The next 24 hours could mean the difference in getting turbo 3F8 for neuroblastoma into the MSKCC clinic in a year versus who knows when. Jordan and many other NB children would greatly benefit from this treatment. Arms Wide Open Cancer Foundation is running neck and neck with the current 3rd place group, USAction Education Fund, which has organized to get 16 non-profits to come together to create a machine that is trying to take all the money in every category in the Pepsi Refresh contest.
Please take one least day to vote...feel free to pass on to others who may be able to vote as well!
There are 3 ways to vote in the final 24 hours:
1. Vote via text: dial 73774 and then enter 102653 in the body of the text
2. Vote via internet: www.refresheverything.com/armswideopenchildhoodcancerfoundation (Make sure you click on "Vote for this idea" after you hear the Pepsi can opening and that the vote counter in the lower left goes from 10 to 9 meaning you cast your vote for Arms Wide Open). Plus you can vote with all your e-mails, personal and work.
3. Vote via Facebook : when you are online look for how to download the Facebook app, then vote on Facebook with your app
A win would be a great way to end September which is National Childhood Cancer Awareness Month!
Wednesday, September 29, 2010
Wednesday, September 22, 2010
Vote, Vote, Vote!
Today in the MSKCC clinic I briefly met Dena Sherwood, the woman who runs the Arms Wide Open Childhood Cancer Foundation. It was inspiring to meet someone who has been in the same battle as us and still found the energy to raise money (a lot!) for all the neuroblastoma warriors. Dena shared that Arms Wide Open has already raised $100,000 this year for MSKCC and that they are hoping to win the Pepsi Refresh Challenge in order to bring the annual total to $350,000. The Pepsi grant would be used by MSKCC for the turbo 3F8 research project. Turbo 3F8 is a super strong version of the antibody therapy Jordan attempted this past spring. Antibody therapy is a crucial treatment option for neuroblastoma and does not have the long-term side effects that come with so many of the other therapies. Dena shared that turbo 3F8 has already been developed...MSKCC just needs $600,000 to move it on to production. Production takes six months and then turbo 3F8 will be available to children in the clinic. This was wonderful to hear...but also a little sad. It is heartbreaking to know that the science is there but that money is preventing this treatment from being available.
Arms Wide Open is currently in second plase in the Pepsi refresh challenge. The top two vote recipients win a $250,000 grant so they need to maintain their current ranking until voting ends at the end of the month. You can vote for Arms Wide Open each day by texting 73774 and entering the code 102653. You can also visit the website below and vote online.
WWW.REFRESHEVERYTHING.COM/ARMSWIDEOPENCHILDHOODCANCERFOUNDATION
Arms Wide Open is currently in second plase in the Pepsi refresh challenge. The top two vote recipients win a $250,000 grant so they need to maintain their current ranking until voting ends at the end of the month. You can vote for Arms Wide Open each day by texting 73774 and entering the code 102653. You can also visit the website below and vote online.
WWW.REFRESHEVERYTHING.COM/ARMSWIDEOPENCHILDHOODCANCERFOUNDATION
Saturday, September 18, 2010
Another Update and Another Request
The results of Jordan's head MRI showed disease progression in lines with what the doctors expected to see considering the swollen eye issue. One of the doctors even thought there could be an infection component that was responsible for part of the swelling and MRI findings. Taking that into consideration, Jordan was hospitalized on Wednesday at MSKCC to start IV antibiotics. While inpatient, she continued with her course of medium-dose chemotherapy and started radiation.
Fortunately, Jordan's eye responded fairly quickly to either the chemotherapy or antibiotics and we could see 3/4 of her eye by Friday morning. Jordan was discharged Friday evening, making the two days in the hospital our shortest stay ever. This was fantastic news as being hospitalized in NYC is not as convenient as being hospitalized in Morristown...plus Jordan gets rock-star treatment at Morristown and one can get used to such spoiling. :) A big thanks to Mom-Mom who navigated NJ and NYC public transportation to come into the city each day to help out at the hospital.
It seems like lately it has been difficult to string together more than one piece of positive news...right as we were being discharged from the hospital I found out Jordan's bone marrow test showed evidence of neuroblastoma. On Monday we were stunned to learn the bone marrow involvement was extensive. This was crushing as it means Jordan's cancer has progressed despite the multiple rounds of high-dose chemotherapy that she completed this summer.
