturday...she threw up waiting to get in. At least it's behind her now and she doesn't have to go to Boston until next Thursday. Pray that she gets her energy back quickly and that the nausea subsides.
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Friday, 4/4/14: Here is Susan's update for today:
Amy would not let me get a nice smiling photo to show you all, but I guess her goofy face shows you she is having a good day! She and Jason are staying at the Ronald MacDonald House (Amy really wanted to check it out!). She will be getting together with her cousins this afternoon after her treatment is done. Tomorrow they will join her in the Jimmy Fund Clinic's special box suite at Fenway for a Red Sox game. So far her nausea has been manageable. Thank you for continuing to pray for Amy!
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Wednesday, 4/2/14: Here is a second update for today:
Amy's feeling fine today. She's working away on her research project again from home. This is going to be the most thorough research project about Juliette Gordon Low ever produced by a second grader! Her blood counts were excellent last night but if they drop or if she has another fever today her doctors will delay her chemo cycle. Please pray she stays healthy and is able to get her big round of chemo this weekend.
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Wednesday, 4/2/14: This is Susan's latest update:
Life is never predictable for us lately! An unexpected trip to the ER last night but all is well now. Amy threw up around 9pm last night. Then at midnight she had a slight fever of 100.6. Her doctor said to take her temp again in an hour. An hour later it was 100.4. Standard protocol when on chemo is to go to the ER for blood work and IV antibiotic with a temp over 100.4 twice in an hour. So off she went at 1am. Thankfully her bloodwork showed she was no longer neutropenic and it did not show a more serious infection. Both of these would have meant a transfer and admission to Children's. She had two IV antibiotics and was home was home by 4am. Thank you God! I'm thankful that our "little" Portsmouth hospital is big enough to take care of her now twice this week but small enough that they're not terribly busy. Now I have to break it to her that she probably shouldn't go to school this morning. Well, I'll check with her doctor first, I suppose. Then I can blame it on her... :)
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Monday, 3/31/14: Here is Susan's update for this last day of March:
Amy's hemoglobin was low so she needed a blood transfusion. So glad I asked - they arranged for it to happen at Portsmouth Hospital tonight instead of tomorrow in Boston. She was so sad about the idea of missing another day of school this week. Please pray that there are no complications (there shouldn't be) and that it moves quickly so she can still get a good nights sleep tonight. She has a five day cycle of chemo infusions starting Thursday for six hours each day, ending on Monday.
Saturday, 3/29/14: This is Susan's update from yesterday.Share This Update!
It was a fairly uneventful week! Amy went to school and had her chemo and checkup on Thursday. She is now neutropenic which means her white blood cell count is very low. She is very susceptible to infection. Please steer clear of us if you're sick and no big hugs for Amy even if you're not sick. She will have blood work again Monday. Her counts should begin to climb by then. The neutropenia was caused by last week's chemo, it occurs 7-10 days after. Her weight is down a little because of last weekend's intense vomiting. I'm pushing lots of whole milk yogurt, cheese, and desserts! Please pray that the tumor continues to shrink and that she gains weight (a feeding tube may be in her future, but we'd like to avoid it as long as possible). No need to bring us any cookies though - we have a large stash! The challenge is getting her to eat them!
Saturday, 3/22/14: Here is the latest update from Susan:Share This Update!
Amy fell asleep yesterday at 4pm and just woke up this morning at 6am! No more vomiting and a very long nights sleep. New medicine is working great! Today the visiting nurse will come to give her a shot. The shot will work to raise her white blood cell count which will fall with the chemo she had this week. She is very anxious about the shot. Please pray that her white blood cell count does not fall too low (which is dangerous and would require her to be admitted). Please also pray that she is willing and able to eat today. If she cannot keep anything down, she will have to be admitted.
Friday, 3/21/14: This is Susan's update for today:Share This Update!
Very rough night for Amy. Throwing up about every 45 minutes all night long. Our pharmacy didn't have the stronger anti-nausea medicine her doctor prescribed. They will get it in today though. Amy was so frustrated and tired. She and Jason head back to Boston this morning. Please pray we can get the nausea and vomiting under comtrol.
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Thursday, 3/20/14: Two updates in one day!
Here is the second update from Susan:
Amy had a good report from her doctor this morning and she made it in so that hopefully she won't be admitted. She does go back in the morning for another infusion. Her surgery has been scheduled for April 28th. We are thankful that she won't be in the hospital for Easter or to watch her teacher Maggie Hanna
run in the Boston Marathon with Amy as her patient partner! The chemo that she will get today is the start of a new cycle with a couple of drugs she hasn't had yet. Please pray that the side effects (nausea and vomiting) are manageable and that her white blood cell count does not go too low with the new drugs.
Thursday, 3/20/14: Happy 1st day of Spring!Share This Update!
Here is Susan's update for today.
"Amy and Jason left for Boston at 6:30. Early this morning I got an email from Amy's doctor saying that there was a mixup with our 10am appointment and if we weren't there before 9:00 Amy would have to have this round of chemo inpatient. Her infusion today will take 8 hours. Please pray for safe speedy travels in rush hour traffic so that Amy doesn't have to spend the night at the hospital."