There was some debate between our oncologist the radiation oncologist on the treatment plan going forward. For now, we are going to continue with the once daily radiation treatments but the radiation oncologist is increasing the length of therapy to ensure the skull bones are adequately treated. Radiation will continue until October 5 (is it really almost October?!?). Jordan is due for her next round on chemotherapy on September 27 and will continue with the medium-dose chemotherapy since she will still be in the process of completing radiation. For now, all treatments are at MSKCC.
So there is the update and here is the request....Pepsi is sponsoring a grant contest providing $250,000 to the top two vote recipients. Arms Wide Open is a group competing for Dr. Cheung's research lab at MSKCC. Dr. Cheung invented the 3F8 antibody treatment that Jordan underwent this spring. His lab is working to find ways to make the antibodies stronger as well as to bypass the resistance issue (which caused problems for Jordan). You can vote for Arms Wide Open by texting 73774 and entering the code 102653. You can also visit the website below and vote online. Voting runs through the end of September, and you can text and vote online one time each day. Arms Wide Open is in fourth place so they only need to move two more spots to win.
WWW.REFRESHEVERYTHING.COM/ARMSWIDEOPENCHILDHOODCANCERFOUNDATION
Fortunately, Jordan's eye responded fairly quickly to either the chemotherapy or antibiotics and we could see 3/4 of her eye by Friday morning. Jordan was discharged Friday evening, making the two days in the hospital our shortest stay ever. This was fantastic news as being hospitalized in NYC is not as convenient as being hospitalized in Morristown...plus Jordan gets rock-star treatment at Morristown and one can get used to such spoiling. :) A big thanks to Mom-Mom who navigated NJ and NYC public transportation to come into the city each day to help out at the hospital.
It seems like lately it has been difficult to string together more than one piece of positive news...right as we were being discharged from the hospital I found out Jordan's bone marrow test showed evidence of neuroblastoma. On Monday we were stunned to learn the bone marrow involvement was extensive. This was crushing as it means Jordan's cancer has progressed despite the multiple rounds of high-dose chemotherapy that she completed this summer.
There was some debate between our oncologist the radiation oncologist on the treatment plan going forward. For now, we are going to continue with the once daily radiation treatments but the radiation oncologist is increasing the length of therapy to ensure the skull bones are adequately treated. Radiation will continue until October 5 (is it really almost October?!?). Jordan is due for her next round on chemotherapy on September 27 and will continue with the medium-dose chemotherapy since she will still be in the process of completing radiation. For now, all treatments are at MSKCC.
So there is the update and here is the request....Pepsi is sponsoring a grant contest providing $250,000 to the top two vote recipients. Arms Wide Open is a group competing for Dr. Cheung's research lab at MSKCC. Dr. Cheung invented the 3F8 antibody treatment that Jordan underwent this spring. His lab is working to find ways to make the antibodies stronger as well as to bypass the resistance issue (which caused problems for Jordan). You can vote for Arms Wide Open by texting 73774 and entering the code 102653. You can also visit the website below and vote online. Voting runs through the end of September, and you can text and vote online one time each day. Arms Wide Open is in fourth place so they only need to move two more spots to win.
WWW.REFRESHEVERYTHING.COM/ARMSWIDEOPENCHILDHOODCANCERFOUNDATION
Jordan hanging out on the hospital bed...she's become very good at smiling for the camera!
Playing on her slide
Who's the cool kid?!?!Tuesday, September 7, 2010
An Update and a Request
So here is an update of what has happened since Jordan relapsed...
We originally were told Jordan's relapse was isolated to a few spots on her skull that had been impacted at diagnosis. A bit later we found out there was bone marrow involvement as well. Jordan did two rounds of high-dose cyclophosphamide, topotecan, and vincristine in the hospital at Morristown...and had fever hospitalizations following each round (one lasting almost two weeks...brutal). Jordan handled the chemotherapy fairly well but started to experience some treatment side effects...blood in the urine and elevated kidney tests. These side effects seem to wax and wane a bit but are not a problem at the present.
The next set of scans at the end of July showed the bone marrow cleared but the skull spots were unchanged. Jordan moved on to a super-high-dose chemotherapy regimen of ifosfamide, carboplatin, and etoposide at Morristown. Again, Jordan had a subsequent hospitalization for fever but tolerated the chemotherapy fairly well with minor treatment side effects...low phosphorus levels so she is on an oral supplement.
Jordan started scans last week and the preliminary results showed the skull spots still unchanged. We will not get the bone marrow results until later this week and the MRI is scheduled for tomorrow. The plan for this week was to start a medium-dose chemotherapy regimen at MSKCC and make plans for radiation to the stubborn skull spots.
Craig and I were incredibly disappointed that all the chemotherapy had failed to treat the skull spots but were determined to enjoy the Labor Day weekend with Jordan and Craig's parents at the shore. And we did a very good job of enjoying and relaxing until Jordan woke up with a swollen eye yesterday. The swelling went down within a few hours of waking and did not seem to be bothering or impacting her so we decided to hold off on any ER visits.
This morning we were terrified when Jordan woke up with a completely swollen shut and puffy eye. We met with the doctors at MSKCC and the presumption is that the cancer is causing the swelling. Jordan's type of neuroblastoma is so aggressive that it is possible to have visible signs of progression even though the scans five days ago showed stable disease. They also said a small amount of growth in the skull can cause a large amount of inflammation.
Jordan started irinotecan and temozolamide chemotherapy today at MSKCC and will continue it through Saturday. The MRI is still on for tomorrow and were fortunate to get an appointment for the radiation planning session for tomorrow as well...this will allow Jordan to start the radiation treatments on Thursday. All of these treatments will be done on an outpatient basis...yea for no hospitalizations.
So here is my request...
Please pray for Jordan. I am praying that the MRI shows minimal progression and I am praying that the combination of radiation and chemotherapy will heal her cancer. I am praying for Jordan to have the strength to fight this disease and for Craig and I to support her the best we can. The radiation doctor feels the radiation has a strong likelihood of effectively treating the disease...which is encouraging because we really need this to work.
And a quick apology too...
I am sorry that I have not done a better job of updating the blog. Jordan is so fortunate to have people who care about her enough to read this blog and I should do a better job of keeping it current. This relapse has been difficult to handle and the thought of writing about it has been intimidating but we are going to try to do better.
And Jordan?
Despite everything she is doing wonderfully. She laughs and plays and dances and reads and is simply a joy to be around.
We originally were told Jordan's relapse was isolated to a few spots on her skull that had been impacted at diagnosis. A bit later we found out there was bone marrow involvement as well. Jordan did two rounds of high-dose cyclophosphamide, topotecan, and vincristine in the hospital at Morristown...and had fever hospitalizations following each round (one lasting almost two weeks...brutal). Jordan handled the chemotherapy fairly well but started to experience some treatment side effects...blood in the urine and elevated kidney tests. These side effects seem to wax and wane a bit but are not a problem at the present.
The next set of scans at the end of July showed the bone marrow cleared but the skull spots were unchanged. Jordan moved on to a super-high-dose chemotherapy regimen of ifosfamide, carboplatin, and etoposide at Morristown. Again, Jordan had a subsequent hospitalization for fever but tolerated the chemotherapy fairly well with minor treatment side effects...low phosphorus levels so she is on an oral supplement.
Jordan started scans last week and the preliminary results showed the skull spots still unchanged. We will not get the bone marrow results until later this week and the MRI is scheduled for tomorrow. The plan for this week was to start a medium-dose chemotherapy regimen at MSKCC and make plans for radiation to the stubborn skull spots.
Craig and I were incredibly disappointed that all the chemotherapy had failed to treat the skull spots but were determined to enjoy the Labor Day weekend with Jordan and Craig's parents at the shore. And we did a very good job of enjoying and relaxing until Jordan woke up with a swollen eye yesterday. The swelling went down within a few hours of waking and did not seem to be bothering or impacting her so we decided to hold off on any ER visits.
This morning we were terrified when Jordan woke up with a completely swollen shut and puffy eye. We met with the doctors at MSKCC and the presumption is that the cancer is causing the swelling. Jordan's type of neuroblastoma is so aggressive that it is possible to have visible signs of progression even though the scans five days ago showed stable disease. They also said a small amount of growth in the skull can cause a large amount of inflammation.
Jordan started irinotecan and temozolamide chemotherapy today at MSKCC and will continue it through Saturday. The MRI is still on for tomorrow and were fortunate to get an appointment for the radiation planning session for tomorrow as well...this will allow Jordan to start the radiation treatments on Thursday. All of these treatments will be done on an outpatient basis...yea for no hospitalizations.
So here is my request...
Please pray for Jordan. I am praying that the MRI shows minimal progression and I am praying that the combination of radiation and chemotherapy will heal her cancer. I am praying for Jordan to have the strength to fight this disease and for Craig and I to support her the best we can. The radiation doctor feels the radiation has a strong likelihood of effectively treating the disease...which is encouraging because we really need this to work.