Thank you all for your continued prayers and support!!
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Thursday, 3/13/14: Here is Susan's most recent update:
We are thanking God for another great week for Amy. She has lots of energy and her nausea has been kept under control with medication. I rescheduled her CT scan from Thursday to Friday of this week. We're hoping to avoid driving to Boston in a snow storm. So her scan will be Friday morning at 10am. Please keep her in prayer Friday morning. She will need to get another IV for the scan which is always very traumatic. Amy, on her own accord, prayed asking God to shrink the tumor so small that it can be removed laparoscopically. That would truly be a miracle.
Thursday, 3/6/14: Here is Susan's update for today:Share This Update!
Amy had a good clinic visit today for a checkup and chemo. The doctors continue to be pleased with her weight. They are impressed with her energy level and her white blood cell count continues to be high enough for school. Next week will be her CT scan which will determine the plan for surgery and radiation. Please continue to pray that the tumor is responding to chemo so that surgery can be postponed allowing for more of the tumor to be removed.
Sunday, 3/2/14:Share This Update!
I wanted to write to let you all know that after much careful thought, I have increased the fundraising goal to $60,000. I initially set the goal during the second week of Amy's medical crisis. At that time, we all still did not really know what we were dealing with and how long this journey would be. The number I came up with was completely arbitrary and was made by someone (me) who was somewhat naive about the realities of cancer and all of the ramifications of treatment. Now that I know more and have more information about what is in store for the Kindstedt family, I realize that I must increase the fundraising goal to better reflect the long-term realities of what they are facing.
Thank you to all of you who have been tirelessly praying for and supporting the Kindstedts. You will never know what your support means to them! Please continue to share this page when you can.
Saturday, 2/29/14: This is Susan's latest update:Share This Update!
Thatcher to Amy, "How come you got the bigger piece of bubble wrap to pop? That's not fair!" Amy to Thatcher, "Well Thatcher, not everything in life is fair, for example, I got cancer." Hmmm...guess she got him with that one!
Home chemo infusions are going well, but Amy is very tired and nauseous from the medication. She also has no appetite and throws up when she does eat. Please pray that this stage passes with her last infusion on Monday and that she is able to enjoy some time at school this week.
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Thursday, 2/27/14: Here is Susan's latest update:
Thatcher joined Amy at her clinic appointment today. She loved showing him around. They visited the "healing garden." She is having her chemo infusion now. This round has one infusion in Boston and then Friday through Monday at home with a visiting nurse. Please pray that the tumor shrinks significantly in the next two weeks. In two weeks she will have another CT scan to determine if the chemo she is on is working well on killing the tumor. If shrinking is not significant enough they will move surgery to sooner (April). If the tumor is responding well to the chemo they may push surgery to later in the spring, allowing the chemo to shrink it even further from her lungs and heart, which will improve the chances of the whole tumor being removed successfully. The hope is that the tumor is responding to chemo however her type of Rhabdomyosarcoma is very aggressive so if it is not responding in a dramatic way they would prefer to remove it soon. Please continue to pray for shrinking!
enough they will move surgery to sooner (April). If the tumor is responding well to the chemo they may push surgery to later in the spring, allowing the chemo to shrink it even further from her lungs and heart, which will improve the chances of the whole tumor being removed successfully. The hope is that the tumor is responding to chemo however her type of Rhabdomyosarcoma is very aggressive so if it is not responding in a dramatic way they would prefer to remove it soon. Please continue to pray for shrinking!
Sunday, 2/16/14: Here is Susan's latest update. Thank you all for your continued support and prayers!!
Friday Amy could barely stay awake for her Valentine's Party at school, but today she went snowshoeing, pulled Hunter in a sled, and had a snowball fight. Praying that all this new energy means the tumor is shrinking and taking pressure off of her lungs and heart. We are so thankful to have our old Amy back for the weekend. Amy attributes her new energy to Girl Scout cookies.
Tuesday, 2/11/14: Here is the latest update from Susan.
Saturday, Sunday and Monday Amy had her chemo infusions at home. Apparently not all of the cycles have medications that allow for home infusions but we were so thankful to be able to cut our trips to Boston from five to two for this round. We were also surprised to learn that her doctors were ok with her going to school a little this week. Monday she stayed for half the day and was proud to report she didn't fall asleep once! It was day 100 which brings with it lots of fun and she was so happy that she could be there. We return to Boston for a treatment Thursday. We are praying that the forecasted snow does not complicate our journey.
n her chest, which is very good news. Her type of Rhabdomyosarcoma is Anaplastic Embryonal and it is Stage 3 because of its location (In her chest close to major organs). It is very rare which is why it took them so long to confirm the diagnosis. Her emotional state is so much better (except when they sneak attacked her with a new IV today). The other piece of good news is that we may be able to do Saturday, Sunday and Monday infusions at home if she responds ok to the chemo today and tomorrow. We are thanking God for so much today. Please pray that the tumor continues to shrink."