And a quick apology too...
I am sorry that I have not done a better job of updating the blog. Jordan is so fortunate to have people who care about her enough to read this blog and I should do a better job of keeping it current. This relapse has been difficult to handle and the thought of writing about it has been intimidating but we are going to try to do better.
And Jordan?
Despite everything she is doing wonderfully. She laughs and plays and dances and reads and is simply a joy to be around.
Tuesday, June 22, 2010
Back At It
Jordan was admitted to Morristown Thursday for a four day course of chemotherapy. This cycle contained Cytoxan, topotecan, and vincristine. Some of these drugs she has had before, one was new. On Thursday Jordan did fantastic...eating and playing well, no vomiting....I started to wonder if the pharmacy had sent the correct drugs. By Friday afternoon the effects of chemotherapy began to hit Jordan and she had some vomiting and loss of appetite. On Saturday Jordan's red blood cell count had dropped low enough that she requried a blood transfusion.
Saturday night Jordan spiked a fever of 101. At this point we were all looking forward to going home the next day, but I was worried the fever would mean we would have to stay in the hospital for monitoring after the chemotherapy was completed. Fortunately, Jordan's white blood cells were not too low and she looked relatively healthy so we were able to leave after a dose of IV antibiotics.
Pop Pop was with us for most of this hospitalization and we were very thankful for his help! Pop Pop got Jordan a life-sized Dora the Explorer balloon...which was a lot of fun until Jordan started to try some wrestling moves on Dora. We were also forutnate to have visits from my friend Joyce and Aunt Suzette...and we waved to Mom Mom, Molly, anad Brandi out the window as they were recovering from infections and too young to visit.
While we were in the hospital we were very excited and relieved to learn Jordan's bone marrow biopsies came back clear. This means the two spots in her skull are the only two places where the neuroblastoma appears to be active. We are hopeful this means Jordan's relapse is more an undertreatment issue rather than spread of disease. We also learned that Jordan's course of radiation will likely occur after the second round of high-dose chemotherapy.
Most days I feel a bit in a daze and Jordan's relapse doesn't seem like reality. I keep thinking to myself that I can't believe we are back here so soon...back to the frequent hospitalizations, the watching for fever, the long transfusions, the daily shots... I am sad that the swimming lessons, play dates, and trips to the shore that we had planned for Jordan will have to be put on hold. But I am extrememely grateful that Jordan is doing okay and that the relapse and chemotherapy have not dampened her spunk or determination.
Saturday night Jordan spiked a fever of 101. At this point we were all looking forward to going home the next day, but I was worried the fever would mean we would have to stay in the hospital for monitoring after the chemotherapy was completed. Fortunately, Jordan's white blood cells were not too low and she looked relatively healthy so we were able to leave after a dose of IV antibiotics.
Pop Pop was with us for most of this hospitalization and we were very thankful for his help! Pop Pop got Jordan a life-sized Dora the Explorer balloon...which was a lot of fun until Jordan started to try some wrestling moves on Dora. We were also forutnate to have visits from my friend Joyce and Aunt Suzette...and we waved to Mom Mom, Molly, anad Brandi out the window as they were recovering from infections and too young to visit.
While we were in the hospital we were very excited and relieved to learn Jordan's bone marrow biopsies came back clear. This means the two spots in her skull are the only two places where the neuroblastoma appears to be active. We are hopeful this means Jordan's relapse is more an undertreatment issue rather than spread of disease. We also learned that Jordan's course of radiation will likely occur after the second round of high-dose chemotherapy.
Most days I feel a bit in a daze and Jordan's relapse doesn't seem like reality. I keep thinking to myself that I can't believe we are back here so soon...back to the frequent hospitalizations, the watching for fever, the long transfusions, the daily shots... I am sad that the swimming lessons, play dates, and trips to the shore that we had planned for Jordan will have to be put on hold. But I am extrememely grateful that Jordan is doing okay and that the relapse and chemotherapy have not dampened her spunk or determination.
Wednesday, June 16, 2010
Relapse
Jordan had her first set of follow-up scans this week. We were very disappointed to learn Jordan has relapsed. The MIBG and MRI scans show two spots on her skull. It appears they are the same spots she had on her skull at diagnosis. This could be good, indicating the cancer has not spread to new areas. We will not get the results of the bone marrow biopsy until later this week; we are praying that the bone marrow is clear.
Our plan is to start high-dose chemotherapy tomorrow at Morristown. Jordan will be an inpatient for four days to get the three medications for this regimen. We will do two courses of this regimen followed by three to five courses of a lower dose regimen. Fortunately, the lower-dose chemotherapy will be done on an outpatient basis. Jordan will also have a course of radiation to her skull at MSKCC, likely between the first and second rounds of chemotherapy. Dr. Kushner advised MSKCC has a lot of experience radiating the skull without negatively impacting the brain.
The relapse rate with neuroblastoma is so high that we can't say we are completely surprised Jordan relapsed, we just did not expect it to be so soon. We are heartbroken that our sweet baby is re-entering the world of active treatment. Dr. Kushner seems very optimistic that we will be able to get Jordan back to remission quickly. He also said Jordan looks great and her counts are good, both positive signs. We are praying that in five years we look back and can say that as far as relapses go, Jordan's wasn't too bad.
Our plan is to start high-dose chemotherapy tomorrow at Morristown. Jordan will be an inpatient for four days to get the three medications for this regimen. We will do two courses of this regimen followed by three to five courses of a lower dose regimen. Fortunately, the lower-dose chemotherapy will be done on an outpatient basis. Jordan will also have a course of radiation to her skull at MSKCC, likely between the first and second rounds of chemotherapy. Dr. Kushner advised MSKCC has a lot of experience radiating the skull without negatively impacting the brain.
The relapse rate with neuroblastoma is so high that we can't say we are completely surprised Jordan relapsed, we just did not expect it to be so soon. We are heartbroken that our sweet baby is re-entering the world of active treatment. Dr. Kushner seems very optimistic that we will be able to get Jordan back to remission quickly. He also said Jordan looks great and her counts are good, both positive signs. We are praying that in five years we look back and can say that as far as relapses go, Jordan's wasn't too bad.
Sunday, May 2, 2010
The Roller Coaster
I'm a bit behind on blog posts. This is 75% due to us really enjoying being able to take Jordan out into public again and 25% due to me returning to work part-time and feeling lazy in the evenings. But I do have several posts half done so hopefully I will get some more energy.
The past two weeks have been a bit of a roller coaster for our family. On Monday two weeks ago Craig took Jordan to MSKCC for her second round of antibody therapy. I prepared Craig for what to expect with this difficult, painful treatment and his father was accompanying him for the day. When it came time for the infusion Monday morning nothing happened...Jordan completely slept through the treatment. While it is a bit sick to hope your child has pain, not having pain can indicate a patient has developed resistance to the antibodies. Four cycles of antibodies is considered the necessary minimum and Jordan has only completed one. With antibody therapy being one of the best ways to prevent relapse, Craig and I were quite disheartened at the prospect of Jordan already being resistant.
On Tuesday I went to clinic with Jordan feeling a fair amount of anxiety around whether or not she would experience pain during the infusion...but we didn't get to find out. Right when we arrived Jordan started moaning and breathing very fast. When checked, her oxygen saturation was only in the high 80's. Six breathing treatments later Jordan was still requiring oxygen to keep her saturation in the 90's. Dr. Kushner decided to hold the antibody therapy for the day and admit her to the hospital for observation.
Unfortunately, Jordan's respiratory status continued to deteriorate rapidly throughout the day. Jordan responded during treatments but her breathing and oxygen tanked as soon as they were over. Her entire little body was heaving with each breath...the doctor was worried that at some point she would run out of energy. By the end of the day Jordan required the BIPAP machine to breath...BIPAP provides pressurized oxygen to make sure the oxygen gets into the lungs. We were also transferred across the street to the PICU at Cornell in case Jordan continued to deteriorate and needed to be put on a respirator.
Tuesday was definitely a rough day...it was terrifying how Jordan got so sick so quickly. Thankfully she began to improve on Wednesday. The PICU attending diagnosed this episode as a viral respiratory infection/asthma attack. By Thursday Jordan was still on oxygen but off the BIPAP machine and her biggest issue was repeated vomiting from all the mucus in her lungs. Since her breathing was much improved, Jordan was transferred back to MSKCC Thursday evening.
Jordan was hospitalized at MSKCC through Sunday evening, which was about a day longer than we were hoping. The hospital team did not seem to be in a hurry to send Jordan home even though she seemed back to normal to us. If a child is walking laps around the nurses station, trying to scale the crib like it's a mountain, and not requiring any treatments that couldn't be done at home, I would think that child is ready to be discharged...but what do I know. :)
Our plan for this past week was to allow Jordan a little time to recuperate and then start radiation on Thursday. The radiation appointments were previously scheduled so Dr. Kushner felt it was best to move forward with them first before returning to the antibody therapy. Unfortunately, things changed on Wednesday. We found out that the radiation was being bumped until Friday (not a big deal)....and that a blood test from the hospitalization showed Jordan does have resistance to the antibody therapy (kinda a big deal).
We are very, very disappointed that Jordan has already developed resistance. The possibility of relapse is constantly on our mind and not being able to go forward with antibody therapy is not helping to alleviate our anxiety. The resistance can wax and wain so Jordan will have another blood test in a few weeks and we are praying that the resistance will be diminished at that point.
Lounging on the IV pole...Jordan turns everything into a chair
Admiring her new harmonica
The harmonica came from Jack, an extremely nice nursing tech who wears a cowboy hat and western shirt each day
The past two weeks have been a bit of a roller coaster for our family. On Monday two weeks ago Craig took Jordan to MSKCC for her second round of antibody therapy. I prepared Craig for what to expect with this difficult, painful treatment and his father was accompanying him for the day. When it came time for the infusion Monday morning nothing happened...Jordan completely slept through the treatment. While it is a bit sick to hope your child has pain, not having pain can indicate a patient has developed resistance to the antibodies. Four cycles of antibodies is considered the necessary minimum and Jordan has only completed one. With antibody therapy being one of the best ways to prevent relapse, Craig and I were quite disheartened at the prospect of Jordan already being resistant.
On Tuesday I went to clinic with Jordan feeling a fair amount of anxiety around whether or not she would experience pain during the infusion...but we didn't get to find out. Right when we arrived Jordan started moaning and breathing very fast. When checked, her oxygen saturation was only in the high 80's. Six breathing treatments later Jordan was still requiring oxygen to keep her saturation in the 90's. Dr. Kushner decided to hold the antibody therapy for the day and admit her to the hospital for observation.
Unfortunately, Jordan's respiratory status continued to deteriorate rapidly throughout the day. Jordan responded during treatments but her breathing and oxygen tanked as soon as they were over. Her entire little body was heaving with each breath...the doctor was worried that at some point she would run out of energy. By the end of the day Jordan required the BIPAP machine to breath...BIPAP provides pressurized oxygen to make sure the oxygen gets into the lungs. We were also transferred across the street to the PICU at Cornell in case Jordan continued to deteriorate and needed to be put on a respirator.
Tuesday was definitely a rough day...it was terrifying how Jordan got so sick so quickly. Thankfully she began to improve on Wednesday. The PICU attending diagnosed this episode as a viral respiratory infection/asthma attack. By Thursday Jordan was still on oxygen but off the BIPAP machine and her biggest issue was repeated vomiting from all the mucus in her lungs. Since her breathing was much improved, Jordan was transferred back to MSKCC Thursday evening.
Jordan was hospitalized at MSKCC through Sunday evening, which was about a day longer than we were hoping. The hospital team did not seem to be in a hurry to send Jordan home even though she seemed back to normal to us. If a child is walking laps around the nurses station, trying to scale the crib like it's a mountain, and not requiring any treatments that couldn't be done at home, I would think that child is ready to be discharged...but what do I know. :)
Our plan for this past week was to allow Jordan a little time to recuperate and then start radiation on Thursday. The radiation appointments were previously scheduled so Dr. Kushner felt it was best to move forward with them first before returning to the antibody therapy. Unfortunately, things changed on Wednesday. We found out that the radiation was being bumped until Friday (not a big deal)....and that a blood test from the hospitalization showed Jordan does have resistance to the antibody therapy (kinda a big deal).
We are very, very disappointed that Jordan has already developed resistance. The possibility of relapse is constantly on our mind and not being able to go forward with antibody therapy is not helping to alleviate our anxiety. The resistance can wax and wain so Jordan will have another blood test in a few weeks and we are praying that the resistance will be diminished at that point.
Lounging on the IV pole...Jordan turns everything into a chair
Exploring under the crib
Watching the Peanut Butter Stomp on Yo Gabba Gabba
Jordan's interpretation of the Peanut Butter Stomp....there's a lot of thought going into this dance
Admiring her new harmonica
The harmonica came from Jack, an extremely nice nursing tech who wears a cowboy hat and western shirt each day
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